23Rd Alzheimer Europe Conference Living Well in a Dementia-Friendly Society Malta / 10-12 October 2013

23rd Alzheimer Europe Conference Living well in a dementia-friendly society Malta / 10-12 October 2013

Programme and Abstract Book

MALTA DEMENTIA SOCIETY The 23rd Alzheimer Europe Conference is organised under the Distinguished Patronage of His Excellency Dr George Abela, President of Malta.

The 23rd Alzheimer Europe Conference in St. Julian’s, Malta has received funding from the European Union, in the framework of the Public Health Programme. Living well in a dementia-friendly society / Malta 2013

Final Programme / Welcome

Welcome

Dear colleagues and friends, projects, initiatives and actitivities. In addition, we selected over 50 additional abstracts which will be presented as posters. It gives us great pleasure to welcome you to the 23rd Annual Conference of Alzheimer Europe which takes place in St. Julian’s, Our conferences have established themselves as great networking Malta from 10 to 12 October 2013. opportunities and we hope that this year will be no exception. We are truly grateful to the academics, researchers and healthcare The motto of this year’s conference is “Living well in a dementia- professionals, but also people with dementia and carers, who friendly society”. We will explore how our perceptions and image will be participating in this year’s conference. It is thanks to their of dementia have an impact on the lives of people with dementia collective contributions that we have witnessed a true shift in public and their carers. We will showcase examples of good practice with perceptions over the past years and a growing commitment by regard to the involvement of people with dementia in activities and national and European policy makers to give dementia the attention projects and the establishment of dementia friendly communities. it so rightly deserves. The importance of ethical issues and a rights-based legal framework will also be addressed. By putting people first, we want to ensure For us, our conference will be another important milestone in our that our conference provides useful advice and contributes towards campaign to make dementia a public health priority and we look improving the quality of life of people with dementia. forward to your input and ideas.

Innovation, prevention and integrated care are additional key We wish you all a successful conference with the opportunity of themes of our conference. These have been identified as priorities by meeting new and old friends and increasing our understanding of the “European Innovation Partnership on Active and Healthy Ageing” dementia. and this conference hopes to establish links with and provide input to this key initiative of the European Commission. Heike von Lützau-Hohlbein Chairperson / Alzheimer Europe In this context, we would also like to thank the European Union for the generous support it provided via the health programme for our Charles Scerri conference. It is thanks to this support that we have been able to Secretary / Malta Dementia Society offer very competitive registration rates to all participants.

We were delighted by the great response to our call for abstracts and were able to put together a truly inspiring programme with over 110 speakers sharing their latest research and presenting their

Heike von Lützau-Hohlbein Charles Scerri

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Final Programme / Forewords Forewords

Europeans are living longer. The European Commission’s 2012 Ageing Furthermore, the stakeholder-driven European Innovation Report projected that the population aged 65 and above will almost Partnership on Active and Healthy Ageing has made the prevention double by 2060 in the EU. The number of people aged 80 years and of functional and cognitive disease one of its priorities, and it has above is expected to almost triple. This development will also lead to set itself the objective of reaching at least 1.000 care providers a major increase in the number of people with Alzheimer’s disease. across the EU by 2015.

In the context of the European initiative on Alzheimer’s Disease and The 23rd Alzheimer Europe Conference “Living well in a dementia- other dementias from 2009, the Commission launched several EU- friendly society” from 10th to 12th of October 2013 in Malta will be activities over the past years to support Member States in addressing a key opportunity to bring these action strands together and to the needs of the growing number of people with dementia. enable many experts, stakeholders and policymakers working in this important field to exchange and discuss their findings, practices First, the “ALCOVE”-Joint Action under the EU-Health Programme, and experiences. conducted this Spring, brought together 19 Member States to develop concrete recommendations and identify good practices in Tonio Borg four fields: epidemiology of dementia; timely diagnosis; support EU Commissionner for Health systems on behavioural and psychological symptoms in dementia; the rights, autonomy and dignity of people with dementia.

In addition, the EU Joint Programme Initiative – Neurodegenerative Disease Research is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases, in particular Alzheimer’s disease. It aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.

Tonio Borg

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Final Programme / Forewords

It is an honour for all Maltese citizens, especially those working National efforts to deal with dementia must also be implemented. in the field of ageing, that Malta was designated to host the It is important that each country takes the initiative to ensure that 23rd Annual Conference of Alzheimer Europe on “Living well in a citizens can live well in a dementia-friendly society. In Malta, the dementia-friendly society”. finalisation of a national Dementia Strategy is in an advanced stage, and should be completed and launched in mid 2014. This National There is no doubt that the coming of population ageing constitutes Strategy will enable Malta to set up protocols to achieve a timely a human triumph. Population ageing, however, is not devoid of diagnosis of dementia, as well as developing information courses particular and incisive challenges. Despite increasing health life on dementia for all health-care professions. expectancies, a significant percentage of older adults does continue to experience a range of physical and cognitive challenges. Indeed, In conclusion, I hope that this conference will generate much mental there are currently more than seven million people with dementia in stimulus, and that participants will have opportunities to learn the European Union, with studies predicting that this number will about the various good practices that exist in the countries being double in less than twenty years. represented herein. Last but not least, special gratitude goes to the Alzheimer Europe and Malta Dementia Society for organising this Alzheimer Europe’s annual conferences are to be supported conference, and I wish them more success in their future work. without reservation because dementia is best tackled as a common challenge, with each country roping in its resources to support the Franco Mercieca European Commission’s European Initiative on Alzheimer disease Parliamentary Secretary for Rights of Persons with Disability and other dementias. It is paramount that we join forces to ensure and Active Ageing that better knowledge about dementia whilst combatting against the stigma surrounding this illness, guarantee early diagnosis, support and treatment for people with dementia and their carers, and develop services that meet ongoing and changing needs. This guarantees a shared European effort to improving knowledge and coordination of social and health services focusing on dementia.

Franco Mercieca

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Final Programme / Organisers

Organisers

Host organisations Organising committee

The 23rd Alzheimer Europe Conference -- Stephen Abela, Malta Dementia Society, Malta in St. Julian’s,Malta is organised by: -- Antonia Croy, Alzheimer Austria, Austria -- Jean Georges, Alzheimer Europe, Luxembourg -- Gwladys Guillory, Alzheimer Europe, Luxembourg Alzheimer Europe -- Iva Holmerová, Czech Alzheimer‘s Society, Czech Republic 145, route de Thionville -- Charles Scerri, Malta Dementia Society, Malta L-2611 Luxembourg -- Henry Simmons, Alzheimer Scotland, United Kingdom Tel.: +352-29 79 70 Fax: +352-29 79 72 [email protected] Programme committee www.alzheimer-europe.org Chairperson and -- Dr. Charles Scerri, Malta Dementia Society, Malta Malta Dementia Society c/o Room 135 Members Pharmacy Building University of Malta -- Dr. Stephen Abela, Karin Grech Rehabilitation Hospital, Tal-Pieta‘, Msida MSD 2080 Malta Malta -- Ms. Rosette Bonello, International Institute on Aging, Valletta, [email protected] Malta www.maltadementiasociety.org.mt -- Prof. Murna Downs, University of Bradford, Bradford, United King- dom -- Prof. Dr. Rose-Marie Dröes, VU University Medical Center, Amsterdam, Netherlands -- Mr. Jean Georges, Alzheimer Europe, Luxembourg -- Dr. Dianne Gove, Alzheimer Europe, Luxembourg -- Dr. Iva Holmerová, Czech Alzheimer‘s Society, Prague, Czech Re- public -- Prof. Steve Iliffe, UCL Dept of Primary Care & Population Health, London and UK Dementias & Neurodegenerative Diseases Re- search Network DeNDRoN, London, United Kingdom -- Prof. José Luis Molinuevo, Pasqual Maragall Foundation & Hospital Clínic, Barcelona, Spain -- Ms. Helga Rohra, European Working Group of People with Demen-

tia, Munich, Germany

i -- Mr. Anthony Scerri, University of Malta, Msida, Malta w g -- Prof. Magda Tsolaki, Aristotelian University, Thessaloniki, Greece in e b d -- Prof. Dr. Frans RJ Verhey, School for Mental Health and Neuro- Doing to an science (MHeNS)/Alzheimer Centre Limburg, Maastricht University MALTA DEMENTIA SOCIETY Medical Center, Maastricht, Netherlands -- Dr. Anthony Zahra, Mater Dei Hospital, Msida, Malta

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Final Programme / Practical Information

Practical Information

Information for people with dementia Climate

Meeting room for people with dementia Malta enjoys a Mediterranean climate. The weather is generally A quiet room will be reserved for the sole use of people with pleasant in October. dementia and their guests. This room will be located on the ground floor, next to the info desk and conference secretariat. Coffee breaks Electricity will also be served in this room. The electrical current in Malta is 220 volts (50Hz). Plugs and sockets Conference language are the same as in the United Kingdom. If your equipment requires different voltage, you will need an electrical transformer. The official language of the conference is English. Insurance Accreditation and certificates Please check the validity of your own travel insurance. The conference This conference is not CME (Continuing Medical Education) organisers cannot accept liability for personal injuries sustained or accredited. Certificates for participation will be available at the loss of/damage to property belonging to conference delegates or registration desk accompanying persons.

Conference Venue Passport and visa requirements

The conference will take place in: All travellers to Malta will need a passport or identity card valid for at Hilton Malta least 90 days following their departure date. Portomaso St Julians Information on visa requirements is available on: http://www. PTM 01, Malta foreign.gov.mt/Visa_Applications www.hiltonmaltahotel.com

Currency

The currency in Malta is the Euro (EUR). Credit cards are widely accepted in Malta.

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Final Programme / Conference Venue

Conference Venue

Level 5 - (Ground Floor) - Info Desk & Conference secretariat COFFEE BREAK AND LUNCH AREA - Registration - Exhibition Area - Spinola Suite - Meeting room - Perellos - Meeting room for people with dementia SPINOLA SUITE - Coffee Break and Lunch area - Spinola Suite

EXHIBITION AREA

TOILETS

ELEVATOR MAIN LOBBY GRANDMASTER SUITE

INFO DESK & CONFERENCE SECRETARIAT

MEETING ROOM FOR PEOPLE WITH DEMENTIA REGISTRATION

PERELLOS TOILETS

ELEVATOR

st GRANDMASTERS Level 6 - (1 floor) FOYER - Plenary room - Grandmaster Suite VILHENA

- Meeting rooms - Vilhena & Wignacourt BREAK OUT LOBBY WIGNACOURT

PINTO VERDALA GRANDMASTERS BALCONY

ELEVATOR Level 7 - (2nd Floor)

TOILETS - Meeting rooms - Verdala & Pinto

TERRACE

8 Living well in a dementia-friendly society / Malta 2013

Final Programme / Sponsors

Sponsors

Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the support they have received for the 23rd Alzheimer Europe Conference.

Public support This conference has received funding from the European Union in the framework of the Public Health Programme and from the Maltese Ministry of Finance

Gold sponsor Lilly

Silver sponsor Avanir Pharmaceuticals

Bronze sponsors GE Healthcare, Piramal Imaging

Other support Malta Tourism Authority

Official carrier Lufthansa

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Final Programme / Programme at a glance P5. INTERDEM for care -Psychosocial people with dementia Pinto P4. Assistive technologies Verdala P3. Perceptions and image and image P3. Perceptions dementia of INTERDEM Meeting Only Invitation INTERDEM Meeting Only Invitation Vilhena Lunch Welcome Reception Welcome Coffee break and poster exhibition PO1 and PO2 and poster break Coffee Friday, 11 October 2013 11 October Friday, P2. Preventing dementia P2. Preventing SS2: STAR – European – European STAR SS2: Training Dementia Care Alzheimer Europe Meeting Annual General Only Invitation Wignacourt Thursday, 10 October 2013 10 October Thursday, P1.From diagnosis to post- diagnosis to P1.From diagnostic support SS1: Nothing about us Nothing SS1: without us – European People of Group Working with Dementia Perellos Opening Ceremony Care PL1: Integrated PL2: Prevention Grandmaster Suite Grandmaster Programme at a glance a at Programme 14.00–15.30 8.00–13.00 14.00–17.00 18.00-19.00 19.00-20.30 8.30–10.00 10.00–10.30 10.30–12.00 12.00–13.00 13.00–14.00 Time

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Final Programme / Programme at a glance 1 P20. Malta Dementia Society P10. ALCOVE – Alzheimer P10. ALCOVE in Valuation Cooperative Europe P15. Mediterranean Alzheimer’s Alliance P19. Involving people with P19. Involving dementia P9. Dementia and the arts P14. New Psychosocial interventions P18. Legal and ethical issues P8. Dementia-friendly communities P13. Dementia strategies Lunch Coffee break and poster exhibition PO1 and PO2 and poster break Coffee Coffee break and poster exhibition PO3 and PO4 and poster break Coffee Coffee break and poster exhibition PO3 and PO4 and poster break Coffee Saturday, 12 October 2013 12 October Saturday, P17. Preventing Preventing P17. and problems behavioural hospitalisation P7. Research with people Research P7. with dementia carer P12. Preventing burnout WS1. Whose Shoes? P16. Residential care P16. Residential P6. Care in the community P6. Care training P11. Carer patient of Role SS3. in clinical groups advocacy trial education PL3. Innovation and PL3. Innovation dementia PL4. Dementia friendly society Closing ceremony This parallel session will partly This parallel be held in Maltese. 10.00–10.30 10.30–12.00 14.00–15.30 15.30–16.00 16.00–17.15 17.15–17.30 1 15.30–16.00 16.00–17.30 8.30–10.00 12.00–13.00 13.00–14.00

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Final Programme / Detailed Programme Detailed Programme

Thursday, 10 October 2013 Friday, 11 October 2013

8.00–13.00 8.30–10.00 (Grandmaster Suite) Plenary Session PL1: Integrated Care (Vilhena): INTERDEM Meeting Chairperson: Iva Holmerová (Czech Republic) 9.00–12.00 PL1.1. Angiolina Foster (Scottish Government): The commitment of (CC Board Room): Alzheimer Europe Board Meeting the Scottish Government to post-diagnostic support PL1.2. Chris Gastmans (Belgium): Dignity-enhancing care for per- 14.00–17.00 sons with dementia and its application to advance directives (Wignacourt): Alzheimer Europe Annual General Meeting PL1.3. Gráinne McGettrick (Ireland): Dementia Palliative Care: Con- sensus building and signposting the future direction in Ire- 14.00–17.00 land (Vilhena): INTERDEM Meeting PL1.4. Jacqueline Parkes (United Kingdom): Improving access, care pathways and social care for people with young onset de- 18.00-19.00 mentia (Grandmaster Suite): Opening Ceremony 10.00–10.30 Welcome by: Coffee break and poster exhibition • Stephen Abela, Chairperson, Malta Dementia Society (Integrated care: PO1.1.-PO1.16) • Heike von Lützau-Hohlbein, Chairperson, Alzheimer Europe • Helga Rohra, Chairperson, European Working Group of People with PO1.1. Chris Nugent (United Kingdom): The evaluation of a visual Dementia editor for carers of people with dementia in the design of home based care Address by: PO1.2. Iris Hochgraeber (Germany): Low-threshold support services • His Excellency Dr George Abela, President of Malta for community-dwelling people with dementia in Germany – Volunteers turning into professionals Short break PO1.3. Michel Olivier (France): Alzheimer’s caregivers health status in agriculture-related population of Brittany Opening statements by: PO1.4. Marie-Christine Closon (Belgium): Accompanying card for • Hon. Dr Godfrey Farrugia, Minister for Health older persons staying at home : Coordination, prevention • Hon. Ms Marie-Louise Coleiro Preca, Minister for the Family and and education tool for accompanying and allowing older per- Social Solidarity sons being active • Hon. Dr Franco Mercieca, Parliamentary Secretary for the Rights of PO1.5. Phuong Leung (United Kingdom): Social support group inter- Persons with Disability and Active Ageing ventions in people with dementia and mild cognitive impairment: A systematic review and meta-analysis Keynote lecture: PO1.6. Ingo Kilimann (Germany): Effectiveness of a newly created Martin Seychell, Deputy Director General, DG Health and Consumers, curriculum for caregiver intervention in Mecklenburg-West- European Commission: The European Union’s contribution to ern Pomerania addressing the challenge of dementia and Alzheimer’s disease PO1.7. Siwaporn Chankrachang (Thailand): Multimodal nondrug therapy on dementia symptoms in nursing home residents 19.00–20.30 with degenerative dementia in Thailand Welcome Reception PO1.9. Nikos Degleris (Greece): Population based norms by age and education for the MMSE. Ilion, Helioupolis Municipalities Hellenic Study (Il.Hel.M.Hel.St.) PO1.10. Kristina Vella (Malta): The utility of cognitive tests in predicting safety to drive in people diagnosed with dementia PO1.11. Karin Naldahl (Denmark): Dementia curriculum development in nursing baccalaureate study

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Final Programme / Detailed Programme

PO1.12. Ursula Span (Austria): Singular and socially oriented group 14.00–15.30 living for persons with dementia vs traditional nursing (Perellos) Parallel Session P1: From diagnosis to post- home- a pilot study diagnostic support PO1.13. Stefanie Auer (Austria): Dementia Service Centers in Austria: A comprehensive Support Model for Persons with Dementia Chairperson: Carmelo Aquilina (Malta) and their Carers P1.1. Horst Christian Vollmar (Germany): Changing attitudes to- PO1.14. Marjolein Gysels (Netherlands): What influences place of care wards dementia in general practice and death of people with dementia? A systematic review of P1.2. May-Hilde Garden (Norway): Facing the challenges together: A qualitative evidence family training programme for younger people with dementia PO1.15. Marjolein Gysels (Netherlands): Where do we start with the and their carers improvement of care for frail, older people: action points P1.3. Krista Pajala (Finland): Network of memory expert and support from the Dignity Network Group centres provides information and guidance in Finland PO1.16. Jon Boon (United Kingdom): Designing for dementia P1.4. Dawn Brooker (United Kingdom): Evidence based recom- PO1.17. Sophie Hodge (United Kingdom): Findings from the National mendations for timely diagnosis of dementia: Benchmarking Audit of Memory Services against the ALCOVE recommendations P1.5. Milena von Kutzleben (Germany): How do family carers of 10.30–12.00 community-dwelling people with dementia perceive the on- (Grandmaster Suite) Plenary Session PL2: Prevention set of the disease? Results from a qualitative study using a hermeneutic approach Chairperson: Charles Scerri (Malta) P1.6. Steve Iliffe (United Kingdom): Does tailored education im- PL2.1. Martin Orrell (United Kingdom): Prevention of institutionalisa- prove the diagnosis and management of dementia in general tion and hospitalisation: What place for case management? practice? Findings from the EVIDEM-ED pragmatic cluster RCT – Findings of a Cochrane Review PL2.2. Tiia Ngandu (Finland): An overview of our current understand- 14.00–15.30 ing of the prevention of dementia (Wignacourt) Parallel Session P2: Preventing dementia PL2.3. Armelle Leperre-Desplanques (France): Preventing behavioural problems and avoiding the use of anti-psychotics – the Tool- Chairperson: Charles Scerri (Malta) box of the ALCOVE project P2.1. Frans Verhey (Netherlands): Risk factors for dementia: A sys- PL2.4. Myrra Vernooij-Dassen (Netherlands): Preventing carer burn- tematic literature review and Delphi expert consensus out: from co-victim treatment to carer empowerment P2.2. Angelica Staniloiu (Germany): Healthy memory, healthy aging: The importance of proper memory processing in age 12.00–13.00 P2.3. Lorraine Boran (Ireland): Low cognitive activity as a risk factor Lunch in cognitive decline P2.4. Emel Koseoglu (Turkey): Lipid soluble vitamins, lipids and 13.00–14.00 body mass index in Alzheimer and vascular dementia (Perellos) Special Symposium SS1: P2.5. Georgette-Marie Camilleri (Malta): Polyphenols in the preven- “Nothing about us without us”, the European Working Group tion of Alzheimer’s disease – some food for thought of People with Dementia P2.6. Jana Povová (Czech Republic): Epidemiology and genetics of This symposium is organised by Alzheimer Europe’s European Alzheimer’s disease Working Group of People with Dementia (EWGPWD) 14.00–15.30 13.00-14.00 (Vilhena) Parallel Session P3: Perceptions and image of (Wignacourt) Special Symposium SS2: dementia STAR – European Dementia Care Training This symposium is organised by the STAR Consortium Chairperson: Dianne Gove (Luxembourg) P3.1. Olivier Constant (Belgium): How to change the dominant perceptions of dementia – presentation of two recognised good practices P3.2. Anthony Scerri (Malta): Evaluation of dementia knowledge, at-

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Final Programme / Detailed Programme

titudes and educational needs among nursing students 15.30–16.00 P3.3. Debby Gerritsen (Netherlands): Dementia in the movies: por- Coffee break and poster exhibition trayal of life in an institution (Prevention: PO2.1-PO2.14) P3.4. Laëtitia Ngatcha-Ribert (France): Perceptions of Alzheimer’s disease in the media and in the cultural productions: evolu- PO2.2. Angelica Staniloiu (Germany): Dissociative amnesia and de- tions from 2008 to 2013 mentia: Is there a link? P3.5. Patricia Mc Parland (United Kingdom): Dementia, What Comes PO2.5. Kun Zou (Japan): Angiotensin type 1a receptor deficiency to Mind? ameliorates amyloid plaque formation P3.6. Stephen Cutler (USA): Concerns about cognitive functioning, PO2.6. Ben Bahr (USA): Positive lysosomal modulator enhances dementia worries, and psychological well-being clearance of toxic proteins in both Alzheimer’s and Parkin- son’s disease mouse models 14.00–15.30 PO2.8. Vasiliki Orgeta (United Kingdom): Does physical activity re- (Verdala) Parallel Session P4: Assistive technologies duce burden in carers of people with dementia: A systematic review and meta-analysis Chairperson: Heike von Lützau-Hohlbein (Germany) PO2.9. Elena de Andrés-Jiménez and Rosa Maria Limiñana-Gras P4.1. Mary Connolly (Ireland): “INDEPENDENT – The Alzheimer Soci- (Spain): Emotional and motivational aspects of coping with ety telecare experience” dementia in parents or partners P4.2. Cornelia Schneider (Austria): Electronic assistance services for PO2.10. Nikos Degleris (Greece): Ilion epidemic study: A new screen- people with dementia ing test for cognitive deficits P4.3. Phillip Hartin (United Kingdom): MedRAM: An autonomous PO2.11. Anastasia Bougea (Greece): A rare presentation of an a-synu- medication management framework to schedule, remind and clein A53T positive sibling of new Greek family with severe monitor adherence cortical atrophy and elevated total-tau protein P4.4. Lisa van Mierlo (Netherlands): DEM-DISC: an ICT tool for cus- PO2.12. Siwaporn Chankrachang (Thailand): Meeting the needs of ru- tomised advice on care and welfare services ral caregivers: The development and evaluation of an Alzhe- P4.5. Sigrid Aketun (Norway): Assistive Technology (Welfare Technol- imer’s care-giving series ogy) and Dementia – Experiences from Alma´s House P4.6. Ben Hicks (United Kingdom): Using gaming technology to 16.00–17.30 benefit people with dementia (Perellos) Parallel Session P6: Care in the community

14.00–15.30 Chairperson: Stefanie Auer (Austria) (Pinto) Parallel Session P5: INTERDEM - Improving and pro- P6.1. Charles Scerri (Malta): Knowledge and therapeutic manage- moting psychosocial care for persons with dementia ment of Alzheimer’s disease among community pharmacists in the Maltese islands Chairperson: Myrra Vernooij-Dassen (Netherlands) P6.2. James Pearson (United Kingdom): Delivering integrated de- P5.1. Myrra Vernooij-Dassen (Netherlands): Improving and promot- mentia care in Scotland: The 8 pillars model of community ing psychosocial care for persons with dementia support P5.2. Rabih Chattat (Italy): Psychosocial approaches and memory P6.3. Marijke van Dijk (Netherlands): Evaluation of the transition of clinics: from knowledge to practice. A comparison between institutional psychogeriatric day care into easy-access com- Italy and UK. munity-based support centres for people with dementia and P5.3. Stefanie Auer (Austria): Promoting psychosocial care through their carers; a multicenter study a Dementia Service Centre Model P6.4. Ursula Span (Austria): Singular and socially oriented group liv- P5.4. Esme Moniz-Cook (United Kingdom): Challenge FamCare: how ing for persons with dementia vs traditional nursing home- a can we provide timely care for challenging behaviours in the pilot study family home? P6.5. Aud Johannessen (Norway): Motivating and discouraging fac- P5.5. Margareta Halek (Germany): Dementia Care Mapping inter- tors with being a support contact in the dementia care sector: vention: the challenge of improving daily practice in nursing a grounded theory study homes P6.6. Stephen Abela (Malta): Time for Breakfast – an opportunity for P5.6. Clive Ballard (United Kingdom): WHELD: A factorial ran- meaningful activity in hospitalised persons with dementia domised controlled trial of person centred care training, exercise, interaction and engagement and antipsychotic review to improve quality of life for people with dementia in care homes This parallel session is organised by INTERDEM

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Final Programme / Detailed Programme

16.00–17.30 P9.3. Ann Pascoe (United Kingdom): How photography, blogging (Wignacourt) Parallel Session P7: Research with people with and the arts helped a person with dementia accept his diag- dementia nosis P9.4. Judith Mollard (France): Alzheimer’s disease and artistic me- Chairperson: Marco Blom (Netherlands) diation workshops P7.1. Kohkan Shamsi (USA): Managing eligibility, amyloid related P9.5. Derek Eland (United Kingdom): (Don’t) Mention Dementia – imaging abnormalities (ARIA), and efficacy evaluations in groundbreaking engagement work in the UK Alzheimer disease clinical trials: Points to consider P9.6. Sandra Oppikofer (Switzerland): “Awakened Art Stories” – re- P7.2. Marjolein Gysels (Netherlands): Obtaining and maintain- discovering art with dementia ing consent for research participation from patients with impaired capacity: Best practice recommendations from the 16.00–17.30 MORECare consultation workshop on ethical issues in pallia- (Pinto) Parallel Session P10: Alzheimer Cooperative Valuation tive care research in Europe (ALCOVE) P7.3. Niall McCrae (United Kingdom): Experience of people with dementia and their carers in a major clinical trial Chairperson: Isabelle Avallone (Malta) P7.4. Gayle Borley (United Kingdom): Considerations when involv- P10.1. Armelle Leperre Desplanques (France): ALCOVE Joint Action: an ing people with dementia in research overview P7.5. Louise Nygård (Sweden): Development of an easy-to-use P10.2. Dawn Brooker (United Kingdom): ALCOVE recommendations videophone for people with dementia for achieving a timely diagnosis for people living with demen- P7.6. Dianne Gove (Luxembourg): Alzheimer Europe recommenda- tia tions on the ethics of dementia research P10.3. Dianne Gove (Luxembourg): ALCOVE in cooperation with Alzheimer Europe for ethics in dementia 16.00–17.30 P10.4. Pierre Krolak-Salmon (France): ALCOVE propositions for BPSD (Vilhena) Parallel Session P8: Dementia-friendly Support Systems: a holistic approach in 3 dimensions communities This parallel session is organised by ALCOVE.

Chairperson: Marvin Formosa (Malta) P8.1. Neil Mapes (United Kingdom): Connecting people living with dementia to nature: A celebration of woodland P8.2. Olivia Mastry (USA): ACT on Alzheimer’s: A unique toolkit available to all communities to foster dementia capability P8.3. Marian and Shaun Naidoo (United Kingdom): Connected Com- passionate Communities “Something to believe in” – the embodiment of life affirming energy and hope for the future P8.4. Brian Malone on behalf of the Scottish Dementia Working Group (United Kingdom): “I’d like a dementia-friendly world, but I’ll start with my local community” P8.5. Petra Plunger (Austria): Dementia friendly community pharmacies – building participatory networks for community- based care P8.6. Richard Ward (United Kingdom): The lived experience of the neighbourhood for carers of people with dementia

16.00–17.30 (Verdala) Parallel Session P9: Dementia and the arts

Chairperson: Susan McFadden (USA) P9.1. Jutta E. Ataie (USA): A visual exploration of the dementia experience: Uncovering multiple meanings of well-being P9.2. Silvia Ragni (Italy): Aesthetic emotions in people with dementia: Making museum art accessible to people with dementia

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Saturday, 12 October 2013 P13.5. Anne-Marie Bruijs (Netherlands): Why case management fits in a dementia-friendly society 8.30–10.00 P13.6. Areti Efthymiou (Greece): Impact of the economic crisis on (Perellos) Parallel Session P11: Carer training carers of dementia patients in Greece

Chairperson: Martin Ward (Malta) 8.30-10.00 P11.1. Rose-Marie Dröes (Netherlands): Development and evaluation (Verdala) Parallel Session P14: New psychosocial of the European STAR training portal: Skilling and re-skilling interventions carers of people with dementia P11.2. Fiona Kelly (United Kingdom): Care provision for people with Chairperson: Monika Natlacen (Austria) dementia in Maltese hospital wards: paradoxes between hos- P14.1. Simone Willig (Germany): A lot of things work better with mu- pital staff perceptions and observational and audit data sic – Music therapy and dementia P11.3. Daniel Grima (Malta): The nurses’ attitudes towards care of P14.2. Hanneke Donkers (Netherlands): Feasibility of a newly de- residents with dementia veloped tailor-made social fitness program for community- P11.4. Bart Hattink (Netherlands): Into D’mentia: Development & dwelling older people with dementia and caregivers evaluation of a virtual-reality experience of dementia P14.3. Jeni Bell (United Kingdom): Admiral nursing in an acute hospi- P11.5. Caroline Brown (United Kingdom): Putting the positives into tal – creating a dementia friendly hospital caring: A workshop designed by carers for carers P14.4. Patrizia Bruno (Italy): Dementia in the elderly: Interventions P11.6. Sirkkaliisa Heimonen (Finland): Logotherapeutic approach en- diversified by competences. Educating to recognise emotions hances the skills of professional carers and psycho-physical potentials P14.5. Maud Graff (Netherlands): Determinants for success and fail- 8.30-10.00 ure in the implementation of an evidence based occupational (Wignacourt) Parallel Session P12: Preventing carer burnout therapy intervention in the Netherlands P14.6. Alison Ward (United Kingdom): Developing a creative and Chairperson: Mark Xuereb (Malta) theatre based intervention for young people with dementia P12.1. Stefanie Auer (Austria): Alzheimer holiday in Austria and their carers P12.2. Sandra Poudevida (Spain): Evaluation of a group psychotherapeutic intervention for caregivers of people with Alzheimer’s 8.30-10.00 disease (Pinto) Parallel Session P15: Mediterranean Alzheimer’s P12.3. Philippe Duval (France): The Aloïs Network Alliance P12.4. Htay U Hla (United Kingdom): Promoting behaviour and coping in family carers of people with dementia Chairpersons: Charles Scerri (Malta) and Najib Kissani (Morocco) P12.5. Catherine Bassal (Switzerland): Caring for residents with de- P15.1. Federico Palermiti (Monaco): Mediterranean Alzheimer’s Alli- mentia: Interplay between emotion, emotion regulation, and ance: Making Alzheimer’s disease a priority in the Mediterra- well-being in professional caregivers nean P12.6. Karin Wolf-Ostermann (Germany): Dementia Care Networks in P15.2. Najib Kissani (Morocco): First initiatives taken in Morocco Germany: The DEMNET-D-Study P15.3. Anne Marie Duguet (France): Influence of socio-cultural factors on the needs and care of elderly immigrants from North 8.30-10.00 Africa with cognitive disorders (Vilhena) Parallel Session P13: Dementia strategies P15.4. Magda Tsolaki (Greece): Quality of life and non pharmacologi- and policies cal interventions in the Mediterranean This parallel session is organised by the Mediterranean Alzheimer’s Chairperson: James Pearson (United Kingdom) Alliance P13.1. Marie-Odile Desana (France): The extension of the French Alzheimer plan to neurodegenerative diseases 10.00–10.30 P13.2. Kerry Jones (United Kingdom): The role of dementia support Coffee break and poster exhibition workers in the community in removing the barriers to isola- (Dementia-friendly society: PO3.1.-PO3.23) tion and exclusion following diagnosis P13.3. Karishma Chandaria (United Kingdom): Creating dementia PO3.1. John and Susan McFadden (USA): The Fox Valley Memory friendly communities: Findings from the UK project: Creating a dementia-friendly community in the US P13.4. Michael Splaine (USA): Making dementia a global public PO3.2. Petra Plunger (Austria): Dementia friendly community phar- health priority: Translating global actions into local energy macies – building participatory networks for community-

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based care residential dementia care – Identification of influencing fac- PO3.3. Stefanie Auer (Austria): Master course for dementia studies at tors the Danube University Krems, Austria P16.2. Marion Villez (France): Gardens: living spaces for the well being PO3.4. Michael Splaine (USA): Journey of Care: World Alzheimer of people with dementia and their relatives Report 2013 P16.3. Siwaporn Chankrachang (Thailand): Multimodal non-drug PO3.5. Marjolein Gysels (Netherlands): Changing definitions of end therapy on dementia symptoms in nursing home residents of life care: including dementia under its remit with degenerative dementia in Thailand PO3.6. Clare Cutler (United Kingdom): The impact of war and living P16.4. Jean-Bernard Mabire (France): Social interaction and demen- with dementia tia: how people with dementia behave when they are put in PO3.7. Deborah Spiteri (Malta): Lived experiences of caring for a social situations? An observational study family member with dementia in Malta P16.5. Iva Holmerová (Czech Republic): Data collection and process- PO3.8. Leena Erola (Finland): The Alzheimer Society of Finland urges ing in care of persons with dementia Finns to TAKE CARE! P16.6. Eva Karlsson (Sweden): Integrated sensor-based monitoring PO3.9. Olivera Bundaleska (Former Yugoslav Republic of Macedonia): for people with dementia in a nursing home to promote a Quality of life in community person-centered care PO3.10. Nikos Degleris (Greece): Enrichment cognitive strategies for brain stimulation 10.30-12.00 PO3.11. Nikos Degleris (Greece): Psychoeducation for caregivers of (Wignacourt) Parallel Session P17: Preventing behavioural Alzheimer’s and related disorders patients (cognitive – problems and hospitalisation behavioural approach) PO3.12. Jutta E Ataie (USA): Photovoice projects: building blocks for a Chairperson: David Mamo (Malta) dementia-friendly society P17.1. Evan Morris (United Kingdom): Fire and rescue service and Age PO3.13. Avril Easton (Ireland): Developing dementia friendly commu- UK collaborate to keep people with dementia safe, well and nities in Ireland independent PO3.14. May-Hilde Garden (Norway): The world’s biggest fundraising P17.2. Annalisa Bonora (Italy): A management plan for people with day for dementia dementia: an experience of a special care unit PO3.15. Sabine Henry (Belgium): Dementia friendly cities P17.3. Orrell Martin (United Kingdom): Cochrane Review: Case man- PO3.16. Ann Pascoe (United Kingdom): Growing rural dementia agement for people with dementia friendly communities across the Scottish Highlands P17.4. Knud D. Andersen (Denmark): Preventing aggressive behaviour PO3.17. Anne-Marie Bruijs (Netherlands): The dementia friendly soci- and BPSD – a multicomponent method and organicational ety in the Netherlands model PO3.18. Karishma Chandaria (United Kingdom): Creating dementia P17.5. Herlind Megges (Germany): Caregiver needs analysis for prod- friendly communities: Findings from the UK uct development of an assistive technology system in demen- PO3.19. Anna Brorsson (Sweden): Activities in public space and being tia care a pedestrian goes hand in hand P17.6. Afifa Qazi (United Kingdom): Cochrane Review: Psychological PO3.20. Marie-Christine Closon (Belgium): Pilot project for a demen- treatments for depression and anxiety in dementia and mild tia friendly commune cognitive impairment PO3.21. Arlene Crockett (United Kingdom): Building a dementia friendly community in Motherwell town centre: Our story so 10.30-12.00 far (Vilhena) Parallel Session P18: Legal and ethical issues PO3.22. Louise Nygard (Sweden): Engagement in life style activities and difficulties to use everyday technology: a study of peo - Chairperson: Bridget Ellul (Malta) ple with Alzheimer’s disease, MCI and controls P18.1. Anna Mäki-Petäjä-Leinonen (Finland): A person with dementia PO3.23. Michael Splaine (USA): Dementia friendly initiatives: A re- and restriction of freedom port on national initiatives in hospital care for persons with P18.2. Jill Manthorpe (United Kingdom): Preventing crime and safe- dementia guarding people with dementia P18.3. Gary Mitchell (United Kingdom): The therapeutic use of doll 10.30-12.00 therapy for people with dementia: ethical considerations (Perellos) Parallel Session P16: Residential care P18.4. Maartje Wils (Belgium): Improving advance care planning in patients with dementia in a nursing home: defining facilitat- Chairperson: Rabih Chattat (Italy) ing factors and barriers P16.1. Karin Wolf-Ostermann (Germany): Proxy-rated quality of life in P18.5. Merja Riikonen (Finland): Moving on from the Home Door –

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Ethical aspects of using tracking technology 14.00–15.30 P18.6. Maria do Rosário Zincke dos Reis (Portugal): After diagnosis (Grandmaster Suite): Plenary Session PL3: Innovation and support in Portugal – Important issues on advance directives dementia

10.30-12.00 Chairperson: Maurice O’Connell (Ireland) (Verdala) Parallel Session P19: PL3.1. Nina Baláčková (Czech Republic): Giving a voice to people with Involving people with dementia dementia – the experience of the European Working Group of People with Dementia Chairperson: Birgitta Martensson (Switzerland) PL3.2. Elisabetta Vaudano (Italy): Alzheimer’s disease – a priority of P19.1. Avril Easton (Ireland): Learning Together – The Alzheimer Soci- the Innovative Medicines Intiative ety of Ireland experience of establishing the first Irish Working PL3.3. David Mamo (Malta): Behavioural and psychological symp- Group of People with Dementia toms of dementia: The elephant in the room? P19.2. Michelle Burns (USA): Innovation in Programming: Why is art PL3.4. Franka Meiland (Netherlands): Assistive technologies support- so important for those with dementia? ing people with dementia and their carers P19.3. Laura Tarzia (Australia): Don’t try and take over! Everyday decision making for people with dementia and their family carers 15.30–16.00 P19.4. Sabine Jansen (Germany): More participation for people with Coffee break and poster exhibition dementia (Innovation: PO4.1.-PO4.16.) P19.5. Clare Cutler (United Kingdom): Tales from the sea: engaging people with dementia in maritime archaeology PO4.2. Chloé Gerves (France): How much are support services worth? P19.6. Fritze Kristensen (Denmark): The biomedical concept of dis- The case of Informal caregivers of care recipients with Alzhe- ease of Alzheimer’s disease generates from a patient perspec- imer’s Disease in ICS-HIS French panel data tive a cleft between diagnosis and the life with dementia PO4.3. Philipp Koldrack (Germany): Cognitive assistance to support social integration In Alzheimer’s disease 10.30-12.00 PO4.5. Daniela Holle (Germany): English translation of an assess- (Pinto) Parallel Session P20: Malta Dementia Society ment for identifying triggers and causes of dementia related challenging behaviour - IdA Chairpersons: Charles Scerri (Malta) Stephen Abela (Malta) PO4.7. Gary Mitchell (United Kingdom): The therapeutic use of doll P20.1. Charles Scerri (Malta): Malta’s Strategy for Dementia: A way therapy for people with dementia: A systematic review of the forward literature This parallel session is organised by the Malta Dementia Society and PO4.10. Radim Krupicka (Czech Republic): Data collection and will partly be held in Maltese. processing in care of persons with dementia PO4.11. Shun-Ku Lin (Taiwan): Prescription pattern of Chinese herbal 12.00–13.00 products for Alzheimer’s disease in Taiwan: a population- Lunch based study PO4.12. Sally Osborne (Australia): “There’s a life for us, if we risk it!” 13.00–14.00 Is a diagnosis of dementia a risky business? (Perellos) Special Symposium SS3: The evolving role of pa- PO4.14. Ursula Blaschke (Germany): Do not forget the songs – a choir tients advocacy groups in clinical trials education for people with and without dementia

Moderator: Iva Holmerová (Czech Republic) 16.00–17.15 SS3.1. Gary Geipel (USA): Patient enrolment in cancer clinical trials: (Grandmaster Suite): Plenary Session PL4: Dementia friendly How public and cancer patients perceive clinical trials society SS3.2. Philip Scheltens (Netherlands): Participation in clinical trials: lessons from other areas and the role of patients advocacy groups Chairperson: Stephen Abela (Malta) This symposium is organised by Eli Lilly & Co. PL4.1. Joost van Hoof (Netherlands): Ageing-in-place: Living arrangements for people with dementia in the community 13.00-14.00 PL4.2. Carmelo Aquilina (Malta/Australia): Persistence of the self in (Wignacourt) Workshop WS1: Whose Shoes? – Making it real dementia for people living with dementia PL4.3. Anthea Innes (United Kingdom): Dementia care: personal This workshop is run by Gill Phillips and Shahana Ramsden (United journeys to dementia friendly societies Kingdom)

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17.15–17.30

(Grandmaster Suite): Closing Ceremony

Presentation and invitation to 24th Alzheimer Europe Conference in Glasgow, Scotland

Closing comments and farewell by: Stephen Abela, Chairperson, Malta Dementia Society Heike von Lützau-Hohlbein, Chairperson, Alzheimer Europe

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Final Programme / Social Programme Social Programme

Alzheimer Europe and the Malta Dementia Society have put 20:00: After the visit of the historical Verdala Palace, a coach transfer together an exciting social programme for the 23rd Alzheimer will be organised to Mdina and the Bacchus Restaurant. Europe Conference in St. Julian’s, Malta. 20:15: A lavish 3-course dinner will then be served at the exclusive Welcome Reception - Thursday, 10 October 2013 Bacchus Restaurant, which is situated in one of the oldest buildings (19.00-20.30) in Mdina. Starter: The welcome reception for all conference delegates will take place Vegetable mille–feuille, parmesan Crisp (Vegetarian) on Thursday, 10 October 2013 from 19.00 to 20.30, straight after the Cream of Sea bream, Mediterranean prawn tails, Sauce cocktail opening ceremony. Main Course: It will take place on the outside terrace of the Hilton, among the Crispy vegetables with chick–pea flour and balsamic sauce olive trees of the Gazebo Restaurant. (Vegetarian) Sauteed breast fillet of duck, cauliflower pancakes, Glazed pear This welcome reception will be an ideal opportunity to meet Dessert: other conference delegates in a friendly and relaxed atmosphere. Date Mille–Feuille, Biscotto ice cream, apple compote, apple Crisp Delegates will be able to choose from local wines and beers, as well as juices and soft drinks. A range of hot and cold canapés will also A historical building dating back to the year 1580 and originally be served. used in the times of the Knights of St. John’s as a storage place for gunpowder, this building has been converted to retain its original The evening will be infused with typical Maltese music played by a historical features including gardens on the fortified bastions of the duo of local, roving musicians. ancient city of Mdina.

All registered delegates are invited to attend the welcome reception Playing classical and modern melodies, a three piece band will keep which is included in the registration fee. guests in good company throughout the evening.

Gala Dinner - Friday, 11 October 2013 The restaurant will be set with round tables of 10 people. Dinner will (18.30-00.00) be accompanied by a beverage package of ½ bottle local wine, water & coffee per person. 18:30: Depart hotel by coaches with licensed guides on board for a transfer for a guided tour of the Verdala Palace and dinner at To round off the evening, Mike Spiteri, a famous Maltese musician Bacchus restaurant. will entertain you with his band and invite you to dance. Mike represented Malta at the 1995 Eurovision Song Contest with Keep 19:00: Delegates will arrive at the Verdala Palace. The Verdala palace Me In My Mind. More recently, he won the 2011 Konkors Kanzunetta has been in use as the summer residence of the President of Malta Indipendenza in Malta with the song, B’Rieda Ta’ L-Azzar (Faith Of since 1987 and is generally closed to the public. His Excellency, the Steel). President of Malta has opened his residence to the delegates of the Alzheimer Europe Conference who will have the exceptional 22:30 - 24.00: Coach transfers back to the hotel will be organised at opportunity of a guided tour of the prestigious Palace which was 22.30, 23.30 and 24.00 used as a residence by the various Grandmasters of the Order of St. John.

Maltese Duo Mike Spiteri Verdala Palace Bacchus Restaurant

20 Living well in a dementia-friendly society / Malta 2013

Final Programme / Keynote Speakers Keynote Speakers

Carmelo Aquilina Angiolina joined the civil service in 2001 as Director of Regulation Dr Carmelo Aquilina graduated from the University of Malta in 1986 and Inspection for the Social Housing sector in Scotland. From and started his psychiatric training in Liverpool in 1988 and trained 2003 to 2007 she was Chief Executive of Scotland’s Housing and as an old age psychiatrist in London in 1991. He started work as an Regeneration Agency, Communities Scotland. On route to this old age psychiatrist in 1996 working in Sheffield, Eastbourne and role, she led the largest community ownership project of its kind in then South London. During this time he was the founder-editor of Western Europe by delivering the Glasgow Housing Stock Transfer in the Royal College of Psychiatrists’ Faculty of Age Psychiatry’s Journal March 2003. From 2007 to 2011 Angiolina held the post of Director of –‘Old Age Psychiatrist’ from 1994 to 2002. In 2006 he worked as the Strategy and Cabinet with the Scottish Government, a role that sits Director of Old Age Psychiatry services in Auckland, New Zealand at the heart of the devolved administration. and in 2008 started work in Sydney initially as Director of Mental Angiolina was made a Commander of the British Empire in 2011 and Health Services for Older people in Western Sydney and from August in early 2012 became the Scottish Government’s Director of Health 2013 has become the Senior Staff Specialist and Clinical Director of and Social Care Integration. Old Age Mental Health Services at St George Hospital in Sydney. He In her free time, Angiolina loves walking and hill climbing and is also Clinical Senior Lecturer with the University of Sydney. His in- generally relishing Scotland’s stunning landscape. terests include dementia, ethics, health economics and self-neglect in old age. Chris Gastmans Chris Gastmans (*1966) started his academic career in 1990 at the Nina Baláčková Centre for Biomedical Ethics and Law, Faculty of Medicine, KU Leuven. Nina Baláčková was born in 1958 in Prague, Czechoslovakia, where He has a Doctoral Degree in Theology, KU Leuven (1995). His doctoral she has lived all her life. She studied at the Economics School dissertation is a critical study of the historical, anthropological and and has worked as an accountant. In 2009, two years after being moral theological foundations of nursing ethics, conceptualized as diagnosed with Alzheimer’s disease, she decided to help publicise an ethics of care. He received the position of Full Professor of Medical information about Alzheimer’s disease to more people. Ethics in the Faculty of Medicine, KU Leuven. Since 2002, he is She is active in the Czech Alzheimer’s Society and speaks to the Secretary-General of the European Association of Centres of Medical public, both in her home country and internationally, about her life Ethics (EACME). He is the coordinator of the following research with dementia. projects: Ethics of Care: Fundamental Research into the Underlying Nina joined the European Working Group of People with Dementia Views Regarding Care and the Human Person (2002-2006), Nurses’ in October 2012 and was elected as Vice Chairperson on 12 April 2013. Involvement in Euthanasia (2003-2008), Written Ethics Policies on Euthanasia in Healthcare Institutions (2005-2009), Nurses’ Angiolina Foster Involvement in Withholding/Withdrawing Artificial Food and Fluid Angiolina Foster CBE began her career in local government, where Administration (2007-2010), Nurses’ Ethical Behaviour and Physical she gained extensive operational management experience in Restraints in Hospitals (2008-2012), Risk, Luck, and Responsibility Scotland’s two largest local authorities – Glasgow and Edinburgh. in Health Care (2008-2014), Philosophical-Ethical Analysis of Care In her work with these unitary authorities, she gained a strong for Intimacy and Sexuality in Institutionalised Elderly (2010-2014) reputation for driving-up service quality and maximising value for and of the EU research project Ethical Codes in Nursing: European citizens. Over this period, she developed a keen personal interest in Perspectives on Content and Functioning (2002-2005). He is member customer-led performance improvement. of the Editorial Board of Nursing Ethics (SAGE, London) and Nursing

Carmelo Aquilina Nina Baláčková Angiolina Foster Chris Gastmans

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Philosophy (Blackwell Publishing, Oxford). His most important book 2011 as Professor of Health and Social Care Research, with a remit to is “Between Technology and Humanity” (Leuven University Press, develop activity on dementia and ageing. Professor Innes previously 2002) and “Justice, Luck and Responsibility in Health Care” (Springer, worked at the University of Stirling, where she developed the first 2013). He published articles in international journals and books on online postgraduate programme in Dementia Studies. end-of-life care ethics, elderly care ethics, empirical ethics, ethics of Professor Innes is passionate about improving the lives of those with care, and nursing ethics. dementia and their families, as well as enabling care professionals to provide high-quality support and service. She is widely-published Joost van Hoof and is the author of Dementia Studies: A Social Science Perspective Joost van Hoof serves as the head of Fontys EGT, the Centre for Health (published by Sage) and Training and Development for Dementia Care & Technology. Fontys EGT is a cooperation between 5 Institutes Care Workers (Jessica Kingsley). She also co-authored a best practice of Fontys University of Applied Sciences in Eindhoven and Venlo book on end of life dementia care and has edited five books as (30 EC minor), which also involves the creation of an exploration well as peer review papers, professional journal papers and book and experience laboratory for health care and technology, and the chapters. construction of a nursing home case demonstration centre. Van Her research interests within the area of dementia are: rural service Hoof attained his doctoral degree from Eindhoven University of provision; leisure and the arts; technology; care environments; the Technology with a dissertation on ageing-in-place for people with views and experiences of those with dementia, their family members dementia in 2010. He attained his MSc degree at the same university and paid care workers; and diagnosis and postdiagnostic support. (Department of Architecture, Building and Physics, Unit of Building She uses mixed methods in her research and has particular skill Physics and Systems) on a thesis about thermal comfort in 2004. in the use of interviews and focus groups as well as observation He also studied Environmental Engineering at the Czech Technical methods including Dementia Care Mapping (DCM). She has led University in Prague. From 2004 until 2012, Dr van Hoof worked as numerous research projects including working on EU consortium a (post-doctoral) researcher with the Research Group of Demand- projects and is currently working in collaboration with colleagues Driven Care of the University of Applied Sciences Utrecht. Within the from Canada and Malta. research group, Dr van Hoof was involved with topics in the area of living, technology and adults with dementia. Armelle Leperre-Desplanques In addition, he served as a lecturer in the domain of technology Holding a PhD in Pharmaceutical Sciences and a Doctor of Medicine and health care at the campus in Amersfoort. From January 2012 and Clinical Pathology, Dr. Armelle Leperre Desplanques’s academic onwards, Dr van Hoof works with the ISSO – the Dutch Building and professional background have provided her the experience to Services Research Institute in Rotterdam, The Netherlands. He lead the Quality and Public Health action research programmes is the coordinator for research and standardisation in the field of with France’s National Authority for Health. Dr. Leperre Desplanques home automation and health care. He is a member of committee carried out her medical studies at the Reims-Champagne Ardenne on experimental housing and dementia of SEV, the Dutch Housing University where she subsequently held the position of Teaching Experiments Steering Group, in Rotterdam. For his work, Dr van Hoof Hospital Pharmacology and Drug Monitoring Assistant at the won various (inter)national awards, including the REHVA Young Reims University Hospital, where she also carried out fundamental Scientist Award 2011 by the Federation of European Heating and Air- and applied research at the university’s medical school. She then Conditioning Associations, and the 2010 BJ Max Prize. He is a board went on to practice clinical medicine for the Paris Public Hospital member of various ISI journals on building, technology and health system as a Hospital Physician in Emergency Medicine and Assistant care. to the Head of Emergency Medicine at the Bichat-Claude Bernard Hospital. She has also worked to develop community public health Anthea Innes programs at the international level with the organisation, Doctors of Professor Anthea Innes joined Bournemouth University in December the World. Armelle Leperre Desplanques joined the French National

Joost Van Hoof Anthea Innes Armelle Leperre-Desplanques

22 Living well in a dementia-friendly society / Malta 2013

Final Programme / Keynote Speakers

Authority for Health in 2008 with the responsibility of developing in Neuroscience with Distinction in 1995. He was accepted to pursue quality innovative programmes. his postgraduate training at the University of Pittsburgh, USA, Her work entails moving from an evaluation logic model where where he completed his General Psychiatry training followed by comparison is centred on the structures and healthcare professionals Subspecialist Training in Old Age Psychiatry in 2001. In recognition to one where the focus is on the clinical results of a person’s of his specialist and subspecialist training, he was admitted to care cycle. Naturally, this care cycle will encompass city/hospital Fellowship of the Royal College of Physicians of Canada (FRCPC), and interfaces and hospital, ambulatory, and medico-social settings. a Diplomate of the American Board of Psychiatry and Neurology in Dr. Leperre Desplanques has contributed to the implementation both General and Geriatric Psychiatry. of the “Pilot Programmes – Clinical Impact” department, and Dr Mamo then went on to do a post-doctoral fellowship in leads a multi-disciplinary team which works in conjunction with schizophrenia and brain imaging using PET at the Centre for a collaborative platform to produce new tools for the evaluation Addiction and Mental Health, and was awarded a Master’s degree in and improvement of practices and clinical results for full care cycles pharmacology from the University of Toronto for his published work for conditions such as Myocardial Infarction and Stroke, as well in the mechanism of action of antipsychotics using 18FmT in rodents as at-risk situations in the geriatric pathway, such as medicine- and healthy human subjects. In 2004 he was appointed Assistant related iatrogenicity in elderly patients or disturbing behaviour in Professor of Psychiatry at the University of Toronto and Consultant people living with dementia, which are two of the major causes Psychiatrist at the Centre for Addiction and Mental Health where for hospitalisation, institutionalisation, and loss of autonomy. In he led a multimodal brain imaging research laboratory supported particular, the following concepts which combine elements of by grants from the National Institute of Health (NIH USA) and CIHR Quality, Public Health, and Practices have been developed and (Canada) to Dr Mamo to develop model for individualized dosing of implemented: Full Care cycles (pathway: full care cycle), ESA Quality antipsychotics in older patients using PET imaging. During this time Indicators (Effectiveness, Safety, Access), and AMI Indicators (Alert he also served as a consultant geriatric psychiatrist of the CAMH and Iatrogenic Mastery Indicators), HAS Collaborative Approaches Geriatric Mental Health Program, President of Medical Staff at the (multidisciplinary approach combining exchanges and analyses of Centre for Addiction and Mental Health and a member of the Board national and international practices (REX, bottom up) and level of of Trustees of the same hospital. He was promoted to Associate scientific proof (evidence, top down). Professor of Psychiatry at the University of Toronto in 2010 and Since 2011, Dr. Leperre Desplanques has been responsible for Visiting Associate Professor of Psychiatry at the University of Malta the overall and scientific coordination of the European Public in 2011. He has published more than 100 papers and abstracts in Health Joint Action, ALCOVE - ALzheimer COoperative Valuation international peer-reviewed journals, and is currently a Consultant in Europe. This project has focused on dementia, and has joined Psychiatrist in Malta and Clinical Lead in the Development of Mental together 30 partners from 19 countries. She is currently pursuing Health Services for the Elderly in Malta. the development of the project’s approaches towards a geriatric pathway for dementia, seeking both to generate operational Gráinne McGettrick public health recommendations as well as quality programs for Gráinne McGettrick is the Policy and Research Manager working the management of risk and the improvement of quality of life for for The Alzheimer Society of Ireland. She joined the organisation patients and their carers. ten years ago and is responsible for managing the research and policy function in the organisation. This includes commissioning David Mamo research projects and policy papers, building strategic partnerships, Dr. David Mamo MD, MSc (Lon), MS (UoT), FRCPC, FAPA, Dipl. ABPN engaging in policy analysis, securing funding and representing graduated from the Medical School of the University of Malta in the organisation at various national and international fora. She is 1993. He then went on to pursue postgraduate studies at King’s currently a director of the Medical Research Charities Group. College of the University of London UK, graduating with a Master’s Prior to working for the Alzheimer Society of Ireland, Gráinne worked

David Mamo Gráinne McGettrick

23 23rd Alzheimer Europe Conference

Final Programme / Keynote Speakers

in a variety of service provider and campaigning organisations in the the Karolinska Institutet, Sweden. Her thesis was entitled “Lifestyle- community and voluntary sector and has significant experience of related risk factors in dementia and mild cognitive impairment: a working on rights based agendas and community development population-based study”. She graduated as MD from the University for marginalised and disadvantaged people. She holds a Bachelor of Kuopio, Finland in 2007. of Social Science from University College Dublin and a Masters in Social Policy from NUI Maynooth. Martin Orrell Professor Martin Orrell, FRCPsych PhD, Professor of Ageing and Franka Meiland Mental Health at University College London. Prof Orrell works as Dr. Franka Meiland is a health psychologist who received her degree an Honorary Consultant Old Age Psychiatrist and is Director of from the University of Amsterdam in 1989 and her PhD in 2002. She Research and Development at North East London Foundation Trust. is senior researcher and lecturer at the department of Psychiatry, He is a Visiting Professor at City University. the department of General practise and Elderly care medicine, and He is Chair of the Memory Services National Accreditation Panel the EMGO institute for health and care research of the VU University (MSNAP) and a member of the Prime Ministers Challenge on Medical Center in Amsterdam (NL), and she is coordinator Knowledge Dementia Research Group transfer of the Amsterdam Center on Aging (VUmc-VU). Her research He holds 2 NIHR programme grants (SHIELD and VALID) and an HTA topics include development, evaluation and implementation of Trials grant (iCST) evaluating psychosocial interventions for dementia psychosocial and ICT interventions in dementia. She worked/works care. He has published over 200 academic papers. He is a Board on several ICT projects: the development and evaluation of the DEM- member of both INTERDEM and the International Psychogeriatric DISC, the Information desk Effective care and treatment in dementia, Association. He is Editor of the journal Aging & Mental Health. and the European COGKNOW, ROSETTA, and STAR projects. She is an active member of the European Interdem group and is co-leader of Jacqueline Parkes their task-force on Assistive Technology in dementia. Dr Jacqueline Parkes, PhD, M.Med.Sci, BA (Hons), P.G. Dip, P.G.Cert, R.M.N began her mental health nursing career after completing her Tiia Ngandu Bachelors degree in English and Community Studies in 1988. As a Tiia Ngandu, MD, PhD is currently working as a medical specialist at registered nurse, she worked across community, acute in-patient, the Department of Chronic Disease Prevention, National Institute rehabilitation, forensic, and elderly mental health care settings. for Health and Welfare, Helsinki, Finland and as a researcher at On completing her Masters in Clinical Nursing and Midwifery, the Alzheimer’s Disease Research Center, Karolinska Institutet, Jackie began her academic career delivering all aspects of mental Stockholm, Sweden. health care within both pre-registration and post registration nurse Her major research interests are in the area of dementia education programmes. epidemiology, particularly risk factors and prevention of Alzheimer’s Since 2008, she has led the Mental Health Research Group in the disease and cognitive impairment. She has been investigating the Centre for Health and Wellbeing Research (CHWR) at the University of role of various lifestyle-related factors, such as obesity, alcohol Northampton. In this role, she has completed a number of externally drinking, diet and socio-economic status for the development of funded projects which have focused on the delivery of specialist dementia. Special focus in her research has been on the possible care pathways for individuals with a learning disability, children interactions between genetic and lifestyle-related factors. Dr. and adolescent mental health services, and people with dementia Ngandu is the main coordinator of the ongoing Finnish Geriatric and their informal carers. Jackie’s doctoral work, which employed Intervention Study to Prevent Cognitive Impairment and Disability a phenomenological approach, has led to the development of a (FINGER), which is a multidomain lifestyle RCT aiming at prevention humanistic Conceptual Framework for Care for female patients in of cognitive impairment and AD. secure mental health services. Dr. Ngandu received her PhD in geriatric epidemiology in 2006 from As well as narrative research approaches, Jackie’s research interests

Franka Meiland Tiia Ngandu Martin Orrell Jacqueline Parkes

24 Living well in a dementia-friendly society / Malta 2013

Final Programme / Keynote Speakers

also include participatory, collaborative, and user-led research. She is Sweden and Denmark. Elisabetta moved to industry in 2000, joining currently teaching research methods to a range of user/carer groups, Lundbeck as leader of their Parkinson’s disease Neuroprotection which has attracted both national and international interest. Group. In 2004 she became Head of Pharmacology and CNS Biology As Chair of the Dementia Research Network in the CHWR, Jackie is at ENKAM Pharmaceuticals. Elisabetta joined IMI in 2010. currently leading research which seeks to explore with people with early onset dementia and their informal carers, the impact on the Myrra Vernooij-Dassen quality of life, life choices, and social connectedness of their initial Prof. Myrra Vernooij-Dassen (PhD) is principal investigator in diagnosis; in order to inform the development, implementation, the Nijmegen Centre for Evidence Based Practice and director of and evaluation of a social rehabilitation intervention specifically Nijmegen Alzheimer Centre. She has a chair on psychosocial aspects designed to promote social connectedness and normalisation of care for frail elderly people. She is affiliated to the scientific within this population. Institute of Quality of healthcare and the department of primary care the Radboud University Nijmegen Medical Centre and to the Martin Seychell Kalorama Foundation. She is trained in sociology and research Martin Seychell is a Deputy Director-General in the Health methodology and has performed a large body of research on quality and Consumers’ Directorate-General (SANCO) at the European of care, especially on dementia care and palliative care and on care Commission. He has held this post since 1/3/2011, with responsibility transitions. She has 30 PhD students and published more than 150 for the Directorates of Consumer Affairs, Public Health and Health international articles. She is involved in several European Union Systems and Products. funded projects, including the Implementation of quality indicators Previously, Mr Seychell was the Director of Environment Protection in palliative care sudy. She is chair of Interdem and is honorary at the Malta Environment & Planning Authority (2006-2011). He visiting professor of the School of Health of Bradford University was responsible for implementation of environmental legislation, and the Gadjah Mada University in Yogyakarta, Indonesia. She is including input into national environmental policy. Between 2006 a member of the Scientific Advisory Board of the European Joint and 2009, he was also responsible for implementation of legislation Programming Initiative for Neurodegenerative Diseases. Myrra on climate change. Before that, Mr Seychell held positions of Vernooij received the Dutch royal honour to be promoted to officer increasing responsibility at the Maltese Ministry for Competitiveness in the order of Orange-Nassau. & Communications. During his career, Mr Seychell has served as Malta’s representative on the Management Board of the European Environment Agency (EEA) and also on the “Sherpa” group, set up by the President of the European Commission to advise on GMO policy. Mr Seychell, a Maltese national, is a Bachelor of Pharmaceutical Technology (Honours) from the University of Malta.

Elisabetta Vaudano Italian born Elisabetta Vaudano works as coordinator of the Scientific Pillar at the Innovative Medicines Initiative (IMI), the largest Public Private partnership in Health Sciences with a total budget of 2 billion EUR. Elisabetta is a doctor in veterinary medicine and has a PhD in neuroscience and a MSc in Laboratory Animal Science. Elisabetta started her career as scientist in academia working in the field of neuronal degeneration, regeneration and plasticity in Italy, UK,

Martin Seychell Elisabetta Vaudano Myrra Vernooij- Dassen

25 23rd Alzheimer Europe Conference

Abstracts / Friday, 11 October Abstracts

that older people are especially prone to suffer from dementia, many countries will be confronted with a rising number of people Friday, 11 October 2013 with dementia. This demographic evolution results in important new responsibilities for older people in general and people with dementia in particular. What do they consider as good care and as 8.30-10.00 (Grandmaster Suite): a good death for persons with dementia? What do they consider Plenary Session PL1. Integrated Care as their own responsibility in ‘preparing the future’? What do they think about legal regulations regarding patients’ rights and advance PL1.1. The commitment of the Scottish Government to directives, and what do these legal frameworks mean for their own post-diagnostic support situation? In our contribution, we will propose a comprehensive Foster Angiolina clinical-ethical framework to deal with the above mentioned questions about daily care and end-of-life care for persons with This presentation will outline the Scottish approach to transforming dementia. First, we briefly outline the general philosophical-ethical post-diagnostic support as part of Scotland’s second 3-year National background from which we developed our framework. Against this Dementia Strategy, published in June 2013. background, we identify and explore three corner concepts that must From 2007, initial activity to improve dementia services was be observed in an ethical approach to daily care and end-of-life care focussed on driving up diagnosis rates, with a national target in for persons with dementia: vulnerability, care, and dignity. Based Scotland from 2008-2011. This was achieved nationally and around on these concepts, the ethical essence of dementia care practices 64% of people with dementia in Scotland are now being diagnosed. is described as ‘providing care in response to the vulnerability of a In tandem with this work on diagnosis, pilot work told us that human being in order to maintain, protect, and promote his or her people were reluctant to get a diagnosis of dementia because they dignity as much as possible’. A central topic that is used in order could not easily see that the benefit of getting access to effective to make our ethical analysis more concrete and applied is that of care, treatment and support was greater than the overall detriment advance directives. to their lives of knowing that they had dementia. Although a diagnosis of dementia has a huge impact on individuals PL1.3. Dementia Palliative Care: Consensus building and and families, timely and sensitive diagnosis, backed by effective signposting the future direction in Ireland and holistic post-diagnostic support, is vital in helping people McGettrick Gráinne build their personal resilience and knowledge about dementia and enabling them to live a good quality of life at home for as long as The term of “dementia palliative care” has been used as a way of possible. In order to help to transform dementia services in this area describing the means of appropriately addressing the palliative care – and to help sustain and build on the diagnosis rates achieved – needs of the person with dementia and their family throughout the Scottish Government introduced a first national commitment the disease trajectory. It reflects the qualities of person-focused on post-diagnostic support. It is underpinned by a 3-year national dementia care and the holistic focus of palliative care. health target that everyone newly diagnosed with dementia from The Alzheimer Society of Ireland (ASI) and the Irish Hospice 1 April 2013 will receive a minimum of a year’s worth of dedicated Foundation (IHF) undertook a six-month feasibility project to build a post-diagnostic support, coordinated by an appropriately skilled consensus and to signpost the direction of dementia palliative care. Link Worker. This support received will be delivered in line with The report was published in 2012. The aim of the project was to gain Alzheimer Scotland’s 5 Pillars of post-diagnostic support and will an understanding of the multiple perspectives involved, start to help people adjust to a diagnosis, connect better with services and build consensus as to what is “dementia palliative care” and identify plan for future care. and signpost a future programme of work. Through a process of The presentation will also outline how we are testing and evaluating consultation and dialogue with stakeholders including specialists, models of intensive, community-based services for people in the multi-disciplinary healthcare professionals, service providers moderate to later stages of dementia and how this links with work and family members, a number of issues emerged. The needs of by the Scottish Government and its partners to demonstrate the people with dementia and their families are complex and cross value of a whole-system approach to redesigning dementia services; several service frameworks over the duration of their journey with as well as wider work to integrate health and social care in Scotland. dementia. Partnerships, networks and shared care models between dementia and palliative specialists and services, based on need and PL1.2. Dignity-enhancing care for persons with dementia not diagnosis is essential to support end of life care and planning and its application to advance directives for people with dementia. Reaching a consensus and building a Gastmans Chris conceptual model of “dementia palliative care” is challenging given the complex nature of the condition, the existence of co-morbidities The number of older people continues to increase worldwide. Given and the contested view as to whether people die “with” or “from”

26 Living well in a dementia-friendly society / Malta 2013

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dementia. It is accepted that dementia is an irreversible, progressive biomarkers (Jack et al., 2011; Sperling et al., 2011) raises exciting and life limiting condition. Although participants engaged in the prospects for more accurate and earlier diagnostic investigation in project acknowledged that a palliative approach to care should dementia (Danish Health and Medicines Authority 2008). However, be available to people with dementia from early in the disease at present, treatment for dementia remains largely symptomatic, trajectory, the challenge identified by the project is to determine thereby emphasising the professional and ethical obligation for mechanisms for the wide range of service providers involved in the comprehensive services. The psychosocial and personal impact care of people with dementia to introduce this approach in a timely, of the illness on a younger person is known to have ‘devastating sensitive and appropriate manner. consequences for productivity, family and society’ (Fardil et al., 2009, Currently, there is no systematic approach to meeting the palliative van Vliet et al., 2011, Bakker et al., 2008) as the individual experiences needs of people with dementia and their families within the significant alterations to their sense of self, feelings of social healthcare system in Ireland but within the system are pockets of isolation and dependency, and a ‘lack of meaningful occupation’. informal partnerships and networks between services and disciplines Such alterations impact on relationships within the family that support good end of life care for people with dementia. structure, including parenting, and maintaining social networks, Collaborations across services and disciplines, with a shared and participation in civic society (Harris & Keady, 2004). Experiences vision of person focused care, based on need and not diagnosis, of individuals and their carers is rarely considered (Kaiser 2007), yet demonstrates the potential to develop integrated partnerships and the stress of caring for people with young onset dementia (PwYOD) models of shared care that could form the foundation for a model (Bakker et al., 2008) is extremely high, perhaps even more so than in for dementia palliative care. cases of LOD (Freyne et al., 1999, Harris & Keady, 2004, Ratnavalli et From this work, there was a clear agreement for the need to building al., 2002, Tindall & Manthorpe, 1997; Van Vliet et al 2010). understanding, knowledge, skills and sectoral capacities in order to The stories of carers for PwYOD frequently illustrate the enormous respond to the specific needs of people with dementia. Therefore, physical, psychological, and social impact the disease process has in terms of signposting a future work programme, four key domains on both the individual with the diagnosis and their family. Their were identified including services, education and training, research stories describe confusion following diagnosis, social isolation, and policy advocacy. and a lack of specialist support from the formal health and social care providers for those with a younger onset diagnosis. Studies PL1.4. Improving access, care pathways and social care for also support the view that the caregivers of individuals with YOD people with young onset dementia frequently experience difficulties in receiving a timely diagnosis Parkes Jacqueline (Van Vliet et al 2013); and can experience challenges in accessing appropriate specialist support from traditional formal health and While dementia is often associated with older people (>65 years), it is social care services following diagnosis (Bakker et al 2008). Clearly, estimated that 2-7% of diagnoses, in the UK, are made in individuals there is a need to raise special awareness to the formal and informal of working age (Alzheimer’s Society, 2012). Conservative estimates care experiences of people with YOD and their carers, in order to of current figures (UK) for people with YOD are 15,000, but studies raise the profile of the need for more rapid access to specialist social suggest numbers could be as much as a third of the total population and psychological support to both the individual with YOD and their for all types of dementia (Sampson et al 2004; Jefferies & Agrawal, primary caregiver. 2009). The World Health Organisation (WHO) estimates that the real Based on the findings of some work undertaken by the Dementia incidence of younger people with dementia can be 2 ½ to 4 times Research Network at the University of Northampton (UK), it has higher than registry studies reflect. been identified that individuals with young onset dementia and Dementia in younger people is more difficult to recognise than late their carers wish to be actively supported in re-building normal onset dementia (LOD) in the early stages of the disease. Although social networks following initial diagnosis, while receiving timely 60% of patients typically present within 12 months of onset and appropriate access to formal integrated care pathways. This of symptoms, many can take up to 4 years or longer to receive a presentation will present the findings and recommendations which confirmed diagnosis (Kristensen, 2012; van Vliet et al., 2012). Factors describe the impact diagnosis has made to the quality of life and life contributing to such delays include younger age and atypical choices for both the PwYOD and their carers, and the development of presentations; a broad differential diagnosis and behavioural (van Vliet et al., 2012), non-cognitive and psychiatric presentations are Mark the dates! common in this group, even for common dementias. Furthermore, 24th Alzheimer Europe Conference lack of awareness and lack of education among GPs and other Dignity & Autonomy in dementia professionals, multiple and mis-directed referral into care pathways and the atypical patient profile all contribute to delayed or mis- Glasgow, United Kingdom diagnosis (Fardil et al., 2009, Harris & Keady, 2004, McMurtray et 20–22 October 2014 al., 2006, van Vliet et al., 2010). The increasing availability of new

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specific tailor-made community-based social interventions, which Hochgraeber Iris, Bartholomeyczik Sabine, Holle Bernhard are designed to promote normalisation and social connectedness. Background: Volunteers are an important resource to support 10.00-10.30 (Exhibition area) the care of people with dementia. The German social care system PO1. Poster Presentations - Integrated Care provides group- or individual services at home. Those volunteers receive a training and are supervised by professional health or PO1.1. The evaluation of a visual editor for carers of people social care workers. The study NisA-Dem investigates low-threshold with dementia in the design of home based care support services. This presentation focuses on the perspectives of Nugent Chris, Hallberg Josef, Beattie Mark, Synnes Kare volunteers and providers regarding the role and status of volunteers in those services. One of the issues relating to the usage of assistive technologies Methods: In an explorative cross-sectional study we used is providing solutions which can be managed by non-technically quantitative (standardised questionnaires) and qualitative orientated healthcare professionals. Within the current work efforts (interviews and group discussions) methods. Data analysis was have been made to develop and evaluate a new software tool with performed using descriptive statistics and a qualitative content the ability to specify, in a non-technical manner, the rules governing analysis. how technology within the home environment should be monitored Results: We obtained 92 questionnaires, 4 group discussion and 4 and under which circumstances an alarm should be raised. interviews. The volunteers’ employment status differed: Only 50% of A user interface, based on the premise of visual notations, has been the people were in fact honorary engaged, the rest received a regular developed to support the selection of the technology in addition to salary. Furthermore, reasons to be voluntary engaged were seeking specifying the conditions and rules which will govern its operation. for a meaningful activity and personal benefit. Volunteers perceived To test the utility of the approach a cohort of nurses (n=10) engaged their engagement as their job. For the providers it was important with the system. Each participant was asked to undertake 3 tasks. In to guide and supervise the volunteers by giving continuous and the first two tasks participants were presented with two scenarios, comprehensive training. one related to the process of grooming and one related to the Conclusion: In general, volunteers seemed to have a high process of medication management. Participants were asked to identification with their engagement and it seems to bean use the user interface to select the necessary technology and to important part of their life. Some service providers prefer a build the necessary set of rules to monitor if a person had correctly traditional voluntary engagement. In contrast, others head for a undertaken the tasks. In the third task, participants were presented certain professionalisation of the volunteers to generate a more with a completed scenario using the interface and asked to describe structured and continuous services provision. This will be an issue what the scenario represented. Each participant’s solution was to be discussed in further (policy) discussion in Germany. examined in addition to them completing a semi-structured questionnaire to evaluate their experience in using the system. PO1.3. Alzheimer’s caregivers health status in agriculture- When asked to evaluate their experience of using the system related population of Brittany on a scale from 1 to 10 (with 1 being poor and 10 being excellent) Goarin Hervé, Morvan Patrick, Michel Olivier, the average result from all 10 participants was 8.0. Participants Somme Dominique were also provided with the opportunity to provide free response feedback in relation to both positive and negative elements in The French national agricultural social security service covers relation to their usage of the system. Consistently, positive feedback pensions and health expenses for active and retired farmers and from participants commented upon the ease of use of the system agriculture-related employees, i.e. 595.000 people in Brittany in addition to its aesthetical appeal. Negative feedback from (western France). The study: to analyse the health-related resources participants was mainly found to be in relational to minor usability consumption of spouses/care-givers of people with Alzheimer’s issues which will be addressed in the next release of the software. disease Overall, based on the evaluations the interface has proven its utility Method: The regional database was checked to obtain study in providing a means to allow non-technically orientated healthcare population. Spouses/care-givers in this study had to be covered by staff to describe the rules required to manage technology within the same social security service and live at the same address. Study a home based environment. Results following the evaluations will population was defined by reference to Alzheimer’s diagnosis or the be used to guide the re-development of the interface and plans are prescription of a specific drug. Co-morbidity of people and health currently underway to conduct evaluations with a larger cohort of users. status of spouses/care-givers was established through payment exonerations and drugs consumption. PO1.2. Low-threshold support services for community- Results: 4 112 people are known to have Alzheimer’s, 953 men (mean dwelling people with dementia in Germany – age: 81.4) to 3’159 women (mean age: 84.3). Only 29% (1196) are Volunteers turning into professionals currently married, 2’509 (61%) widowed. People psychotropic drug

28 Living well in a dementia-friendly society / Malta 2013

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consumption: SSRIs(4.3%), hypnotics (3.84%), benzodiazepines accidents or hospitalisation, when the older person is not able (3.78%), anti-convulsive (2.40%) other anti-depressive (2.35%) anti- anymore to provide the information.It facilitates the information psychotics (0%). Spouse/care-givers health status: among the 1’196 and coordination work with the older person , for example to married patients, 457 live with their spouses. 322 care-givers (only prepare her return at home after an hospitalisation. Collection of 3 women) have serious affections. 179 (58%) have severe cardio- useful administrative data becomes prevention and education vascular problems and 87 (27%) have cancer. 369 care-givers (78%) tools.It allows the older person to build progressively her aging and benefit from paramedics interventions. 12% receive psychotropic to keep a control on her choices, particularly in the choice of the drug, mostly hypnotics and benzodiazepines. stakeholders, the close contact or the referent person. Conclusion: Discussion will emphasise on specific drug prescription, high rate of cancer in care-givers and the low prescription of PO1.5. Social support group interventions in people with psychotropic drug in this agriculture-related population dementia and mild cognitive impairment: A systematic review and meta-analysis PO1.4. Accompanying card for older persons staying at home: Leung Phuong, Orgeta Vasiliki, Orrell Martin Coordination, prevention and education tool for accompanying and allowing older persons being active Background: Social support group interventions for people with Closon MC, Praet JP, Zamora C ,Caty M, Mormal M., dementia aim to help patients gain a better understanding of their Baeyens JP illness, express their feelings, share experiences, and develop coping strategies to cope with the disease. There are currently no studies Introduction: A survey leads among elderly and/or persons with or that attempt to review systematically the benefits of social support without dementia showed that older people who stay active within group interventions for people with dementia and mild cognitive their immediate environment, use a social network or services, look impairment (MCI). This study aimed to review the benefits of social for and establish progressively solutions, seek for assistance when support group interventions in improving well-being for people with dependence or cognitive problems are appearing, have more chance dementia and MCI. to stay at home. Prevention seems to be primordial. Methods: Systematic Electronic databases were searched for Method: The project leaded in a commune of Brussels with medical randomised control trials from 1985 to 2013 inclusive. Two reviewers and social actors aims to develop an accompanying card for older worked independently to select trials, extract data and assess risk of people, which encourage them to prepare actively their “ageing bias for each of the studies meeting inclusion criteria, according to well’. This card is proposed to all older persons by the medical the criteria set by the Cochrane Review Group. (hospital, medical doctor, nurse) and social actors of the commune. Results: A total of 623 studies were identified of which 2 met In a similar size and attached to the ID card, the accompanying card the inclusion criteria for this review. We found that although an has to be filled in with the older person or caregivers and include the increasing number of studies have evaluated the effects of social following information: support groups for people with dementia in the last two decades, the majority of the studies have used either qualitative methods or -- The private address of the older person, in case she is lost or has pre and post design methodology. In the 2 randomised controlled an accident or an emergency hospitalisation; trials identified, all participants (n = 197) were diagnosed with mild -- The coordinates of her general practitioner: It is useful to encour- dementia. When pooling data from the 2 studies we found that age the elderly to have a general practitioner for the medical support groups do not decrease depression in people with dementia follow-up but also as a “spoke person” with other medical doc- [(standardised mean difference (SMD) -0.91; 95% confidence interval tors in case of an hospitalisation; (CI) -2.03 to 0.22)]. Data from one of the studies showed that support -- The name of a close person to contact in case of an emergency; groups were favored in improving quality of life (Qol) for people -- A referent person to whom the elderly says her wishes in case she with dementia (mean difference MD) 1.86; 95% (CI) -0.29 to 4.01), is not able to express them by herself (aggressive therapy …); however the results did not reach statistical significance. The same -- The name of 4 persons or social services allowing her to stay at study however showed that participation in social support groups home. This aspect allows the elderly to be aware of the impor- increases patient self-esteem as measured via self-ratings [(mean tance of building a network; differences (MD) 4.70; 95% (CI) 1.46 to 7.94)]. -- The contact name of a person within the commune who eventu- Conclusions: Although a lot of studies have investigated the benefits ally knows the older person but has also a good knowledge of the of social support group interventions for people with dementia there resources available within the commune; are only a few well-controlled trials. Our results show that social -- A “free/blank” space where the older person can write her wishes. support groups do not decrease depression in people with dementia or result in increases in self-reported QoL. Limited data from one Results: This card is now used by all medical and social actors in the study show that support groups may increase self-esteem in people commune. It proved to be useful in case of loss, cognitive problems, with early stage dementia, however future studies are required

29 23rd Alzheimer Europe Conference

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to reach a definite conclusion. The present review highlights the paucity of high-quality RCTs in the area. We conclude that social support groups may be of psychological benefit for people with dementia and therefore merit further research. PO1.7. Multimodal non-drug therapy on dementia symptoms in nursing home residents with PO1.6. Effectiveness of a newly created curriculum for degenerative dementia in Thailand caregiver intervention in Mecklenburg-Western Chankrachang Siwaporn, Singhanetr Sasiwimol Pomerania Kilimann Ingo, Schwarz Sabine, Luplow Maik, Greve Ute, Objectives: To determine the effect of multimodal, non-drug Hoffmann Wolfgang, Teipel Stefan therapy on depressive symptoms in Nursing Home residents with degenerative dementia. Introduction: Almost 70% of people with dementia (PWD) in Design: Observational study in one nursing home in Chiang Mai Germany are cared for at home by a family caregiver (CG). Often province. CGs at the beginning of the disease have little information about Participants: Nursing home residents with primary degenerative disease course and upcoming difficulties; they are at risk to get dementia (Mini-Mental State Examination score < 24). overstressed, the likelihood of a nursing home admission of Intervention: The intervention comprised three components: motor the PWD increases with the burden of care for the CG. Previous stimulation, activities of daily living, and sensory stimulation. studies on CG intervention including education, training, support Measurements: Overall geriatric symptoms were recorded using or counselling showed a reduction of CG burden, improvement of the Nurses’ Observation Scale for Geriatric Patients, ADL functional CG well-being and delayed nursing home admission. However, the independence using the Barthel Index, and caregiver evaluation. implementation of CG support and education in the real world care Results: 38 were included in the intention-to-treat analysis At system, especially in demographic focus region such as rural areas early at 1 week, results of the per-protocol analysis (n = 37) showed of Mecklenburg-Western Pomerania (MV), is still little understood. improvement of the caregiver happiness index. The total care time Here we show the feasibility, implementation and effectiveness of a per case is also reduced. CG education in heterogeneous contexts of care in rural and urban Conclusion: As early as 1 week the multimodal intervention improved areas of the German Federal State of MV. The CG intervention has behavioural symptoms in nursing home residents, especially in been designed and implemented in close collaboration between the social behaviour and IADL capabilities. German Alzheimer Association, Section MV, and the DZNE Rostock/ Greifswald. PO1.9. Population based norms by age and education for the Material and Methods: We conducted a total of four independent MMSE. Ilion, Helioupolis Municipalities Hellenic CG education courses (two in rural, two in urban areas) with eight Study (Il.Hel.M.Hel.St.) modules each led by a trained nurse. A total of 39 CGs completed the Solias Andreas, Skapinakis Petros, Degleris Nikos, Pantoleon course. Modules included information on the symptoms, the course Maria, Politis Antonis and the causes of dementias and specially of Alzheimer’s disease, exercises for the management of challenging behaviour, social care Introduction: For the last 38 years, Mini Mental State Examination and legal matters. (MMSE) has been widely used as a dementia screening measure Results: Our modular curriculum fitted needs and expectations of in everyday clinical practice as well as in both cohort and cross- CG as noted in baseline questionnaires. Over 80% of participants sectional studies. Its validity and reliability for the Greek population wished to receive education on the disease, counselling on disease has explicitly been documented. However, the effect of age and specific problems such as challenging behaviour and legal affairs. education on the subject’s performance makes it necessary to Many CGs did not have enough information on the disease and reckon them in the estimation of the “cutoff score”. available formal and informal resources of support. Post-program Purpose: To estimate the prevalence of dementia in Greek population evaluation showed very high rates of satisfaction with the and determine the “cutoff score” by age and education-corrected curriculum. The results were consistent across rural and urban norms. settings. Methods: Cross sectional study of 630 patients older than 55 years, Conclusion: CG of PWD often have not sufficient information about who live independently in Ilion and Helioupolis Municipalities. specific sources of support. They wish to be better informed, but Results: 27.3% of the subjects tested in the study were diagnosed also want exchange among other CGs and hands-on training on with memory disorder according to their MMSE scores and the coping with challenging behaviour. Our curriculum fits the needs validation for the Greek population. The effect of age and education and expectations of CG in rural and urban areas of the demographic to the subjects’ performance was statistically significant (p=.000). focus region MV. The use of standard “cutoff score” was not proved to be useful for the personalized interpretation of the results, as documented by

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the fact that older individuals with lower education had a poorer prevention, treatment and continuously support for patients with performance relatively to younger, highly educated subjects. AD and their carers – to enhance quality of life for persons with Comparatively to the group age of 55-60 years, the odds ratio after dementia. Several member states, including Denmark, have signed the age of 75 years varies from 2.58 to 4.91. Regarding the variable a National Dementia Activity and Strategy Plan. In continuation of factor of education, the odds ratio for the first degree education these strategies The Nursing School of Hjoerring, University College graduates decreases from 1.43 to 3.19 for the third degree education of Northern Denmark, has worked with curriculum development in graduates in comparison with the group of illiterates. dementia care. Conclusion: The use of the “cutoff score” algorithm and the Purpose: Curriculum development: To initiate and improve second- simultaneous estimation of age and education effect on MMSE score year students’ professional knowledge and personal attitudes may prove useful for the proper evaluation of MMSE performance. towards persons with dementia and their families - in community According to the age and education of examine candidates in the nursing care as well as in residential care. community and the primary care, we propose the use of the 25th Method: Systematic search for literature about stigmatising percentile as a more useful cutoff score in order to decrease the false attitudes among young nursing students towards persons with positive results. dementia. The search also includes literature about learning activities which bring aesthetic learning contents and processes in PO1.10. The utility of cognitive tests in predicting safety to focus - and hereby challenge the negative attitudes towards a more drive in people diagnosed with dementia positive, empirically based approach to dementia care. Vella Kristina Historical reading of AD. AD as a conceptual term, as a biomedical and psychiatric disease with aggressive behaviour or as a neurological Introduction: The utility of cognitive tests in predicting safety and age-related, chronic disease which calls for a person centered to drive in people diagnosed with dementia is well-established. care with rehabilitation in the family. As conclusion to this reading However, there is still no consensus on which tests are the “gold the theoretical platform for dementia care in Hjoerring is outside standard” in predicting driving ability. psychiatry and inside the humanistic module of second year. A Objectives: To carry out a systematic review on the recent literature module which integrates communication, psychology, pedagogy, examining the neuropsychological tests that are associated with nursing practice and meta theories – and offers nursing students a driving ability in individuals with dementia. platform to catch dementia illness from the perspective of patients Method: A literature search of a number of electronic databases and families, bridges the gap between person and disease and including Medline, PsycInfo and EMBASE from 2005 to 2013. This incorporates altruistic values in dementia care. was supplemented with hand searching of relevant journals. Classroom teaching follows a didactic, relational model. Aesthetic Results: Twelve articles met the inclusion criteria. The most learning contents and processes including use of narratives, are routinely used tests yielded inconsistent results. However, tests highly in focus. Compulsory student group work finishes classroom within the domains of attention and concentration, visuospatial teaching – to improve students’ ability to identify nursing problems skills and memory and learning were found to be most closely and strengthen their academic argumentation. associated with driving ability. Three studies provided cut-off scores Results: for neuropsychological batteries they developed. -- Two (of many students’ statements) catch the learning process Conclusion: The results from this study confirm the findings of “Dementia care is much more complex than I thought” “I have previous reviews. There is no individual measure that can adequately never been aware that I can make the person’s illness worse”. predict fitness to drive in people with dementia. However, as -- The clinic nurses states that our students’ interest in dementia evidenced in recent studies a combination of tests tapping various care has improved - in community nursing care as well as in cognitive domains is more accurate at predicting ability to drive. residential care. In addition, the use of cut-offs in these studies is a very important -- A Danish poster version won the annual poster prize, Danish step in this areas of research as it improves the clinical utility of National Knowledge Center of Dementia, 2011. neuropsychological tests. PO1.12. Singular and socially oriented group living for PO1.11. Dementia curriculum development in Nursing persons with dementia vs traditional nursing home- Baccalaureate Study a pilot study Naldahl Karin Span Ursula, Span Edith, Auer Stefanie

Background: In 2009 the individual Member States within The Introduction: The appropriate stage specific care of persons with European Commission were asked to recognise Alzheimer’s Disease dementia (PwD) in institutional settings is becoming a specialty (AD) as a priority on the European public health arena and to compose and specific knowledge is required. Creative and affordable ideas for a European Plan of Action for the purpose of improving the research, optimising the quality of life for PwD, the care team and the involved

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relatives are now needed. In the development of new concepts, the outcome variables are caregiver burden and depressive symptoms. appropriate balance between physical/medical care and social care A longitudinal database collecting disease related variables, social concepts seem important. There is some evidence in the literature variables, organisational variables and caregiver variables was that small-scale and homelike facilities with a socially oriented care created. concept may be a more appropriate living environment for PwD. In Results: 6 Dementia Service Centres (DSC) were established this pilot study we compared a newly developed socially oriented throughout the county of Upper Austria since 2002. The feasibility group living environment in which care is only provided on demand of all treatment elements for the structure is established. About with no organisational connection to an institution (singular) to 80% of persons treated in this structure receive a medical diagnosis traditional care environments. during their treatment in the DSC. Methods: In this longitudinal observation design, PwD residing in the Conclusion: The model of DSC has been successfully established and group living were matched to PwD in traditional care environments. is well accepted by the population. The programme is funded by the All persons are assessed at baseline, 3 months and 6 months. A County of Upper Austria. follow up observation after 6 months was set up. As main outcome variables, Quality of life (QOL-AD; Person with dementia version) PO1.14. What influences place of care and death of people was chosen for the PwD. For the care team, the main outcome was with dementia? A systematic review of qualitative Work Satisfaction and a global measure of change (CGI), for family evidence members, QOL-AD (family version) and a CGI was used. The pilot Gysels Marjolein, Johnston Bridget, Bausewein Claudia, study started in July 2012 and will end in July 2013. Petkova Hristina, Shipman Cathy, Murtagh Fliss Results: 36 PwD in the different stages of the disease were recruited. Results of the study will be presented at the meeting. Objective: Planning for quality care in terms of access to services and preferred place of care and death needs to build on best PO1.13. Dementia Service Centers in Austria: A comprehen- available evidence. We systematically reviewed qualitative evidence sive Support Model for Persons with Dementia and on preferences and factors influencing place of care and death for their Carers people with dementia. Auer Stefanie, Span Edith, Reisberg Barry Method: This is part of a large systematic review on place of death for patients with non-cancer conditions. Six electronic databases, Objectives: Early disease detection and early treatment are reference lists, cited references were searched. Original studies prominent goals for improved Quality of life (QoL) of PwD (WHO relating to people with dementia, in all languages, study types and 2012). Traditional medically oriented structures often do not meet publication status were included. Study quality was assessed with a the needs of PwD and their family members for post diagnostic standard scale. A narrative synthesis was conducted. support and treatment. Providing low threshold long-term Results: 12 qualitative studies relating to people with dementia were community services for Persons with dementia (PwD) promoting identified, and 3 other studies reported on mixed samples, including independent functioning of PwD and supporting caregivers could people with dementia. The studies investigated issues of: 1. Hospice be a possibility to reach this goal and work against the exclusion of care: access to hospice care was problematic. Hospices were poorly PwD from our societies and reduce stigma attached to this disease. attuned to dementia care. 2. Home care: One study showed the The Model of the Dementia Service Centre (DSC) was developed for necessary conditions that make home care possible for people with this purpose. dementia. 3. Entry into care homes: diverse and difficult decisions Methods: The team of a DSC consists of social workers, psychologists for families precede placements. 4. Decision making: the strongest and specially educated trainers. Firstly, persons are welcomed to theme was the emotional burden of end of life decision making. the structure and receive information about the service provided. Preferences were not necessarily consistent with carers’ values, who Persons with memory dysfunction are screened by a psychologist received little support in their caring role. and referred to a medical specialist for medical diagnosis. PwD are Conclusion: Advance care planning is crucial in achieving preferred offered a stage specific training either in group or single sessions place of care and death for older patients and those with dementia. at least once per week for 2-3 hours and caregivers are offered Preferences and factors influencing place of care/death were teaching modules, support groups and individual counselling complex, influenced by families’ needs, and frequently evolved over sessions. Close to the community actions (festivities, dances, time. and lectures) are taken to promote inclusion of PwD and their caregivers into the community. In order to reach as many affected PO1.15. Where do we start with the improvement of care for families and the general population, actions are taken to work frail, older people: action points from the Dignity against the stigmatisation of PwD. The main outcome goals of this Network Group treatment model are early disease detection and the prevention Gysels Marjolein, Cohen-Mansfield Jiska, Achterberg Wilco, of premature institutionalization of PwD. For caregivers the main Husebo Stein, Husebo Bettina

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excellence in training staff and carers to look after people with the Objective: European governments are now preparing for the illness. predicted increase of care needs at the end of life. Meanwhile, Perhaps more than for any other building type, the environment and quality of care for frail, older people remains poor in practice. We layout of a Dementia unit can influence the health and well-being aimed to identify priority areas for the improvement of care for frail, of the residents, and play a role in improving their level of care. older people and the actions required to achieve this. The presentation will describe how the design responded to the Method: An international meeting was organised and participants behavioural effects of Dementia symptoms. The brief was developed were selected from an expert network of care for frail, older people. using latest research and an intensive structured consultation The workshop consisted of presentations on priorities from multiple process with specialist clinical staff, existing patients and their country and disciplinary perspectives with a focus on Europe, and carers. structured group discussions. Analysis applied standard qualitative Interiors are designed to retain a domestic feel, and each ward is techniques. grouped around an internal themed courtyard. The presentation will Results: The workshop comprised 20 participants from 9 countries describe how an attractive and stimulating internal environment in Europe and Israel. They identified priority areas on: aims to improve quality of life for patients. Communal spaces are 1. A conceptual level: a) raising awareness to the importance of focussed towards sensory stimulation and encouraging activities by quality care for older people, and recognising staff’s competence; residents, visitors and carers. b) developing new care models based on systematic evidence and The design team worked with an Arts Coordinator to incorporate accurate definitions. artwork by local artists. This ranges from a large suspended mobile 2. A practical level: a) providing care with special attention to access in the circulation ‘hub’, through murals, to sculptures in the to care, support for care workers, and reduction of regulations; b) courtyards and photos on the walls. facilitating living conditions with available medical provisions in The building is highly sustainable, achieving a BREEAM Healthcare place, avoidance of transfers, personalised care, regard for families ‘excellent’ rating. It has under-floor heating supplied from ground and expertise of care for the dying. source heat pumps; solar panels for generating hot water and They identified mechanisms to increase quality care through electricity; and a grass roof to attenuate rainwater run-off and structural changes requiring education to raise the level of expertise enhance bio-diversity. in caring for older people, and communication between the different The scheme was designed using Building Information Modelling parties involved (public, policy-makers, family, staff and family). (BIM), utilising a collaborative 3D parametric model, and the Conclusion: This meeting identified the limits of current care presentation will describe how this process can achieve improved practices in long-term care and explored the potential for change. team coordination and design integration. Collaborative initiatives between policy, practice and research were planned to realise the conceptual changes which are the driving PO1.17. Findings from the National Audit of Memory force to raise societal awareness and achieve changes in the daily Services care for older people. Hodge Sophie

PO1.16. Designing for dementia In summer 2013 the National Audit of Memory Clinics will be Boon Jon completed. This audit was commissioned by the Department of Health and carried out by the Royal College of Psychiatrists’ Centre The presentation will describe the process of designing and for Quality Improvement. It follows on from the NHS Information commissioning Hammerton Court, a new £13.5m Dementia Centre’s report Establishment of Memory Services (2011) and Intensive Care Unit for the Norfolk & Suffolk Mental Health Trust provides an update against the targets set out in the Prime Minister’s at the Julian Hospital in Norwich, which was completed in March Challenge on Dementia (2012). 2012. The project won the Constructing Excellence ‘Project of the All memory services in England and Wales are being asked to Year’ and ‘Innovation and Collaboration’ categories in 2012 for the complete a questionnaire about various aspects of their work; what Eastern Region. services they provide, cost, capacity, early diagnosis rates, waiting The unit was visited by Jeremy Hunt, the UK Health secretary, in times, service user involvement and recruitment for research October last year, his first official visit outside London. In praising studies. Here we will present the findings from the audit, including the design and facilities, he said that his visit was to learn from the general picture of memory services across England and Wales the positive and innovative work at the unit to help people with and a breakdown by region. dementia. The £13.5m unit comprises 36 en-suite rooms in 3 wards, together with lounges, treatment and therapy areas. It also houses the Norfolk Dementia Care Academy, which aims to be a centre of

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10.30–12.00 (Grandmaster Suite): PL2.2. An overview of our current understanding of the Plenary Session PL2. Prevention prevention of dementia Ngandu Tiia PL2.1. Prevention of institutionalisation and hospitalisation: What place for case management? – Findings of a Epidemiological studies indicate that Alzheimer’s disease (AD) is Cochrane Review a multi-factorial disease with several modifiable risk factors. This Orrell Martin, Reilly Siobhan, Toot Sandeep, Miranda-Castil- presentation will review and illustrate current status and future lo Claudia, Hoe Juanita, Challis David, Malouf Reem directions in AD prevention. Dementia and cardiovascular disease (CVD) prevention have more Background: Case management aims to organise and coordinate in common than previously thought. The Cardiovascular Risk care services to provide long-term care for people with dementia as Factors, Aging and Dementia (CAIDE) study is one of the long-term an alternative to admission to a care home or hospital. observational studies, that has indicated several modifiable risk Objectives: To evaluate the effectiveness of case management for factors for AD, and their interactions with genetic factors. CAIDE people with dementia on delaying institutionalisation, improving study has also enabled studying differences in risk factor profiles at quality of life and reducing hospitalisations. midlife and late-life and risk factor dynamics over time in relation to Design: We searched databases including the Cochrane Library, cognitive changes. MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS and ongoing Scoring tools for estimating dementia risk in different age groups clinical trial databases for case management studies including (short-term and long-term prediction tools) have been recently randomised controlled trials involving people with dementia formulated. Such tools are necessary for selecting participants living in the community and their carers. Outcomes included in prevention clinical trials. They are also important for health institutionalisation, hospital admissions, mortality, patient mental education and community planning. health, patient and carer quality of life, and carer burden. Data was Previous preventive trials with single agents in elderly or cognitively extracted and checked by two reviewers. impaired persons have yielded disappointing results. Possible Results: 13 trials (9’615 participants) were included in this review. reasons for this and future directions in planning preventive Four trials provided data on admissions to care homes results interventions will be summarized. The Finnish Geriatric Intervention significantly favoured the case management group at 6 months Study to Prevent Cognitive Impairment and Disability (FINGER) but not for other time points. Results from three trials found no is currently ongoing multi-domain intervention study primarily clear evidence that case management improved quality of life for designed to delay cognitive impairment among high-risk people with dementia or carers. Three trials provided data on carer individuals. The 2-year intervention has four main components: wellbeing and at 6 months a significant improvement was shown nutritional guidance; physical activity; cognitive training and social for case management. Eight trials assessed carer burden and benefit activity; intensive monitoring/management of vascular risk factors. for the case management group was found at 6 months. Six trials Experiences from the FINGER study will be presented. provided data on behaviour and this significantly favoured case A lifelong perspective is needed for managing AD. Lessons learned management at 10-12 months, and also at 18 months (3 trials). There from CVD prevention can be integrated to dementia research on the was no evidence of benefit to patient depression (3 trials), functional way from knowledge to action. abilities (3 trials), or cognition (6 trials). Discussion: This review provides good evidence for the benefits of PL2.3. Preventing behavioural problems and avoiding the case management for people with dementia in terms of (1) reduced use of anti-psychotics – the Toolbox of the ALCOVE admissions to institutional care, (2) reduced behaviour disturbance, project (3) improved carer burden and wellbeing. Case management may Leperre-Desplanques Armelle involve higher use of community services but this is offset by a lower use of acute services and hospitalisations. In most studies, Overprescribing of antipsychotics for the behavioural disorders case management was one aspect of a broader programme of in dementia represents a major worldwide safety & ethical issue care making it difficult to study the specific effects in detail. It is that has been underlined by the World Health Organisation [1]. It reasonable to conclude that case management is effective for both is well known today that chronic exposure to antipsychotics (AP) the person with dementia and their carer. Future studies should is non-effective and deleterious for people living with dementia use process measures to demonstrate the extent to which case as it can lead to falls, excessive sedation, stroke and an increased management is delivered and provided. risk of mortality, with an overall profoundly negative impact on the individual’s health, ability to communicate and quality of life.

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The ALCOVE network has provided the opportunity to make a large number of ineffective studies requires new approaches. statement in Europe on the crucial issue of iatrogenicity and New innovative concepts and interventions might lead to more overuse of antipsychotics in dementia, identified by the European effectiveness, such as the consideration of reciprocity, social Medicine Agency [2] as a priority research for 2013. In Europe, inclusion and partnership. They refer to basic human needs and methods, references, tools and expertise are available in the field of focus on citizenship rather than on carers being co-victims. safety & antipsychotics risk reduction. These successful experiences Reciprocity refers to the carers as giving persons and to their wish to might be useful for those European countries wishing to promote get something back. Carers perceive themselves as giving persons risk reduction programmes. and like to be recognised as givers, not as persons in need for care. To avoid deferring to other sedative drugs or physical restraints & to Receiving support is sometimes perceived as incompetence in caring achieve improvements in outcome for people living with dementia, and this perception should be taken into account when offering antipsychotics reduction in behavioural and psychological symptoms support. Social inclusion emphasises the need of the person with of dementia (BPSD) should be developed along with BPSD prevention dementia and the carer to be part of society and not to be excluded and management improvement, using non pharmacological because of the stigma attached to dementia. Inclusion of carers alternatives to antipsychotics and individualised patient and carer in designing interventions might contribute to its effectiveness. interventions, including psychosocial interventions. Partnership with family carers by recognition of the contributions ALCOVE European Member States have chosen to build a shared might promote reciprocity and the recognition of capabilities. These Toolbox to tackle the safety issue of limiting antipsychotics in new approaches empower carers rather than treating them as co- dementia. This Toolbox provides concrete tools, key messages and victims. experiences for all actors and in all dimensions of care: dedicated Psychosocial intervention research has room for improvement, but risk measurement & risk reduction programmes, timely diagnosis, its results already have the potential to prevent carer burn-out. An prevention & management of BPSD, and ethics in practice, all important problem is implementation: how to put interventions related to the use of antipsychotics. into daily practice. Even effective interventions are rarely used in daily practice. PL2.4. Preventing carer burn-out: from co-victim treatment With better use of the existing effective interventions and new to carer empowerment innovative interventions psychosocial interventions have a high Vernooij-Dassen Myrra potential to improve the quality of life of family carers.

Preventing carer burn-out is on the research agenda for more than 13.00-14.00 (Perellos): Special Symposium 30 years. This research aims to provide healthcare practitioners with evidence to improve prevention of carer burn-out in daily practice. SS1. “Nothing about us without us”, the European Working The acknowledgement of the burden of caring for a person with Group of People with Dementia dementia stimulated an approach in which family carers haven Aavik Stig-Atle, Baláčková Nina, Frognet Jean-Pierre, been perceived as persons in need for emotional and practical Grönkvist Raoul, Houston Agnes, Pousard Ingegärd, Rohra support and thereby stimulated treatment as co-victims. This was Helga, Slevin Dermod, Snell Rozel, Spanja Bojan, Wallace an important step at the time. The most effective psychosocial Daphne interventions to prevent carer burn-out were multi-component, tailor made, offered the opportunity to make choices and were The group currently consists of 11 people with dementia from 11 aimed at patient and caregiver. Examples of effective interventions different national associations: Jean-Pierre Frognet from Belgium, were family counselling, occupational therapy training and psycho- Nina Baláčková from the Czech Republic, Raoul Grönkvist from education. Finland, Helga Rohra from Germany, Dermod Slevin from Ireland, However, many other psychosocial intervention studies fail to Rozel Snell from Jersey, Stig-Atle Aavik from Norway, Bojan show positive effects. There are several reasons for ineffectiveness. Spanja from Slovenia, Ingegärd Pousard from Sweden and Agnes The timing is important. It’s obvious that being too late does not Houston and Daphne Wallace from the United Kingdom (Alzheimer contribute to prevention, but interventions can also be too early. Scotland and Alzheimer’s Society respectively). The group operates For instance, case management after screening for dementia independently, with its own Board and agenda of activities. The was not effective. People refused to be managed. The same case Chairperson of the EWGPWD also sits on the Board of Alzheimer management intervention is highly valued in a later phase when the Europe. complexity of problems is acknowledged by the family. Ineffective This symposium, developed and moderated by the members of the interventions might not meet the needs of family carers. Carers group, will highlight some of the key achievements of the group seem to desire an active role and a co-victim treatment might not since its creation and present interesting initiatives involving people fully meet this need. with dementia on a national level. Despite great progress in psychosocial intervention research, the Agnes Houston will introduce the session by presenting the

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pioneering work of the Scottish Dementia Working Group and its reflects the views of the authors only. influence and inspiration on the creation of the European Working Group. Jean-Pierre Frognet, Dermod Slevin and Raoul Grönkvist will present the successful initiatives that have been launched in 14.00-15.30 (Perellos): Parallel Session Belgium, Ireland and Finland to involve people with dementia whilst P1. From diagnosis to post-diagnostic support Stig-Atle Aavik will provide a personal testimony on the impact of his involvement in the European Working Group. P1.1. Changing attitudes towards dementia in general Helga Rohra, the EWGPWD Chairperson, will look back on the first practice year of the group’s existence and present ideas for future activities Vollmar Horst Christian, Michel Jacqueline Verena, Leve and priorities. Verena, Wilm Stefan, Pentzek Michael This symposium will highlight how the important motto of “Nothing about us without us” continues to influence the activities and Introduction: General practitioners (GP) are assigned a central role projects of Alzheimer Europe and its national member organisations. in caring for persons with dementia. The CADIF project (Changing Attitudes towards Dementia In Family practice) encompasses the 13.00-14.00 (Wignacourt): Special Symposium development and testing of an intervention that is based on a comprehensive understanding of GPs’ attitudes towards dementia. SS2. STAR - European Dementia Care Training In addition to conducting a systematic review, identified research Bengtsson Johan E., van der Roest Henriëtte G., Kevern groups were contacted to obtain further training material. Peter, Duca Annalise, Hrin Silvia, Abiuso Francesca, Nugent Research question: Existing interventions were aggregated by means Chris, Meiland Franka J.M., Dröes Rose-Marie, Giuliano of a systematic review. The Düsseldorf Cochrane Group supported Angele, Kingston Paul the formulation of search strategies. The search included resources available in the databases Medline, Embase, Cochrane, CINAHL, The STAR project is launching an online training portal for carers of Psychinfo, ERIC, Scopus as well as Web of Science. Persons with Dementia. The portal provides 8 modules that are ideal Results: A total of 10’220 titles/abstracts was identified and reviewed for formal and informal carers at all competence levels, dealing with by two independent researchers. About 100 full-text publications the most important day to day practical aspects of caring for people were further analysed for eligibility. In terms of preliminary or with dementia. The course content is already available in English, qualitative results, individual studies suggest that “peer-to-peer” Dutch, Italian and Swedish and has been piloted in those countries interventions possibly have an effect on GPs’ attitudes. with positive results. Conclusions: The results of the systematic review serve as a basis The symposium launches the STAR online training platform and for the development of an intervention which is at first discussed invites interested stakeholders to join in translating and adapting by focus groups. the courses, in order to make it available in further countries for long-term and sustainable operation. P1.2. Facing the challenges together: A family training The platform and the course materials will be demonstrated, and programme for younger people with dementia and experiences from piloting will be reported. The overall evaluation their carers results will be mentioned, and its details will be presented in session Garden May-Hilde, Andersen Astrid P11.1 on Saturday 12th October. Background: Nearly three quarters of all local authorities in Norway The STAR training modules are: provide support groups and training opportunities for people with 1. What is dementia? dementia and their carers. Despite having unique needs, very few 2. Living with dementia younger people with dementia receive an offer of support from 3. Getting a diagnosis and why it is important their local authority. In 2012 Norwegian Health Association and the 4. Practical difficulties in daily life and how to help by best practice National Centre for Aging and Health received financial support 5. The emotional impact: How adaption and coping influences from Norway’s Department of Health to organise eight courses behaviour and mood across the country targeted at younger people with dementia and 6. Support strategies to help people cope with consequences of their carers. The courses aim to give younger people with dementia dementia and their carers knowledge and support to help make their lives 7. Positive and empathic communication easier and better. 8. Emotional impact and looking after yourself. Method: To help plan the courses, we established working groups in Norway’s different health regions, with representatives from STAR has the ambition to become a reference European training specialist health services and the local Dementia Association. The portal for dementia care, in collaboration with national stakeholders. course took place over four days and included lectures, support The STAR project has been funded with support from the Lifelong groups, social activities. The course was evaluated through Learning Programme of the European Commission. This abstract 37 interviews with participants in small discussion groups on the last 23rd Alzheimer Europe Conference

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Results: A total of 146 people (73 people with dementia and 73 adequately informed of the memory disorders. The centres organise carers) participated in the course. The average age for people with different kind of information courses for people with memory dementia taking part was 62.4 years, and for carers was 58.6 years. disorders and their families and also establishes voluntary and The evaluation revealed that the course had given participants an peer support groups. Regional centres not only provide support experience of increased openness in their relationship with their and guidance to patients and their families, but also strengthen family and more insight into their own situation. Carers received the collaboration in the association field. With the help of regional increased knowledge and understanding of how dementia had centres voluntary associations are able to create links between each an impact on their loved ones daily life and how they could face other and with the local authorities. In network-sessions, organised the challenges together. Many described the participation in the by centres, future challenges and new ways to organise the activities programme as an emotional recess, a boost in their everyday lives rise to important role. and an oasis for growth and self-respect. The training programme So far with regional support centres it has been created a nation- will continue the next 3 years. wide network to strengthen volunteer work and cooperation Conclusion: Younger people with dementia and their carers have a regarding dementing disease. As a result, services of people with need to meet with others in the same situation as themselves. This memory disorders have improved. Regional expert and support course has given people affected by dementia the opportunity to centres ensure that people with memory-related diseases and their meet and gain more insight into their own situation. The course has caregiver have the opportunity to influence and participate as a full encouraged greater openness between the person with dementia member of their own environment. and their carer so that they can better talk with each other about dementia and everyday challenges. P1.4. Evidence based recommendations for timely diagnosis of dementia: Benchmarking against P1.3. Network of memory expert and support centres the ALCOVE recommendations provides information and guidance in Finland Brooker Dawn, Evans Simon, La Fontaine Jenny, Pajala Krista, Alaranta Maaret Bray Jennifer, Ashley Peter, Saad Karim

More than 13,000 people in Finland are diagnosed with a dementing ALzheimer’s COoperative Valuation in Europe (ALCOVE) was a Joint disease every year. Those with progressive memory disorders need Action co-financed by the European Commission and a number support and thus, they rely heavily on social welfare and health care of member states who led work programmes. This involved 30 services. With early diagnosis of memory disorders and adequate partners from 19 EU Member States, working cooperatively to treatment and support it is possible to improve functional ability improve knowledge and promote information exchange about and their quality of life. dementia. Over the past two years, we worked to produce a set of Funding granted by Finland’s Slot Machine Association in 2006 evidence based recommendations for policy makers on dementia. enabled Alzheimer and dementia associations in Finland to start The authors of this paper led the work on Early Diagnosis and nationwide pilot memory expert and support program. Thereafter Interventions, reviewing evidence from a wide range of scientific, 17 expert and support centres have been established which are policy and qualitative literature on the technical issues on diagnosis managed by the Alzheimer and dementia associations, and they and on the process of diagnosis to ensure a person centred approach cover almost entire Finland. alongside a survey of current practice in 24 EU countries. Timely The Alzheimer society of Finland coordinates the network of diagnosis is supported by the research literature and many European regional expert and support centres in order to ensure that centres countries want to improve diagnosis rates. follow common criteria, which include a commitment to network, We reflected on this evidence through a series of discussion customer orientation and evaluation of the work. The main goal is groups with people with dementia, family carers and professionals to improve and expand services for people with memory disorders (including Alzheimer Europe 2012) to develop evidence-based and their caregivers. The support centres aims to provide effective recommendations. Recommendations are provided in the key areas and well known network in cooperation with other sectors of timely detection, the diagnostic process, complex diagnoses, concerned. Centres supports and promotes memory nurses work in response to early cognitive changes and work-force. Underpinning order to provide seamless care. In addition, one of the key targets principles include the need to decrease fear and stigma; respecting is to improve the quality of life of people with dementing disease the centrality of the rights and wishes of the person with suspected and their caregivers by providing opportunities to participate in dementia; recognition that the diagnosis of dementia is a key activities organised by centres. intervention and that the needs of the person and their family/ Expert and support centres have an important role in developing significant others are central to assessment, diagnosis and post- their know-how skills and expertise in dementing diseases. Within diagnostic interventions. 3.8 million euro and over 50 employees centres are able to ensure A sound and sensitively delivered diagnosis is a key intervention that that the people with dementing disease and their families are shapes how the person with dementia and their family integrates

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this into their lives. The recommendations and the underlying decision-making seems to be by far more implicit than explicit and development work will be shared in this presentation. Using the carers tend to act according to their habitual routines. ALCOVE recommendations it is possible to benchmark the progress Discussion: Families try to maintain normality and routines for as at a local, national and European level. This will be of interest to long as possible – this includes a certain period of denial, before all those involved in the process of wanting to improve both the seeking clarity through a confirmed diagnosis. This period could be numbers of people diagnosed and the quality of that diagnosis. crucial for the success and stability of the care arrangement over Acknowledgements to Contributing Authors: the course of the disease. The domesticity is the most common Dr Armelle Leperre – Desplanques, Haute Autorité de Santé, France; care setting for persons with dementia and as health and social Tomás López-Peña Ordoñez, Institudo de Salud Carlos III, Spain; care systems are highly reliant on these resources, structures have Pr Michal Novak, Slovenska Akademia Vied – Neuroimmunologicky to be developed that enable informal carers to ‘do their work’ and Ustav, Slovakia; supporting them, rather than treating them as cases that have to be Pr Nicola Vanacore, Istituto Superiore di Sanità, Italy; managed from the outside. Dr Helka Hosia-Randel, National Institute of Health and Welfare, Finland; P1.6. Does tailored education improve the diagnosis and Bénédicte Gombault, King Baudoin Fundation, Belgium; management of dementia in general practice? Pr Anders Wimo, Karolinska Institute, Sweden. Findings from the EVIDEM-ED pragmatic cluster RCT Iliffe Steve, Wilcock Jane, Jain Priya, Thuné-Boyle Ingela P1.5. How do family carers of community-dwelling people with dementia perceive the onset of the disease? Purpose: Primary care has a pivotal role to play in dementia diagnosis Results from a qualitative study using a hermeneutic and management but under-performance is common. Policy approach pressure and financial incentivisation of dementia care in the NHS von Kutzleben Milena provides an ideal opportunity to test an educational intervention. Methods: We tested a tailored educational intervention package Background: Informal carers are the main care providers for for primary care designed to improve diagnosis and clinical community-dwelling persons with dementia in terms of providing management in an unblinded cluster RCT in twenty-three urban, as well as organising care. The results presented here come from semi-urban and rural group practices in South East England. A a comprehensive mixed-methods study (VerAH-Dem) on care search of electronic medical records identified 1072 people with arrangements for community-dwelling persons with dementia dementia across the practices. The intervention consisted of up to in Germany. The qualitative arm of the VerAH-Dem study aims to three practice-based workshops, with their content derived from examine how primary carers make everyday decisions regarding prior educational needs assessment and educational prescriptions, service utilisation over the course of the disease. The research delivered by experienced tutors. The main outcome measures were questions for this presentation are: How do informal carers interpret case detection pre and post intervention, and rates of two or more first symptoms and how do they perceive the onset of the disease? documented annual management reviews of people with dementia. Methods: A sample of primary carers (n=8) was interviewed using Results: Case detection before and after intervention was not guided interviews with a highly narrative approach. ‘Objective significantly different between arms. The estimated Incidence Rate Hermeneutics’ is applied in the data analysis to conduct case Ratio for the intervention versus the control group was 1.03, [95% CI reconstructions. (0.57, 1.86), p=0.93]. The number of people with dementia with two Results: In most care arrangements one family member assumed or more annual management reviews documented did not differ the role of the primary carer who makes, decisions widely between the two arms. The odds ratio for two or more reviews in autonomously. In general, families tended to postpone seeking the intervention arm compared with normal care was 0.83 [95% CI medical advice for a while. Different approaches to interpret first (0.52, 1.33), p=0.44]. symptoms became apparent: While some felt alerted by noticing Consequences: Despite high face-validity, positive feedback from physical deficits, others perceived cognitive decline as the most practitioners and ideal conditions for promoting change, a tailored profound change. Carers searched for external references to gain educational intervention does not improve dementia earlier orientation, to comprehend the situation, and to prepare for their identification or later support of people with dementia in general role as informal caregivers. Some assumed the existence of certain practice. This English study may have implications for development rules regarding the stages and course of the illness, which made it of community-based dementia services in other countries. easier for them to find orientation and to prepare for the future. The lack of mental capacity was perceived differently. In some cases the person with dementia was seen and treated “like a child” that had to be cared for, while others were struggling to take over the decision making power in this early stage of the disease. Overall, everyday

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14.00–15.30 (Wignacourt): Parallel Session and flag several important targets for prevention in midlife. Some P2. Preventing dementia novel risk factors like renal dysfunction were detected that will be subject to further study within the In-MINDD project. P2.1. Risk factors for dementia: A systematic literature review and Delphi expert consensus P2.2. Healthy memory, healthy aging: The importance of Köhler Sebastian, Verhey Frans, van Boxtel Martin, de proper memory processing in age Vugt Marjolein, Deckers Kay, Irving Kate for the In-MINDD Markowitsch Hans J., Staniloiu Angelica project team Memory is defined as being composed of several systems, each Background: Identifying the major midlife risk factors for dementia with its distinct neural basis. Of these systems the episodic- is crucial to effective preventive strategies and improve healthy autobiographical one is considered to have evolved latest and to be late life cognitive functioning. There exists a considerable literature most vulnerable to brain damage, stress conditions, and the effects of potential risk factors for dementia, but the validity and status of age (Markowitsch and Staniloiu, Amnesic disorders. Lancet, 2012). of individual factors are often uncertain, based on few studies, Episodic-autobiographical memory allows mental time travelling or inconsistent. Some important reviews have been published in into past and future and a synchronisation between emotional and recent years1 2. However, the field is rapidly evolving and hence this cognitive aspects of events. Consequently, especially structures information might not be most up-to-date, and some novel risk of the limbic system and the prefrontal cortex are regarded as factors might have emerged in the meantime. The FP-7 funded In- essential for an appropriate processing of autobiographical events. MINDD (INnovative Midlife INtervention into Dementia Deterrence) The prefrontal cortex, however, is known to deteriorate with age project uses two complementary approaches to summarise the best and to affect more complex functions of memory such as free evidence on preventive factors: a systematic literature review and a recall, metamemory, source memory, prospective memory. Positive Delphi expert study. feelings, on the other hand, are dominating over negative ones in Methods: In the Delphi study, eight leading European and non- healthy aging. Both factors interact and determine the well-being European dementia experts were asked for their opinion regarding in age. important risk factors. Their responses were synthesised with We will discuss variables and prerequisites for proper learning information from an updated systematic review. The literature and memory during the life span with an emphasis on changes search was conducted in PubMed using the search strategy from in memory processing in both healthy individuals and those with Plassman et al. (2010) 1. All new publications between October 2009 beginning memory deterioration – in particular with age-related and December 2012 were included if they fulfilled the following degenerative diseases. Furthermore, we will use own results from inclusion criteria: population-based cases and controls; sample functional brain imaging studies in normal subjects of different size N>200, follow-up duration >1year; participants aged ≥ 45 years; ages to depict the development of autobiographical memory across prospective design; outcomes: incident dementia, incident cognitive the life span and to argue for the importance of the ventromedial impairment, cognitive decline on repeated measures. The search prefrontal cortex for an integrated binding of memory, based on yielded 3,127 abstracts, of which 327 (10.5%) were included based on aspects of time, self, and consciousness. title and abstract for further scrutiny. From these, information on study design, exposure and outcome measurement and direction P2.3. Low cognitive activity as a risk factor in cognitive and magnitude of effects were extracted. Results were then pooled decline with the original review by Plassman et al. (2010) 1. McGarrigle Lisa, Boran Lorraine, Irving Kate, Verhey Frans, Results: All top-10 risk factors named by experts were among the van Boxtel Martin, Kohler Sebastian best-documented risk factors based on the systematic review, and all were included among the most important risk factors Aims: The main objectives of this research are to model the roles from a previous review 2. There seems to be good evidence of cognitive activity in developing, as well as protecting against from prospective studies for the following midlife risk factors: dementia by initially conducting a meta-analysis of cognitive hypertension, depression, diabetes, obesity, physical inactivity, dementia risk/protective factors, and then validating these models smoking and alcohol consumption. In contrast, some candidate in a longitudinal ageing study data set. Low cognitive activity in risk factors emerged from the review that require further validation. middle age has been identified as a risk factor in cognitive decline; These include: hyperlipidemia, coronary heart disease, low cognitive however the relative risk of this factor remains unknown. However, activity, renal dysfunction and functional impairment. the impact of high cognitive activity as a protective factor against Conclusions: There is considerable agreement among dementia dementia is unclear. High levels of cognitive activity are thought experts and current best-evidence literature on the role of several to boost cognitive reserve (CR) or the brain’s capacity to cope with risk factors for cognitive decline and dementia. This provide strong pathology in order to minimise symptomatology (Siedlecki et al, support for somatic and lifestyle factors in the etiology of dementia 2009). Even though models of CR have proved wanting because of

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the lack of evidence to address the issue of construct validity; Satz in vascular dementia group (p<0.005) and in the control group et al.’s (2011) four-factor conceptual model of reserve is empirically (p<0.05). testable. This study therefore aims to investigate the role of Conclusion: Low vitamin D level and high total cholesterol level cognitive activity in dementia risk and protection using Satz et al.’s were found to be associated with Alzheimer and vascular dementia (2011) conceptual model of CR. groups. Body mass index appeared not to play any substantial role Methods: The methodology will adopt a dual approach that will in dementia. The absence of the likely negative relation between include both meta-analyses and validation of a risk and protective vitamin D and total cholesterol in the dementia groups as found model. Two meta-analyses will be conducted to evaluate the role of in the control group made us to think that the possible regulatory low cognitive activity as a risk factor and high cognitive activity as a mechanisms between vitamin D and total cholesterol was impaired protective factor in cognitive decline. Satz et al. (2011) CR model will in both Alzheimer and vascular dementia. be tested against two longitudinal ageing study datasets – MAAS (N=1800) and DESCRIPA (N=880). The Maastricht Ageing Study (MAAS) P2.5. Polyphenols in the prevention of Alzheimer’s disease - is a 15-year follow-up study on cognitive ageing. The CR model will some food for thought? be developed using this large dataset of risk factors and cognitive Camilleri Georgette-Marie decline/dementia outcomes. The model will then be validated using an independent dataset from the DESCRIPA study – a multi-centre The production and accumulation of abnormally folded beta- European cohort study on ageing and dementia. This study will also amyloid peptides and microtubule associated protein tau in the have 15 years of follow-up at the time of analysis. brain is a major hallmarks in the pathophysiology of Alzheimer’s disease. P2.4. Lipid soluble vitamins, lipids and body mass index in This poster aims to review the mechanisms through which several Alzheimer and vascular dementia polyphenolic compounds, present in our diet, act to delay beta- Koseoglu Emel, Baydemir Recep, Saraymen Recep, amyloid plaque formation in the brain. This can in turn, delay the Cetin Aysun onset and progression of cognitive deterioration in Alzheimer’s disease. Aim: This study is aimed to evaluate serum vitamin A,E,D and K, Epigallocatechin-3-gallate, the main polyphenolic constituent of lipids and body mass index in people with Alzheimer and vascular green tea, was shown to reduce beta-amyloid plaque generation, dementia with respect to healthy control group; and the relations possibly by promoting α-secretase cleavage of amyloid precursor between these parameters, hoping to find a clue for the prevention protein, as well as by inhibting the activity of various proof dementia. inflammatory cytokines. Moderate consumption of red wine, rich Patients and Methods: Sixty people with Alzheimer dementia, 52 in polyphenol resveratrol, decreases the level of reactive oxygen with vascular dementia and, 61 sex and age matched healthy persons species in the brain, and can also act directly to promote beta- were involved into the study. In addition to the investigations amyloid lowering activity. Based on the fact that the majority of for the evaluation of dementia; serum vitamin A,D,E,K and lipids’ polyphenolic compounds found in red wine are derived from the levels (total cholesterol, trigliceride, LDL, HDL) were measured; body grape seed and skin, grape-seed polyphenol extract can also be used mass indexes were calculated in all subjects. The study groups as a red wine alternative, to interfere with the assembly of amyloid were compared with respect to these parameters. Additionally, the beta plaques and possibly tau peptides into neurotoxic aggregates. relationships between the parameters were examined in all groups. Anthocyanins present in berries and curcumin found in turmeric Results: Among the vitamins, only vitamin D was found to be lower have also been shown to be neuroprotective. in dementia groups with respect to the healthy group (p<0.001). No All in all, Alzheimer’s disease is a growing public health concern significant difference was found between Alzheimer and vascular with potentially devastating effects. Simple measures, such as dementia groups. With regards to lipids, only total cholesterol level consuming a diet rich in polyphenolic compounds may help to was found to be significantly higher in dementia groups than that prevent or slow the progression of cognitive impairment in our in healthy control group (p=0.001). No significant difference existed population. between Alzheimer and vascular dementia groups. There was not any significant difference among the study groups with regard to P2.6. Epidemiology and genetics of Alzheimer´s disease body mass index. Povová Jana, Janout Vladimír, Sery Omar, Tomaskova Hana, On the evaluation of the relationships among the levels of vitamins Ambroz Petr, Pohlidalova Anna and lipids, vitamin D was found to be negatively correlated with total cholesterol (p<0.05) in only healthy control group. There was Alzheimer´s disease (AD) is one of the most important diseases in not any significant relationship in dementia groups. the world affecting older population. Official statistics are likely On examining the relationship of body mass index with other to significantly underestimate the actual prevalence of AD. In the parameters, it was detected to be correlated with triglyceride level Czech Republic there is about 120,000 cases officially registered and

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etiology is not known only suspected in form of genetic, vascular ‘songs for life’ and the live performance of an intergenerational and psychosocial risk factors. choir of people with dementia opening up for the rock band Muse. In 2010 research project Epidemiology and Genetics of Alzheimer´s But most importantly: people with dementia, their caregivers and disease has been launched in the Czech Republic to asses the effect professionals could speak out, seven days long. Recent research of those risk factors on the group of 800 cases of AD and group of shows us not only the massive impact of the campaign, but also 800 controls. gives us more information about the perception that people Pilot evaluation presents results from 361 cases and 130 controls. It have of dementia. To conclude, we present the most important is suggested, that patients with AD have more often cardiovascular facts & figures and set up a future strategy for local, national and disease in their history, they drink more alcohol and more smoke. In international projects that want to break down the taboo concerning this pilot evaluation there has not been found statistically significant dementia. difference in diabetes mellitus, hypertension and cerebrovascular disease, probably because of small sample size. P3.2. Evaluation of dementia knowledge, attitudes and Relationship among the ApoE4 allele and the higher risk of AD has educational needs among nursing students been found. Scerri Anthony, Scerri Charles Supported by the Czech Ministry of Health grant project no. NT11152- 6/2010. With increasing number of individuals with dementia, nursing students are more likely to come into contact and care for dementia 14.00–15.30 (Vilhena): Parallel Session patients during their clinical placements and once they qualify. P3. Perceptions and image of dementia Nevertheless, they may not be adequately trained during their undergraduate study programme and lack of support during their P3.1. How to change the dominant perceptions of dementia – placements may negatively influence nursing students’ attitudes. presentation of two recognised good practices Thus, measuring the level of knowledge, attitudes and educational Constant Olivier needs of nursing students could be an important step in providing evidence on the need of enhancing dementia care training in the People with dementia are often faced with prejudice and media nursing curriculum. A questionnaire survey consisting of the tend to reinforce the stigmatisation of dementia. As a result, people Alzheimer’s Disease Knowledge Scale (ADKS), the Dementia Attitude with dementia, but also those around them, lose contact with Scale (ADS) and a self-developed 3-point Likert scale assessing local society. The academic study ‘Frames and counter-frames: students’ training and educational needs was distributed to all giving meaning to dementia’ helps us to understand the ‘dominant nursing students reading for their degree at the Faculty of Health frames’. These images and ways of speaking about dementia spread Science at the University of Malta. The findings (61.3% response a one-sided negative image. A more resolute use of counter-frames, rate) indicated that nursing students had an adequate knowledge a discourse that focusses more on the possibilities of people with and showed positive attitudes towards individuals with dementia, dementia, might reduce the stigma that surrounds dementia. including Alzheimer’s disease. Age, academic year, level of training With the campaign ‘Vergeet dementie, onthou mens’, the Flemish and previous care of dementia patients during clinical placement government wants to implement these inspirational research were all found to be associated with increased knowledge and results. In this presentation, we focus on the communication positive attitudes. Dealing with challenging behaviour scored strategy and the rise of some unique projects that carry out the the highest on the training and education needs by students. message of empowerment. The campaign works bottom-up, in Significant gender differences were reported on the necessity of permanent reciprocity with the main target groups. The objective: having more training on communications skills, individualised care the implementation of local good practices of integrated care. plans, care and treatment decision-taking and end-of-life patient This approach was recently recognised by the Flemish media. With management and care. In conclusion, knowledge and attitudes of the large scale solidarity campaign ‘Music For Life for dementia’, nursing students in Malta towards persons with dementia could the Flemish Expertise Centre On Dementia, The Flemish Alzheimer be markedly improved by enhancing dementia care training and League and the Alzheimer Research Foundation launched an improving their clinical experience. international unseen initiative. For the first time the national media set up a campaign to reduce the stigma on dementia. Their tools: P3.3. Dementia in the movies: portrayal of life in an the power of music, the creation of a badge to show your support for institution people with dementia and their caregivers, a massive launch of local Gerritsen Debby, Roel Wendy, Kuin Yolande actions to thank people who wear the badge and an online platform to register your personal memories through music, as a way to show Background: Although dementia affects more than 30 million the power of reminiscence. people worldwide, negative stereotypes about its consequences are The result: 625 000 sold ‘badges for life’, more than 20’000 registered still prevalent. Research shows that the general public’s knowledge

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and beliefs about dementia need enhancement and that persons their caregivers has evolved in the media and culture within the last with dementia and their caregivers experience stigma. Stigma is five years. Media include printed press, documentaries, awareness also attached to nursing homes and those who work in them. campaigns. Cultural productions include fiction materials such as The portrayal of psychiatric illnesses in visual media influences the novels, theater plays, films, television series etc. public’s perception and contributes to the stigmatisation of these Methods: the national and international Press review of the illnesses, but little is known about the quality of the depiction Fondation Médéric Alzheimer (about 60 pages monthly) has been of dementia in the movies, including the portrayal of life in an analysed over the last five years. This core corpus was enriched by a institution. further bibliographic search in media and cultural productions. Aim: study the portrayal of the professional environment of Results: Observed trends show that: persons with dementia in recent motion pictures with the following Alzheimer’s disease has been trivialised, becoming a “background questions: 1) how is the physical institutional environment noise” both in media (coverage of research advances, local displayed; and 2) what institutional policies are presented? stories) and fiction works (notable use by singers and comedians, Method: Motion pictures (released January 2000 – March 2012) were development of child literature etc.) searched in the Internet Movie Database using the search terms Discourse became more elaborate, sophisticated, diversified and ‘dementia’, ‘Alzheimer’s disease’ and ‘senility’. much more complex than ten years ago. Terms became more Inclusion criteria: 1) (possible) dementia is a theme; 2) a long term technical. Dossiers about neurosciences and neuro-imaging do not care institution is shown; 3) the person with dementia is older than hesitate now to be precise. 65; 4) the movie is accessible for a large audience, (released in the Two main questions arise often: “What to show?”, “What and how USA and either the UK or the Netherlands); 5) the movie could be to communicate?”, without miserabilism or overly naïve optimism. obtained by the authors. This selection procedure resulted in 12 Alzheimer’s associations are notably faced to this critical issue. films. Recently, some films (like The Iron Lady) have been controversial, Independently, the authors watched all movies, selected relevant giving rise to discussions and debates in the public space. scenes and described displayed information about institutional Several iconic figures embody the “struggle” against Alzheimer’s policies; one of them literally wrote down the dialogue. Then, the disease: “medical stars” are still leading the show through their researchers independently scored an observational measure derived technical expertise; in the same time, the mythical figure of the from several existing measures rating the institutional environment. caregiver supporting the person with dementia has been given Subsequently, they discussed their scoring and reached consensus a different place; regarding to people with dementia, even if on differences of opinion. Alzheimer’s disease may still sometimes be perceived as shameful, Results: 1) The physical environment of the institutions shown some figures have decided to reveal their disease in a media-covered is generally agreeable, although the second and third floor are coming-out. mentioned as floors for ‘the more progressed’ in several movies and The person with dementia may be entrusted with an anthropological- are portrayed soberly with disengaged patients in their pajamas. like function of a truth-teller (provided by her presumed sincerity, 2) Five movies show extraordinary policies, e.g. in two movies unpretentious honesty, as a “deprived” human being) and of a the person with dementia is chained to his bed. In another two whistleblower revealing dysfunctions of the society. the husband is forbidden to visit his wife, which, in one of these, Conclusion: Social representations have significantly evolved in the concerns the first 30 days of her stay. recent period. Issues surrounding Alzheimer’s disease appear now in Conclusion: although in most movies the atmosphere in the emerging countries, like China, India or South Korea. Little is known physical environment is rather good, especially for persons about social representations of the disease in the Arab world or in with mild dementia, several movies show negative stereotypes, Africa. specifically in more advanced dementia. To prevent stigmatisation the depiction of the professional environment in motion pictures P3.5. Dementia, What Comes to Mind? needs improvement. Mc Parland Patricia

P3.4. Perceptions of Alzheimer’s disease in the media and in Background: Recent policy recognises the importance of public the cultural productions: evolutions from 2008 to 2013 awareness and the implications in terms of help seeking behaviour Ngatcha-Ribert Laëtitia and early diagnosis. However public understandings are also significant in terms of the ways people respond to someone The representation of Alzheimer’s disease in media and culture has who has dementia. Despite increasing awareness of dementia, increased significantly, giving rise to a rich, subtle and complex people living with this condition continue to be marginalised and production. stigmatised. Their citizenship and status as members of society is Fondation Médéric Alzheimer has conducted a study to measure how not secure. This paper reports on qualitative findings from a PhD the perception of Alzheimer’s disease, people with dementia and study exploring how the general public understand and respond to

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dementia. Specifically, it describes the self-reported responses of Results: For all psychological well-being outcomes, the cognitive the general public to people with dementia and discusses how these and AD concerns measure was a significant predictor (p<.001) net views might impact on their status in society, of other effects. Neither subsample nor the concerns/subsample Methods: This was a mixed methods study carried out in Northern interaction term reached significance. Education was the only Ireland. It included an attitudinal survey with 1’200 people, five other predictor to reach significance, but just in the case of mastery focus groups with 32 participants and nine one to one interviews. (p<.05). Vignettes were used to explore public perceptions in focus groups. Discussion: Over an 11-year period, the more continuous one’s Survey data were analysed using SPSS (V19) and a thematic analysis concerns and worries were about cognitive functioning and was carried out on the qualitative data using NVivo 9. developing AD, the more likely were such concerns and worries Findings: Members of the general public view people with dementia to be detrimental to psychological well-being. Specifically, the as “other” and take steps to create social and psychological distance. greater the number of waves Rs expressed various concerns and A paternalistic generosity masks a deeply stigmatising response to worries about cognition and AD, the greater the number of waves people living with dementia. Ageism, stereotyping, nihilism and Rs were found to be high on depression and stress and low on life infantilisation were all evidenced in the self-reported responses satisfaction and mastery. These effects held regardless of whether of the public. Participants used stories to contextualise their Rs were from families where a parent had been diagnosed with AD knowledge and this experiential knowledge is anecdotally repeated or from families with no parental history of AD. That our measure of as the facts of dementia rather than of an individual experience. The concerns and worries about cognitive functioning and AD appears public do not see dementia as a progressive condition but rather to be a strong and robust predictor should alert practitioners and they have a fixed image of dementia as linked to frail older people others to this source of threats to psychological well-being. and poor care in nursing homes. Conclusions: Despite increasing knowledge about dementia and 14.00–15.30 (Verdala): Parallel Session improved awareness, the attitudes of the general public to people P4. Assistive technologies living with dementia remain entrenched in notions of the living shell and of people who are no longer there. These attitudes are P4.1. “INDEPENDENT – The Alzheimer Society telecare deeply stigmatising, perpetuate stereotypes and have considerable experience” implications in terms of citizenship and dementia friendly societies. Connolly Mary The relatively recent cultural shift to ideas of successful ageing potentially further disenfranchises those with dementia who The Alzheimer Society of Ireland (ASI) has among its strategic personify ideas of unsuccessful, dependant ageing. There is no priorities 2009-2013: sense of a life worth living with dementia, rather dementia is seen • Expand the range and number of dementia services for existing as hopeless. service users/those awaiting services • Promote new service models based on innovative practice and P3.6. Concerns about cognitive functioning, dementia comprehensive evaluation. worries, and psychological well-being ASI collaborated with Tunstall Emergency Response (TER) and the Cutler Stephen, Hodgson Lynne Work Research Centre (WRC) in 2007 and have delivered a telecare service in their Mid-west and Mid-Leinster areas since. This service is Objectives: This study seeks to determine whether psychological in the form of packages of telecare including items such as pressure well-being is affected by concerns about cognitive functioning and mats, property exit sensors, fall detectors, enuresis sensors, bed worries about developing dementia. occupancy sensors. These items are installed in the houses of ASI Methods: We use three waves of data collected in 2000, 2005, and clients with dementia to assist them in living in their own homes. 2011 from two samples of persons ages 40-60 at T1 (total N at T3=177): WRC and ASI evaluated how these packages of telecare assisted (1) adult children with a parent diagnosed with probable Alzheimer’s carers in the homes of people with dementia. Carers of persons with disease (AD), and (2) a matched control group with no parental dementia interviewed reported the following benefits: history of AD. The principle predictor is a summative measure (α=.77) • “Peace of mind – You can now sleep at night, you now know if of the number of waves Rs scored high on five indicators of concerns anything happens you know about it.” about cognitive functioning and worries about dementia. Outcome • “On one occasion he fell asleep whilst cooking. Telecare woke him measures include the number of waves Rs were high on depression up – it would have been fatal only for telecare.” and stress and low on life satisfaction and mastery. • “It gives me great peace of mind at night and I know she is safe Regression analyses for each outcome were run with six predictors: regarding the cooker and/or water being left on. It has been a great (1) the composite measure of cognitive and AD concerns, (2) which benefit to me.” subsample R was in, (3) a concerns/subsample interaction term, (4) In 2010 a partnership was formed between ASI, WRC and TER and R’s educational attainment, (5) R’s age, and (6) R’s sex. the collaboration became part of the INDEPENDENT project.

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“INDEPENDENT is a European pilot project that brings together social volunteers). The community members will use the Confidence twenty partner organisations across six European Member application for collaborating in providing integrated services for States which aims at better capitalising on information and people with mild-to-moderate dementia. Estimated impact communications technology (ICT) when it comes to supporting Assistive applications initially envisaged physical and sensory older people in their communities. The ultimate goal is to empower disabilities of the elderly. The current multidisciplinary research older people to maintain their independence.” equally envisages the cognitive ones. Such applications may This funding has been used to enhance the communication between significantly improve the quality of life of the elderly andmay the telecare alerts received by TER from the homes of people with reduce the burden of formal and informal carers. Additionally, they dementia and ASI. This was done via a web based portal, through represent one of the golden answers that science and technology which ASI staff can now log in and see how their clients are using may provide to global aging and ‘dementia crisis’ challenges, by the telecare. improving the long-term assistance of people with special needs The new web based portal allows the Home Care Co-ordinators at and by reducing their institutionalisation and care costs. ASI see exactly when the alert happened in their client’s home and the response to it. They can then adjust the care delivery to match P4.3. MedRAM: An autonomous medication management their clients changing needs. The portal also allows ASI to recycle framework to schedule, remind and monitor packages, directing them to new service users in need of telecare adherence thus making the service more efficient. Hartin Phillip, Nugent Chris, Chen Luke, Hoey Jesse

P4.2. Electronic assistance services for people with With non-adherence of prescribed medications estimated to directly dementia contribute €125 billion in annual healthcare costs and in addition Schneider Cornelia, Willner Viktoria, Turcu Ileana, to being attributed to approximately 194,500 deaths a year in the Spiru Luiza European Union, the need for improved adherence is increasing rapidly. There are many factors that contribute to non-adherence, Background: People with mild to moderate dementia have to deal however, the most prevalent is forgetfulness. Alzheimer’s disease, with a lot of challenges in their daily life. Generally, they have and other forms of dementia, exacerbate forgetfulness due to a problems with time-space relationships and orientation even at decline in performance of executive functions, such as working familiar places. They suffer from moderate memory loss and have memory, attention, planning and task switching, all of which are troubles in handling complex problems. Common routes and required to accurately manage a medication schedule independently. various tasks (shopping, housekeeping or simply taking a walk) The aim of this work is to develop an autonomous medication become a daily challenge. As a result they get fearful, unsure in management system, to adaptably schedule medication times in their daily routine, and consequently they gradually lose their accordance with the activities of the user, deliver reminders when mobility, independence and social insertion. Recently, it became necessary and to reliably monitor adherence to the medications more and more clear that various information and communication with minimal human intervention. technology (ICT) based applications might significantly support The proposed MedRAM (Medication Reminders and Adherence the elderlies in dealing with their dementia caused deficiencies. A Monitoring) system makes use of smart environment technologies great challenge in assisting people with dementia is the extreme to provide a technological approach to medication management individual variability of their disabilities. to relieve an element of the burden for carers and to provide an The Confidence project: Confidence aims at providing assistance accurate measure of adherence. Each user will have their own services for people with mild-to-moderate dementia, adaptable medication profile describing their prescribed medication times, to their individual needs. Its main goal is to offer a mobile phone dosages, special instructions in addition to any drug interactions. application that combines “assistive technologies” with “personal Sensors embedded in household objects are used to detect the help”. The mobile Confidence application is planned as a “virtual location and current activity of the user, such as eating, sleeping or companion”, able to provide different levels of assistance that can be watching television. Based on their activity an intelligent reminder adapted depending on the situational needs of the patient and the service will determine the best time to deliver a reminder, in the best degree of orientation loss. Conceptually five assistive modules are suitable format. For example, if the user was watching television, planned: (1) assistance and training at home, (2) virtual voice service, using Smart TV functionality, the television will pause and prompt (3) virtual video service, (4) location tracking service and (5) mobile the user that they are due to take their medications. Another community service. For example if people lose their orientation the example is if a certain medication should be taken with food, and service will be activated either manually or automatically and the the user is currently eating, they would be reminded that they necessary help will be provided. A special aim of the project is to should take their medication at the same time. The system will be build up a community consisting of family members, employees of capable of monitoring and recording medication adherence times home care agencies and trusted volunteers (neighbours, friends or via sensors located in the medicine cabinet. The medicine cabinet

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will also be weight sensitive, measuring the quantity of the dose of professional caregivers are that, though they value DEM-DISC as taken to ensure the prescribed dose was administered. an important tool, they expect new (and less experienced) employees The MedRAM system has the potential to address the aforementioned to benefit most from using DEM-DISC. Professional carers think barriers relating to forgetfulness for persons with Alzheimer’s DEM-DISC can be particularly useful when referring clients to care disease, by unobtrusively assisting the user with one aspect of their services outside the region they work in. Further results on the daily lives that demands high performance of executive functions. user-friendliness, usefulness, and effectiveness of DEM-DISC will be The developed system will be evaluated in an assisted living facility presented at the conference. to establish its impact on adherence levels. Conclusion: The DEM-DISC is a promising tool to support carers of persons with dementia with tailored information on care and P4.4. DEM-DISC: an ICT tool for customised advice on care welfare services in dementia care. and welfare services van Mierlo Lisa, Meiland Franka, van Hout Hein, Dröes P4.5. Assistive Technology (Welfare Technology) and Rose-Marie Dementia – Experiences from Alma´s House Aketun Sigrid, Stigen Linda Objectives: Though a wide variety of care and support services are available for the growing number of community-dwelling people Background for project: In Norway more than 70 000 persons have with dementia and their informal carers, the available care and dementia and the number will probably double by 2040. Research support is not effectively used by them. Reasons for this are: they are and experience show that people with dementia and their family not aware of the offer, are not referred to it or do not use it because carers do not have sufficient information and access to assistive aids they expect the available care not to be attuned to their needs. The and technology that could support them and make their situation DEMentia Digital Interactive Social Chart (DEM-DISC) was developed better and safer. to provide carers of persons with dementia with demand-orientated, Aim of project: Establish a centre for welfare technology with web-based, tailored information on the social chart for dementia a demonstration flat that contains dementia friendly physical care. A pilot version was tested in a controlled trial and the results environment, assistive aids and technology. The target groups of were positive: persons with dementia and informal carers had more the centre are health personnel, decision makers and the public, as met, and less unmet, needs, while informal carers reported higher well as persons with dementia and their carers with individual visits. levels of sense of competence compared to the controls. The aim of Method: Develop and describe the process of the different visits the present study was 1) to further improve the pilot version of the by different target groups. The flat was designed in co-operation DEM-DISC so that care and support advice can be provided in a more with an architect with competence in universal design and a tailored way, and 2) to evaluate the user-friendliness, usefulness and lighting designer. In addition there was carried out a service design effects of the improved DEM-DISC among (in)formal caregivers and process, describing the needs of and designing the service for the people with dementia, and to study barriers and facilitators of the different target groups and the content in different demonstrations. implementation of DEM-DISC. Emphasis is put on designing the service as a dynamic link in the Methods: To evaluate the effect of DEM-DISC on (in)formal process of improving and supporting the home situation of people caregivers and people with dementia a randomised controlled trial with dementia. Also the process of obtaining or applying for was conducted as part of a larger study into casemanagement. different aids technology was discussed and planned. People in the experimental group received DEM-DISC in addition Results and conclusions: The target of designing a demonstration to casemanagement for at least half a year up to one year, while flat with dementia friendly environment and welfare technology people in the control group received casemanagement, but did not is reached. From 9th of October 2012 the flat is in operation as a have access to DEM-DISC, they gathered information regarding new service for knowledge and competence at the Oslo Geriatric available services as usual (via the general practitioner, newspaper, Resource Centre. The service and demonstrations include a dynamic internet). Primary outcome measures were (un)met needs of persons co-operation with different actors and institutions, including local with dementia and informal caregivers, sense of competence of occupational therapists and other health personnel, dementia informal caregivers, and experienced added value of DEM-DISC in teams, nursing homes and the national insurance agency for funding professional caregivers. The user-friendliness and usefulness of of technology. It is also an arena for dialogue with researchers, DEM-DISC is measured by the USE-questionnaire among informal developers and distributors of technology, as well as users. and professional caregivers. A process evaluation was done using Alma´s House is run and serviced by occupational therapists semi-structured interviews with stakeholders, to get insight into with specific competence in dementia, and knowledge of welfare barriers and facilitators of implementation of DEM-DISC. The study technology for activity, wellbeing, participation and safety. This is is performed in four regions of the Netherlands. crucial for the quality and content of the service. Results: Preliminary results indicate that informal caregivers find DEM-DISC relatively easy to learn and user-friendly. First impressions

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P4.6. Using gaming technology to benefit people with timely manner to support their negotiation through the transitions dementia associated with living with a dementia. Hicks Ben, Cutler Clare, Innes Anthea Innovative topics are addressed such as improving the availability and practice of psychosocial intervention in Memory Clinics - now There is little research exploring the experiences of people with found all over Europe, although national and local circumstances dementia and their engagement with technologies such as the can make delivery difficult. Promoting psychosocial care requires Nintendo Wii, Nintendo DS and the Apple I Pad. Engaging people special efforts. It can be done by a specific Dementia Service Centre with dementia and their carers in the use of these technologies or well established facilities such as Memory Clinics. A comparison can promote social engagement, mental stimulation, and physical between Italy and England by INTERDEM and the motivation to activity. This presentation will report on a pilot project, conducted make available evidence-based psychosocial interventions ‘for in the South of England involving people with dementia in a all’ as outlined in the Dementia Service Centre (DSC) approach in ‘Technology Club’, which aimed to encourage engagement in social Austria, reflects the diversity of European healthcare systems and and leisure activities through the use of the above technologies. cultures, but highlights common ground in a shared mission to It will also explore the behaviours adopted by the researchers to enhance practice, policy and quality of life of people with dementia ensure people with dementia were able to participate and engage and their supporters. Moreover, the DSC approach represents an with the activities. effort to develop services together with persons with dementia and This pilot study identified that the Technology Club provided their families. opportunities for social interaction, stimulation and access to We constantly try to improve approaches for major dementia learning. There was huge significance around the desire to learn and problems such as the management of challenging behaviour. A the importance of support. The Nintendo Wii and Apple I Pad were study in seven NHS centres across England, to detect needs in people found to be the most enjoyed and beneficial technologies used. In and families living at home in order provide specialised intervention particular participants reported that bowling and balance games by trained therapists, will be presented. Historically efforts to were the most fun of all the Wii games. Google Earth, was the intervene with challenging behaviour have been undertaken in most popular app used on the I Pad. The Nintendo DS proved to be the care home setting. The German study goes a step towards real less popular due to its small screen and difficult navigation routes. life practice by adapting and testing Dementia Care Mapping – a Researcher’s behaviours were key in removing the ‘fear factor’ promising existing intervention of international interest due to is associated with technology and encouraging people with dementia association with the birth of person centred care in the UK, into its to participate and engage with the gaming activities. local context. The symposium will close with what is now a pressing Technology can aid people with dementia in developing and concern for INTERDEM – the issue of preventing social exclusion and acquiring new skills and knowledge. Games and apps such as promoting valued social activities and relationships in dementia bowling, balance games and Google Earth are exciting ways to care. The WHELD presentation will outline how it has begun to encourage people with dementia to exercise, challenge their physical address this with a systematic trial in care homes in England. abilities and to have fun. However, the facilitating behaviours of those leading the activity sessions are vitally important in ensuring P5.2. Psychosocial approaches and memory clinics: from its success. A larger research study is required to test the initial knowledge to practice. A comparison between Italy findings on a larger scale. and UK Chattat Rabih, Moniz-Cook Esme, Fabbo Andrea, Carafelli 14.00-15.30 (Pinto): Parallel Session Antonella, Doncaster Emily; Orrell Martin, Watts Sue P5. INTERDEM: Improving and promoting psychosocial care for persons with dementia Background: Memory Clinics in dementia care have become an international innovation for improving the quality of care. P5.1. Improving and promoting psychosocial care for Psychosocial Interventions (PSI) have a developing evidence base persons with dementia but less is known about how such services provide psychosocial Vernooij-Dassen Myrra therapies. The aim of this survey was to explore the availability of evidence-based psychosocial interventions within a quality INTERDEM is dedicated to improving psychosocial care for persons improvement program at the Royal College of Psychiatry’s Memory with dementia, through applied practice-based research and Services National Accreditation Program (MSNAP) in England and innovation. Both the development and evaluation of psychosocial regionally-led memory services in Emilia-Romagna, Italy intervention and the organisation of care are important topics. New Methods: PSI standards developed through review of the evidence innovative psychosocial interventions build on knowledge gained in base, a standard ‘development workshop’, email consultation and the field, meaning that care should be person centred, fashioned expert consensus was established in England and an equivalent to the needs and preferences people and carers and provided in a Italian version was created. The survey was distributed by email

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to all MSNAP members and online in Italy. For each intervention, Results: 1’796 persons received a baseline evaluation (617 males/1’179 participants were asked to indicate if it was ‘provided by the females). The median MMSE was 21 (Q116, Q3 26), the median memory clinic team or by other services/organisations’ or if it was age was 79 (Q172, Q3 84). Of the 1796 recruited PswD, 1014 (56.5%) ‘not currently available’. Participants were also asked to report the agreed to take part in the stage specific training, 782 (43.5%) did typical ‘dosage’. not participate. 1’766 GDS protocols could be analysed. 14 persons Results: In England the survey was distributed to all 49 MSNAP were normal (GDS stage 1), 209 persons had a subjective cognitive members within NHS mental health services with a 41% response impairment (GDS 2), 264 persons had a mild cognitive impairment rate (n=20). In Italy all 53 Centers for Cognitive Disorders in the Emilia (GDS 3), 494 persons had mild dementia (GDS 4), 538 persons were Romagna were invited to complete the online survey, with a 55% in the moderate stage of dementia (GDS 5), 225 persons had severe response rate (n= 29). These centers are allocated within local health dementia (GDS 6) and 22 persons had very severe dementia (GDS7). agencies and funded by the NHS. The majority of the clinics in both 175 Caregivers (10% of the caregiver population) participated in all countries provided assessment and diagnosis, including discussion 5 training modules. Families remained in the structure for 2 years around driving issues and pre and post-diagnostic support. (Median Q1 0.9, Q3 3.6) on average with extremes of over 11 years. Interventions for cognitive problems were commonly available, Conclusion: A high percentage of persons in the pre-stages and although in Italy this was contracted to other provider organisations beginning stages of dementia are attracted by the DSC. More and the content and range of types of interventions varied widely. than half of the baseline population accepted a stage specific This trend was also seen for interventions for emotional support; training. The main hurdles for non- participation are financial a better balance across countries was seen in provision of reasons, transport problems, and no caregiver available. Caregiver’s occupational and functional interventions within memory services. participation in training modules was found to be low. Informal All services offered information and support but the content of support and informal provision of disease related information may this and associated ‘dosage’ varied. There was a marked difference be more important for caregivers and supporters. across Italy and England in interventions to promote continuity of care and care management. P5.4. Challenge FamCare: how can we provide timely care Conclusion: Psychosocial interventions appear to be available within for challenging behaviours in the family home? memory services. However, the content, range and monitoring of Moniz-Cook Esme, Hart Cathryn, Watts Sue, Goudie Fiona, what is delivered remains variable. Providing commissioners at Charlesworth Georgina, Smith Janine, Fossey Jane, national and regional level with a case for change on what is offered Clarke Chris in terms of timely PSI within these services may go some way to reduce the current inequity in provision of care to people and their Background: A Cochrane review of functional analysis-based families referred to memory services. interventions (i.e. modernising traditional ‘behaviour management’) for challenging behaviour in dementia at home found benefits in P5.3. Promoting psychosocial care through a Dementia family care settings. However detecting those in need and providing Service Centre timely interventions within routine NHS services is difficult, since Auer Stefanie, Span Edith, Seyfang Leonhard most specialist challenging behaviour NHS dementia services work with staff in care homes. Challenge FamCare aimed to detect and Introduction: Cognitive stimulation training for Persons with provide timely treatment for challenging behaviour by therapists Dementia (PswD) and multicomponent interventions for caregivers trained in functional analysis-based intervention, to families are two well established methodologies for psychosocial referred to specialist community mental health services. This paper interventions (Olazaran, et al, 2010). Different structures for the describes the process of detecting challenging behaviour and the provision of psychosocial interventions are emerging. The Model outcome of specialist mental health practitioner support to a cohort of a DSC was developed by closely interacting with PswD and their of people with dementia and challenging behaviour and their family supporters. A DSC is a low threshold, “one stop” structure, designed carer. for longitudinal support of the PwD and their supporters. The DSC Method: Every new case referred over 6 months to 33 specialist provides three main elements of psychosocial services: early disease community mental health teams in seven Mental Health NHS detection, caregiver training and stage specific training for PswD. organisations across England was reviewed. Interviews with The acceptance of these three elements was investigated. practitioners in these services explored where older people with Methods: 6 DSC were established throughout the county of Upper dementia living at home with challenging behaviours might be Austria. A longitudinal follow up protocol was developed, assessing located across the dementia care pathway, and the barriers to cognitive, functional and behavioural disease parameters as well as access of skilled support. Finally a cohort of 157 ‘new cases’ with caregiver parameters. Training attendance and caregiver activities dementia and challenging behaviour were examined at 2 months are monitored. To assess dementia severity, the Global Deterioration and 6 months following referral to specialist services. The primary Scale (GDS) is used. outcome was reported behavioural problems and caregiver reaction

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to these using a widely validated 24 - item instrument of common (88% to 93%) and B (96% to 98%) and decreased in group C (90% to problems reported by family caregivers. 89%). Changes were small and not significant. Severity of dementia Results: Of the 5’360 referrals over 6 months, specialist attention (FAST) and care dependency (PSMS) did not change over time. The was focused on patients without dementia or those living in care differences between groups are also not significant. homes. Patients living at home were often re-directed to other Conclusion: Chenoweth et al. (2009) showed that DCM has a positive services. Barriers to access of skilled behaviour management advice impact on agitation (CMAI), but no overall effect on challenging included misperceptions about the nature of challenging behaviour behaviour (NPI-NH) after 8 months. Our preliminary results show in family care settings amongst mental health practitioners. a non-significant increase of challenging behaviour in DCM groups Intervention by specialist mental health services in the cohort of 157 (A and B) during the first 12 months. We assumed that those NH families did not reduce challenges faced by families, since behaviour which have already implemented DCM over a long period (group problems worsened over time. However this was moderated by A) show better results for challenging behaviour. This could not be timely mental health support since more home visits earlier in the 6 verified. Results of process evaluation indicate that the effect of the month episode of care achieved better outcomes. intervention is influenced by the differences in implementation (e.g. Conclusions: Preventing escalation of challenging behaviour degree of implementation). in family care settings is possible, but specialist Mental Health community services in England need to be resourced and targeted P5.6. WHELD: A factorial randomised controlled trial of towards people and families living in their own homes, if the burden person centred care training, exercise, interaction and of behavioural symptoms is to be prevented. Specialist practitioners engagement and antipsychotic review to improve also require training, support and supervision to detect behaviours quality of life for people with dementia in care homes that families find difficult to manage and to deliver individualised Ballard Clive, FosseyJane, Orrell Martin, Khan Zunera, functional analysis-based interventions. Moniz-Cook Esme, Stafford Jane, Whittaker Rhiannon

P5.5. Dementia Care Mapping intervention: the challenge Background: Results of randomised controlled trials of person of improving daily practice in nursing homes centred care training for staff in care homes and nursing homes Halek Margareta, Dichter Martin, Dortmann Olga, Riesner have indicated encouraging benefits for people with dementia. Christine, Quasdorf Tina However, although most studies have demonstrated some benefits, none have improved neuropsychiatric symptoms amongst people Background: Most of the residents in nursing homes have with dementia and reduced the use of antipsychotic medication, challenging behaviours that strongly affect their quality of life and none have demonstrated improvements in quality of life for (QoL). Person-centered care (PCC) aims to achieve the best possible people with dementia. The aim of the WHELD factorial study was to QoL and to reduce challenging behaviours. Dementia Care Mapping determine whether the value of person centred care training could (DCM) is an instrument for implementing PCC. An Australian study be augmented with social intervention, exercise or antipsychotic (Chenoweth et al. 2009) suggests that the positive effect of DCM on review. agitation can be generalised for other health care systems. No data Method: The WHELD factorial study was a cluster randomised exist on the effects of DCM in German nursing homes (NH). controlled trial in 16 care homes over 9 months. All participating Method: The ongoing quasi-experimental study ‘Leben-QD II, care homes received person centred care training, but were Strengthening Quality of Life for People with Dementia’ evaluates additionally randomised in a factorial design to receive no additional the effectiveness and implementation of DCM in German NH. intervention, exercise, social intervention or antipsychotic review. The influence of newly implemented DCM (group B) on outcomes Results: 15 of the 16 clusters completed the trial, with a total of mentioned below will be compared to two comparison groups (group 289 participants with dementia. Social intervention significantly A and C): in group C an alternative QoL assessment (QUALIDEM) was improved quality of life for people with dementia as measured introduced, in group A DCM was implemented a long time before the by the DEMQOL proxy, whereas the antipsychotic review reduced study started. Nine wards from nine NH are taking part in the study. antipsychotic use and reduced mortality, but with some worsening Outcomes are: residents’ QoL and challenging behaviours, staffs’ of neuropsychiatric symptoms and no improvement in quality of attitudes toward dementia, job satisfaction and burnout measured life. Exercise did not confer a significant benefit. at baseline (T0), 12 (T1) and 22 (T2) months later. In this presentation Conclusion: The optimal intervention was a combination of person changes in prevalence of residents’ challenging behaviour (NPI-NH) centred care training, social intervention and antipsychotic review. between T0 (n=154) and T1 (n = 147) will be presented. The elements of the antipsychotic review may however need further Results: The residents’ mean age ranges between 82 and 84 years consideration as part of an optimised intervention. in the three groups, 80% to 85% are female and 30% to 44% of residents have very severe dementia (FAST=7). The total prevalence of challenging behaviour rose at T1 in group A

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15.30-16.00 (Exhibition Area): factor for the onset of Alzheimer’s disease; however, it is largely PO2. Poster presentations – Prevention unknown whether blood pressure regulation is associated with Aβ production or brain amyloid plaque formation. Activation of PO2.2. Dissociative amnesia and dementia: Is there a link? angiotensin type Ia receptor (AT1a) plays the central role in renin- Staniloiu Angelica, Markowitsch Hans J. angiotensin system to elevate blood pressure in response to increased sympathetic nervous system activity, dehydration or Despite suggestions that chronic stress is involved in the pathogeny hemorrhage. Here we show that AT1a deficiency significantly lowers of dementias, no systematic studies investigated the possibility of a amyloid plaque formation in an Alzheimer’s disease mouse model. link between dissociative amnesic conditions and neurodegenerative We found that AT1a deficiency leads to decreased endocleavage of dementias. In dissociative (psychogenic) amnesia, we and other presenilin-1, which is essential for γ-secretase complex formation researchers visualised functional imaging changes in brain areas that and Aβ production. Furthermore, we found that angiotensin II are agreed upon to exert crucial roles in episodic-autobiographical can enhance presenilin-1 endocleavage and γ-secretase complex memory processing. Moreover, we and other authors identified a formation and then promote Aβ production. This enhancement chronic course of the memory impairments in a substantial number involved activation of PI3 kinase and phosphorylation of Akt. Our of patients with dissociative (psychogenic) amnesic conditions. results suggest that environmental stresses or life style factors In some chronic cases of dissociative amnesia we noted a fairly that stimulate AT1a to elevate blood pressure might enhance Aβ stable course, while in other cases we observed a progressive global production and amyloid plaque accumulation, and contribute to the cognitive deterioration. Several factors may account for the under- pathogenesis of Alzheimer’s disease. investigation of a possible connection between dissociative amnesia and subsequent development of dementia, as we will outline below. PO2.6. Positive lysosomal modulator enhances clearance of Dissociative amnesic conditions continue to be under-diagnosed toxic proteins in both Alzheimer’s and Parkinson’s and even debated with respect to their pathogeny and diagnostic disease mouse models legitimacy. Systematic long-term longitudinal follow-up involving Bahr Ben A., Ikonne Uzoma S. repeated neuropsychological testing and functional and brain imaging is missing in a substantial number of patients with these Lysosomes are the cellular components involved in removing conditions. Most cases of dissociative amnesia and fugue are misfolded/aggregating proteins, but with aging lysosomes become diagnosed in the third to fourth decade of life. Partly due to a paucity less effective. Age-related protein accumulation disorders including of evidence-based treatments for these conditions, a substantial Alzheimer’s disease (AD), Parkinson’s disease (PD), and other number of patients with these conditions drops out from treatment dementias, are suspected to involve imbalances between protein and ceases contact with psychiatric or neurological or memory production and protein clearance. Strategies targeting the lysosomal rehabilitation facilities. There may also be an underestimation system to enhance protein clearance are prime candidates for drug of newly occurring or persisting dissociative amnesic conditions discovery efforts to reduce protein accumulation pathology and in elderly, due to a tendency in medical and psychiatric field to prevent the onset of dementia. The positive lysosomal modulator attribute cognitive symptoms in older patients to medical or more Z-Phe-Ala-diazomethylketone (PADK) enhances the trafficking and common psychiatric conditions. The search for a link between maturation of the lysosomal enzyme cathepsin B, thus to elicit dissociative amnesic conditions and dementia is without doubt a protective clearance of toxic proteins in the brain. A key pathogenic potentially interesting topic for future research, which should take factor in AD is the amyloid β peptide (Aβ), and cathepsin B was into consideration multiple variables, such as the age at the onset discovered to degrade Aβ42 via C-terminal truncation and was of trauma, gender, the recurrence, type and severity of trauma, the effective at reducing higher orders of Aβ assemblies (Mueller- presence of psychiatric and medical co-morbidity (mild traumatic Steiner et al. 2006, Neuron 51:703; Butler et al. 2011, PLoS One brain injury, obesity, cardiovascular status), pre-morbid personality 6:e20501). Treating APPSwInd and APPswe/PS1ΔE9 mouse models characteristics (e.g. neuroticism), genetic polymorphisms, of AD with PADK (ip, 18 mg/kg/d for 9-14 days) led to significant educational and occupational attainment, cognitive reserve and the reductions in Aβ42 peptide in hippocampus, cortex, and other brain progression of metabolic and microstructural brain changes. regions. Similarly, in the case of the A53T α-synuclein mutant mouse model of PD, the administration of PADK led to reduced levels of PO2.5. Angiotensin type 1a receptor deficiency ameliorates α-synuclein in TX-100 extracts of spinal cord, brainstem, midbrain, amyloid plaque formation as well as hippocampus. In both the AD and PD mouse models, Zou Kun, Liu Junjun, Liu Shuyu, Matsumoto Yukino, Tanabe PADK-mediated protein clearance was found to be associated with Chiaki, Maeda Tomoji, Michikawa Makoto, Komano Hiroto improved synaptic integrity. Synaptic pathology has long been considered the key event in age-related disorders that: 1) leads to Alzheimer’s disease is characterised by cerebral accumulation of cognitive deficits and 2) contributes to early, gradual changes that neurotoxic amyloid-β protein (Aβ). Midlife hypertension is a risk constitute risk factors for dementia. In the disease models, PADK

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treatment improved the levels of synaptic proteins well known Methods: 107 carers of people with dementia from different for being reduced with aging and in association with protein associations and day-care centers from Southern Spain participated accumulation pathology. The evidence of synaptic recovery through kindly in this study. Disecting the sample according to the lysosomal enhancement indicates a link between lysosomal relationship with the person with dementia, there are 74 offspring capacity and the maintenance of brain function, providing a unique (age: 48.11 years, SD = 9.09) and 33 partners (age: 68.76 years, SD pathway to attenuate cognitive impairment and delay the onset = 6.2). These carers responded to the Millon Index of Personality of dementia. The results support a plausible strategy to promote Styles - MIPS, which measures personality styles organised in three cathepsin B-mediated protein clearance for a disease-modifying fields of action: Motivating Styles, Thinking Styles and Behaviour treatment of early and progressive dementia that often involves Styles, also responded to the State-trait Anger Expression Inventory multi-proteinopathy. - STAXI-2 which evaluates the experience and expression of anger. Results: The results show, in offspring carers, direct significant PO2.8. Does physical activity reduce burden in carers of relationship between control of anger and motivational styles people with dementia: A systematic review and meta- Pleasure-Enhancing and Actively Modifying of MIPS; and between analysis the expression of anger and the Pain-Avoiding and Passively Orgeta Vasiliki, Miranda-Castillo Claudia Accommodating. On the other hand, people who care for your partner with dementia, show significant direct relationships Objective: Physical exercise has been associated with a range of between control of anger and Pleasure-Enhancing; and between positive outcomes including improvements in psychological well- the expression of anger and the Pain-Avoiding and Passively being. The aim of the present study was to review current evidence Accommodating. Also, the results obtained in control of anger, show on the psychological benefits of physical activity interventions for a significant positive relationship with increased psychological carers of people with dementia. adjustment in these carers. Method: Systematic review. We searched electronic databases and Conclusions: The results of this study allow us to associate particular key articles of studies that have evaluated the benefits of physical emotional anger management with determining motivational activity interventions in improving psychological well-being in carers factors regarding to the psychological adaptation to the situation of of people with dementia. Relevant papers were scored according to caring for a relative with dementia. established criteria set by the Cochrane Group. Selection criteria for The findings provide valuable information on anger management studies were a Randomised Controlled Design (RCT), and comparing for carers of people with dementia, which can begin included in physical activity with a control group receiving no specific physical plans for both prevention and intervention to prevent carer burnout. activity intervention. Two reviewers worked independently to select trials, extract data, and assess risk of bias. PO2.10. Ilion epidemic study: A new screening test for Results: A total of 4 RCTs met the inclusion criteria. Studies cognitive deficits evaluated home-based supervised physical activity, of low to Solias Andreas, Politis Antonis, Laoutari Sophia, Degleris moderate intensity which included either aerobic exercise, or Nikos endurance training. Pooled data showed that physical activity reduced subjective caregiver burden [standardised mean difference Acknowlegments to Professor Constantine Lyketsos John’s Hopkins (MD) 0.43; 95% confidence interval (CI) -0.81 to -0.04], in comparison Medical School Baltimore USA for his mentorship in the present to a control group of usual care. study Conclusion: There is evidence from two RCTs that physical activity The worldwide increase life expectancy makes more aged people reduces subjective caregiver burden for carers of people with vulnerable to some form of dementia. Many elders facing memory dementia. Although statistically significant, the observed benefits problems avoid seeking help in early stages. The objective of this should be interpreted with caution as the studies conducted so far study as to evaluate a new tool easy that can be administered have limitations. Further high quality trials are needed for evaluating by laypeople (e.g. senior center staff or caregivers) screening for the benefits of physical activity in improving psychological well- cognitive decline. being in carers of people with dementia. Method: This is an ongoing population based study in an urban area in Greece (municipality of Ilion). A total of 331 community dwellers PO2.9. Emotional and motivational aspects of coping with (55-85+years old) attending senior centers participated voluntarily dementia in parents or partners in the study and were assessed with Santa Sophia Test (SST), as de Andrés-Jiménez Elena, Limiñana-Gras Rosa María well as the MMSE, 3MS, and CDT tests. SST was developed so that it committed to be administered by laypeople and briefly assesses The aim of this study is to investigate the relationship of expression attention, concentration, memory, orientation, as well as abstract and control of anger with the motivational dimensions of personality and critical thought. The test administration takes totally 6 minutes. and psychological adjustment, depending on the kinship. At first we dictate the whole text (approximately 1’30”). After 5 min

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we demand the elder to fulfill the blank spaces (20 words in 4 min) was described in a patient in older age. Information regarding CSF of the story. biomarkers are lacking. To our knowledge this is the first study that Results: Based on a 3MS score of less than 82, 46.3% of participants reports elevated CSF total-tau protein levels in an A53T- positive facing memory problems. The corresponding percentage of affected member. individuals with impaired scores on the SST was 45%(

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the disease process and its pharmacotherapeutic management. This presentation begins by setting out the underlying human rights In the present study, all community pharmacists practising in the principles of the 8 Pillars Model. Next the presentation explains how Maltese islands were invited to participate in a survey aimed at the model enables health and social care interventions to work measuring knowledge, attitudes, pharmacotherapy and level of hand in hand to deliver coordinated, therapeutic and personalised services available to individuals with AD in the community. The community supports which tackle the symptoms of dementia overall findings (56.8% response rate) showed that increased age, and support people with dementia to continue to live at home, number of years working as community pharmacist and increase in their own communities, for as long as they choose. Finally, the in the number of years since graduation were negatively correlated presentation will provide up to date findings from the 8 Pillars with knowledge on AD. There was significant lack of awareness on Model test sites across Scotland. AD pharmacotherapy including the use of antipsychotics in the management of challenging behaviour in AD. Most community P6.3. Evaluation of the transition of institutional psychoger- pharmacists are not familiar with the services available for these iatric day care into easy-access community-based individuals and that communication between the various health support centres for people with dementia and their professions is almost inexistent. Considering that community carers; a multicenter study pharmacists come into frequent contact with individuals with van Dijk Marijke, Meiland Franka, Dröes Rose-Marie AD, these results show a need for increasing knowledge about AD among these healthcare professionals in the hope of enhancing Background: Quality of care is not only determined by its efficacy, high-quality dementia care in the community. but also by its accessibility, efficiency and patient-centeredness. An example of good care addressing these quality criteria is the Meeting P6.2. Delivering integrated dementia care in Scotland: The 8 Centres Support Programme (MCSP) for people with dementia and pillars model of community support their carers. MCSP offers proven (cost-)effective support, attuned Pearson James to the needs of participants and is offered in socially integrated easy-access community centres. In this implementation study, six Scotland is currently moving towards integration of health and traditional psychogeriatric day care centres in nursing homes made social care. The Scottish Government plans to introduce a new the transition to easy-access community-based psychogeriatric day legal framework creating new Health and Social Care Partnerships, care centres according to the MCSP-model. The transition process which will give shared responsibility to National Health Service and potential surplus value are evaluated. (NHS) Boards and Scottish Local Authorities. In September 2012, Method: Data were collected in six day care centres before and after Alzheimer Scotland published, Delivering Integrated Dementia Care: the transition. The (cost-) effectiveness of new day care centres is The 8 Pillars model of Community Support. The report sits within studied by a pretest-posttest control group design with standard this integration agenda and sets out a blueprint for a more effective, questionnaires among people with dementia and their informal structured, coordinated and strategic approach to the use of existing carers. Measurements took place at the start of participation, and resources for the delivery of integrated dementia care and better after 3 and 6 months (in both conditions). User satisfaction was outcomes of people with dementia and those who care for them. measured after 6 months. A process evaluation of the transition is The 8 Pillars Model builds on the significant progress of Scotland’s performed by means of interviews with key figures (n=34) who were National Dementia Strategy (2010-13) in addressing the priority involved in making the transition from traditional day care centres areas of improvements in acute hospital care and post diagnostic to easy-access community-based day care centres. The interview support. In particular the model builds upon the ground breaking data were independently coded by two researchers and analysed, commitment to provide every person diagnosed with dementia with using the computer programme Atlas TI. a minimum guarantee of one years post diagnostic support based Results: Six institutional day centers are succesfully transformed on a model developed by Alzheimer Scotland. Scotland is currently to easy-access community-based support centres for people with developing a revised strategy for 2013-2016 and this includes a dementia and their carers. First results of the process evaluation show commitment to test the 8 Pillar Model in sites across Scotland. The that close cooperation with regional care and welfare organisations, model contains eight key pillars. These are: additional financing by the municipality, the possibility to adjust 1. A Dementia Practice Coordinator the MCSP-model to the local situation, and a suitable location 2. Therapeutic interventions to tackle the symptoms of dementia facilitate a successful transition. Staff members having difficulties 3. General health care and treatment with working according to the new person-centered care model, 4. Mental Health Care and Treatment and other meeting centres in the vicinity, impeded the transition. 5. Personalised Support Preliminary results of our study on user- and staff satisfaction 6. Support for carers before and after the transition, will also be presented. 7. Environment Conclusion: Traditional psychogeriatric day centers are able to 8. Community Connections. transform succesfully to a more easy-accessible, socially-integrated

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and combined MCSP-approach for people with dementia and their 2010, from 12 local authorities. carers, and first results show that these new day care centres are Findings: This study describes the participants’ motives for highly valued by its users. Based on final analysis of the interviews becoming a support contact and their encouraging and discouraging with key figures in August 2013, a transition model is presented to experiences while being a support contact, expressed as four sets support other traditional psychogeriatric day cares to make this of opposites; flexibility vs. rigidity; being compensated vs. feeling transition. used; affiliation vs. abandonment; and satisfaction vs. lack of satisfaction. P6.4. Singular and socially oriented group living for persons Conclusion: Greater flexibility, adequate compensation, a sense with dementia vs traditional nursing home- a pilot of affiliation and satisfaction, together with potential for building study relationship with families, are factors that will encourage dementia Span Ursula, Span Edith, Auer Stefanie care supporters to continue with their work.

Introduction: The appropriate stage specific care of Persons with P6.6. Time for Breakfast – an opportunity for meaningful dementia (PwD) in institutional settings is becoming a specialty activity in hospitalised persons with dementia and specific knowledge is required. Creative and affordable ideas for Abela Stephen, Galea Doris, Abela Maria, Dalli James, optimising the quality of life for PwD, the care team and the involved Baldacchino Kristin, Chetcuti-Galea Roberta relatives are now needed. In the development of new concepts, the appropriate balance between physical/medical care and social care Background and Aim: It is well established that people with dementia concepts seem important. There is some evidence in the literature encounter challenging experiences when admitted to acute hospital that small-scale and homelike facilities with a socially oriented care settings in view of their complex care needs and the streamlined concept may be a more appropriate living environment for PwD. In hospital environment (Cunningham C. and Archibald C., 2006). A this pilot study we compared a newly developed socially oriented previous evaluation of dementia care practices at the Rehabilitation group living environment in which care is only provided on demand Hospital Karin Grech (Innes A. and Kelly F., 2012) showed missed with no organisational connection to an institution (singular) to opportunity for activities especially in relation to everyday routines. traditional care environments. The aim of this project was to promote a rehabilitation philosophy Methods: In this longitudinal observation design, PwD residing in the during breakfast, increasing mobility, meaningful activity, group living were matched to PwD in traditional care environments. independence, nutrition and wellbeing of people with dementia. All persons are assessed at baseline, 3 months and 6 months. A Methods: A brainstorming meeting was organised between the follow up observation after 6 months was set up. As main outcome ward interdisciplinary team members. During this initial meeting, variables, Quality of life (QOL-AD; Person with dementia version) promoting activity during breakfast time was identified for further was chosen for the PwD. For the care team, the main outcome was development. The breakfast group was introduced in February Work Satisfaction and a global measure of change (CGI), for family 2013 whereby a small number of semi-independent persons were members, QOL-AD (family version) and a CGI was used. The pilot encouraged to walk to the dining area so that they could help study started in July 2012 and will end in July 2013. themselves to a buffet-style breakfast. Further evaluation will be Results: 36 PwD in the different stages of the disease were recruited. carried out to estimate the number of persons participating in this Results of the study will be presented at the meeting. project, their diagnosis, the stage of dementia, functional levels, any problems encountered and a customer feedback questionnaire. P6.5. Motivating and discouraging factors with being a Results: The breakfast group was received positively by ward staff. support contact in the dementia care sector: a From the initial SWOT feedback, the main benefits identified were grounded theory study helping clients regain their skills and independence in self-caring, Johannessen Aud, Hallberg Ulrika, Möller Anders improving nutrition and encouraging socialising. The breakfast group was promoted as serving to help establish a daily routine and Background: People with dementia need different forms of positively influence successful home discharge. The main concerns assistance as the disorder progresses. In Norway, support contacts were the risks associated with safety e.g. falls or other injuries. work as “paid friends” and their role can be compared with respite Further results on the outcome of this group over a six-month carers or voluntary workers’ in other Western countries. Support period will be presented in the final paper. contacts may be helpful within the dementia sector, especially in Conclusions: In a geriatric hospital setting, the breakfast time can the early stages of the disorder, though they are rarely used. be adapted as an opportunity for meaningful activity. This approach Aim: The aim of this study was to find out how the support contacts can be implemented successfully only through collaborative team perceive their work. work and positive involvement of all grades of staff. Method: Grounded theory, a qualitative method, with interviews of 19 participants (14 women and 5 men aged 40-75 years) during 2009-

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16.00–17.30 (Wignacourt): Parallel Session P7.2. Obtaining and maintaining consent for research P7. Research with people with dementia participation from patients with impaired capacity: Best practice recommendations from the MORECare P7.1. Managing eligibility, amyloid related imaging consultation workshop on ethical issues in palliative abnormalities (ARIA), and efficacy evaluations in care research Alzheimer disease clinical trials: Points to consider Gysels Marjolein, Evans Catherine, Lewis Penney, Speck Shamsi Kohkan, Patt Rick Peter, Benalia Hamid, Preston Nancy, Grande Gunn, Short Vicky, Owen-Jones Elly, Todd Chris, Higginson Irene J Alzheimer disease is extensively being investigated in clinical trials. Imaging is utilised for patient’s eligibility, efficacy evaluation and Background: There is little guidance on the particular ethical safety evaluations. Patient’s eligibility, efficacy and safety are concerns that research raises for people with dementia. evaluated by Magnetic Resonance Imaging (MRI) and FDG-PET is Aim: To present the recommendations on obtaining and maintaining used for efficacy assessments. consent for research participation from patients with impaired Evaluation of images for patient eligibility: Many neurological capacity, and their families, as achieved from a workshop and diseases that could either have similar presentation as Alzheimer consensus exercise on agreed best practice to accommodate ethical disease or could be confounding factors in the assessment of drug issues in research on palliative care. therapy have to be excluded to evaluate therapeutic effect of a Design: Consultation workshop using the MORECare Transparent drug on AD patient population. These include vascular dementia, Expert Consultation approach. Prior to workshops, participants multiple sclerosis, vascular pathology, neoplasms etc. Inclusion were sent overviews of ethical issues in palliative care. Following of wrong patient has serious have ethical and legal issues. More the workshop, nominal group techniques were used to produce importantly, these patients could be excluded from the analysis candidate recommendations. These were rated online by thereby reducing the sample size and impacting the power of the participating experts. Descriptive statistics were used to analyse study and the study results. In this presentation, various strategies agreement and consensus. Narrative comments were collated. of eligibility evaluation will be presented and optimisation of Setting/participants: Experts in ethical issues and palliative care eligibility read process will be discussed research were invited to the Cicely Saunders Institute in London. Evaluation of Amyloid Related Imaging Abnormalities (ARIA): Initially They included senior researchers, service providers, commissioners, these abnormalities were observed in monoclonal antibody against researchers, members of ethics committees, and policy makers. amyloid-β (Aβ) trials. These MRI findings include vasogenic edema Results: The workshop comprised 28 participants. Five key (ARIA E). micro and macro hemorrhages (ARIA H) and superficial recommendations on informed consent were developed. Also seven siderosis. FDA has mandated that patients must frequently be recommendations were developed on participation in research by followed by MRI in all AD trials and if ARIA is observed, the patient a palliative care population and four on making applications to should be discontinued and should be followed by MRI more research ethics committees. The recommendations on obtaining frequently till the finding is resolved or stabilised. This requirement and maintaining consent from patients and families were the most has put additional burden on both sites and patients who have to contentious. Two recommendations were refined on the basis of the undergo MRI every 3 months. These MRIs have to be evaluated in comments from the online consultation. a standardised fashion with very quick turnaround time as patient Conclusion: The culture surrounding research with patients with status in the study is dependent on MRI findings. We will present impaired capacity needs to change by fostering collaborative our experience in conducting MRI evaluations for ARIA and suggest approaches between all those involved in the research process. best practices to conduct ARIA evaluations Changes to the legal framework governing the research process are Efficacy evaluation: MRI is utilised to evaluate total brain volume required to enhance the ethical conduct of research with patients or hippocampal volume. FDG PET has been used to measure with impaired capacity. The recommendations are relevant to all metabolic activity of brain. Recently Amyloid imaging agents have areas of research involving vulnerable adults. been approved and are being utilised for drug evaluations. Site qualification including phantom imaging, image standardisation P7.3. Experience of people with dementia and their carers and image acquisition is crucial for the success of efficacy in a major clinical trial evaluations. McCrae Niall, Smythe Analisa, Wright Jan, Douglas Lisa, In this presentation, we will share our experience regarding issues Leyland Helen, Davison Jill, Pearson June, Chadha Divya, related to site read, central independent reads, technology will Li Ryan, Poppe Michaela, Nurock Shirley, Murray Joanna, be discussed and risk management strategies including protocol Banerjee Sube development, site selection process, core lab selection and training of the sites and reader management will be presented. Background: Fundamental to research is free, informed and competent participation, but a considerable challenge in generating

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evidence on treatment for people with dementia is the effect with dementia in the recruitment phase to assist with problems of cognitive impairment on capacity. Consent in clinical trials is concerning finding potential participants and gatekeepers. covered by the Medicines for Human Use (Clinical Trials) Regulations (2006), which requires consent at the outset but not ongoing review P7.5. Development of an easy-to-use videophone for of decision-making capacity. In many cases consent is provided by people with dementia a carer acting as personal legal representative. However, such carers Nygard Louise, Boman Inga-Lill, Lundberg Stefan, are often frail and may have limited understanding of the clinical Rosenberg Lena trial process, despite information provided prior to consent. Aim: This study explored the understanding and experiences of The aim was to develop a design concept and design an easy-to- people with dementia and their carers in a major multi-centre use videophone with picture screen, i.e. a videophone, to be used by clinical trial (HTA SADD). persons with dementia, and also to introduce this product to pilot Method: Qualitative interviews were conducted with 14 people with cases. We have used an Inclusive Design approach that includes the dementia and 24 carers (including 14 dyads) at five trial sites. target users in the design process. Findings: Thematic analysis revealed that while participants were First, the need of a videophone was examined and a requirement satisfied with their experience of the trial, limited understanding specification and a preliminary design concept was developed. was apparent in relation to the purpose and process of the trial. Thereafter, data from five focus group interviews were analysed Some carers, as well as most of the people with dementia, had seen with a Grounded Theory approach. Group 1: Occupational therapists the trial as part of normal clinical care, and had expected that an (n=8); Group 2-3: Significant others to people with dementia, SOs active treatment was being taken. (n=5+5); Group 4-5: Persons with AD (n=2+4). The findings showed Conclusion: While there is a growing need for involvement of people that there were more similarities than differences between the with dementia and their carers in clinical research, more attention viewpoints of the different samples. The most evident difference must be paid to informed consent. The authors recommend a was that significant others wanted to be able to monitor the person person-centred approach to consent in dementia research. with dementia when they were away from home in order to check that everything was well. The persons with dementia, however, P7.4. Considerations when involving people with dementia stated clearly that they did not want to be monitored, and they in research expressed a strong wish to be in control. Borley Gayle, Sixsmith Judith, Church Sarah Our final step in this project was to let users with dementia and their significant others (SOs) test the usability of the video telephone Dementia is one of the largest problems facing healthcare services design concept. We constructed a mock-up of the design concept, in the future (DoH, 2010). UK Prime Minister David Cameron has and invited users (4 persons with dementia and 4 SOs) to test it in set a dementia challenge to promote the quality of life of people the living lab at The Royal School of Technology in Stockholm. The with the disease (DoH, 2012). Included in this challenge is the clear participants were asked to carry out three different tasks; first, to directive that more research needs to be undertaken in order to make a videophone call to their SO in the room next-by, secondly, understand how this disease affects individuals. A target has been to answer a videophone call from their significant other, and thirdly, set to recruit 10% of people living with dementia into high quality to make a call to SOS (although the mock-up was not connected to research by 2015. SOS). The participants with dementia perceived that it was useful, Recruitment into research across all healthcare settings is known enjoyable and easy to use although they initially had difficulties to to be a challenge, particularly research into dementia (Abley, 2010). understand how to handle some functions, which indicates that the There are multiple reasons why individuals may or may not take design needs to be further developed to be more intuitive. up the opportunity to be involved in research including level of Conclusions: The findings suggest that the videophone has potential commitment, study duration and agreement of family members to enable telephone calls without assistance and add quality in (Marcantonio et al, 2008). Despite investigation of this issue over communication. recent years, it remains a challenge. This abstract will explore the challenges involved in recruiting P7.6. Alzheimer Europe recommendations on the ethics of individuals with mild to moderate dementia into research. It will dementia research focus on and discuss issues related to women with Alzheimer’s Gove Dianne disease currently being recruited as part of a doctoral study exploring the lived experience of becoming cared for. In 2011, Alzheimer Europe set up a multidisciplinary working group It will incorporate the importance of recruitment strategies focusing to discuss the ethical issues linked to dementia research. A report on study design, inclusion/exclusion criteria, capacity to consent was produced covering several issues such as informed consent, and most importantly the individuality of people with dementia and the involvement of people with dementia in the research process, their families. It will also offer suggestions on how to involve people protecting wellbeing, balancing risk, benefit and burden, avoiding

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paternalism, specific issues related to medical research, end-of-life P8.2. ACT on Alzheimer’s: A unique toolkit available to all care research and brain tissue donation, and issues surrounding the communities to foster dementia capability publication and dissemination of the results of dementia research. Mastry Olivia, McKinley Deb The ethics working group produced detailed recommendations on each of these topics as well as three documents covering issues to ACT on Alzheimer’s is a statewide collaboration in Minnesota, USA, consider when designing consent forms and participant information seeking to prepare and build capacity in Minnesota communities to forms, and in relation to applications for the ethical approval of address the spiraling needs related to the increasing prevalence of studies. Alzheimer’s disease and related dementias. In this presentation, three topics will be addressed: 1. The full and Using a unique collaborative model that involves over 50 non-profit, fair involvement of people with dementia in dementia research governmental and for-profit organisations and 150 individuals, ACT (emphasising the need to ensure that older people with dementia on Alzheimer’s is focused on five goals: and people with different types and stages of dementia and from 1. Identify and invest in promising approaches that reduce costs and different sub-groups of the population are involved), 2. The need improve care; to balance respect for autonomy and inclusion with protection 2. Increase detection of the disease and improve ongoing care; from harm and 3. The ethical and responsible publication and 3. Sustain caregivers by offering them information, resources and dissemination of findings. in-person support; 4. Equip communities to support their residents who are touched 16.00–17.30 (Vilhena): Parallel Session by the disease; and P8. Dementia-friendly communities 5. Raise awareness and reduce stigma by engaging communities in planning for and integrating Alzheimer’s resources that foster early P8.1. Connecting people living with dementia to nature: detection, quality care and support and community readiness. A celebration of woodland As part of goals four and five above, ACT on Alzheimer’s has Mapes Neil developed a Community Toolkit to foster dementia capability and friendliness, which can be used in communities of any size, Dementia Adventure and the Woodland trust are working in geography or interest. partnership to enable more people living with dementia to benefit The toolkit guides users through a research-informed, four-phase from visiting woods. We are pleased to share the film ‘A Celebration process that fosters community readiness, engagement, collective of Woodland’ which is the product of a day which was made possible action and measurement to develop dementia capable and friendly by the Woodland Trust Scotland’s VisitWoods team. The day took communities. The four phases include: place on the 24th July 2012 at Lochore Meadows in Fife, Scotland 1. Convening key community leaders. which is a beautiful natural setting with a park and woodland 2. Assessing current strengths and gaps with respect to community around a loch with very good disabled access facilities created on dementia capability. the site of a disused coal mine. The day, led by Dementia Adventure, 3. Analysing community needs to identify and prioritise issues on involved 77 people coming together from all over the central belt which stakeholders are motivated to act. of Scotland to enjoy a beautiful day of outdoor activity and fresh 4. Acting together to establish implementation plans to achieve air. The community enjoying the day included people living with priority goals and measure progress. dementia from: Alzheimer’s Scotland Facing Dementia Together Each phase contains necessary action steps, resources, timeframes group, Scottish Dementia Working Group as well as residents, staff and best practices to support communities. Once communities and family members from 11 care homes locally as well as staff prioritise which goals to pursue, the toolkit provides a library of and volunteers from Dementia Adventure and the Woodland Trust best-practice, how-to resources to implement change. Scotland. There were various nature based activities and crafts on The presenters will present: offer, people shared picnic lunches as well as tea and coffee served 1. An overview of the overall collaboration; by volunteers. The film we would like to showcase was made by 2. Each phase of the Toolkit; Edinburgh film makers Muckle Hen Productions, who volunteered 3. Instruction on how to use the Toolkit in any community. Case their time to support this work. We are pleased to share this studies to show how the Toolkit is being implemented in distinct film which demonstrates the benefits and importance of nature pilot communities; and of woodland to people living with dementia. This successful 4. An overview of technical assistance and resources available to partnership also shows how organisations can work across sectors communities that choose to implement the Toolkit; and in creative and engaging ways for mutual benefit in creating 5. Discuss evaluation and progress of the pilot communities. Dementia Friendly communities, communities where people living with dementia enjoy the outdoors.

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P8.3. Connected Compassionate Communities “Something inclusional and responsive frail elderly pathway. It is not about to believe in” – the embodiment of life affirming creating “add on” training of staff or “bolt on” of new protocols. It energy and hope for the future is important for the flourishing of these communities in the future Naidoo Marian and Shaun that we enable the narratives of people living with dementia, their carers and family members to tell a story of improvement. We can This presentation will focus on research undertaken across help to achieve this by ensuring that provision within communities Birmingham and Solihull that began in 2012 and was commissioned is really locality based and reflects the social and cultural makeup of by the Birmingham and Solihull Combined Commissioning Group. the communities it serves. Its purpose was to include people living with Dementia and their families and carers in the development of a new strategy for P8.4. “I’d like a dementia-friendly world, but I’ll start with frail older people. The process embraced and reflected the lived my local community” experience and needs of a culturally diverse community. Malone Brian The researchers used a process of Living Theory Action Research (LTAR) with a particular emphasis on developing relationships and What is a dementia-friendly community from the point of view gathering narrative using digital media where appropriate. The of a person of dementia and how does that compare with the research explored, through the gathering of stakeholders narrative, professionals’ view? their experience of living with Dementia or caring for someone living The Scottish Dementia Working Group is a campaigning and with Dementia and the fundamental issues for them in maintaining awareness-raising group whose members all have a diagnosis of levels of health and wellbeing while aging creatively. dementia. LTAR was employed as a methodology as it was believed that it Brian Malone, a new member of the group, will give an oral would enable ownership of the process by the participants involved presentation to highlight the work being done both locally and in providing improved services. LTAR always starts with participants nationally across Scotland to encourage communities to become asking themselves the question “How do I improve what I do?” dementia friendly. He will explore how these community initiatives Developing trusting relationships played a significant role when have a positive impact on the way we live our life day-to-day lives. working with community members. This was particularly important The presentation will explore the question “who decides what a in relation to minority ethnic communities that many service dementia-friendly community is?”, and discuss the importance providers had previously found difficult to reach and engage with. of involving people with dementia in designing and building As researchers, the development of an authentic relationship as communities which are truly dementia friendly. part of the LTAR methodology used was crucial. Finding a way to ensure that voices were heard became both a creative task for the P8.5. Dementia friendly community pharmacies – building researchers and an integral part of the action research process participatory networks for community-based care itself. Digital media as a feature of this research work ensured that Plunger Petra, Tatzer Verena, Heimerl Katharina narratives were recorded allowing evidence for themes to emerge. The significance of this locally and culturally provided a powerful Background: People with dementia and their caregivers are regular platform for the creation of a complex picture of community/ies in users of community pharmacy services. However, so far only a all their diversity and allowed further work to be developed. few pharmacy-based initiatives have focused on their needs apart Bringing narratives to the table with service users, carers, providers from medicines management. Based on Palliative Care and Health and artists as part of the process has raised awareness with key Promotion principles, the project “Dementia friendly community providers of the importance of creative engagement being built in pharmacies. Community-based health promotion for people with to service provision as part and parcel of the redesign process. More dementia and their caregivers” aims at transforming community importantly it has produced qualitative data that has gone on to pharmacies into dementia-friendly settings supporting dignity and inform the development of a much more localised dementia strategy quality of life of people with dementia and their caregivers. Applying in the drive to encourage more dementia friendly communities. principles of community based participatory health research By working together and sharing experience and learning, Connected (CBPHR), people with dementia and their caregivers, community Compassionate Communities has enabled levels of involvement pharmacists and health care and community partners will be and in particular from the BME communities that has been involved in re-orienting community pharmacies (von Unger 2012, historically unprecedented. The focus on building trust through Plunger & Heimerl 2012). fluid communication and relationship building has enabled many Research Questions and Methods: CBPHR is linking research and individuals to disclose some very pertinent issues. This programme interventions, and calling for a cooperation of community partners, is about learning together to bring about transformational change professionals and researches, ultimately aiming at creating relevant by connecting communities of people together in the development knowledge for transforming health care practices and settings. The of a community of practice based on the need to develop an following questions are guiding the partnership-building process:

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Who are relevant partners/communities to be involved? How can environment that people experience in the context of living with all relevant partners be involved equally? What are experiences dementia. Such insights have important implications for how we and expectations of people with dementia and their caregivers conceptualise ‘dementia-friendly communities’ and underline the regarding community pharmacies? How do community pharmacists value of using a creative mix of methods to better understand the conceptualise re-orientation of pharmacies? To facilitate multi-faceted nature of the neighbourhood. participation and grasp various perspectives, interviews, focus groups and a needs assessment using appreciative inquiry are being 16.00–17.30 (Verdala): Parallel Session carried out. Transdisciplinary working groups will be organised to P9. Dementia and the arts develop interventions and community-based projects. Furthermore, all partners participate in relevant discussions and decisions P9.1. A visual exploration of the dementia experience: via involvement in project bodies – the steering committee and Uncovering multiple meanings of well-being advisory group. Ataie Jutta E. Results and Discussion: Involvement of relevant partners was conceptualised as gaining interest from professionals - pharmacists, Although it is widely acknowledged that a person’s sense of well- other health and social care practitioners, and community partners being is impacted by the onset of dementia, there is scant knowledge – people with dementia and their caregivers. So far, the project about what ‘feeling well’ means for people with the illness. However, succeeded in building partnerships with Alzheimer Austria, a self- having an understanding of what well-being means for people with help group, community pharmacies and their professional body and dementia is important as it is a necessary precursor for developing health promotion and palliative care organisations, who all provided interventions and support services that foster a sense of well-being rich input for the design of the project. Already at this point, in this population. differing perspectives on caring for people with dementia and their In the present study, visual and verbal narratives of thirteen women relatives in pharmacies became visible, which may be framed as and seven men with early-stage dementia (age 57-90, mean 73.4; problem-based vs. person-centered. First results from the ongoing MMSE scores 20-28, mean 25.6) were used to explore what ‘feeling needs-assessment will be presented and implications for further well’ means. Grounded theory analysis revealed that ‘feeling well’ cooperation and development of interventions will be discussed, as was not a static experience; it was an ongoing, continually shifting well as potentials and challenges of CBPHR. process that unfolded in a series of interrelated phases. The participants initially experienced a collapse of their familiar sense P8.6. The lived experience of the neighbourhood for carers of well-being, then endured a period of ill-being, which gradually of people with dementia subsided as they found ways to feel well again. Finding ways to feel Ward Richard, Clark Andrew well again meant to discover the strength and resources necessary to redefine, rebuild, and maintain an alternative sense of well-being. This paper will report on a qualitatively-led study of the relationship In this cyclical and continuous process the participants’ attention that carers of people with dementia have with their neighbourhood. to the illness fluctuated as they were impelled to relegate the illness Using a mix of methods to consider the dynamic relationship of to the background of their lives while managing its symptoms in the neighbourhood as a physical space and as a social space the the foreground. Feeling well, as a whole, meant for the participants research explored the changing nature of place and space over time to find richness in the details of their daily doings and cherish for a group of carers and ex-carers in the North West of England. the interconnection between their lives and the lives of others. The research reflects a growing interest in the notion of ‘dementia- As time progressed and the participants grew accustomed to friendly communities’ in both policy and practice. However, in a this new, alternative sense of well-being, it became their familiar context to date where much research has prioritised either the sense of well-being. However, the delicate balance of ‘ill-being’ physical properties of the local environment or the social networks and ‘well-being’ was easily disturbed. The process of defining and in which people with dementia and their carers are embedded we constructing an alternative sense of well-being repeated itself when argue for the importance of considering the relationship between increasing symptoms propelled the illness back into the foreground these different dimensions of place in the formation of notions of of the participants’ lives. what constitutes dementia-friendly environments. In particular our The findings of this study give credence to emerging efforts to focus has been upon how carers experience their neighbourhood; create holistic, person-in-environment approaches to clinical the role it plays in their everyday lives; and the shifting meanings practice that incorporate available support systems and aspects of home and local spaces in the context of living with and caring of a person’s lifestyle, emotional needs, and spiritual preferences. for a person with dementia. Our findings suggest the need to Possible avenues for healthcare professionals to enhance the ability consider place and space over time and we draw in particular upon of people with early-stage dementia to experience a sense of well- notions of place as a ‘spatio-temporal event’ (Massey, 2005) in being while living with the illness will be discussed. Further research order to underline the fluid and changing relationship to the local is required to investigate if, and if so how, the meaning of well-being

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changes as the illness progresses. P9.3. How photography, blogging and the arts helped a person with dementia accept his diagnosis P9.2. Aesthetic emotions in people with dementia: Making Pascoe Ann museum art accessible to people with dementia Ragni Silvia, Attaianese Fulvia, Boccardo Mauro, To show how photography, blogging and the arts, helped a person Levi Stephanie, Bartorelli Luisa with dementia living in the rural Highlands of Scotland - after 6 years of denial - to finally accept his diagnosis. Introduction: Exposure to art can open up new channels of To explain how his photography transformed his dementia world communication for people with dementia. Contact with art into one that has not only helped him accept his dementia diagnosis, creates a path through cognitive and behavioural problems that but also given him a sense of well-being celebrating the things he result from the disease, going to the very root of being, where there can do rather than what he cannot do. is still the capacity to be moved by beauty in all its forms. Based How he used his photography and art as a basis to: on this philosophy, the Alzheimer Day Center of the Fondazione -- blog and tell the true ‘inside story’, giving much enjoyment to Roma organises guided visits for its participants to museums and others exhibitions. -- help children with learning disabilities overcome their sense of Purpose: Based on this premise, the project aims to evaluate the inadequacy benefits of an intervention in which people with dementia observe -- paint and move from a ‘dark’ to a ‘light’ place, and talk about works of art in a museum setting, led by trained -- create different forms of art as his imagination and creativity guides. Specific objectives are: the recovery of autobiographical were stimulated memory and expressive ability, leading to improved self-esteem; the -- raise monies for charity. improvement of mood through rewarding experiences; socialisation Samples of his photography and art will be examined to as a means to promoting a friendly community in which the demonstrate how by opening these new ways of looking at things, caregiver also participates. his photography and art provided a potent connection between his Material and Method: A group of 12 people, in a mild to moderate inner and outer worlds, resulting in a voyage of self-discovery and stage of dementia, accompanied by a multi-professional team personal growth. And that by coming to terms with this, he not only and volunteers, goes to an art museum to see works of art which reached a profound appreciation of his own worth, but was also free have been previously selected. This past year, the group went to to let go of negative feelings and accept his diagnosis. two museums: two visits to the Museum of the Fondazione Roma and five visits to the National Gallery of Modern Art. The visits last P9.4. Alzheimer’s disease and artistic mediation workshops two hours and are led by a museum-trained expert who engages the Mollard Judith participants in a conversation about the works of art. The protocol then includes: a follow-up two hour meeting at the Alzheimer France Alzheimer has always worked on non-drug therapies and Day Center a week after the museum visit to look at the slides of supports all kinds of activities for people with dementia. France the work and then again after a further two weeks. During each Alzheimer wants to improve people’s quality of life and that’s why meeting, an observation grid is filled in for each participant, with 97 associations in France are working every day helping and caring notes about verbalisation and other behavioural aspects. for people. Results and Conclusions: An evaluation of the results shows that Through this network, France Alzheimer has focused on the contact with beauty and exposure to art is inspiring and leads to development of artistic mediation workshops suitable for people reactivation for people with dementia. The work with art touches with dementia. their emotional circuits, which are not destroyed by the disease. It Alzheimer’s disease affects cognitive skills and abilities such as also stimulates cognitive aspects by bringing out autobiographical reasoning, logic, abstract thinking, etc… But, it does not affect memories and reinforces their relationship with the outside world. the ability to feel and to express feelings. Most of the time, all five In addition the participants spontaneously give their critical senses of people with dementia continue to work, making artistic opinions about the works of art, both positive and negative, mediation such as music, painting, theater, dance and photography normally unthinkable in people with dementia. It is evident that this very stimulating.. creates good feeling between the participants, the health workers Through this activity the caregiver meets people with dementia in and family members. Our observations are increasingly supported another way, art fostering self-expression, emotional connection, by studies in neuroscience. sharing and understanding. For the moment, there is no study measuring the scientific value and the therapeutic impact of this activity. However, in caregivers’ experience, these activities are a successful means to help people with dementia to maintain their identity and

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self-esteem. These artistic activities focus on the person, not on the because of the power of the work and the uniqueness of the disease: art is an alibi to create a relationship between the people approach. It is exhibited here for this conference to view. Please with dementia and others. also take a postcard and write your response to the exhibition. The There is no point in to interpreting the results, or learning savoir- approach, which is a collaboration between Bournemouth University faire. We aim at sharing pleasure though creative activities. Desire and artist Derek Eland, provides the basis for a wider roll out to other and self-esteem are stimulated also. parts of the UK and beyond. This approach offers a way to challenge 2013 France Alzheimer objectives: and change perceptions of dementia. Evaluating the artistic mediation workshops developed by the 97 associations throughout France. The objective is to identify the P9.6. «Awakened Art Stories» – rediscovering art with benefits, the quality of the caregiving and assess participating dementia artists. Oppikofer Sandra, Wilkening Karin, Angst Silvia Collaborating with the artists on a teamwork book including texts, photos, stories, and specialists’ interviews. The objective is to Background: «Awakened Art Stories» is an intervention project of the promote artistic mediation workshops, for all people with dementia University of Zurich in cooperation with the Alzheimer Association from the outset of the disease. of the Canton of Zurich et al. It animates persons with dementia to invent creative stories based on open-ended questions about P9.5. (Don’t) Mention Dementia – groundbreaking bizarre photographies and various paintings at the Kunsthaus engagement work in the UK museum in Zurich by using the TimeSlips storytelling-method Eland Derek, Innes Anthea, Cutler Clare, Hambidge Sarah of Anne Bastings. The group-setting as well as the possibility to encourage a creative process without knowledge of the individual Public perceptions of dementia are often based on negative biography are particular to this method. impressions and stigmatising views about what dementia is and Objectives: Thanks to the regular museum visits and creative what living with dementia might be like. This innovative arts project storytelling process, an intellectual stimulation and social uses a unique public engagement process to collect honest and raw interaction takes place in an accepting environment. This offers accounts of these impressions and views. The aims of the project persons with dementia as well as their caregivers the possibility to are to contribute to a fundamental change in public perceptions share positive experiences. Remaining skills and competencies of about dementia as well as give an alternative way to give voice to the diseased person are furthered, creative potential and the joy of those with dementia. doing something oneself are supported. The invented stories as well This public engagement project collected both the views of the as the pictures are taken home as a topic for further communication general public and those living with dementia using a ‘diary room’ between the caregivers and the person with dementia. technique. People with dementia and members of the general public Procedure: In spring and autumn 2013,16 creative storytelling sessions were asked to provide a handwritten story of their experiences/ will be held at the Kunsthaus Zurich. Participants are people with views on a postcard. In a digital age and in the content of dementia dementia either living at home with their family members or living there is nothing more powerful than the handwritten account. Over in care facilities with a medium to advanced cognitive impairment. a period of 12 weeks Bournemouth University Dementia Institute Each session concludes with a sponsored leisurely aperitif and a staff and volunteer students worked with people with dementia and social get-together for all participants. the general public to collect these stories. Stakeholder support was Evaluation Methods: The satisfaction with the program will be key to the success of this project, either at the national level through tested with a semi-structured questionnaire in May/June 2013. All the Alzheimer’s Society and Age UK as well as stakeholders at a local participants will be included in the survey. level. This enabled the project to have access to a wide range of The effectiveness of the program will be tested in a longitudinal groups of people with dementia. study involving all caregiver-patient dyads as well as the volunteer Hundreds of handwritten stories from people with dementia and workers in 2013/2014. members of the public were collected during the engagement Evaluation Results: Results of the satisfaction-survey will be on phase. As well as collecting written stories about peoples’ views hand in October and presented at the congress. about dementia we took digital images of the people who wrote Preliminary results of the effectiveness of the whole program will be their stories to demonstrate that visually it is not always possible to presented at the congress. actually know who has dementia. The stories and images were exhibited for the first time in the UK June 2013 and the reaction and comments of members of the public who viewed the work were also collected. Hundreds of people wrote about their response to the exhibition, also on a postcard. The work and resulting exhibition has attracted huge attention

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16.00–17.30 (Pinto): Parallel Session P10 situation in Europe? Each of the five objectives has been analysed while using these two questions to contextualise ALCOVE’s work. P10. Alzheimer Cooperative Valuation in Europe (ALCOVE) In answering these questions, ALCOVE’s aim is to make concrete Leperre Desplanques Armelle, Brooker Dawn, Gove Dianne, recommendations which propose avenues for improvement. Krolak-Salmon Pierre As a result of this work, ALCOVE is able to present operational proposals for several key aspects for improving, from a public health ALCOVE was born out of a need to share knowledge and experiences standpoint, care pathways and the quality of life for persons living about Alzheimer’s disease and related disorders in health policy with dementia as well as their carers: improve knowledge about between European Member States. Nineteen countries were dementia prevalence so as to be able to better anticipate needs; committed to this 2-year Joint Action, and were represented by propose a diagnosis at a time when it brings most benefit, such a thirty organisations which were appointed by their respective diagnosis should be accessible and accompanied by post diagnostic governments. ALCOVE acted in order to position and synergise its interventions for persons living with dementia and their families; public health missions with respect to other Alzheimer initiatives design a public health strategy for the disturbing behaviours related and research projects in Europe. In particular, a formal, close, and to BPSD, and in doing so reducing burn-out among carers and fruitful cooperation was established with Alzheimer Europe. allowing the person to stay in his or her home for the longest period The general objective of this ALCOVE Joint Action was to establish possible; improve the respect of the rights and dignity of people an independent and scientific European network to inform and living with dementia by encouraging good practices in advance advise decision-makers, health care professionals, family carers, directive and competency assessment use; limit the inappropriate individuals living with dementia, and other European citizens use of antipsychotics which is an ethical and safety issue shared by through convergent operational recommendations from a health all European countries. policy perspective. The 5 specific objectives were to improve (1) The ALCOVE collaborative approach which promotes benchmarking epidemiological data on dementia, notably its prevalence, (2) the and sharing between European Member States is an opportunity diagnosis, in terms of time and quality, (3) the support systems for to reform and to innovate much more quickly, i.e. refer to these BPSD, main cause of family burden and institutionalisation, (4) the recommendations in national guidelines or account for them rights and dignity of people living with dementia through a better in their specific health project plans. ALCOVE’s proposals aim to use of advance directives of will and of competence assessment, (5) improve care and quality of life for persons living with dementia and the use of antipsychotics with their reduction for a better quality their family carers in Europe. of life of people. What do we know in scientific terms? What is the

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Saturday, 12 October 2013 Conclusion: Preliminary conclusions are drawn on the user friendliness and usefulness of the STAR training in addition to its impact on carers. Final results are expected in Spring 2014. 8.30-10.00 (Perellos): Parallel Session The STAR project has been funded with support from the Lifelong P11. Carer training Learning Programme of the European Commission. This publication reflects the views of the authors only. P11.1. Development and evaluation of the European STAR training portal: Skilling and re-skilling carers of people P11.2. Care provision for people with dementia in Maltese with dementia hospital wards: paradoxes between hospital staff Dröes Rose-Marie, van der Roest Henriëtte G., Bengtsson perceptions and observational and audit data Johan E., Giuliano Angele, Hrin Silvia, Kevern Peter, Kingston Kelly Fiona, Innes Anthea, Scerri Charles, Abela Stephen Paul, Hattink Bart, Abiuso Francesca, Nugent Chris, Meiland Franka J.M. Many people with dementia will find themselves living for periods of time in hospital wards either for treatment of co-morbidities, Background and objectives: Because in the coming decades much for assessment purposes or when alternative care arrangements less professionals will be available to provide care to people with cannot be easily found. The experiences of hospital care for those dementia, the task of caring will be mainly conducted by untrained with dementia has attracted media and policy attention, with informal carers and volunteers. In order to care effectively for people increasing recognition that being in hospital can be detrimental for with dementia, avoid carer overburden and prevent premature people with dementia. This paper discusses the findings of a study admission to long term care settings, carers, in the European STAR evaluating hospital care provision for those with dementia living in project dementia, educational and technological experts in six two hospital wards in Malta. countries (The Netherlands, Sweden, Italy, Malta, Romania and UK) The physical environment, the psychosocial care delivery are working together to create and evaluate a European multilingual experienced by people with dementia and the views of staff working e-learning tool for dementia care. on the wards were examined using established and validated tools. Methods: Sample, design: The STAR training portal is evaluated The findings highlight a range of care paradoxes. The first is that the among informal carers, volunteers and professional carers in two physical environment of the hospital wards does not align to the countries (NL and UK) by a randomised controlled trial (ne+c=140 current evidence-based recommendations for good dementia care in total), and two countries (I and S) by using a one group pretest- environments. The second is that the care experienced on the wards posttest design (n=15 per country). Assessments are performed was largely ‘non-care’ in the sense that minimal care was actually with online standardised questionnaires, at baseline and after four observed or delivered. The third is that staff working on the wards months. ranked the setting more positively than the other data collection Intervention: During a period of 4 months the experimental group methods revealed. Our findings also suggest that staff had low has access to the STAR training portal, consisting of eight modules: expectations of care for those with dementia and low awareness of two on a basic level, six on an intermediate and advanced level of established care norms and expectations. which the last is primarily targeted for professional carers. They also In line with National dementia strategies, these findings highlight have access to online peer and expert communities for support and the need for increased staff development, mentoring and education exchange of information. The control group has access to public to raise awareness of how to improve both the physical and informative websites and materials as usual, however, do not have psychosocial care environments while exemplifying that small access to the STAR training portal. initiatives, if routinely adopted, could contribute to an improved Measurements: Main outcome measures: 1) user friendliness, 2) experience for those with dementia living in hospital wards. usefulness and 3) the impact of the course on the knowledge, attitudes and approaches of carers regarding dementia (primary P11.3. The nurses’ attitudes towards care of residents with outcome measures), and also empathy, quality of life, burden and dementia sense of competence of carers (secondary outcome measures). Grima Daniel, Scerri Josianne Results: The STAR training portal provides education on dementia, the disease course, the importance of obtaining a diagnosis, dealing Individuals are living longer due to improvements in health services with the practical, social and emotional consequences of dementia, and technological advances. Presently, in Malta about 14% of the support and communication strategies, and the emotional impact population is over sixty five years. Although dementia is not part on the carer. Personalised learning paths, textual information, of the aging process one of the major health issues related to old footage, links, reading material and tests are presented. Preliminary age is the increase in prevalence of dementia. In contrast there is results on how carers evaluate the training portal and its impact will a relative dearth in literature which deals specifically with nurses be presented. attitudes to these patients. The aim of the study is to investigate

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nurses’ attitudes regarding the care of patients with dementia. The influenced their lives. Additionally, in a survey dementia experts objectives included determining whether caring for such a patient is were asked to rate the frequency of the occurrence of the mentioned a positive and a meaningful experience; whether such care should experiences as well as to appraise the impact of the inventoried be provided at home or in a geriatric institution and whether nurses’ problems on the daily lives of people with dementia. All these attitudes vary by age and gender. results were input for the development of a scenario for the Into An exploratory inferential cross-sectional research design was used. D’mentia simulator. A first prototype was tested on user friendliness Data on nurses’ attitudes on care of persons with dementia were and usefulness among informal carers and dementia experts, which collected by means of a questionnaire constructed by Astrom (1986). helped fine-tuning the development of the simulator. Parallel to this The tool was distributed to sixty nurses in geriatric wards, having a development a short training was developed on dealing with the response rate of 93.3%. functional and psychosocial consequences of dementia. The majority of nurses (91.1%) perceived that they have positive Evaluation research: In a one-group pretest-posttest design study attitudes but would prefer not to have these patients in their wards. (in)formal caregivers were interviewed three times: before the This could arise as most respondents (82.1%) perceived patients with intervention, immediately after the intervention and two months dementia as aggressive, difficult to communicate and emotionally later. Outcome measures were: user friendliness and usefulness to connect with. Additionally caring for these patients was not of the simulator, and (among informal carers) impact of the Into considered a high status job. In general participants felt that persons D’mentia experience on coping, feelings of empathy and feelings of with dementia should not be cared for at home and that relatives competence and (among professional carers) impact on feelings of should be given the opportunity to be involved in their nursing empathy, approaches to dementia, emotion-oriented care and work care. A significant difference in nurses attitudes was obtained by satisfaction. gender (F = 5.93, p = 0.04) and age (F = 10.48, p = 0.04) with younger Results: The developed Into D’mentia intervention consists of a participants (21 – 30 years of age) and male nurses perceiving that it simulator in a mobile container using virtual reality and serious is just as meaningful to work in a residential aged care facility, as in gaming techniques, by means of which participants experience the an acute care facility. impact of dementia in daily life situations. Besides the simulator, The study demonstrated that there is a need for nurses working one week later participants are offered a short group training (half with persons having dementia to be more knowledgeable about a day). The procedure is as follows: After a short introduction on the condition as well as on therapies and skills required to provide Into D’mentia, people enter the simulator (20 minutes); after the optimal holistic care. There is also a need for nurses specialised simulation they are interviewed on their experiences (debriefing); in dementia care who could also be a source of motivation and one week later during the group training the participants experiences information for their colleagues to enable them to improve on their are discussed in small (5 to 10 persons) groups and additional practice. When planning in service courses for nurses a consideration information on dementia and how to deal with the consequences of differences in attitudes by gender and age should be considered. is provided. 35 (In)formal carers participated in the evaluation study. Informal P11.4. Into D’mentia: Development & evaluation of a virtual- carers were positive on Into D’mentia: 9 out of 10 informal carers reality experience of dementia indicated that it gave them ‘more insight’. They mentioned that Hattink Bart, Meiland Franka, Campman Carlijn, Sitskoorn ‘it’s an eye-opener, it shows you how people see you and how Margriet, Rietsema Jan, Dröes Rose-Marie you communicate’. 24 out of 25 professional carers agreed that they could ‘use knowledge from Into D’mentia in their daily Objectives: Research by the Dutch Alzheimer Association showed practice’. They indicated, for example, that after their Into D’mentia that 82% of the informal carers of people with dementia are at experience they looked at people differently, they were better in risk of overburdening 18% of them feels severely burdened. Also understanding how people with dementia experience situations as professional carers experience stress and report difficulties in if they are new to them. 21 out of 25 professionals also considered dealing with persons with dementia. The aim of the Into D’mentia Into D’mentia to be ‘very educational’. Furthermore, they mentioned project was to develop and evaluate a dementia simulator and that the Into D’mentia experience made them ‘much more aware’ training to promote the understanding and awareness of the and a professional said ‘though I knew much already, it made me experience of people with dementia; thereby aiming to reduce carer more aware of it’. The results regarding the evaluation of the impact burden and promoting more empathetic care. of Into D’mentia will also be presented at the conference. Methods: Development: First the literature was reviewed on citations Conclusion: A mobile Into D’mentia intervention was developed in of people with dementia on how they experience their dementia. which informal carers and professional carers can experience what These citations were categorised in themes (adaptation aspects, it is like to have dementia and how it impacts the life of a person problem areas, quality of life domains), which were discussed in with dementia. User friendliness and usefulness are positively separate focus groups with persons with dementia and informal evaluated by informal and professional carers. Final analysis of how carers to know if they recognised these experiences and how it Into D’mentia impacts the sense of competence of informal carers,

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work satisfaction of professional carers and whether it promotes the theory into practice. All participants carry out a development empathetic care will be presented at the conference. project in their own care unit. The main themes of the course are the principles of logotherapeutic P11.5. Putting the Positives into Caring: A Workshop approach in dementia care, the ways to support human dignity De signed by Carers for Carers and uniqueness of a person with dementia, the central role of Brown Caroline encountering in care and meaningful life. The education focuses on the meaning of choices and acts done by carers in daily care Caring for a person with dementia is unique and can be an isolating, situations. The participants have evaluated that as a result of this intensive, challenging, stressful, and rewarding experience. Caring education they have learned better to see the value of meaningful for parents, who both have dementia; I am only too well aware of the life for a person with dementia. They recognise better the meanings impact on my wellbeing, my ability to continue caring and the risk in moments and their ability to identify possibilities, resources and of carer burnout. The stress of caring for someone with dementia hope has developed. The participants recognise more deeply the is well documented, and can have an impact on the emotional, importance of their own actions and choices for the well-being of a physical, financial and spiritual wellbeing of carers, all of which may person with dementia. have a profound impact on the relationship between the carer and From the basis of experiences and evaluations, a model of education the person with dementia. This relationship is crucial to creating an by which logotherapeutic approach is being disseminated in environment in which the wellbeing of both carers and people with dementia care is constructed. In the future, this type of education dementia can flourish. for professional carers is needed in order to enhance the quality in Supported by Alzheimer Scotland John Killock, writer and dementia care. communicator, and Caroline Brown, carer, life coach, and member of Alzheimer Scotland’s National Dementia Carers Action Network, 8.30-10.00 (Wignacourt): Parallel Session worked in partnership to develop and deliver workshops, for carers. P12. Preventing carer burnout The aim of the workshops was to put the positives back into caring. Building on their own, combined 28 years experience, and that of P12.1. Alzheimer holiday in Austria other carers; Caroline and John designed the workshops to provide a Auer Stefanie, Span Edith, Zehetner Felicitas safe and supportive environment for carers of people with dementia to share experiences, listen to others and to learn techniques and Introduction: Prolonged caregiving is an exhausting task and can tips to help them restore the balance. The workshops used creative result in the development of depression and other serious health techniques including unique video resources as learning tools to problems. Phases for recovery are a necessity and not a luxury. achieve its aim. However, accepting respite is a learning process for many caregivers. This presentation will demonstrate how the creative techniques Traditional respite programs require a separation between caregiver used in the workshops are effective at improving how participants and PwD and may therefore not support this learning process viewed their caring role by putting the positive back into caring. because of the caregiver’s worries about the PwD. We developed a The presentation will firstly, describe how the workshops were respite program, the “Alzheimer holiday” in which both, the caregiver designed and the tools and techniques used, including a short and the PwD can enjoy their break from daily routine. Effects of this video clip. Secondly, the presentation will draw on the feedback program were assessed. from carers who participated in the workshops to identify the key Methods: This two week program is provided in a holiday region of areas of learning. Thirdly, the presentation considers the next steps Upper Austria, in Bad Ischl. In order to promote a close to life setting, in further developing and improving the reach of such workshops. persons live in a hotel and all program activities are provided there as well. While the PwD receives stage specific stimulation P11.6. Logotherapeutic approach enhances the skills of and supportive training twice a day (morning and afternoon), professional carers caregivers receive information about the disease, are trained in Heimonen Sirkkaliisa special communication techniques and receive group and individual counseling. Social activities and trips to nearby attractions and Logotherapeutic approach has been applied in dementia care in taking daily walks are additional program points. The effect of the Finland for several years. This approach underlines human dignity program on PwD’s functioning, cognition and behaviour as well as and uniqueness of a person, resources, possibilities and meaning in on caregiver burden and depressive symptoms were assessed in a life. At the Age Institute logotherapeutic approach is disseminated single group pre-post design. in dementia care mainly by education. ‘The Journey of Possibilities’ Results: 104 patient-caregiver dyads (GDS levels 4-6) took part in the training is being provided as a part of the ‘Meaning in Old Age’ study. PwD’s cognition, as measured by the MMSE, concentration, project (2011-2014). The course contains ten seminars (in ten months) as measured by the Brief cognitive Rating Scale (BCRS) behavioural and between the seminars the participants do tasks, which apply problems as measured by the BEHAVE-AD-FW and the E-BEHAVE-AD

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decreased significantly after the intervention. Caregiver Burden and intervention for caregivers of people with AD leads to an depressive symptoms decreased significantly as well. No significant improvement of their mood state and perception of burden, improvements were found for patient’s functional abilities thus showing promise in improving the emotional status of measured with the Functional Assessment Staging (FAST). caregivers. However, additional trials with larger cohorts at different Conclusion: The short intervention showed significant improvements geographical locations are required to confirm these results. For this in cognition and behaviour of the PwD and release caregiver burden reason, we are currently starting a large-scale trial implementing and depressive symptoms. The program is on-going and very well a psychotherapeutic group intervention in 25 centres throughout received by PwD and caregivers alike. It is cost covering and non- Spain. profit oriented. Different national insurance companies provide Trial registration: ClinicalTrials.gov - NCT01762618. financial support for caregivers. Since 2000, 355 PwD and Caregiver Acknowledgements: This study was funded by “Obra Social La Caixa”. dyads have participated in this program. The authors thank the participant centres: Centre Sociosanitari El Carme (Badalona Serveis Assistencials), CAP Les Corts (Barcelona) P12.2. Evaluation of a group psychotherapeutic intervention and CAP Sarrià (Barcelona). for caregivers of people with Alzheimer’s disease Poudevida Sandra, Molinuevo José Luis, P12.3. The Aloïs Network Gispert Juan Domingo, Camí Jordi Duval Philippe

Background: Family and caregivers of people with Alzheimer’s The Aloïs label has been created to develop a network of shops, Disease (AD) devote substantial time, effort and economical societies, NGO in different economic sectors able to propose adapted resources to their care, even putting at risk their own psychological solutions for people.with Alzheimer disease and their caregivers. and physical health. Interventions combining education about the The origin of the project comes from an observation: when a family disease and psychological treatment have been shown to improve includes a parent with Alzheimer disease at home, the situation several emotional dimensions and perceived burden. Besides, becomes very quickly a syndrome of loneliness: stopping of social this type of intervention also helps caregivers with accepting activities, breaking of the family and relational circle, etc. and managing a new and changing reality and facilitating the This situation has been well understood and included in the aims of communication among their peers. the French politic in direction of the Alzheimer disease, especially Objective: To evaluate the clinical impact of a group for the informal caregivers. psychotherapeutic intervention on the mood state and perceived Among the effects of the breaking of the social link, we can see that burden of primary caregivers of people with AD. the families loose the habit to go to the restaurant, to go to the Design and methodology: The trial was carried out in three centres hairdresser, to go shopping. Among the reasons, we can mention in the Barcelona area. Ninety primary and informal caregivers (30 the shame to show the behaviour of the person with Alzheimer participants per centre) were randomised into two groups: 60 disease to people who are not able to understand what happens and participants in the Control Group (CG) and 30 participants in the who do not know how react. We can also speak of the stress of the Intervention Group (IG). Participants of the IG (ten per group) had person with Alzheimer disease in such situations. a total of 14 weekly group psychotherapy sessions of 90 minutes The objective of the Aloïs Network is to attribute to shops, NGOs and each. Psychotherapy was based on cognitive behavioural therapy, other partners, a specific Label according to different criteria defined with some educational components. Participants also learned and by a social and professional comity. practiced the Jacobson relaxation technique. These criteria include especially a specific training of a part of the Both groups were evaluated before and after the intervention. employees of the structures participating to the network. The primary outcome measurement was the differential change The training developed for the employees lasts three days. It is from baseline to final evaluation between IG and CG in mood shared between theoretical and practical periods. It has been state measured by the Profile of Mood States (POMS). Secondary studied through a European experimentation simultaneously in evaluated outcomes were change in caregiver burden (Zarit Scale), France and in Spain in the frame of the PROGRESS program. This quality of life (SF-36 Health Survey), anxiety and depression (HAD experimentation has also shown important possibilities to create scale), perceived social support (Duke-UNC questionnaire) and jobs in the structures included in the Aloïs network. coping variables (COPE-28). The project has begun in the PACA region, in the south of France. Results: Results show a statistically significant improvement in The results will be evaluated in December 2014. mood state and caregiver burden. Moreover, a tendency towards Several partners are associated in the project: chamber of commerce, improvement in the scales of quality of life, depression and Alzheimer NGO, local authorities, etc. perceived social support was observed. On the other hand, there was no significant improvement in the anxiety and coping scales. Conclusions: The results show that group psychotherapeutic

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P12.4. Promoting behaviour and coping in family carers of however, little research has been carried on to better understand people with dementia the emotions, emotion regulation strategies, and well-being of Htay U Hla professional dementia caregivers, as well as their interplay. First, the current study aimed at observing the type and describing Caring for a person with dementia has been associated with high the frequency of emotions experienced at work by professional levels of depression and other psychological symptoms. Previous dementia caregivers. Second, the study proposed to analyse the research suggests that care giving responsibilities can directly links between emotion profiles, emotion regulation strategies, and affect carers’ health behaviour. The present study examined the well-being. Additionally, and given the consistent link between relationship between coping with caring and lifestyle behaviours in emotion regulation and experienced emotions on the one hand and carers of people with dementia. emotion regulation and well-being on the other hand, the study Previous research indicates that health behaviour in family carers aimed third, at testing whether emotion regulation moderates the of people with dementia (PwD) is a significant caregiver outcome. relationship between experienced emotions at work and well-being. Despite the growth of knowledge in understanding health To fulfill these goals, we conducted a descriptive study ona behaviour in general care giving, we know very little about the convenience sample of 43 professional dementia caregivers. All most important predictors of health behaviour in carers of PwD. In participants completed standardised questionnaires on emotion addition, there are no studies conducted so far that have directly regulation, physical and mental health and burnout. In addition, related health behaviour and coping with care giving, neither have a non-standardised questionnaire investigating 23 emotions they investigated the influence of depression and anxiety, and caregivers could experience at work was used. their potential influence in predicting whether a caregiver will Results of this research showed first, that in the challenging context adopt a healthy lifestyle. The present study was a cross-sectional of professionally caring for people with dementia, caregivers survey investigating the relationship between health promoting experienced more frequently positive emotion, such as joy and behaviours, carer burden, coping ability in carers and self-reported pride, than negative emotions, such as anger and sadness. Second, levels of anxiety and depression. when they used relatively inappropriate coping styles, they were The main objectives of the present study were: a) to identify more likely to experience negative emotions and less likely to associations between coping with care giving and preventative experience positive emotions. Additionally, these strategies were health behaviours, b) to investigate whether self-efficacy and linked to poorer physical and mental health. Third, expressive engaging in health behaviours is associated with caregiver burden, suppression significantly moderates the relationship between and c) to examine the contribution of depression and anxiety in experienced emotions and emotional exhaustion; the latter result predicting health behaviour in family carers. suggests that in some circumstances, expressive suppression might In line with previous theoretical models it was hypothesised that be a protective factor against emotional exhaustion higher levels of health-promoting behaviours will be associated The current study is a promising attempt to evaluate the complex with higher levels of coping ability and lower levels of caregiver interplay between emotion, emotion regulation, and well-being burden. In addition, family carers scoring high in self-efficacy were in professional caregivers. This work surely opens the path to expected to report higher levels of coping and more likely to report future research, which could more deeply focus on the emotional practising health-promoting behaviours. It was hypothesised that landscape and on the specific effects of various emotion regulation mood variables such as depression and anxiety will influence overall strategies used by dementia caregivers at work, while considering health practices in family carers of PwD. their increase in well-being as the most important target to improve.

P12.5. Caring for residents with dementia: Interplay between P12.6. Dementia Care Networks in Germany: The DEMNET- emotion, emotion regulation, and well-being in D-Study professional caregivers Wolf-Ostermann Karin, Gräske Johannes, Bassal Catherine, Dan-Glauser Elise, Kaiser Susanne Hoffmann Wolfgang, Holle Bernhard, Schaefer-Walkmann Susanne, Thyrian René Caring for elderly with dementia in residential settings is a very complex task, not only embracing technological skills, but also Background: Worldwide the number of people with dementia (PwD) efficient communication and emotional competencies. In order to is growing. Therefore great efforts are directed to support PwD cope with high dependency, absence of reliable communication, and their relatives in their own living arrangements. In Germany, and lack of interactional feedback, professional caregivers need local associations of different stakeholders (community care to adjust their attitudes and emotions to maintain the caring services, medical doctors, therapists, hospital facilities, self-help relationship with the resident. Consequently, all these conditions organisations, local authorities, etc.) are engaged in providing require a high emotional involvement, which, in other contexts, multiprofessional care and support for PwD in the community. has been frequently associated with burnout and stress. So far, However, these dementia care networks (DCN) are not implemented

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systematically or nationwide. Existing DCN differ regionally and are dementia with Lewy bodies, Huntington’s disease, vascular very heterogeneous. Empirical findings of helpful structures and dementia, but also adults with trisomy 21 or Down syndrome who effectiveness of DCN are lacking yet. developed Alzheimer’s disease. Objectives: In our study, we survey characteristics and structures of Firstly, there are common clinical signs between these 13 DCN all over Germany in order to raise knowledge about useful neurodegenerative diseases: cognitive symptoms, mood changes, structures of DCN and to prove effectiveness in terms of organising behaviour, sleep and eating disorders. And secondly, these diseases better support for PwD and their relatives. converge to the loss of autonomy. Methods: We consider DCN structures and processes as well as Psychiatric diseases have not been included in the scope defined health related outcomes of PwD and their relatives. Structures and in this report. The report highlights in particular the primacy of processes in DCN are evaluated by structured interviews. Health- cognitive disorders that distinguishes dementia from mental illness. related outcomes e.g. quality of life, depression, social participation, Furthermore, methods of support and structures are different and use and costs of health care supply and burden of care are surveyed require radically different approaches. in a a longitudinal design (2012-2015) with up to n=715 PwD and In this report, France Alzheimer and Médéric Alzheimer Foundation family caregivers emphasize particularly the need to preserve the specificities of Results: The participating DCN are located all over Germany each pathology in supporting and taking care of patients and their geographically covering more than 5 million residents in urban as families. To this end, the transposition of some devices to other well as rural areas. First results of the structured interviews show the diseases should be preferred rather than opening these devices to heterogeneity of the DCN as well as the meaning of governance in other patients. such network structures. Preliminary results of the baseline survey on outcomes of PwD and family caregivers will be presented at the P13.2. The role of dementia support workers in the conference. community in removing the barriers to isolation and Conclusion: Our results will shed some light on the question which exclusion following diagnosis structural aspects describe successful DCN in order to improve care Jones Kerry, Lang I. and social participation of PwD and reduce burden of caregivers. The first ever National Dementia Strategy for England was launched 8.30-10.00 (Vilhena): Parallel Session in 2009 with a five year plan to transform the quality of life for people P13. Dementia strategies and policies with dementia, their carers and their families. The strategy set out key objectives which included ‘enabling easy access to care, support P13.1. The extension of the French Alzheimer plan to and advice following diagnosis (Department of Health, 2009). To neurodegenerative diseases address the challenge faced by people with dementia and their Desana Marie-Odile carers in accessing services in the community, the development of Dementia Support Worker roles was initiated in several areas, In France, for many years, the onset of cognitive disorders was including a site in the southwest of England. considered as a natural part of growing old. Since 1985, France By aiming to reduce the sense of exclusion people with dementia Alzheimer held the position for the recognition of dementia as a real currently face due to barriers in accessing services in the community, disease quite independent of aging and mental illness. Dementia Support Worker’s provide a named contact for a person Before 2004, Alzheimer and related diseases were associated to with dementia and their carers following diagnosis who can then psychiatric disorders, and then the second Alzheimer plan has signpost to appropriate services, offer care and support and assist recognised Alzheimer’s disease as one of the 30 diseases whose in facilitating engagement with other services including health and medical costs are reimbursed at 100%. social care. On September 2012, the President, François Hollande has announced This paper discusses the findings of an evaluation of the the continuation and evaluation of the third Alzheimer Plan 2008- effectiveness of the Dementia Support Worker’s role. This research 2012, and its extension to neurodegenerative and psychiatric suggests role has the potential to offer a crucial initiative when diseases. people are provided with a highly responsive, individualised and Further to these statements, France Alzheimer and Médéric timely service when the factors which facilitate an effective service Alzheimer Foundation, key players in the field of Alzheimer’s disease are embedded. This is dependent upon removing the barriers in France, have jointly realised a report to determine the scope of to an effective service and ensuring the provision of high quality neurodegenerative diseases based on their level of closeness with supervision to support the Dementia Support Worker role and active Alzheimer’s disease. integrated working with health and social care and possession of A coherent group of neurodegenerative diseases has been identified person centred attributes. according to their level of closeness with Alzheimer’s disease. It includes Alzheimer and related diseases, Parkinson’s dementia,

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P13.3. Creating dementia friendly communities: Findings P13.5. Why case management fits in a dementia-friendly from the UK society Chandaria Karishma, McNamara George Bruijs Anne-Marie, Meerveld Julie

Dementia is now firmly on the public and political agenda. In March Past - building: Case management dementia was one of the aims 2012, the UK’s Prime Minister’s launched a challenge on dementia in the Dutch Guideline for Integrated Dementia Care (National and increasingly the focus is on creating dementia friendly Programme). Why and how did we start and how could we finance communities. case management dementia? We explain the consequences and All across the UK, people are working together to make their how we could build such a professional worker. communities more dementia friendly. These areas have tapped Present – development: How many case managers work in the into a swell of community commitment for improving the lives Netherlands? How do they work and get payed. Can we see a change of people living with dementia. Importantly they are building an in their performance. Which are the success factors and what can we understanding and awareness of dementia; where people with learn from the past? dementia and their carers are encouraged to seek help and support; Future - acceptance: How can we guarantee case management feel part of their community; and have more choice and control over dementia for the future (financial as well as the function). We will their lives. show some insights in the Dutch economic and political situation In its report, to be released in September 2013, Alzheimer’s Society and the impact on case management dementia. At the moment has listened to people with dementia and their carers to uncover there is a tending movement towards a civil society. This is because what it means to them to live in a dementia friendly community. of the decentralization of governmental tasks. At this point there’s Research for this report involved a survey of over 500 people with a serious effort to empower citizens and informal caregivers. dementia, individual and group interviews with people with Case managers can help in this process. But It also gives us the dementia and their carers, and a public poll of over 2’200 UK adults. opportunity to introduce the dementia-friendly society. While many communities are brokering new partnerships, people with dementia still face significant challenges to engaging more P13.6. Impact of the economic crisis on carers of dementia actively in their community. Hosting an Alzheimer’s Society stand patients in Greece and poster presents an opportunity for international shared learning Efthymiou A., Vlachogianni A., Potamianou D., Papagianni about the experiences of people with dementia and the factors M., Vamvakari E., Zoi P., Kanellopoulou S., Nika A., Touriki E., that are critical for creating a dementia friendly community. While Margioti E., Nikolaou C. the findings of the report are currently under embargo, the report captures evidence and examples of good practice that demonstrate The current economic crisis has had devastating effects on the the practical ways we all can make our communities more dementia Greek Welfare State. Older people, people with dementia and friendly. their carers are experiencing the consequences of worsened socio- All of Alzheimer’s Society work is grounded in the experience of economic conditions: salary and pension cuts, public health cost people living with dementia and their carers and within this report cuts, taxation and unemployment. a particular focus has been given to hearing from people with At this moment there are 200.000 people with dementia in Greece. dementia from seldom heard groups. The monthly care cost for autonomous patients is estimated to 341 €, for highly dependent and still living at home patients to 957 € P13.4. Making dementia a global public health priority: and for patients living in Hospices to 1267 €. Family carers spend on Translating global actions into local energy average 168 hours in caregiving per month and paid carers spend 72 Wortmann Marc, Splaine Michael hours per month (Kyriopoulos, 2005). Considering that legislation and social support frameworks were Several global policy streams are shaping the debate about dementia already inadequate prior to the economical crisis, consequences of as a public health priority, from the expected adoption in May 2013 current recession have multiplied the difficulties carers are facing. of a new WHO Non-Communicable Disease Plan and WHO Global The aim of the present study is to present these changes in carers’ Mental Health Action Plan, recommendations soon to be published and their family members lives during these last three years. from a major meeting on long term care sponsored by WHO as well A questionnaire was administered to 250 carers, systematic users as continued European/global initiatives to define and measure of Dementia Day Care Centers. Questionnaire items, in open healthy ageing and age-friendly communities. This session will brief and closed format questions, were chosen by Day Care Center participants on the key points in each of these work streams, tease professionals, from carer focus groups and the relevant literature. out their significance for country level and local action, and identify Results are discussed. key documents and sources of additional information.

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8.30-10.00 (Verdala): Parallel Session person informs and motivates people with dementia and their P14. New psychosocial interventions family members to cooperate in meaningful social activities in the community of the region Nijmegen and Deventer in the Netherlands. P14.1. A lot of things work better with music – Music therapy If activities need to be adapted and people need to be trained to and dementia be able to participate, accordingly a multidisciplinary program Willig Simone of occupational therapy (the COTiD program), physiotherapy (the Coach 2 Move program), home care and voluntary assistance with During recent years, music therapy has become an important part also coaching on a distance, is offered. of the psycho-social services provided for people with dementia Methods: the research project follows the steps of the MRC connecting to the encounters. Often serving as a different kind of framework for evaluation of complex interventions. Using mixed language, music assists both in establishing contact with other methods: qualitative research methods defining successful program people, and with one’s own emotions and body. Music has the components and testing of the feasibility of the program, a research ability to build a bridge to a person’s past and cultural origin and protocol for a main randomised controlled trial is defined. Finally, to promote a sense of belonging and a lasting feeling of security. a RCT evaluates the effectiveness of the social fitness program on Frequently, previously undiscovered resources can be promoted older people with dementia and caregivers. Alongside this RCT we’ll through the use of music. For example, many people with dementia perform a process analysis. can easily reproduce lyrics of songs they used to be familiar with Implication of results: successful components, results on feasibility from beginning to end. Memories connected to these songs are of the social fitness program and barriers and facilitators for recalled and can thus be communicated. Through this process of implementation will be presented. Important components of this reminiscence, a new kind of communication is elicited, which is program are improvement of participation in social activities, of both verbal and nonverbal and shaped through the use of musical autonomy, of sense of competence and self-esteem, decrease of instruments. Music mirrors personal identity, which in turn finds a loneliness and increase of quality of life of older people with dementia counterpart in musical expression. Therefore, music is one of the and their caregivers. Feasibility of the social fitness program related strongest tools in preserving a sense of identity in people with to the target group of older people with dementia and caregivers, dementia. related to the cooperation of the different professional disciplines Simone Willig is holding a diploma in music therapy (University and related to organisational and health system aspects will be of Applied Sciences) and has musically accompanied people with presented. Also barriers and facilitators for implementation and dementia for 13 years. She has authored the book „Mit Musik the design of the consecutive randomised controlled trial will be geht vieles besser – der Königsweg in der Pflege von Menschen presented at the conference. mit Demenz“. In her paper music’s effects on body and soul are explained and music therapy is introduced in the encounter of P14.3. Admiral nursing in an acute hospital – creating a people with dementia. A large number of practical examples are dementia friendly hospital provided, and listeners are invited to participate and to discover Bell Jeni, Dening Karen music for themselves. This presentation / poster will present the innovative work P14.2. Feasibility of a newly developed tailor-made social undertaken within the University Hospital Southampton who are fitness program for community-dwelling older people the first hospital in the UK to employ an Admiral Nurse (Specialists with dementia and caregivers in Dementia Care) as a clinical lead in a dementia specific role. Donkers Hanneke, Graff Maud, Veen Dinja, Vernooij-Dassen Following the SPACE principles, published by the RCN (2011), the Myrra, Nijhuis-van der Sanden Ria acute trust is working towards creating a dementia friendly hospital. The National Dementia Strategy (2009) stated clear objectives with Background: Social participation is one of the four central themes regard to improving quality of care for people with dementia in acute for good quality of person centered care in dementia in Europe. hospitals as well as supporting family carers. This has not always Aim: to evaluate feasibility and effectiveness of a newly developed been the case as the Report of the National Audit of Dementia Care tailor-made social fitness program on participation in meaningful in General Hospitals (Royal College of Psychiatrists 2011) has shown. social activities of community-dwelling older people with dementia Admiral Nurses have traditionally worked in community settings and caregivers. supporting family carers at home but this new innovation is aimed Intervention: this tailor-made innovative social fitness program at developing the role further to support generalist hospital staff to starts with a volunteer of a welfare organisation for the elderly, develop skills in caring for people with dementia within the acute who cycles through the region with all kind of social information care setting; be able to develop and deliver person centered care (digital & written information on social activities & communities), within a potentially bewildering and busy large general hospital and who attends all kind of places where older people come. This environment that is adapted to assist the person with dementia in

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feeling safe and secure. on mind-body coordination through spontaneous dances and group The Admiral Nurse has been pivotal in creating dementia friendly games and on sensorial and memory stimulus through listening to physical environments for people with dementia and the launch of a live music by two voluntary violinists. patient passport scheme “This is me” (Alzheimer’s Society). Results and Conclusions: Great motivation in carrying out the The Admiral Nurse maintains the traditional role by supporting proposed activities. Enhancement of self-esteem. Greater ability to family carers through the intervention of Memory cafes based relate to the group. Improved motor ability, especially fine motor within the hospital. skills. Recognition and expression of emotions.

P14.4. Dementia in the elderly: Interventions diversified by P14.5. Determinants for success and failure in the imple- competences. Educating to recognise Emotions and mentation of an evidence based occupational therapy Psycho-Physical Potentials intervention in the Netherlands Bruno Patrizia , Pirozzi Mariacarmina, de Rosa Giuliana, Döpp Carola, Graff Maud, Olde Rikkert Marcel, Nijhuis-van Francone Caterina der Sanden Ria, Vernooij-Dassen Myrra

Introduction: Progression and irreversibility of brain damage, typical Background: A multifaceted implementation strategy was developed of primary senile dementia, forces us to detect early symptoms and and tested to implement an evidence-based occupational therapy to learn which the psycho-physical changes related to the disease program for people with dementia and their caregivers. The strategy might be. was effective in increasing the number of referrals to the program, Continuous and prolonged support is needed, not only limited to but not in improving adherence of occupational therapists (OTs). medical care and pharmaceutical drugs, but which instead takes To identify factors that influenced the success and failure of this into consideration all the other relational aspects such as the strategy we conducted a process evaluation. implementation of interventions diversified by competences. Methods: A mixed method approach was used to evaluate the Purpose: To provide the elderly affected by dementia the right implementation process. Data on attitudes of OTs and barriers to tools to stimulate their remaining physical, mental, emotional and implementation at baseline were collected from all 94 participating communicative abilities. OTs using a 19-item questionnaire. Data on experiences with the To support and educate their families so that the latter can stimulate implementation strategy were collected using focus groups with them in the home. OTs and telephone interviews with physicians and managers. Data In that case an Empowerment process was promoted, both as a tool were analysed using inductive content analysis. and the purpose to reach a better psycho-physical condition. Results: Our strategy mainly focused on increasing OTs promotional It was considered appropriate to herewith mention the pedagogical skills due to an initial lack of referrals. Related to this OTs reported a objectives and the business plan from the educational point of view, lack of experience with the program and a low feeling of competence. which integrated with the cognitive and motor ones, have allowed In addition, interpersonal contact was experienced as important to fully confirm the achieved results. however exposure of physician and managers to this type of contact Material and Method: Activities of Pedagogical Competence: The was limited. Managers greatly relied on OTs knowledge and skills meetings have been 7 and all based on the set objectives. The group and provided limited support in the implementation process. A of 10 elderly was heterogeneous in the degree of pathology. barrier related to physicians was the negative attitude of several The first meeting was to get acquainted and create dialogue. It physicians regarding psychosocial interventions. Organisational showed good motivation and a lot of curiosity. A box full of antique factors that influenced the implementation were available number and modern objects - which would recall their memories to a past of trained OTs, the size of the region a department needed to cover, and present daily life - was emptied on the table. In that way, it was the demand for OT, the focus of the organisation, and the balance possible to individually evaluate the degree of awareness about between cost and benefits of the innovation. Last, the position present and past, the degree of memory and the degree of space- of OTs within the network, the degree of collaboration between time perception. professionals, and the lack of physicians within the network with The second meeting focused its attention on mind-hand sufficient eligible clients were perceived important determinants for coordination and awareness of potential hand mobility, through implementation. working with plasticine and simple woodworking. Conclusion: The implementation of complex interventions is not an For the third and fourth meetings, some art-therapy and music- easy task, even if they are highly effective. In spite of targeting our therapy sessions were organised, mainly relying on the fact that implementation strategy to pre-identified barriers we only found sounds, music and art are intense, multi-sensorial and motor effects regarding the number of referrals which could be explained experiences which integrate with the person, regardless the by the main focus on promotional skills. Our data suggests that anatomical-functional condition of the brain. a first step to implementation is to make sure individual and For the fifth, sixth and seventh meetings, the activities were focused organisational prerequisites for implementation are in place and

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that partners for collaboration are carefully selected based on 8.30-10.00 (Pinto): Parallel Session P15 ambition, motivation, and personal commitment. In addition, the implementation strategy should be network-based and include P15. Mediterranean Alzheimer’s Alliance aspects that directly stimulate inter-personal and inter-professional Palermiti Federico, Kissani Najib, Duguet Anne Marie, contact and collaboration. Tsolaki Magda

P14.6. Developing a creative and theatre based intervention The significant increase in the number of people with Alzheimer’s for young people with dementia and their carers disease and related disorders worldwide is alarming. Over the next Ward Alison, Parkes Jacqueline, Prior Ross 20 years, it is estimated that this increase will be much steeper in low and middle income countries compared with high income This presentation will describe the early stages of an ongoing countries. project exploring the development of a creative and theatre based The countries outlining the Mediterranean are united by historical, intervention for younger people with dementia (under the age of geographical and cultural links, but more importantly by common 65 years) and their carers. Research with this group has found they values of solidarity. There is still little knowledge about the are often a marginalised group, who experience significant social problems surrounding Alzheimer’s disease, which remains under- isolation (Green and Kleissen, 2013, Harris and Keady, 2009 and estimated and insufficiently documented in many Mediterranean Clemerson et al., 2013). countries, especially in North Africa. This situation is set to have The field of artistic engagement and dementia is growing, currently a dramatic impact on human, sanitary and social society across much of the work is aimed at those aged over 65 years and reside the Mediterranean. By observing and understanding the current within a care home, as evidenced through the work of Ladder to measures as well as the emerging issues and requirements for the the Moon (UK) and TimeSlips (USA). Interventions often focus on future, common and adapted solutions for care, research and public the carer as a staff member and tailor the work towards developing policy could be more rapidly identified, incited and organised in this improved staff carer and person with dementia relationships. This region. project aims to learn from this work, adopting positive aspects, for Upon the initiative of the Monegasque Association for Research example its focus on a person centered approach, use of music, on Alzheimer’s disease (AMPA), a Mediterranean Alzheimer’s creative storytelling and movement, and explore how these can be Alliance was launched in April 2013 in Marrakech. This network, adapted to create an intervention which focuses on the needs of composed of Alzheimer associations, scientific experts and health those within a younger age group (under 65 years of age) and their care professionals from the Mediterranean region aims to support informal carers, living within the community. Mediterranean Alzheimer structures in their initiatives and to share The presentation will outline the proposed method, which will and exchange their knowledge and practice. The Mediterranean include participant observations during the workshops, semi- Alzheimer’s Alliance also intends to act on a local and international structured pre and post intervention interviews conducted with the level by producing an update of the specific needs in these countries, people with dementia and their carers. Each participant pair will promoting local experiences and putting forward recommendations also be asked to record their journey through the intervention with in order to make sure that Alzheimer’s disease becomes a priority in a diary/photo diary which will be used to aid the post intervention all the Mediterranean region. interviews. This session will present the objectives and the first initiatives This abstract will also present learnings from best practice in the of the Mediterranean Alzheimer Alliance. The issues concerning field of creative engagement with older people with dementia, the influence of socio-cultural factors on the needs and care which will be reviewed in relation to its fit with a younger age group. of immigrants from North Africa with cognitive disorders The project will aim to investigate the way in which creativity will also be discussed as well as the implementation of non- can aid communication pathways between the carer and person pharmacological interventions for people with Alzheimer’s disease with dementia, consider the role of identity developed through in the Mediterranean. This will be an excellent opportunity for other the creative process and aims to better understand the value of Alzheimer actors in the Mediterranean to join the Alliance. engaging with a creative intervention from the perspective of the person with dementia and their carer. A celebratory event is planned to display the work undertaken to a wider community audience, via an exhibition or open workshop, providing a vehicle to challenge, often, negative perceptions towards dementia and inviting the wider community to consider their awareness and understanding of dementia and share in the experiences of those participating in the intervention.

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10.00-10.30 (Exhibition Area): pharmacies into dementia-friendly settings supporting dignity and PO3. Poster presentations - Dementia-friendly quality of life of people with dementia and their caregivers. Applying society principles of community based participatory health research (CBPHR), people with dementia and their caregivers, community PO3.1. The Fox Valley Memory Project: Creating a dementia- pharmacists and health care and community partners will be friendly community in the US involved in re-orienting community pharmacies (von Unger 2012, McFadden John and Susan Plunger & Heimerl 2012). Research Questions and Methods: CBPHR is linking research and This talk (or poster) will describe the vision, mission, and goals of interventions, and calling for a cooperation of community partners, the Fox Valley Memory Project (FVMP), a multi-faceted approach to professionals and researches, ultimately aiming at creating relevant creating a dementia-friendly community in northeast Wisconsin knowledge for transforming health care practices and settings. The (USA). Our vision for the FMVP is to make quality of life measurably following questions are guiding the partnership-building process: better in our community by easing the fear and isolation associated Who are relevant partners/communities to be involved? How can with dementia, and by increasing access to the resources people all relevant partners be involved equally? What are experiences need to live well with dementia. Our mission is to collaborate with and expectations of people with dementia and their caregivers other organisations to offer programs and services for persons with regarding community pharmacies? How do community pharmacists dementia, as well as their family care partners and friends, and to conceptualise re-orientation of pharmacies? To facilitate encourage practices of hospitality and inclusion that make our participation and grasp various perspectives, interviews, focus community dementia-friendly. To that end, we have established groups and a needs assessment using appreciative inquiry are being memory cafes in 5 locations in our region; three of the cafes meet carried out. Transdisciplinary working groups will be organised to twice monthly and two meet once a month. Our Care Partners develop interventions and community-based projects. Furthermore, Welcome Center functions as a drop-in site for care partners to get all partners participate in relevant discussions and decisions information, become connected to community resources, and receive via involvement in project bodies – the steering committee and support for responding to care challenges. The Welcome Center also advisory group. sponsors a volunteer group for men with dementia who want to work Results and Discussion: Involvement of relevant partners was on projects that will benefit the community. We are working with conceptualised as gaining interest from professionals - pharmacists, Goodwill Industries on outreach to local employers to educate them other health and social care practitioners, and community partners about dementia and to provide vocational support and guidance – people with dementia and their caregivers. So far, the project to diagnosed persons wishing to remain employed. Another FVMP succeeded in building partnerships with Alzheimer Austria, a self- component is community education; we have sponsored large help group, community pharmacies and their professional body and community talks as well as Clinical Medical Education programs health promotion and palliative care organisations, who all provided for physicians. We are conducting research on many aspects of the rich input for the design of the project. Already at this point, Memory Project, including assessing community knowledge about differing perspectives on caring for people with dementia and their dementia and the physical and social components of our memory relatives in pharmacies became visible, which may be framed as cafes. We actively reach out to long-term care residences in our problem-based vs. person-centered. First results from the ongoing community, primarily through encouraging staff training in creative needs-assessment will be presented and implications for further engagement activities. We plan to launch a memory assessment cooperation and development of interventions will be discussed, as center in August 2013. Our presentation will describe our philosophy well as potentials and challenges of CBPHR. of collaboration with government agencies, foundations, and not- for-profit as well as for-profit organisations. PO3.3. Master course for dementia studies at the Danube University Krems, Austria PO3.2. Dementia friendly community pharmacies – building Auer Stefanie, Span Edith, Adler Christine, Brainin Michael participatory networks for community-based care Plunger Petra, Tatzer Verena, Heimerl Katharina Success in improving the quality of life of persons with dementia and their caregivers are facilitated if knowledge from different Background: People with dementia and their caregivers are regular disciplines is integrated. All relevant disciplines have to work users of community pharmacy services. However, so far only a together on this important task. There is a serious gap between few pharmacy-based initiatives have focused on their needs apart scientific knowledge and knowledge in practice environments such from medicines management. Based on Palliative Care and Health as hospitals, nursing homes, care environments and the decision Promotion principles, the project “Dementia friendly community making governmental agencies. We developed a curriculum pharmacies. Community-based health promotion for people with with the intention of covering most of the specialty areas in dementia and their caregivers” aims at transforming community order to improve the interdisciplinary knowledge of the different

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participating professionals. This curriculum is organised within PO3.5. Changing definitions of end of life care: including the postgraduate teaching concept of the Danube University and it dementia under its remit consists of elements of basic biological knowledge about dementia, Gysels Marjolein, Evans Natalie, Pool Robert diagnostic criteria, pharmacological and nonpharmacological treatment concepts, and stage specific care and treatment Objective: The terms used to describe care at the end of life (EoL), concepts. Methodological knowledge such as statistics and basic and its definitions, have evolved over time and reflect the changes scientific knowledge is part of the course curriculum in order to in meaning the concept has undergone as the field develops. We assist in making international scientific literature accessible. The explore the remit of end of life care as defined by experts in EoL care, students are stimulated to practice scientific writing and they are from across Europe and beyond, to understand its current usage and required to formulate a master thesis. The duration of the course is meanings, and we consider the implications of including dementia 3 years. The teaching language is currently German. The course was care. initiated in 2009 and there are 50 students enrolled from different Method: A qualitative survey attached to a call for expertise on European countries such as Italy, Switzerland, Germany and Austria. cultural issues in EoL care was sent to experts in the field identified The course includes an international faculty. Successful participants through the literature, European EoL care associations, and have come from various professional backgrounds such as medicine, conferences targeted at EoL care professionals. Respondents were psychology, social work, nursing, teaching and law. asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis. PO3.4. Journey of Care: World Alzheimer Report 2013 Results: Responses were received from 168 individuals (33% response Wortmann Marc, Splaine Michael rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe Background: The World Alzheimer Report 2013 will be the fifth and beyond. 29% of respondents said explicitly that there was report of Alzheimer’s Disease International published during World no agreed definition of EoL care in practice and only 14% offered Alzheimer’s Month with the purpose of raising awareness about a standard definition (WHO, or local institution). 3% said that the Alzheimer’s disease and dementia and bringing policy issue into concept of EoL care was not used in their country, and 5% said that discussion. there was opposition to the concept for religious or cultural reasons. Methodology: In this report, that will be published in the week of Two approaches were identified to arrive at an understanding of 21 September, we will do a systematic review on the continuum EoL care: exclusively by drawing boundaries through setting time of care for someone with dementia. It touches on the questions: frames, and inclusively by approaching its scope in an integrative what do we mean by dependence (long term needs for care)? What way. This led to reflections about terminology and whether defining is the relationship between disability and dependence? What are EoL care is desirable. the impacts of culture and systems (health, social and welfare) on Conclusion: EoL care’s remit is expanding, globally and in terms of dependence? timing and conditions. Including dementia under its remit, raises We will also look at the independent contribution of dementia to questions both about the effects of EoL care on dementia as about needs for care among older people? How does that compare with the consequences of dementia for the understanding of EoL care. that of other chronic health conditions? Why is the contribution of dementia so considerable (how and why do needs for care in PO3.6. The impact of war and living with dementia dementia arise, across the disease course)? Cutler Clare Another section will contain the Systems of Care, including the role of the family (informal) carer, community assistance (homecare, The impact of war experiences on the lived experience of dementia nursing assistant, community meals), day-care and other forms of is currently unknown. Living with personal memories of war is a respite, different models of residential care, end of life care and care reality for many (veterans, civilians, children, nurses). Prior research and support after death has examined the relationship between experiences of war and Finally, the report will also touch on Quality of care, and how it post traumatic stress disorder, yet has neglected the impact of war might be improved, costs of care and examples from solutions in a experiences on living with dementia. With the population ageing, number of countries from around the world. the number of people with dementia are expected to rise, and Results: Conclusion and recommendations will be available after hence the issue of past war experiences on the lived experience of 21 September, but likely touch on the need for national dementia dementia requires more attention. policies and plans, with provision for comprehensive continuum of This poster will report a review of the evidence that has linked care meeting needs of people with dementia and carers, throughout experiences of war with experiences of dementia, through three the disease course societal constructions: -- Societal understandings of dementia -- Societal understandings of war and conflict

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-- Societal understandings of post-traumatic stress disorder. The Alzheimer Society of Finland wants to build a safer life for people This doctoral work will work with people with dementia who with memory-related diseases by raising awareness about safety have firsthand experiences of war, enabling exploration into this issues as well as the basic human rights. The TAKE CARE! campaign gap in knowledge in dementia research. In grasping an enriched is challenging all Finns to take care of themselves and the people understanding of past war experience and living with dementia, around them. We all need each other occasionally and no one this project has potential to facilitate carers, family members and should have to survive alone. medical professionals in tailoring the care they provide which will The campaign will: lead to greater quality of life among people with dementia. -- Make everyday life safer for the people with memory-related diseases. PO3.7. Lived experiences of caring for a family member with -- Raise awareness among Finnish people to take care of the people dementia in Malta with memory-related diseases. Spiteri Deborah, Zahra De Domenico Roberta -- Recruit you! Anyone can be part of the campaign and for example join as a Dementia is an umbrella term referring to a number of medical volunteer Memory-Friend. Campaign is engaging a broad range of conditions characterised by progressive impairment of cognitive people and organisations, maybe also including unusual allies, who functions and includes loss of memory, difficulty in communication can help make the case, generate public support, and build public and deterioration of executive functions. In Malta, care for will. individuals with dementia is mostly provided at home leading to 2013 will be filled with activities: The campaign has already begun a significant physical and psychological burnout. The aim of this and will run World Alzheimer’s Day on 21 September. On 1st of study was to elucidate the experience of caring for a family member February, The Alzheimer Society of Finland held a forum for policy with dementia. Semi-structured interviews were conducted with six makers, member associations and the media in the Parliament of caregivers in whom four were the children (three daughters, one son) Finland, so called Little Parliament. Take Care is a communication with the rest being the spouses (one husband, one wife) of a relative campaign which consist of several activities for example media with dementia. The interviews were audio-recorded, transcribed and events, seminars, Facebook campaigns and other happenings. In analysed. The findings indicate that the caregivers’ life changed addition, campaign will gather urgently needed information about dramatically from the moment their relative was diagnosed. technological innovations, for example the use of technology or Different factors determined why caregivers decided to pursue informative mobile applications etc. that help to ensure a safer this role and included family loyalty (obligation, commitment and environment and maybe also more freedom for the patient and for duty) and reciprocity of care. With disease progression, caregivers the caregiver. Campaign is executed in co-operation with the Finnish became fully immersed with their relative’s care, sometimes even National Rescue Association. at their own expense, that they experienced a downfall in their overall quality of life. With time, they lived through several kinds PO3.9. Quality of life in community of losses with caregivers grieving mostly the psychological loss of Bundaleska Olivera, Neloska Lence their loved one. Despite this hardship, caregivers managed to cope effectively and identified several positive aspects of caregiving. In There is period in human’s life when the spouse stays alone, after conclusion, this study continues to add on previous data on how the death of his partner and after his or her children leave the family members cope with dementia in the Maltese islands and home to raise their own families. In most of cases, those persons highlights the need of providing community care support in various are deeply disappointed by the new circumstances which take away aspects of dementia management. the simplicity from every-day life. Usually, they can’t manage the new life situation being unable to take care of themselves and PO3.8. The Alzheimer Society of Finland urges Finns to TAKE they become deeply depressed thinking that nobody needs them. CARE! Patients reaching for help in our institution, mostly come in such a Erola Leena condition of deep depression, being obsessed by suicidal ideas, ideas of not being useful and ideas of material collapse, overwhelmed by In 2013, the Alzheimer Society of Finland raises awareness with the dissatisfaction with their destiny.In order to make their stay more campaign titled TAKE CARE! interesting and attractive, a working therapy and an occupational The campaign begun from a true recent story: a woman with therapy is organised, of course according their choice. This therapy Alzheimer’s disease wandered outside her home and got lost during is organised and conducted by working therapist. The patients are a freezing winter day. She walked around for hours wearing only her working on various hand-made things such as knitting’s of socks, nightdress, but nobody stopped her and no one asked her if she sweaters, etc embroidering, making various things out wood and needed help; unfortunately she died later the same day in a hospital. straw. All these things produced, are than sold among the personnel Someone should have done something! of the institution. Special attention is paid to their cultural and

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amusement life. Many dancing groups, famous singers and children treatment, reduce readmission rates and ease the burden of care. from the different school come to entertain the elderly. Religious Self awareness, interpersonal learning and catharsis are basic and state holidays are celebrated regular, as well.At meetings, therapeutic factors involved in group process. Altruism, emotional besides the members, the Manager and an expertise team of re-experience of the primary family vibration and acceptance psychiatrist, psychologist, social worker, nurse, the work therapist from the group have been acknowleged as therapeutic factors but are always present. With their presence and active participation in regarded as less significant. the discussion, they give a huge contribution to the Club meetings. Caregivers who participate in cognitive behaviour groups favor of Club meeting are of open type. All their activities above mentioned a better sense control for their lives and also their environment are extremely helpful in keeping the patients fit and in avoiding (Hatzidimitriadou’s 2002). The ‘helpers therapy principle’ as the dark thoughts. The patients after they therapy are not longer described by Roberts et al (1990), helps both, ‘transmitter’ and emotionally and intellectually destroyed and the will for life is ‘receiver’, of the advice and makes compliance more effective. In brought back. parallel practical - educational information and developing support system guide-lines supplemented by written and other materials PO3.10. Enrichment cognitive strategies for brain stimulation were demonstrably effective. Karamberi Manto, Dalana Niki, Solias Andreas, Understanding of the interaction between the person and his/her Degleris Nikos environment through reality testing constitutes a key factor for cognitive and behavioural therapeutic techniques. Background: Recent research suggests that psychological The holistic intervention aims to improve the quality of life of the interventions have equal value with AchEI in an holistic approach of patients and their families. dementia’s deficits. Especially in BPSD their implementation at first is usually effective avoiding in parallel the drug side effects. PO3.12. Photovoice projects: building blocks for a dementia- Objective: To examine and compare the effectiveness of psychosocial friendly society interventions in three cohorts at the community: amnestic MCI Ataie Jutta E., McGovern Justine individuals, early ALZ patients and moderate stage ALZ patients. Methods and techniques: At first we use different tools according Medical progress in diagnosing dementia has created a new to each cohort based theoretically on Cognitive – Behavioural experience of living with the illness. This experience is no longer Case Management approach. Reminiscence emotional therapy, dominated by the final stages of the illness; rather, it is characterised Behavioural activation, Reality orientation therapy (ROT), Social by a prolonged uncertain state of living with ongoing cognitive skills training, Solving problems strategies, Snoezelen formula, decline. This state can last for many years. Research reporting Aroma and music therapy etc are the most popular and efficient non the experience of this period of decline from the perspective of pharmacological treatments for individuals (45-50 minutes) and for individuals with the illness has attempted to shift away from a group sessions (100 – 110 minutes). The appropriate use of electronic predominantly medical view of dementia. These studies have devices (e.g. computers, GPS etc) is strongly recommended because informed our understanding of the psycho-social-spiritual it enhances cognitive reinforcement and alternative functional experience of the illness. adjustment depending on the case. However, both the scientific and the popular community have Results: The combination of ROT, music therapy, reminiscence difficulties integrating this paradigm shift and dementia continues approach and social – behavioural activation improves the to attract “the stigma of a psychiatric illness” (Benbow, 2000). Though patient’s capabilities and delay the memory and functional decline. progress has been made in supporting older adults with dementia, Assertiveness training aims to reduce care – givers depressive mood much remains to be done to further integrate this population into and anxiety and high hopes for the future. community life. This paper argues that research projects using Conclusions: The non – pharmacological interventions provide an photovoice methodology can be a particularly powerful way of effective tool in parallel with AchEI to improve median temporal lobe raising awareness about dementia in the community by amplifying deficits increasing at one hand the brain neuroplasticity and at the the voices of individuals living with the illness. other hand fight the diseases stigma. Findings from a photovoice project investigating the experience of early-stage dementia suggest that through a process that involved PO3.11. Psychoeducation for caregivers of Alzheimer’s and taking photographs, small group discussions, photo exhibits, related disorders patients (cognitive – behavioural and presentations, participants were empowered to develop approach) positive perceptions of self and identify barriers and facilitators to Solias Andreas, Karamberi Manto, Degleris Nikos community integration. Although communities may have wanted to further integrate older adults with dementia into community Scientific studies have shown that psychoeducational programmes life, the photovoice project showed that the participants were ill- improve the patient’s ability and willingness to stay in long-term served by existing support services. What emerged from the data

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was a need for support systems that encourage active participation lies in the arts and cultural sector through partnerships with art in illness self-management while acknowledging that well-being is galleries and theatres. the reflection of a complex interplay between the person living with the illness, the illness symptoms, and the external environment. PO3.14. The world’s biggest fundraising day for dementia In summary, photovoice projects with their inbuilt research-as- Garden May-Hilde, Sellaeg Wenche Frogn empowerment orientation not only increase our knowledge but are beneficial to the study participants and the community at large. Background: Since 1974 an annual telethon has been hosted by The presented project revealed that early-stage dementia was not the Norwegian National Broadcaster (NRK) in benefit of a cause an impediment to living life as fully as possible; rather it was a lack promoted by an organisation. This autumn, on 20 October, 100,000 of support services that hindered the participants. Possible avenues volunteers will visit every household in Norway to collect money for for using photovoice projects to increase dementia awareness and the Norwegian Health Association and their work to improve the community integration will be discussed. lives of people with dementia. Norway’s telethon is the world’s largest fundraising event, as PO3.13. Developing dementia friendly communities in measured by participants and money collected per capita. It is Ireland also a great opportunity to raise public awareness about dementia Easton Avril through the national media. Norwegians can follow the event on TV as the state broadcaster will have eight hours of coverage, including The Alzheimer Society of Ireland has recently embarked on the reports about people’s experiences of dementia and results of the development of a new initiative within the organisation - Dementia fundraising. Friendly Communities. The initiative is focusing on improving the This year the Norwegian Health Association – an interest inclusion and quality of life of people with dementia and their organisation for people with dementia and their carers - will benefit families. We are working on building evidence to inform the project from the money raised. It is a voluntary organisation with more than through expressions of interest from communities across the 500 local branches which promote public health and dementia all country that wish to get involved. over the country. Its goal is to combat dementia and cardiovascular We envisage that each of these communities of interest will diseases through research, information campaigns, preventative demonstrate a high level of public awareness and understanding so measures and lobbying. that people with dementia and their families are supported to live Method: On the day of the telethon 100 000 volunteers will reach 1.7 well and remain active in that community. million houses. To mobilize every community in this long country, Through our dedicated Project Leader The Alzheimer Society of schools, companies, labour unions, sport organisations, and many Ireland is offering guidance and signposting each of these dementia more have their own arrangements and promote the cause through friendly initiatives across Ireland. We are constantly developing the their websites and social forums. It is a huge collective effort that information and resources available to assist them to develop and Norwegians call ‘dugnad’, when everybody does a little bit of promote their community to be dementia friendly. voluntary work for a good cause. We are also providing each community of interest with small scale The money collected helps fund measures described in the financial support for local initiatives that promote the inclusion of application for the telethon. The Norwegian Health Association the person with dementia and their families in their communities. will use the money raised to do three key things: first, mobilise We hope that these grants will assist the communities to identify more volunteers so that they can help improve the quality of life and develop new and inspiring initiatives which promote genuine experienced by people with dementia and increase their participation inclusion for people with dementia. in society; second, increase information about dementia targeted Partnership is also a key element of the whole project and we are at businesses, workers, public services and people with dementia working closely with the Ageing Well Network and Genio to promote and their carers, and third, to build up an interdisciplinary and co- the understanding and growth of Dementia Friendly Communities ordinated research programme into the causes and treatment of across Ireland. dementia. Some of the work that has been undertaken by the communities of Conclusion: The world’s biggest annual fundraising event goes interest thus far includes: this year to the Norwegian Health Association for their work on -- An awareness raising through primary schools in Co Donegal us- dementia. This will give Norway’s interest organisation for people ing the Dear Grandma booklet with dementia increased resources to help build a more dementia -- A conference held in Co Clare to promote the involvement of friendly society and fund research into dementia. young people (17-25) in our local services and the community -- The delivery of dementia awareness training to interested university students, community groups and businesses -- Grown the involvement of people with dementia and their fami-

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PO3.15. Dementia friendly cities set out to help and how they worked in partnership with businesses, Henry Sabine service providers, voluntary groups and individuals who shared their ambition to create a dementia friendly community by: Context: People with dementia often have difficulties finding quality -- Developing awareness programmes for stakeholders to help local information in their own city. Yet, this type of disease requires communities become friendly and fulfilling places for people familiar references; these people need to be able to rely on someone with dementia and their families who comes from a similar background and who can provide them -- Developing projects to increase local opportunities for people with specific, reliable information on the disease. with dementia so that they can take part in their chosen activi- Rationale: La Ligue Alzheimer is aware of these specific problems. ties of life for as long as they wish The association’s ‘motto’ is ‘A.I.D.E. près de chez vous’ (Help at your -- Increasing empathy and support for caregivers by speaking out side) because la Ligue believes that most solutions can be found about the practical and emotional challenges they face within the surrounding background of people touched by dementia. -- Challenging the myths and stigma associated with dementia by Several cities have expressed their need to be supported and developing a series of websites/social media to combat this accompanied in their willingness to develop local activities without -- Overcoming funding challenges to achieve this. considerable expenses. With the ‘Dementia Friendly cities’ concept, And finally how the concept was taken to a new level with lessons la Ligue Alzheimer has been able to meet these cities’ interests and learned taken across the Highlands of rural Scotland. financial limits. Description: The Dementia Friendly Cities are a network of cities PO3.17. The dementia friendly society in the Netherlands which hold and develop activities related to Alzheimer’s Disease Bruijs A., Meerveld Julie, Kimenai J. (training sessions ‘Circle of Care’; Alzheimer Cafés; home assistance to carers …) in consultation with ‘La Ligue Alzheimer. These activities How can we build a dementia friendly country? must be free of charge. Making life easier: As Alzheimer Nederland we asked ourselves: how The initiative’s objective is to encourage the integration of people can we make the life of people living at home with dementia easier. with dementia within their community. Each activity must To answer that question we started a small research project. We contribute to an improvement of the quality of life of people with found out that we have a strong network of professional healthcare dementia and their carers, a goal that has been set up on the basis in the Netherlands. Care for people with dementia is provided in of the World Health Organisation’s (WHO’s) Age-friendly Cities. a professional way by people with knowledge and skills about Achievements: This objective is stated on a Charter drafted by la dementia. But we also found a gap. Ligue and its partners since March 2011. The Charter specifies the The gap: For a person with dementia it is important to participate in sharing out of the tasks between each signatory. society especially at the beginning of the process: to be able to go A ‘Proxidem’ will be trained by la Ligue Alzheimer. This person will be to the gym, to go shopping, to visit museums, to get a taxi and to a communal agent already working in the field of health & quality go to a restaurant. To do this, it is helpful that others know about of life, disability, and/or the elderly. The training session will be free dementia. There is a lack of information and awareness by people of charge. and organisations in civil society. Conclusion: With this initiative, la Ligue Alzheimer– representative What others do: In Germany and Belgium, there are interesting of patients and their carers – proves that the association is part of projects about teaching society about dementia. In Belgium, a the solution and is able to find equal partnerships for people with bakery in Geel provided bread bags with helpful information and in dementia in their familiar surrounding background. Bruges they started a dementia friendly street. Much of this work is done by civil society for civil society. PO3.16. Growing rural dementia friendly communities across What the Netherlands do: In Brabant a provincial organisation ‘de the Scottish Highlands PG- Raad’ played an important role: They launched the 10 aims of a Pascoe Ann dementia friendly society. Together with local governments, social and cultural organisations provide information about dementia and To show how one passionate campaigner inspired a group of like- its impact including in schools. Rabobank is starting information minded people to turn their community from one with little support programmes for their employees. There is also a training programme to one that is fast becoming a dementia friendly community for taxi drivers. Alzheimer Nederland is collecting best practices and and also a beacon of dementia excellence across the rest of the projects and tries to stimulate others to follow and to make the lives Highlands of Scotland. of people with dementia easier. How the concept was taken to a new level and a Social Enterprise was established with profits to be reinvested into the community for the benefit of dementia families. How the Social Enterprise’s work was informed by the people they

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PO3.18. Creating dementia friendly communities: Findings Methods: It started with photo documentation comprising five film from the UK sequences of different zebra crossings. The same film sequences Chandaria Karishma, McNamara George were used in two focus group interviews with people with dementia being pedestrians. The two data sets were analysed by a grounded Dementia is now firmly on the public and political agenda. In March theory approach and findings were continuously compared to each 2012, the UK’s Prime Minister’s launched a challenge on dementia other. and increasingly the focus is on creating dementia friendly Results: Adding layers of problematic traffic situations to each other communities. created problematic traffic situations as a whole. The layers were All across the UK, people are working together to make their layout and design of streets and zebra crossings, weather conditions, communities more dementia friendly. These areas have tapped vehicles and crowding of pedestrians. To meet different layers of into a swell of community commitment for improving the lives problematic situations, informants used actions characterised by of people living with dementia. Importantly they are building an avoiding problematic situations, traffic light as a reminder and understanding and awareness of dementia; where people with security precaution, following the flow at the zebra crossing and dementia and their carers are encouraged to seek help and support; being a cautious pedestrian. feel part of their community; and have more choice and control over Conclusion: The core, the hazard of meeting unfolding problematic their lives. traffic situations when only one layer at a time can be kept in focus In its report, to be released in September 2013, Alzheimer’s Society was characterised by difficulties to stay in focus and meet the has listened to people with dementia and their carers to uncover problematic situations as a whole when informants met one layer what it means to them to live in a dementia friendly community. at a time. Research for this report involved a survey of over 500 people with dementia, individual and group interviews with people with PO3.20. Pilot project for a dementia friendly commune dementia and their carers, and a public poll of over 2200 UK adults. Closon MC, Praet JP, Zamora C ,Caty M, Mormal M., While many communities are brokering new partnerships, people Baeyens JP with dementia still face significant challenges to engaging more actively in their community. Hosting an Alzheimer’s Society stand Introduction: In order to allow dementia patients to stay at home as and poster presents an opportunity for international shared learning long as possible, if they wish, it is necessary to mobilise all potential about the experiences of people with dementia and the factors resources available in the commune allowing a psycho-medico- that are critical for creating a dementia friendly community. While social support of dementia patients and their caregivers. It is also the findings of the report are currently under embargo, the report important to foster the ‘destigmatisation’ of the disease and the captures evidence and examples of good practice that demonstrate patients within the professionals and the population environment. the practical ways we all can make our communities more dementia A pilot project is lead since 4 years in St Gilles commune (Brussels) in friendly. collaboration with the local population and the medical, social and All of Alzheimer’s Society work is grounded in the experience of cultural services of the commune. people living with dementia and their carers and within this report Methods: Organisation of pro-active trainings for all the personnel a particular focus has been given to hearing from people with of the commune who is in contact with older people (social services, dementia from seldom heard groups. police, neighborhood police officer, pension service) in order to understand the Alzheimer disease and train them to accompany the PO3.19. Activities in public space and being a pedestrian demented patients; goes hand in hand Establishment of a “Alzheimer cafe” as a friendly place where people Brorsson Anna, Öhman Annika, Lundberg Stefan, having dementia and their caregivers can meet every month; Nygard Louise Forge personal and professional links between the medical (general practitioners, nurses, pharmacists…), assistance (housekeeping) and Introduction: Activities in public space are important for people social actors (social services, elderly care services, cultural activities) with dementia. To walk is a common mode of transportation and in order to better respond to the needs (medical needs, dependence, includes traffic situations. There is a lack of knowledge about solitude, insecurity) encountered by older people having dementia problematic traffic situations and how people with dementia meet and their caregivers. Collaboration has been implemented between these. the different medical actors (medical doctors, nursing personnel, Objective: To identify problematic situations in crossing zebra hospital, pharmacists) and social services of the commune in order crossings from photo documentation and from the perspective to foster, if necessary, the older person to make a cognitive check- of people with dementia. The aim was also to identify how they up within the geriatric service of the commune hospital (day care understand, interpret and act in these problematic situations from hospital). The occupational therapist of this service identifies with their experiences and linked to photo documentation. the older person the main problems met at home and prioritised

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them according to the emergency in finding a solution in order other voluntary organisations have adopted a community asset for the older person to be able to stay at home. An occupational building approach, bringing together key stakeholders to enhance therapist belonging to the association “Alzheimer Belgique” and and improve awareness of dementia and build greater resilience a social worker of the commune can, on the request of the older within Motherwell’s community. Working with local businesses and person or the caregivers, visit them at home and discuss pragmatic services, a key aim is building a better environment which enables solutions based on the commune’s resources. A monthly meeting people living with dementia and their families to be full and active can be organised between the medical and social professionals in citizens within their community. order to discuss concrete problems; This presentation sets out the key stages of building a Dementia Establishment within the commune of a volunteer service to help Friendly Community in Motherwell. Firstly, the presentation people with dementia and their caregivers in their everyday life; explains how local stakeholders, including people with dementia Creation of didactic folders available in commune services, medical and carers were involved in planning. Secondly, the presentation doctors/general practitioners, pharmacist, associations, publics outlines how the partners developed a toolkit for local businesses places, including information on condition on “well ageing” , the and services and how we used a launch of the initiative to create Alzheimer disease, pragmatic recommendations when people awareness. Thirdly the presentation evaluates the effectiveness of have dementia, memory and orientation problems, the resources the initiative towards building a dementia friendly community and available within the commune for older person having cognitive the lessons that have learned. Finally the presentation considers problems (social, medical, financial resources, activities, transport, the future plans to ensure effective evaluation of the work to build volunteering); a dementia friendly community and extend the work to include all Establishment of an accompanying card for the older person having community resources such as transport, faith communities, and dementia, in the same format as the ID card, including his/her more. private address and the persons to contact (close contact, general practitioner, nurse, neighbour) in case of a problem (orientation PO3.22. Engagement in life style activities and difficulties problem, accident, hospitalisation, etc.). to use everyday technology: a study of people with Actions lead by the pharmacists of the commune aiming to take Alzheimer’s disease, MCI and controls the old persons with dementia out of their isolation. The Alzheimer Nygard Louise, Kottorp Anders patient and their caregivers often tend to isolate themselves and be isolated. The pharmacist which whom they keep a contact for the Background: While the requirement of essentially intact ability in renewal of their drug prescription can play a useful role by advising everyday activities in Mild Cognitive Impairment, MCI, has been them and transmitting information. discussed and challenged, there is still a lack of knowledge as to Results: This experience has proved that, much more then timely and how subtle activity limitations may be manifested and clinically heavy interventions, a long-term action, supported by population detected. Recently, the use of everyday technology, ET, has been and all the medical and social actors of the commune is necessary proposed as a sensitive domain for detection of activity limitations and able to facilitate keeping at home the dementia patients and to in MCI. support the caregivers. Aim and methods: The aim of this study was therefore to investigate the levels and profiles in engagement in lifestyle activities and PO3.21. Building a dementia friendly community in Mother the associations with perceived difficulty in ET-use in people with well town centre: Our story so far MCI (n=37), compared to people with Alzheimer’s disease (n=37) Crockett Arlene and controls (n=44). Based on raw data from the Frenchay Activity Index, FAI, a Rasch model was used to generate linear measures of The National Dementia Strategy for Scotland (2010) outlined key engagement in lifestyle activities. Analysis of variance, ANOVA, and priorities for improving the delivery of care, support and treatment differential item functioning, DIF, were used in the analyses. to people with dementia and their carers. A key challenge has been Results and conclusions: Significant differences in specific FAI how to deliver these improvements within the current financial items were found between groups, showing a profile of decreased context. The Scottish Government is working in partnership with engagement in certain activities already in MCI. The stronger three Community Health Partnerships to demonstrate how systems association between activity engagement and perceived difficulty can be redesigned to deliver better outcomes for more people for in ET-use in people with MCI and AD suggests that ET may play a the same resources. Each demonstrator site is working on a range crucial role in facilitating or hindering these people to retain an of initiatives towards this whole system redesign. As part of this active lifestyle over time. change programme the partners of North Lanarkshire Dementia Demonstrator site have been working towards building a dementia friendly community within Motherwell town. Partners from Health and Social Care, Alzheimer Scotland and

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P03.23. Dementia friendly initiatives: A report on national Furthermore we assessed the circumstances of the QoL-evaluation initiatives in hospital care for persons with dementia (e.g. beginning of the shift) and staff characteristics, e.g. socio- Splaine Michael demographic data, burn-out (Maslach Burn-Out Inventory, MBI), satisfaction with life (SWLS) and attitude towards people with Background: Persons with dementia and their families report that dementia (Approach to Dementia Questionnaire, ADQ). Multivariate acute care hospitals are not Alzheimer-friendly or capable, and ANCOVA-models were used to analyse confounding factors and to several cost studies also bear this out. At least 4 countries have estimate their impact on the QoL-ratings. made improving hospital care for persons with dementia a part of Results: 130 residents (81% female, on average 85 years old) were their national dementia plans. included into the study. Predominantly, the residents are with a Methods: Author has reviewed all national dementia plans, their severe level of dementia (GDS 7). More than 50% of the residents background papers and all government reports on implementation. showed at least one need-driven behaviour. 88 nurses (84% female, In addition, author has interviewed key informants from patient on average 37 years old) rated the residents’ QoL moderately. The advocacy organisations in those countries to cross check circumstances of the evaluations differ, e.g. done at home, or during government claims. the shift. Overall, we found great variations in the staff-rated QoL Results: Several practices have been implemented to improve of single residents. Explaining factors for the QUALIDEM total score screening for cognitive impairment within hospitals settings or (ANCOVA: p < 0.001; R2 = 0.165) and ADRQL total score (ANCOVA: p < improving the actual hospital stay and quality data is just coming 0.001; R2 = 0.244) are among others burn-out (MBI) and the nurses’ on line. satisfaction with life (SWLS). Further results will be presented at the Learning Objectives: participants in this session will be able to conference. identify policy changes made to improve hospital care, compare and Conclusion: The results give an understanding, how nursing staffs contrast between the countries, and take away practical steps they perceive residents’ QoL. This is a precondition to obtain more valid might take in their countries dementia plans. proxy-ratings of QoL for people with dementia and finally also a basis to provide tailored care. 11.30-12.00 (Perellos): Parallel Session P16. Residential care P16.2. Gardens: living spaces for the well being of people with dementia and their relatives P16.1. Proxy-rated quality of life in residential dementia care Villez Marion, Guisset-Martinez Marie-Jo – Identification of influencing factors Gräske Johannes, Meyer Saskia, Wolf-Ostermann Karin Since 2003, there has been a growing interest for outdoor spaces in care settings for people with dementia. They became a key issue Objectives: Dementia is a major reason, for relocation into in public policies and for the staff. In this context, the Fondation residential care facilities. Because of a lack of curable treatment, Médéric Alzheimer decided to conduct a study on gardens in day it is considered that quality of life (QoL) is a major outcome in care centers, nursing homes and geriatric hospitals. dementia care. However, a “Gold Standard” for measuring QoL in This qualitative study includes 21 projects, in France and abroad, dementia care is lacking, yet. A broad consensus is, that self-ratings and is based on field investigations through direct observations, are the most appropriate way to evaluate QoL. In various studies interviews of people with dementia, families and staff members. In confounding factors of a valid self-rating were identified. However, addition, our work has been enriched by the learnings of a national in later stages of dementia, proxy-ratings, e.g. by nurses, are the seminar of professionals to confront and share their practices. This way of choice. This method is less critical discussed. Influencing research is not about defining an exclusive type of garden, or setting factors on proxy-ratings, like caregivers´ QoL or burn-out, are hardly up guidelines and standards. Rather, it enhances knowledge about investigated. the wealth and variety of gardens observed from the experience of The aim of the present study is to identify resident-related and project leaders who have made outdoor spaces more attractive and nurses-related characteristics influencing a nurses-rated QoL of lively. people with dementia in long-term care facilities. The analysis of the diversity of practices and outcomes of the Methods: A cross-sectional study was conducted in five nursing gardens, in terms of well-being, social life and quality of life homes with altogether ten special care units for people with constitutes the key issue of this work. To describe the various dementia using written standardised questionnaires. Nurses were initiatives, we built a typology of nine garden categories according asked to rate each residents’ QoL using the QUALIDEM and the to their main distinctive features. We also studied the motivations ADRQL. In addition to socio-demographic characteristics of the of the staff to be committed in a garden project and the processes residents, we examined the functional status (Barthel Index, BI), of designing and setting up such a place. need-driven behaviour (Cohen-Mansfield Agitation Inventory, The free access to nature and to a sensory experience (fresh air, CMAI) and severity of dementia (Global Deterioration Scale, GDS). water, trees, plants, animals, etc.), the pleasure of gardening are

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some of the treasures provided by gardens. Such gardens can also observation. become spaces that everyone can take over in his own way. It is Methodology: 54 residents with dementia, living in a French nursing also an appropriate support to empower people with dementia, to home and volunteered to participate were drawn lots, matched by strengthen social and family bonds, and to connect the inside and age, gender, socio-cultural level and severity of disease in 9 groups outside of the setting. of 6 residents. Each group is invited to a meeting of 30 minutes To make all this possible, some conditions have to be fulfilled: taking and their behaviours are filmed. We constructed an ethogram of into account the wishes of the people with dementia, promoting observation to evaluate auto and hetero centred behaviours like commitment of the whole team (manager and staff), sharing a facial expressions, look or verbal interactions for example. All the common vision of dementia care, and dedicating some financial data were analysed by two raters to have a satisfactory agreement resources. score of video coding. Analysis of the results is in progress. The auto-centred behaviours and social interactions observed will P16.3. Multimodal non-drug therapy on dementia symptoms be presented in descriptive ways and in terms of frequency of in nursing home residents with degenerative demen- occurrence. tia in Thailand The perspectives of this study are: 1. To give information about social Chankrachang Siwaporn, Singhanetr Sasiwimol interactions of people with dementia living in nursing home when they are put together. 2. To propose an observational tool to analyse Objectives: To determine the effect of multimodal, non-drug social interactions of people with dementia. 3. To have some tracks therapy on depressive symptoms in Nursing Home residents with of practical applications to improve social interactions between degenerative dementia. people with dementia living in nursing homes. Design: Observational study in one nursing home in Chiang Mai province. P16.5. Data collection and processing in care of persons with Participants: Nursing home residents with primary degenerative dementia dementia (Mini-Mental State Examination score < 24). Holmerová Iva, Mátlová Martina, Hýblová Pavla, Janečková Intervention: The intervention comprised three components: motor Hana, Vaňková Hana, Wija Petr stimulation, activities of daily living, and sensory stimulation. Measurements: Overall geriatric symptoms were recorded using The long-term care is one of the main problems of public health and the Nurses’ Observation Scale for Geriatric Patients, ADL functional health policy in Europe. International documents define long-term independence using the Barthel Index, and caregiver evaluation. care (LTC) as spectrum of services provided to persons with long- Results: 38 were included in the intention-to-treat analysis At term limited self-sufficiency who are dependent on the assistance early at 1 week, results of the per-protocol analysis (n = 37) showed of others and their ability to perform basal and instrumental improvement of the caregiver happiness index. The total care time activities of daily living is limited (over the extended period of per case is also reduced. time). This situation may occur in any age, however there are mainly Conclusion: As early as 1 week the multimodal intervention improved persons of older age, who suffer more frequently from degenerative behavioural symptoms in nursing home residents, especially in and neurodegenerative diseases, mainly dementia. The quality of social behaviour and IADL capabilities. care for persons with dementia provided by some institutions is insufficient. This situation is known also in the Czech Republic as P16.4. Social interaction and dementia: how people with the term „long-term care hospital“ (LDN in the Czech abbreviation) dementia behave when they are put in social situa- has become generally synonym of bad quality of care or bad quality tions? An observational study of life of persons who live there The situation of LTC provision is Mabire Jean-Bernard, Garitte Catherine, Vernooij-Dassen complicated by the fact that it is not sufficiently defined, nor in Myrra, Octave-Rolland Coralie, Gay Marie-Claire the legislation, LTC services are provided in the health care system by different institutions (LTC hospitals, departments of aftercare, Effective communication processing is central for the development psychogeriatric departments, continuing stays in health instiutions and maintenance of social interactions. In dementia, social because of social reasons etc.) and also by different social care interactions are less obvious because of the nature of the institutions (so called nursing departments in homes for seniors, disease, which involves difficulties in words finding and in verbal homes with specific regime etc.). As we have mentioned above the comprehension. We have little information about the nature of legislation is not clear, has many gaps with severe impact in practice social interactions of people with dementia, especially in nursing and does not provide clear guidance for the LTC. There are many home. This is surprising, since they constantly meet each other in organisational problems and system failures LTC care provision. such structures. How do they communicate to each other? Official control and supervision systems do not address needs of The main objective of this study is to investigate social interactions persons with dementia in the institutional care. between people with dementia who first meet, using direct Czech Alzheimer Society developed the quality criteria for care of

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persons with dementia and system of quality certification „Vazka“ 11.30-12.00 (Wignacourt): Parallel Session (according to the logo of the society). This system which includes P17. Preventing behavioural problems and criteria of care, environment and staff and method of its evaluation hospitalisation will be presented in the lecture. This research project is supported by the grant NT11325 of the P17.1. Fire and rescue service and Age UK collaborate to keep Ministry of Health of the Czech Republic. people with dementia safe, well and independent Morris Evan, Clemens Ken P16.6. Integrated sensor-based monitoring for people with dementia in a nursing home to promote a person- Cheshire and Rescue Service and Age UK Cheshire have worked centered care together for a number of years to help older people stay safe from Basel Kikhia, Karlsson Eva fire in the home and to access the advice and support they need to live independent and fulfilling lives. The increase in average lifespan across the world has been This unique partnership, known as Springboard, targets at-risk accompanied by an unprecedented upsurge in the occurrence of individuals through UK national health service (NHS) information dementia with high socio-economic costs. This abstract presents a supplied under a groundbreaking data-sharing agreement. comprehensive personal health system for use in nursing homes as In what is thought to be a national first, Springboard has recently well as in private homes. The system, called Dem@Care, monitors employed a specialist dementia adviser. The post is half-funded daily activities and behaviours by evaluating a combination of by the fire and rescue service and half by the NHS, commissioning clinical parameters related to people with dementia. The system through Age UK Cheshire. The collaboration recognises that there assesses the current condition of the person with dementia and are now more than 4,200 people living with dementia in western then determines abnormalities in the daily life patterns, which can Cheshire, but also that more than half of all fire deaths and injury be used to alert the responsible nursing home staff. Caregivers and in the home nationally are among people aged 60 and over. Recent clinicians can thus maintain a comprehensive view of the health research has also shown that impairment, disability and dementia status and the progression of the cognitive decline, which in turn are a substantial factor in increasing someone’s risk of injury or enable a personalization of care interventions. The aim of the study death from fire in the home. in the Nursing Home is to evaluate the usability and effectiveness Since her appointment in June 2012, the adviser has supported of such a service to support a person centered care of people with 140 individuals. Experience gained from UK Department of Health dementia in Nursing Homes. trials show that those living with dementia require practical and Five significant clinical phenomena have been explored in depth in emotional support to enable them to live well and safely in their terms of what technology can offer to better understand the person own homes and avoid hospital admission. As such, she signposts with dementia: Sleep, Exercise, Eating, Social Interaction and Mood. to a diverse range of services that maintain independence - such A person with dementia may face challenges in one or more of these as those advising on employment, access to benefits, support areas, which suggests that a personalised approach to addressing networks, home environment, falls prevention, assistive technology these problems is much preferable. Innovative bracelets for mood and community equipment. detection together with sleep and monitoring sensors placed in the Evaluation is ongoing, but we have had powerful feedback direct person’s room will be used to observe the behaviour of the person. from carers about the significant difference the adviser is making The usability, acceptability and functionality of the sensorised to their lives. Early discussions are also underway about appointing system will be evaluated through a qualitative approach, which is a second adviser in eastern Cheshire, as agencies begin to recognise continued through the phases of the evaluation. In this process the the potential savings that can be gained from avoiding admission to experience of the users will be documented in a systematic way and hospital or residential care. regularly be fed back to the technical partners in order to further develop the Dem@Care prototypes. P17.2. A management plan for people with dementia: an The validation and assessment of the Dem@Care technology will experience of a special care unit be done through a three-staged evaluation process to ensure the Bonora Annalisa, Bevilacqua Petra, Turci Marina, saliency and effectiveness of the system being developed. The first Fabbo Andrea evaluation in the Nursing Home will start in June 2013, and the authors will have preliminary results to present at the Alzheimer The main problem in dementia illness that caregivers have to afford Europe Conference. usually concerns the management of behavioural problems. The Acknowledgment: This work is part of the European Dem@Care Mirandola dementia care unit provides temporary admissions to integrated project, funded by the European Union, Seventh Framework dementia patients to study problems and find proper solutions Programme (FP7/2007-2013 grant agreement number 288199). The especially working with non pharmacological strategies like gentle content of this abstract reflects only the views of the authors. care, occupational therapy and multisensory stimulation. The

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analysis of benefits was based on a multidimensional evaluation P17.4. Preventing aggressive behaviour and BPSD – a of patients obtained by comparing the data at the entrance, multicomponent method and organisational model at discharge and at periodic follow-ups (6, 12, and 18 months Andersen Knud D. after discharge). Among other data we measured the NPI scores (Neuropsychiatric Inventory) and the consumption of sedative Background: As a part of the Danish National Dementia Plan, the drugs. Patients had moderate-severe dementia diagnosis and project has developed a multicomponent method that will help care behaviour disorders for an NPI score higher than 24 at the entrance. homes leaders and employees, to better analyse and meet the needs The study was developed on 63 cases71% of the people hospitalised of persons with dementia, who might develop aggressive behaviour. in the NA was discharged with a domiciliary project. The comparison Objective: To develop and test a new method and an organisational made between the average NPI scores obtained at the entrance model for good care and support for persons with dementia and (44.66) shows a significant reduction in behavioural disorders at challenging behavior. Furthermore, it identifies how leaders and discharge (30.45, p <0.05) which was maintained at a distance of experts in the care homes are to work together, both inside and 6 (28.81; t = 3.663, p <0.05) and 12 months (21.29, t = 2.743, p <0.05). outside the carehome: with psychiatrists, general practitioners, and These outcomes suggest that it is possible to plan a home care for other specialists, and with the staff. In order to deliver focus on the dementia patients in their average and late stage with behavioural person, and finding ways to give the right care, in order to minimise disorders. This is promoted in the dementia care unit by the the aggressive behaviour. Thereby the specialised knowledge is taken prevention of situations that can generate agitation and aggression in consideration and the organisational structure, that constitutes a in these people. These benefits seem to last even after a period of 12 well equipped care environment, is thoroughly outlined. months after discharge. Design: The method describes both the roles, responsibilities and tasks of leaders, experts in care homes, and of front personnel. It P17.3. The UK Memory Services National Accreditation enables them to better deal with challenging behaviour. It defines Programme (MSNAP) key aspects, where staff will need special skills and knowledge, in Orrell Martin order to obtain the right competences. It also describes a model with specific procedures that must be followed, so leaders and Background: The lack of a consistent model means that the quality caregivers can deliver the best care for persons with dementia. and characteristics of memory services can vary greatly. A nationally The goal throughout is to ensure implementation and foundation of agreed set of quality standards would help improve UK memory the method and organisation as a natural part of the care. services. The target group: Behavioural issues are mainly seen as a symptom Objectives: To develop and implement standards for memory of insufficient or unhelpful factors in the surrounding care services as part of a national quality improvement programme. environment, and as a way for the person to communicate their Method: The development of the standards involved a literature needs. On the other hand, the model is very focused on making review/content analysis; key stakeholder workshop; stakeholder leaders and caregivers better suited for this very complex job that is consultations; consensus meeting; and a final consultation process in many respects different from “normal” dementia care. obtaining endorsements from key organisations. Thirteen memory This makes the care homes better equipped to deliver the best services participated in the pilot programme using draft set of possible care, to persons with severe dementia (often of the quality standards through the processes of self- and peer review. frontotemporal variants). The project uses both qualitative and Results: The MSNAP standards consisted of 148 quality standards quantitative methods to monitor the impact of the project on covering: management; resources for assessment and diagnosis; behaviour in care homes, and in the way the personnel thrives. processes of assessment and diagnosis; and ongoing care The activities: The project followed nine care homes in three different management and follow up. The pilot stage highlighted common municipalities in Denmark. In all three, leaders, care managers and areas where improvements had been made, such as finding out dementia experts and coordinators are involved in the project. Up to whether the patient wished to know their diagnosis, and areas 50 staffers are given at least 8 days of courses, in order to upgrade where attention was still required, for example surveying referrers, their skills. patients and carers about their experiences of the service. Conclusion: It was possible to develop and field test nationally P17.5. Caregiver needs analysis for product development of agreed quality standards for memory services. Seventy UK services an assistive technology system in dementia care have now joined MSNAP and this will improve the quality of UK Megges Herlind, Jankowski Natalie, Peters Oliver memory services. MSNAP has recently been endorsed by the UK Prime Minister as part of his Challenge on Dementia. Background: Our research focuses on suitable methods for the product development of an assistive technology system in dementia caregiving. It is a challenge to manage the interdisciplinary work, as many professions, such as designers, informatics, gerontologists

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and psychologists are part of the development process of such a Improvement Group’s Specialised Register and additional sources product. Furthermore, to successfully develop the technical devices for both published and unpublished data. Randomised controlled that provide a real relief for caregivers and people with dementia, it trials in people with dementia or MCI comparing a psychological is inevitable to include the users in the development process. intervention with a control or comparison group receiving no Aims: The main focus in our studies was to figure out the wishes specific psychological intervention were included. Two review and needs of caregivers regarding an assistive technology system. authors (AQ, VO) worked independently to select trials, extracting The issue of how the functional needs of caregivers correlate with data and assessing studies for risk of bias using a data extraction different stress-factors and resources was investigated. Later on form. We contacted authors when further information was not we evaluated a prototype version with experts. In this study we available from the published articles. focussed on usability and technological reliability. Results: Four randomised controlled trials involving 374 participants Methods: We refer to usability-research-methods to serve the user- met the inclusion criteria. The studies evaluated counselling, designer interface adequately. To evaluate the different prototype psychodynamic approaches, or multimodal interventions versions we used a mixed-methods design. Descriptive statistics, combining exercise, CBT and support groups. The meta-analysis of inter-correlation analyses and regression analyses were performed. the data favoured psychological treatments but the difference was For qualitative examination a content analysis was accomplished. not statistically significant, and the overall improvement was small. Results: Regression analysis of the user test with the caregivers Only one study measured outcomes for anxiety. No adverse events (N=20) revealed that especially older caregivers (ß=-.69,*p<.05) who were either reported or identified. The two studies using counselling felt unhealthy (ß=-.46,*p<.05) are less interested in community approaches found a reduction in depression in people with and information features (R²=.50, p=.006). Younger caregivers dementia. The 2 studies that used psychodynamic or multimodal who are not living together with the care recipient, can benefit CBT approach found no differences between treatment and usual of community and organisation features. Regression models for care in depression outcomes. Most of the trials included people security functions and the overall evaluation of the system were not in mild stages of the disease, although one of the trials included significant. Features concerning security, such as locating and fall- people with severe dementia. detection assistance do have a high potential and are essential for Discussion: There were some suggestions that psychological all caregivers regardless of other factors. The results of the expert- interventions could improve mood but overall there was no clinical based evaluation (N=17) demonstrated the high relevance of usability benefit relative to the control group. Limitations include the great factors. Prevalently the appraisals emphasized the need to reduce variability in the nature of the psychological interventions used, the the spectrum of features for potential users and to significantly small sample sizes and differing methodologies. Further randomised improve the design and the technical functioning. controlled trials are needed to evaluate the effectiveness of Conclusion: For the further development of the system the results psychological interventions in reducing anxiety and depression in of our research provide important implications which can also be people with dementia and mild cognitive impairment. used by related science departments. It is the most relevant task to implement security features. Furthermore it is required to develop 11.30-12.00 (Vilhena): Parallel Session modularized and individual assistive technology solutions to P18. Legal and ethical issues address the diverse needs of caregivers. P18.1. A person with dementia and restriction of freedom P17.6. Cochrane Review: Psychological treatments for Mäki-Petäjä-Leinonen Anna depression and anxiety in dementia and mild cognitive impairment Opinions about what constitutes a restriction of liberty depend Qazi Afifa, Orgeta Vasiliki, Spector Aimee, Orrell Martin on definitions. Broad, everyday definitions of the restriction of freedom might emphasise the prevention of a person from doing Background: Anxiety and depressive symptoms are very common s/he appears to want to do. There are also legal definitions which in people with dementia or mild cognitive impairment and may change over time as attitudes towards restrictions of liberty reduce quality of life. However antidepressants have only limited and practices change. Legislative changes often take time and in effectiveness and there have been few psychological treatment the period leading up to the change, people may lack adequate studies try and improve mood. The studies included individual protection. or group interventions and most are based on established For example in Finland Section 6 of the Constitution states psychological models such as cognitive behavioural therapy. that everyone has the right to life and personal liberty, physical Aim: The aim of this systematic review was to examine the evidence integrity and security of person and that no-one should be tortured of effectiveness for psychological treatments in reducing anxiety or otherwise treated in a degrading manner. Furthermore it is and depression for people with dementia or MCI. stated that there shall be no interference in personal integrity or Design: We searched the Cochrane Dementia and Cognitive deprivation liberty without legitimate grounds prescribed by an Act

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of Parliament. studies of successful prosecutions was seen as powerful. For this reason in 2010, the Ministry of Social Affairs and Health This presentation will present findings from qualitative interviews in established a working group whose aim is to assemble the provisions Part 1; examples of case scenarios of prosecutions under Section 44; relating to the deprivation of liberty and self-determination of all and the way in which the Education Prescription to prevent crime patients/clients of social and welfare within the same act if possible. from taking place in institutional settings is being designed and The reform of the legislation specially addresses the deprivation of developed. liberty in the care of people with mental disabilities and dementia. It´s goal is also to strengthen the multidisciplinary co-operation P18.3. The therapeutic use of doll therapy for people with and availability and development of services in such a way as to dementia: ethical considerations lessen the need to limit liberty and self-determination. Mitchell Gary; Templeton Michelle The draft of the new legislation will be published before the summer of 2013 and term of office of the working group ends on 31.12.2013. In light of the increasing population experiencing dementia it is This presentation concentrates the ongoing legislation process in not surprising that researchers and practitioners are increasingly Finland and how the new legislation may affect to the legal position interested in therapeutic ways to improve the quality of lives of of a person with dementia. people with dementia. The therapeutic use of doll therapy for people with dementia is one method that has been growing in P18.2. Preventing crime and safeguarding people with recent years. Providing a doll to someone with dementia has been dementia associated with a number of benefits which includes a reduction Manthorpe Jill, Samsi Kritika in episodes of distress, an increase in general well-being, improved dietary intake and higher levels of engagement with other people. Elder abuse is “a single or repeated act, or lack of appropriate action, The theoretical base for how doll therapy can be positive is occurring in any relationship where there is an expectation of understood through the work of John Bowlby’s work on ‘attachment trust, which causes harm or distress to an older person” (definition theory’ (Bowlby, 1969). It is important to highlight that this adopted by World Health Organisation). conceptual work was originally focused on child attachment and The Mental Capacity Act 2005 was implemented in England and has limited reference to older people with dementia (Mitchell and Wales in 2007. Among other things, it defines and makes punishable O’Donnell, 2013). With consideration to Tom Kitwood (1997), whose (in Section 44) 2 new offences of “ill-treatment” and “wilful neglect” work on person-centered care remains pertinent, Kitwood (1997) when occurring in a relationship of care with a person lacking mental warned that behaviour that infantilized was detrimental to people capacity. There have been a small number of but well-publicised with dementia. However advocates of doll therapy could point to criminal prosecutions under the Act. Kitwood’s (1997) assertion that, ‘if a need is not met, a person [with Our study was conducted in 2 parts. Part 1 used qualitative dementia] is likely to decline and retreat. When the need is met, a interviews with a range of dementia care practitioners to ascertain person may be able to expand again’. There are a number of authors their level of awareness and understanding of the offences; and the who believe the practice of doll therapy is demeaning to people with impact (if any) of these on their practice. Part 2 involved a nominal dementia (Boas, 1998; Cayton, 2001 and Salari, 2002). consensus group discussion that aimed at developing an Education The therapeutic use of dolls is a hugely contentious issue. It can be Prescription that could enhance awareness and contribute towards argued that it fulfills the concepts of beneficence (as it facilitates training in this area. the promotion of well-being) and respect for autonomy (as the Findings from Part 1 indicated that most dementia care practitioners person with dementia can exercise their right to engage with dolls had limited awareness and possessed common-sense rather than if they wish). However it can also be argued that doll therapy is specific understanding of the offences. Many practitioners were unethical when consideration is given to dignity (in that people with unclear about thresholds for action and uncertain about the best dementia are encouraged to interact with dolls), truthfulness (as the ways to collect evidence. The nominal consensus group in Part 2 carer/health professional is treating the doll like a real-life baby) and of the study included stakeholders, ranging from lay participants, non-maleficence (considering the potential distress this therapy social worker, General Practitioner, to a Police Officer in charge of could cause for family members). safeguarding. The general agreement was the need for an Educational There is some evidence to suggest that the therapeutic use of doll Tool that could highlight the severity of the crimes being committed therapy in dementia care can be of benefit to some people with and that they were punishable by law under the Act. The group dementia. However in the absence of rigorous empirical evidence or felt that clarifying the pathway to alerts was important; and good, legislative guidelines, it is a therapy that must be approached with a strong relationships between safeguarding practitioners and the degree of caution owing to the potential different interpretations of Police was required for allegations to be taken seriously. The need Kitwood’s ‘malignant social psychology’ and bioethics. for the Education Prescription to be context-specific and developed differently for different settings was highlighted. The use of case

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P18.4. Improving advance care planning in patients with other hand, it can be considered obtrusive and a risk to persons’ dementia in a nursing home: defining facilitating autonomy. factors and barriers The aim of this project, ‘Moving on from the Home Door’, was to Wils Maartje, Verbakel Jan, Lisaerde Jo combine research findings into a service involving individualised exercise programmes and tracking technology to support Background: Advance care planning (ACP) consists of an individual independent mobility of people with dementia. Decision to use approach to anticipate the decisions on treatment during the course technology was made commonly with persons with dementia of illness and at the end of life. In residents with dementia in a and their families. Participants were 30 persons in early stages of nursing home there is a pressing need for ACP. Timely discussion of dementia, in three intervention groups. The Vega bracelet, a tracking the goals of treatment increases the resident’s autonomy and the device with an emergency button was used as a technological tool. quality of life and care. Research questions and methods: During the research process, Objectives: The aim of the study is to assess the effect of training on ethnographic observation and interview data were collected on the registration of care goals in a nursing home with a population participants’ and their families’ experiences and environment. of elderly residents suffering from dementia. Another objective is A number of ethical controversies became evident during data to explore the views of nursing home staff on ACP in patients with collection and analysis. dementia. This paper discusses the following question: What ethical issues Methods: This quantitative study consisted of a pre- and post and controversies must be addressed when integrating tracking intervention evaluation. The setting was a nursing home in Leuven, technology into daily lives of people with dementia? Belgium, providing care for residents diagnosed with dementia Results: The use of tracking technology affected participants’ with a population of 124 residents. The intervention consisted of autonomy positively by increasing their independent mobility in a 12-month program for nursing staff (n=13) including training the close environment. The device helped them to maintain social in theoretical and communication skills. This group was asked to relationships with neighbours and friends and even resulted in new complete a structured 10-itemquestionnaire (type Likert) at 0 and 12 acquaintances on exercise tracks. Especially persons in a very early months between January 2011 and January 2012 exploring their views stage of dementia, who could keep in mind the reason for using the on factors that facilitate or obstruct the implementation of ACP. device without continual guidance, enjoyed an increased feeling of At the same time a pre- and post measurement of all ACP-related safety. Both the participants and their families found it relieving registrations in the electronic medical record took place. that there was a way to instantly locate a missing person. Results: At 12 months we noticed no significant increase in the The device was found obtrusive from the perspective of autonomy in number of appointed representatives or written wills, specifying situations where participants had to wear the bracelet continuously. the desired care goals. There was however a significant increase in The use of the device became a daily object of discussion and the number of interviews regarding ACP held with the resident, and arguments between participants and their family members. also a significant increase in the number of care goals documented. Problems were especially common for those people with dementia, We identified several facilitating factors and barriers for the ACP who were not aware of their illness or who denied their condition or process. Furthermore we saw significant changes in caregiver’s the need for the device. Family members balanced between safety views on ACP at the end of the intervention period. and persons’ right of self-determination. Exaggerated concern for Conclusions: Prior to the intervention the members of the nursing safety limited participants’ opportunities to move around, whereas staff presented some resistance towards the implementation of with help of the device it was possible to increase the designated ACP, but supported the ACP process afterwards. ACP was said to help safe area. raise the dignity and autonomy of the residents, and was especially Participation of people with dementia was diminished in situations useful in improving clarity for medical decision making. The number where they felt that the use of the device labelled them as dependent of successfully recorded information on ACP increased significantly. and incapacitated. They experiences uninformed remarks from Special attention should be given to the barriers that obstruct the outsiders as negative, possibly also feeling that their self-concept implementation of ACP in the nursing home setting. was threatened. This may be associated with the fact that the stigma of dementia still prevails in society. P18.5. Moving on from the Home Door – Ethical aspects of Conclusions: We need to take a wider ethical perspective, paying using tracking technology attention to both negative and positive factors in the use of tracking Riikonen Merja, Palomäki Sirkka-Liisa technology. On one hand, a tracking device promoted autonomy, participation and safety of people with dementia. On the other Background: The basic aim of ethically acceptable technology is hand, the obtrusive nature of the device was found to restrict their to increase the safety of people with dementia, without limiting autonomy and participation. their actions and right of self-determination. At its best, tracking technology can protect privacy and support human contacts. On the

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P18.6. After diagnosis support in Portugal – Important issues lives. on advance directives The establishment of the Working Group comes at a crucial time as Zincke dos Reis Maria do Rosário Ireland prepares to develop a National Dementia Strategy. It will be critical that the voice of people with dementia is heard through the Alzheimer Europe and its member organisations constantly National Dementia Strategy and in the planning of service provision campaign on the importance of early or timely diagnosis. The for the future. expression “timely diagnosis” is preferred as it brings into focus The establishment of the Working Group is the result of many years a very important question: “Timely for what?” Most of us will of work to enable the voice of the person living with dementia and concur that this relates to the time in finding ways of delaying the their carer throughout our organisation. The work has included a symptoms, the time to think and prepare for present and future major public awareness and anti-stigma campaign which promoted decision taking, the time to seek help and decide on who shall take the early signs and symptoms of dementia in order to encourage decisions on behalf of individuals with dementia and the time to people to seek an early diagnosis. let family members know of prior intentions when future decisions This presentation will outline the learning that we have had from concerning health or end-of-life issues arise. setting up the Working Group to putting the plans in place and the As from August 2012, it became possible in Portugal to make a outcomes from the meetings that have been held thus far. This binding advance directive either in the form of a living will or in a presentation will be of interest to those who wish to establish a more form of a healthcare proxy. These advance directives may include: empowered voice for people with dementia in their organisation artificial support for vital functions, futile not-useful treatments, and also those that want to hear more about how other countries adequate palliative care and permission or refusal to participate in promote the direct involvement of people with dementia. research or clinical trials. Advance directives must be discussed in the framework of the P19.2. Innovation in Programming: Why is art so important fundamental rights and, as an important tool of preserving self- for those with dementia? determination. Health, social and legal professionals must be Burns Michelle prepared to inform the public and allow sufficient time to discuss with them the advantages and disadvantages of making advance The World Health Organisation projects the number of individuals decisions. diagnosed with dementia to triple by the year 2050. Without a Advance directives give rise to a number of ethical and legal issues medical cure on the horizon, we face growing pressure to address of which health care professionals in Portugal are not sufficiently quality of life issues for those diagnosed. Recent studies indicate aware of. A significant number are of the opinion that these are not that engaging in an enriching environment can offer the beneficial important as doctors rely mostly on the will of the patients and impact of impeding the progression of Alzheimer’s disease. what may be included in a living will does not necessarily contribute I have developed and implemented a program using an innovative to proper palliative care. Thus it is imperative that public discussions art process that provides opportunities for those with dementia to on advance directives are promoted in the best possible way. reach beyond their comfort zone and experience novel activities. The aim of this presentation is to give a general overview of advance Modified steps allow the artists to keep their minds engaged and directives in Portugal and will discuss issues relating to the limits, explore creativity without focusing on perceived inabilities. This duration, areas of conflict between living wills and healthcare proxy, approach gently challenges the artist in a way that is unique and the importance and significance of recent wills, amongst others. enlightening. Sophisticated and aesthetically pleasing outcomes are the keystone 11.30-12.00 (Verdala): Parallel Session of this program. This ensures that participants are respected as P19. Involving people with dementia mature adults. The final product then becomes an important vehicle to draw others into the art. These pieces enable families and others P19.1. Learning Together – The Alzheimer Society of Ireland in the community to celebrate the person that is and their journey, experience of establishing the first Irish Working instead of focusing on what is lost. Group of People with Dementia In this presentation, I will share examples to define “sophisticated Easton Avril, Crean Margaret art” and discuss how this process compares to art therapy. Participants will learn how using simple tools to integrate this This presentation will outline the Alzheimer Society of Ireland innovative art process offers an experience that promotes activity experience of establishing the first Irish Working Group of People and mindful engagement. I will share valuable experience I have with Dementia. The purpose of the Working Group is to explore gained on how to best achieve this process, specifically: ways to promote and encourage the direct involvement of people -- the importance of facilitator training, with dementia in our work and to ensure that the voice of people -- the significance of variation of mediums, and with dementia influences the public policy that impacts on their -- the need to create an “art studio” atmosphere to foster

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independence, engagement, peer involvement and self esteem. with dementia and their caregivers. Examples were Alzheimer Dance This innovative program strives to create a stimulating and enriching Cafés, common activities of children and old people, mixed activities environment in the magical realm of art while improving the quality for everybody and special proposals for people with dementia and/ of life for those with Alzheimer’s disease. or caregivers. A second project started in September 2012. Main aims are to P19.3. Don’t try and take over! Everyday decision making for increase the number of groups for people with early dementia people with dementia and their family carers. and to improve communication between them. These groups Tarzia Laura, Fetherstonhaugh Deirdre, Nay Rhonda may participate in the activities of Alzheimer Association and support their public relations activities with (political) statements, Being able to make choices and decisions is considered an integral presentations on conferences etc. Additionally information material component of autonomy and personhood in Western societies. will be developed in easier languages that are better understandable For people living with a diagnosis of dementia, however, it can be for people with dementia. difficult to remain involved in decision making. Not only do they have to contend with the effects of the disease on their cognitive P19.5. Tales from the sea: engaging people with dementia in abilities, but their participation in decision making can be curtailed maritime archaeology or ignored by health professionals, family members, or paid carers. Cutler Clare, Palma Paola While these ‘others’ may be well meaning they often presume that they know what is in the person with dementia’s ‘best interests’ Maritime archaeology is a vital part of the UK’s national heritage without asking them directly, or assume that the person with that people with dementia are often excluded from accessing. dementia is incapable of making rational choices. Contrary to this, The Tales of the Sea project has delivered a series of interactive, research has consistently demonstrated that even when a person educational and stimulating maritime archaeological sessions for with dementia may not be able to make high-stakes financial people with dementia, which aimed to provide an opportunity for or medical decisions, they can, and do continue to make choices access and learning around the history, discovery and recovery of about many aspects of their everyday lives if provided with the right the UK’s maritime archaeological heritage. encouragement and support. The sessions have mimicked processes which are followed by field At present, a gap exists in the knowledge base with regards to archaeologists and have included activities such as: understanding the importance of everyday decision-making for -- Interacting with archaeological artefacts (for example pottery and people with a diagnosis of dementia. We have little insight into wood) what decision-making means for them and little understanding -- Conducting a maritime archaeological excavation of the lived experience of how a dementia diagnosis can impact -- Processing of artefacts (collecting and ordering artefacts found on how, and if, they participate in decision-making. Furthermore, from the excavation) the informal ways in which family carers can support and facilitate -- Reconstructing artefacts (putting excavated artefacts back to decision making for people with dementia is poorly understood. their original state). This paper will report on the findings of a qualitative study that used This presentation will report on a pilot study that has evaluated the hermeneutic phenomenology to explore the meaning of everyday above initiative and discusses how to engage people with dementia decision making for people living with dementia and their family with non-conventional topics such as maritime archaeology. This carers. Data from semi-structured interviews with people with will provide inspiration to others to try ‘new’ activities that are dementia living in the community and their family carers will be stimulating and educational for people with dementia. This novel presented, highlighting the importance of remaining central to intervention is an innovative demonstration of ways in which decision making, and the key role that subtle support from carers people with dementia can be stimulated and engaged in culture and can play in enabling this. history in a way that is meaningful to their locality.

P19.4. More participation for people with dementia P19.6. The biomedical concept of disease of Alzheimer’s Jansen Sabine disease generates from a patient perspective a cleft between diagnosis and the life with dementia During the last years the German Alzheimer Association has run Kristensen Fritze some projects to support participation and inclusion of people with dementia. Introduction: Globally, there is a focus on the importance of The first project cooperated with community houses diagnosing dementia syndrome. The applied diagnostic criteria for (“Mehrgenerationenhäuser”) that offer different activities for all Alzheimer’s disease (AD) reflect a biomedical concept of disease. generations. Deutsche Alzheimer Gesellschaft has supported those The biomedical viewpoint is strengthened with the inclusion of houses to start new activities which improve the inclusion of people biomarkers in the proposed revision of the diagnostic criteria.

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Existing humanistic research has identified limitations in the the Elderly and Community Care launched the National Dementia biomedical approach. This study is a continuation of this research Strategy Group with the aim of devising a series of recommendations by incorporating the concept of disease. that would provide a strategic framework in order to deliver quality Purpose: To explore if the diagnosis of AD in early stage has a form improvements in local dementia services and address any shortfalls and a specificity allowing the affected person to make optimal use in dementia care. Although these recommendations were presented of the diagnosis in his or her conduct of life? in January of 2010, a national dementia plan has not yet been Theoretical framework and methods: A humanistic dialectic published to date even though a number of positive initiatives were perspective was applied to focus on the relationship between adopted including the addition of dementia on Schedule V of the impairments of neurological functions and the experience of reformed Social Security Act of 2012 and a number of publications living with AD. A philosophical person-oriented, relational concept with the objective of raising awareness on dementia. of disease was used including two standpoints: 1) a biomedical This session will present the various issues that need to be addressed perspective, and 2) the person with AD – his or her experiences in in the local dementia plan in view of the recent appointment of the conduct of life. Critical psychology has been used to create a National Focus Point on Dementia with the aim of advising the knowledge of the patient perspective. authorities on measurements that need to be adopted in making Design - qualitative longitudinal study: Semi-structured interviews dementia a national priority. The audience will openly discuss and and observations were used. Five persons diagnosed in a department give their views on various issues relating to increase in awareness, of neurology with early stage AD and one of their relatives were workforce development, enhanced training for informal carers and included. The medical perspective was examined by analysis of the provision of services required at community level. medical records. Results: From the perspective of the person with AD – the 13.00-14.00 (Perellos): Special Symposium SS3 diagnosing based on a biomedical understanding of disease implied: 1) Clarification: a diagnosis. 2) Abstract knowledge about: SS3. The evolving role of patients advocacy groups in Test results, what is AD and how does it progress as well as what the clinical trials education stabilizing effect of medication implies. 3) No recognition of well- Scheltens Philip, Geipel Gary preserved abilities to act. Resulting in assuming a conduct of life re-established by the person with AD and the relative not supported This interactive symposium will explore the evolving role of patients by the diagnosis. advocacy groups in clinical trials education. Gary Geipel, Senior Conclusion: The diagnostic examination could in addition to the Director for Oncology Corporate Affairs at Eli Lilly & Co will present concept of disease be based on an interdisciplinary collaboration the key findings of a large, six-country (United States, France, with increased integration of the affected persons (and their Germany, Italy, Japan and the United Kingdom) survey of the general relatives) experiences, and a person-oriented relational concept of public, as well as cancer patients and caregivers to determine disease, using critical psychology. Based on this approach persons attitudes and beliefs to cancer innovation and treatment. Known as diagnosed with AD could be offered rehabilitation based on his or the PACE Cancer Perceptions Index, this survey provides insights on her goals and preserved abilities. This study indicates that such how the public and cancer patients perceive clinical trials and the a modified diagnostic practice may contribute to resolve the potential risks and benefits of taking part in them. experience of a cleft between diagnostics and life with AD. Professor Philip Scheltens, Director of the Alzheimer Centre at the Vrije Universiteit Medical Centre in Amsterdam will lead the 11.30-12.00 (Pinto): Parallel Session P20 interactive discussions to identify the lessons that can be learned from the cancer field to improve and increase the role of patient P20. Malta Dementia Society advocacy groups in clinical trials in the field of Alzheimer’s disease. Scerri Charles This special symposium is organised by Eli Lilly & Co.

According to the latest estimates, the number of individuals with 13.00-14.00 (Wignacourt): Workshop WS1 dementia in the Maltese islands currently exceeds 1.2 per cent of the local population. This figure is expected to rise significantly in WS1. Whose Shoes? – Making it real for people living with the coming years reaching 3.6 per cent by the year 2060. This will dementia invariably put greater demands on an already stretched national Phillips Gill, Ramsden Shahana and invited guests living health care services leading to considerable socio-economic with dementia consequences. In these last few years, there has been a growing consensus in Malta Kate Swaffer, who lives with dementia, would like it if everyone on the need to tackle dementia and to take action. In May of 2009, at the 23rd Alzheimer Europe Conference would take this unique the Department of Health through its Parliamentary Secretariat for opportunity of walking in her world with her. It would make a

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tremendous difference if they did. 14.00-15.30 (Grandmaster Suite) Whose Shoes? goes a step beyond raising awareness; it engages PL3. Innovation and dementia emotionally as well as intellectually.” This highly interactive workshop, suitable for 50 people, spans the PL3.1. Giving a voice to people with dementia – the key topics of the conference. Through a wide range of scenarios experience of the European Working Group of People and a multi-perspective approach, we will explore the concerns, with Dementia challenges and opportunities facing people living with dementia, Baláčková Nina informal carers and a wide variety of professionals. We will trigger crucial conversations to share best practice and innovations from Nina Baláčková was diagnosed with Alzheimer’s disease in 2007 at across Europe. the age of 49 years. Two years later, she decided to help publicise Whose Shoes?, created by Gill Phillips, is a co-production tool information about Alzheimer’s to more people. She speaks to the meaning that people work together for positive change, fully public about her life with dementia. involving people with dementia and their carers. The content itself In her presentation at the Alzheimer Europe conference, she will has been co-produced, sourced from the voices of a very wide range share her journey with Alzheimer’s disease, highlighting the impact of contributors, both professional and citizen-led, on sometimes of diagnosis and present lessons from her activities as an advocate contentious or difficult topics. The experiential nature benefits all on behalf of people with dementia in the Czech Republic and on attendees: care providers, managers and front-line staff will develop a European level in the European Working Group of People with and ‘own’ new insights with potential to powerfully change the Dementia. culture and way of working in care settings, thus transforming She will pay particular attention to the situation of younger the experience of service users. Care commissioners and contract people with dementia, drawing on her personal experience to managers will benefit from exploring ‘person-centered’ practices, present recommendations to improve the diagnosis, support and helping them to achieve better outcomes consistently, and with a involvement of younger people with dementia. coherent, integrated approach. Key themes: Breaking down barriers, listening, everyone working PL3.2. Alzheimer’s disease – a priority of the Innovative together as equals, regardless of status or role; dementia-friendly Medicines Initiative communities; use of psychosocial approaches - art, music, dance Vaudano Elisabetta - and reduction of anti-psychotic drugs; role of technology and specifically assistive technologies; facilitating a culture change The number of people with Alzheimer’s disease is increasing, and through direct personal lived experience. Embedding empathy and there are no treatments available that will make a real difference to compassion, dignity and respect; promoting holistic approach to the relentless course of this disease. There are some drugs available well-being; reducing stigma. for Alzheimer’s disease, and while they do help, they only treat the Whose Shoes? - Making It Real was launched in London in May symptoms and don’t slow the progression of the disease. Despite 2013, in partnership with Think Local, Act Personal (TLAP). TLAP is very significant investments and many clinical trials drug developers a sector-wide coalition in the UK: 30 leading health and social care have so far failed to deliver any real innovative treatment for organisations working together for positive change. patients. Many attempts have failed, partly because improvements Kate Swaffer says: “It has never been so timely to remind policy seen in animals don’t always translate into benefits in people and makers, commissioners and front-line staff in health and social possibly because in clinical trials drugs have not been tested in the care organisations that each individual is a precious human being. right patient population, at the right dose or early enough in the Whose Shoes? - Making It Real electronic tool, with add-on dementia disease progression. module, provides a wonderful tool to help people understand what The Innovative Medicines Initiative (IMI) is a public-private we really mean by a dementia-friendly community. I invite you. Walk partnership between the EU and the European Federation of in my shoes.” Pharmaceutical Industries and Associations, aiming to tackle This session was inspired by Larry Gardiner, dementia campaigner bottlenecks in drug development and confront areas of healthcare in the UK. need that are of high priority to society, leading to more efficient discovery and development of better and safer medicines for Mark the dates! patients. Alzheimer’s disease is of high priority in the IMI research 24th Alzheimer Europe Conference agenda and this talk will presented the IMI portfolio of on-going Dignity & Autonomy in dementia and planned research activities aimed to tackle the challenges and deliver needed tools and models to foster the progress of Alzheimer’s disease pharmacological Research and Development. Glasgow, United Kingdom 20–22 October 2014

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PL3.3. Behavioural and psychological symptoms of to use new aids is complicated by e.g. memory and concentration dementia: The elephant in the room? problems, problems understanding instructions, recognising Mamo David C. objects/images, or problems carrying out complex actions (apraxia). Also, psychological and behaviour problems can affect learning to The dementias are now universally considered a public health use different types of assistive technology. Research has shown that priority, and developed countries have instituted strategies it is valuable to actively involve persons with dementia and their to address the personal, social, and economic cost of these carers in the development of assistive technologies, but this is no chronic neurodegenerative conditions. Most efforts focus of common practice yet. the critical clinical aspects including early recognition and Various assistive technologies are used in dementia care and diagnosis, availability and appropriate use of cognitive enhancers, positive effects have been reported, like improved cognition, well- minimising use of chemical and physical restraints, medical being, safety, less carer burden and improved self-confidence, and and nursing support for patients with dementia, and caregiver improved staff satisfaction. However, research into the effectiveness support. Yet, neuropsychiatric complications of dementia remain of these interventions is often carried out with small study samples one of the most prevalent reasons for failure of community care and rather weak study designs. This may limit the acceptance and and need for residential services, affecting up to 85% of patients implementation of assistive technologies in dementia care. with dementia across the course of the illness. Behavioural and Psychological Symptoms of Dementia (BPSD) includes a broad range 15.30-16.00 (Exhibition area) of neuropsychiatric disturbance that occur across the entire course PO4. Poster Presentations - Innovation of dementia, including anxiety and depression earlier in the course of the illness which often precede diagnosis of cognitive decline, PO4.2. How much are support services worth? The case of misperception phenomena and psychotic symptoms in early to Informal caregivers of care recipients with Alzheimer’s middle stages of the illness, and behavioural agitation in the middle Disease in ICS-HIS French panel data. to later stages of the illness. The significance and limitations of Gerves Chloé, Bellanger Martine, Ankri Joël the current management strategies of BPSD will be discussed. It is proposed that BPSD is a true “elephant in the room” in dementia Objectives: Support and services to informal caregivers have been care, and that neuropsychiatric care of patients with dementia must shown to alleviate caregiver’s burden of caring and to be cost- be incorporated at all levels of care through public and caregiver effective. This work reports a research carried out in France, which education, training of direct care staff, and availability of resources aimed to assess the relationships between caregiver’s willingness to to address neuropsychiatric consequences of dementia. pay (WTP) to be replaced and their needs for support and services. Data & Methods: The data used stemmed from two representative PL3.4. Assistive technologies supporting people with national surveys conducted by the French National Institute of dementia and their carers Statistics (INSEE) in association with the French Ministry of Health Meiland Franka in 2008: the Informal Caregivers Survey (ICS) and the Health and Impairment Survey (HIS). Contingent valuation method was used Assistive ICT technologies are increasingly popular in health care. to approximate the monetary value of informal care. After forgoing Also in the field of dementia, the use of assistive technologies is observations with missing values, we ran our model on 193 informal growing. These technologies are used to support persons with caregivers of people with Alzheimer’s disease. Statistical analyses dementia in coping with the consequences of the disease; to support were performed using Heckman’s two-step estimation strategy informal carers in their care task; and to assist professional carers Results: Informal caregiver’s WTP is influenced by the need for care in their daily practice. Not only will assistive technologies bring training (p<0.01). Caregiver’s health conditions related to care such new opportunities in dementia care, it will also provide a means to as depression and anxiety disorders also affected their WTP (p<0.05). maintain and promote good quality of care for the growing number Providing day and night supervision to care recipient (p<0.01) and of people with dementia in the community. caregiver’s income also affected their WTP (p<0.05). Sensitivity In order to reach this goal, it is important that the assistive analysis qualified these results for gender and age. gradients. technologies are developed to adequately meet the needs and Discussion: Public investment for supporting caregivers in different wishes of the persons with dementia and carers. Community- ways is required to implement efficient policies since decision dwelling persons with dementia have unmet needs in various makers rely more and more on informal care as the most important domains of daily life, such as memory, daily activities, social source of care for Alzheimer’s disease patients contacts and safety. Furthermore, it is important to take into account specific problems people with different types of dementia and in different stages of dementia may experience. Though it is recognised that people with dementia are able to learn, learning

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PO4.3. Cognitive Assistance to Support Social Integration In Bartholomeyczik 2009). So far, the use of IdA was limited to the Alzheimer’s Disease German context because of its restriction to the German language. Koldrack Philipp, Luplow Maik, Kirste Thomas, Teipel Stefan The aim of the following study was to translate IdA into the English language as a first step to make IdA available for its use in English An active lifestyle with extensive social contact protects cognition of speaking countries. elderly people and is substantial for quality of life. Communication Method: The translation of IdA was carried out according to the and social interaction reduces the cognitive decline and delays translation process of ISPOR (Wild, Grove et al. 2005). IdA was first progression of neurodegenerative disease like Alzheimer’s disease translated into the target language (English) and subsequently (AD). However, maintaining social contact proves to be increasingly translated back into the original language (German). Afterwards, difficult with growing cognitive impairment, and bears the risk the instrument was checked by two registered nurses from England of growing social exclusion. Orthotics for cognitive functions can (Great Britain) for its comprehensibility and conceptual similarities support people with AD in processing information and may help to (cognitive debriefing). overcome every day limitations. While each available system targets Results: An English version of IdA is now available for use in nursing a specific class of cognitive task, we argue for the special value of research and nursing practice. It was of great importance that assistive technology supporting outdoor mobility to create baseline translators were informed about the underlying concepts of the requirements to enable communication and social interaction. assessment and that each question of IdA was described in detail in Employing application examples for existing technical solutions a manual before translation took place. and systems described in the scientific literature, we outline Discussion: The translation of IdA into English has to be understood the necessary trade-off in system design between the needs for as a first step within the adaptation process of IdA for an English- security on the one hand and the desire for autonomy on the other speaking country. Further studies are needed to pilot IdA within the hand. While maximum autonomy promises the best performance specific context of the target population and to test its linguistic in satisfying user wishes for support in target oriented outdoor appropriateness as well as its face and content validity. In addition, mobility, and therefore enables a more active lifestyle, it also psychometric testings are needed that evaluate the scientific merit requires a higher degree of user interaction. This might overtax of IdA in the target country. a person with increasing cognitive impairment. Pure security applications require less to no interaction, enabling persons with PO4.7. The Therapeutic Use of Doll Therapy for People with dementia to walk around in the neighborhood but will not provide Dementia: A Systematic Review of the Literature cognitive assistance for target-oriented movement. Mitchell Gary; Templeton Michelle The goal for assistance systems should be a unified technical solution, by design taking the progressive nature of AD into account. In each Introduction: The use of non-pharmacological treatments for stage of dementia, the user then receives assistance according to his people with dementia is rising as evidenced in reality orientation, current abilities in order to enable as much autonomy as possible. reminiscence therapy, aromatherapy and music therapy (Holt et al, With our approach, we aim to bring together an engineering point of 2009; Vink et al, 2011 and Woods et al, 2012). There are a number of view on providing technical solutions with a user-driven perspective interventions available to assist health professionals and carers with on needs and requirements for sustainable and sufficient support non-pharmacological treatment for people with dementia but not in social activities. all of these appear to be as rigorously researched as the examples above. The therapeutic use of dolls for people with dementia PO4.5. English Translation of an assessment for identifying is one such therapy that has limited empirical evidence, but is triggers and causes of dementia related challenging appearing to be increasingly used in clinical practice (Stephens et behaviour - IdA al, 2012). Despite its increase in clinical practice, there have been Holle Daniela, Zischka Matthias, Halek Margareta few empirical studies conducted and as yet no published systematic literature review on its practice. Background: The Innovative dementia-oriented Assessment tool Results of Review: There were limited empirical findings pertaining (IdA) guides nursing staff systematically through the process of to the therapeutic use of doll therapy for people with dementia. identifying possible triggers and causes of challenging behaviour Almost all of the studies reviewed commended the use of doll of people with dementia. It was developed on the basis of an therapy for people with dementia. Some authors asserted that international literature study and the need-driven-dementia- engagement with a doll could lead to an improvement of mood, compromised-behaviour model (Kolanowski 1999). IdA was tested a greater dietary intake, a sense of security and reduced levels of in relation to its practicability, content validity and construct distress for a person with dementia. Despite this cause for optimism validity in different nursing homes in Germany (Halek 2010). For a number of challenges were identified. These included differences its use in nursing practice, it is recommended as a guideline for in the type of doll used and how to assess if a person with dementia team meetings and dementia-specific case conferences (Halek and would benefit from use of a therapeutic doll.

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Discussion: The theoretical basis of doll therapy is complex and our country. arises from the work of John Bowlby’s attachment theory (1969). This research project is supported by the grant NT11325 of the Despite its importance there was limited reference to this in the Ministry of Health of the Czech Republic: “Long-term care for vast majority of the literature. As well as this there was limited seniors: quality of care in institutions, organization’s culture and consideration given to the obvious ethical dilemma of providing a support of frail older persons.” doll to a person with dementia which some believe can infantilise people with dementia (Kitwood, 1997 and Mitchell and O’Donnell PO4.11. Prescription pattern of Chinese herbal products for 2013). Alzheimer’s disease in Taiwan: a population-based Conclusion: Any therapeutic avenue that improves the wellbeing of study a person with dementia is of great value and importance to clinical Shun-Ku Lin, Jung-Nien Lai, Sui-Hing Yan practice. Doll therapy, however, requires close scrutiny and it should be approached with some caution as its practice is still in its infancy. Background: People use complementary and alternative medicines hoping that such therapy might produce improvements in life PO4.10. Data collection and processing in care of persons quality, relieve behavioural and psychological symptoms, and with dementia maintain memory. For further improvement of the Chinese herbal Krupicka Radim, Viteckova Slavka, Szabo Zoltan, Vankova products therapy, the goal of presented research was to analyse Hana, Jedlinska Martina, Holmerova Iva Chinese herbal products utility rate among people with Alzheimer’s disease in Taiwan. Long-term nursing care for patients with dementia presents an Methods: We have included all people who were newly diagnosed important social, healthcare and economic issue, especially with with Alzheimer’s disease by board-certified neurologists from a demographic changes and changing disease patterns (increasing simple random sample of one million subjects among the insured number of chronic disease patients). Despite ongoing modernization general population and the rate of insured individuals has been and quality improvement of such care in the Czech Republic, the consistently above 96% since 1997.The usage, frequency of service, availability of an appropriate care for patients is still low. Collection and the Chinese herbal products prescribed for Alzheimer’s disease, of data, which are necessary for appropriate planning and quality among people who were newly diagnosed with Alzheimer’s management of long-term care, is one of the most important disease by board-certified neurologists, were evaluated using a issues for the executive organizations – not only on account of randomly sampled cohort of 1’000’000 beneficiaries recruited from the economic purposes, but also for the social and demographic the National Health Insurance Research Database. The logistic studies. These data analyze, for instance, self-sufficiency or frailty regression method was employed to estimate the odds ratios (ORs) and their risk factors. The current practice for the data collection for utilisation of Traditional Chinese Medicine (TCM). performed by the long term care institutions is still usage of the Results: The database claims contained information on 1’137 people paper surveys. Such methods are not only inefficient but also with Alzheimer’s disease from 1997 to 2008. Among them, 889 inaccurate and homes for the future evaluation and storage of the (78.2%) Alzheimer’s people used TCM outpatient services. data. The solution is a complex software tool, which could be used The present findings show that, among people with Alzheimer’s not only for survey creation, but also for the storage and processing disease, females and those aged 55-65 years were more likely to be of the collected data. TCM users than males and other age groups. The present results Our software was developed in cooperation with the Centre of also demonstrate that people with Alzheimer’s disease who are Gerontology and CELLO Faculty of Humanities, Charles University in living in urban area and have developed one or more behavioural Prague and consulted with the Czech Alzheimer Society. It consists and psychological symptoms of dementia were more likely to be of two parts; firstly a survey designer which provides an easy- TCM users than living in rural area and no symptom group. Diseases usable tool for the questionnaire creation, print or export to the PDF of the musculoskeletal system and connective tissue together format. Second part is a web database system for data collection, with symptoms, signs, and ill-defined conditions were the two process and storage. The completed questionnaires are scanned and most frequent diagnoses in the disease category for TCM visits. imported to the system which automatically recognizes the data. Furthermore, Alzheimer’s people tended to use Chinese herbal The questionnaire can be also completed in a web form. In such way products to deal with Alzheimer’s symptoms and side effects of are the data fully accessible for the users and can be easily managed anti-Alzheimer’s drugs. and exported to various formats by the scientists. Maziren-Wan and Bu-Zhong-Yi-Qi-Tang are the two most frequently We aim to provide a „package of scales“ and a „package of criteria prescribed formulae by TCM doctors in Taiwan for treating in care provision“ that will be easy to use by the care providers; Alzheimer’s disease. moreover, their automated processing by the software would Conclusion: Our results suggest that, based on the co-existence make data available not only for the clinical use but also (after of both conventional and traditional Chinese medical treatments, anonymisation) for the organization of long-term nursing care in most people with Alzheimer’s consume herbal therapies with

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the intention of relieving their Alzheimer’s-related symptoms, Drifting without time and future, rather than because they have rejected standard anti-Alzheimer’s Losing myself in the dark of the day. treatments. Although some evidence does support the use TCM to You – with your limits and beams which keep you up and show you treat Alzheimer’s disease, the results from the current study may the right direction – have been confounded by placebo effect, which emphasize the need Give me your hand. for well conducted, double-blind, randomised, placebo-controlled In November 2012 a choir of a special kind entitled ‘Do not forget the studies in order to further evaluate the efficacy of Maziren-Wan and songs’ started. It was special because in this choir old and young Bu-Zhong-Yi-Qi-Tang on Alzheimer’s people. people, people with and without dementia, relatives and friends make music and sing together. PO4.12. “There’s a life for us, if we risk it!” Is a diagnosis of The joint singing makes new encounters possible and strengthens dementia a risky business? old connections. Songs often awaken childhood memories and Osborne Sally accompany us through our whole lives. Even if – from a certain age – our memories fade we do not lose the songs from the past. This paper is a review of the literature as part of a longitudinal PhD By listening and especially by singing together with other people research study exploring the nature of risk with persons with early we can become aware of memories and associate them with our stage dementia. Risk is a concept used in dementia research when present. examining choice and decision-making, and is primarily a negative Even if in the course of a mental disease the memory fails and things phenomenon associated with danger and hazard. More recent we once remembered are no longer available songs as well as their theory acknowledges its dual nature -the idea of ‘good’ and ‘bad’ texts are still familiar and can be sung. risk. A diagnosis of dementia puts a person’s fundamental rights to Singing together in a choir supports demented people and their take a risk in question, which is often withheld or withdrawn if the relatives, friends and neighbours and helps them to find a way out person is seen as vulnerable - but who decides? Vulnerable groups of their social isolation and to break the taboo of a mental disease. in society have reported being so protected from risk that the For people suffering from dementia, too, their quality of life implies protection itself paradoxically can become a source of harm. Support more than good medical and nursing care. A choir stands for then, for people with dementia predominantly involves aversion to normality, enables the involvement in social processes and creates risk because of the concern for safety, protection and liability. This social contacts. risk averse support comes at a cost however as it infringes upon the The choir practice takes place in the afternoon twice a month. autonomy of people living with dementia. Beauchamp and Childress The conductor is a trained music geriatrician, and the project (1989) see the recognition of the right to take a risk as inherent in the management lies with a trained female cultural geriatrician who has principle of respect for autonomy, and this may come to mean the many years’ experience in the care of people with dementia. autonomy to take, or not to take a risk. In her firsthand account of The rehearsals are visited by about 30 people who love singing. Here dementia, Morgan (2009) says that vulnerability is the greatest risk, people with a demented disease, people with a mental or physical as it places oneself more at risk from society. disablement, people caring for sick relatives, people working on a Risk is being used in this study as an exemplar to view autonomy full-time or part-time basis or as volunteers who are experienced in and rights, the right to independent action taken with free will and the care of the elderly and people who do not suffer from dementia choice, when that is possible. It begins with the premise that risk and who do not have a caring relationship come together. is a part of life for everyone, and the dignity of risk, or the right to In the choir the participants can enjoy a fruitful togetherness and failure remains central to growth and the development of resilience. a stimulating exchange. Singing together in a choir implies for A cohort of younger people with a diagnosis has led to a greater all participants that they share a piece of normality which they focus on the person with dementia, and developing supportive and experience together. proactive care practices that meet their needs calls for knowledge produced from their own perspective. This review has important 16.00-17.15 (Grandmaster Suite): Plenary legal, ethical and moral implications for dementia care and practice, Session PL4. Dementia friendly society and immediate and significant implications within the daily life of a person with an early diagnosis of dementia. Morgan (2009) says PL4.1. Ageing-in-place: Living arrangements for people with ‘there is a life for us, if we risk it’. dementia in the community van Hoof Joost PO4.14. Do not forget the songs – a choir for people with and without dementia Ageing-in-place is the preferred way of living for older individuals in Blaschke Ursula an ageing society. This can be facilitated through architectural and technological solutions in the home environment. Dementia poses I’m walking in the sea of forgetting, additional challenges when designing, constructing, or retrofitting

95 23rd Alzheimer Europe Conference

Abstracts / Saturday, 12 October

housing facilities that support ageing-in-place. Older adults with people feel about dementia. As a way of overcoming this seemingly dementia and their partners ask for living environments that inevitable biological destiny “personhood” has been constructed support independence, compensate for declining and vitality, and as an extended “self” which can survive the degeneration of the lower the burden of family care. physical brain. Evidence is presented from semantics, behaviour and The evidence-based design process of a demonstration home for clinical treatment of people with dementia which suggests that the people with dementia is described, which was performed through individual “self” survives longer than expected. Respectful care of literature review and focus group sessions. This design incorporates a person with dementia requires a willingness to acknowledge the modifications in terms of architecture, interior design, the indoor persistent self and to find ways of communicating with it. environment, and technological solutions. Current design guidelines are frequently based on small-scale studies, and, therefore, more PL4.3. Dementia care: personal journeys to dementia systematic field research should be performed to provide further friendly societies evidence for the efficacy of solutions. The demonstration dwelling Innes Anthea is used as an educational and training setting for professionals from the fields of nursing, construction, and building services In the past decade, policy, practice, academic and clinical discourse engineering. surrounding dementia has changed and developed at a fast pace. This paper will set the contemporary UK ‘dementia friendly’ PL4.2. Persistence of the self in dementia challenge agenda within the context of a rapidly changing global Aquilina Carmelo landscape. The importance of remembering the person and their It has long been assumed that the “self” is lost in dementia but that individual needs remains, however there is growing recognition that “personhood” persists. “Personhood” is the product of the social for an individual to live well with dementia requires the support interaction between the individual and their surroundings and the and action of wider society whether this is shops, banks, transport attribution of individuality to any being. “Self” is a neurologically providers or formal care service providers. The achievements in our based cognitive and affective subjective construct through which field to become more dementia friendly will be highlighted as will an individual human being experiences a sense of identity. This loss the ongoing challenges. of “self” is central to the “living death” is part of the horror that

96 Living well in a dementia-friendly society / Malta 2013

Final Programme / Index of Authors

Index of Authors Name Affiliation E-mail A Aavik Stig-Atle European Working Group of People with Dementia, Alzheimer [email protected] Europe, Norway Abela Maria Rehabilitation Hospital Karin Grech, Pieta, Malta [email protected] Abela Stephen Rehabilitation Hospital Karin Grech, Pieta, Malta [email protected] Abiuso Francesca I+, Florence, Italy [email protected] Achterberg Wilco Leiden University Medical Centre, Leiden, Netherlands [email protected] Adler Christine M.A.S Alzheimerhilfe, Bad Ischl, Austria [email protected] Aketun Sigrid The City of Oslo resource Centre for Geriatric Care, Oslo, Norway [email protected] Alaranta Maaret Alzheimer Society of Finland, Helsinki, Finland [email protected] Ambroz Petr Department of Epidemiology and Public Health, Faculty of [email protected] Medicine, University of Ostrava, Czech Republic Andersen Astrid National Centre for Aging and Health, Norway [email protected] Andersen Knud D. National Board of Social Services, Ministry of Social Affairs, [email protected] Denmark Angst Silvia University of Zurich, Center of Gerontology, Switzerland [email protected] Ankri Joël Health Environment Aging Unit (SEV), Paris, France [email protected] Aquilina Carmelo Specialist mental Health Services for Older People, St George's [email protected] Hospital, Sydney, Australia Ashley Peter Association for Dementia Studies, University of Worcester, [email protected] United Kingdom Ataie Jutta E. Portland State University, Portland, Oregon, USA [email protected] Attaianese Fulvia Centro Alzheimer Fondazione Roma, Italy [email protected] Auer Stefanie M.A.S Alzheimerhilfe Bad Ischl, &, Danube University, Krems, [email protected] & Austria [email protected] B Baeyens Jean-Pierre Belgium [email protected] Bahr Ben A. University of North Carolina –Pembroke, Pembroke, NC, USA [email protected] Baláčková Nina European Working Group of People with Dementia, Alzheimer [email protected] Europe, Czech Republic Baldacchino Kristin Rehabilitation Hospital Karin Grech, Pieta, Malta [email protected] Ballard Clive King’s College London, London UK [email protected] Banerjee Sube University of Sussex, United Kingdom [email protected] Bartholomeyczik Sabine German Center for Neurodegenerative Diseases (DZNE) & [email protected] Witten/Herdecke University, Witten, Germany Bartorelli Luisa Alzheimer Uniti Onlus, Rome and Centro Alzheimer Fondazione [email protected] Roma, Italy Basel Kikhia Luleå University of Technology, Luleå, Sweden [email protected] Bassal Catherine School of Health, University of Applied Sciences and Arts [email protected] Western Switzerland, Fribourg, Switzerland Bausewein Claudia Ludwig-Maximilians-University Munich, Munich, Germany [email protected] muenchen.de Baydemir Recep Artvin State Hospital, Neurology Department, Turkey [email protected] Beattie Mark University of Ulster, Jordanstown, Northern Ireland, United [email protected] Kingdom Bell Jeni University Hospital Southampton, United Kingdom [email protected] Bellanger Martine EHESP French School of Public Health, Rennes, France [email protected] Benalia Hamid King’s College London, London, United Kingdom [email protected]

97 23rd Alzheimer Europe Conference

Final Programme / Index of Authors

Name Affiliation E-mail

Bengtsson Johan E. InterNIT, Luleå, Sweden [email protected] Bevilacqua Petra Ass. Sostegno Demenze e Alzheimer Mirandola, Italy- Alzheimer [email protected] Uniti Onlus, Rome, Italy Blaschke Ursula Das Tageshaus gem. GmbH – Selbstbestimmt Leben im Alter, [email protected] Bielefeld, Germany Boccardo Mauro Centro Alzheimer Fondazione Roma, Italy [email protected] Boman Inga-Lill Danderyd’s University Hospital, Stockholm, Sweden [email protected] Bonora Annalisa ASP Unione Comuni Modenesi Area Nord, Mirandola, Italy [email protected] Boon Jon Ingleton Wood, Norwich, UK [email protected] Boran Lorraine Dublin City University [email protected] Borley Gayle University of Northampton, United Kingdom [email protected] Bougea Anastasia Department of Neurology, Eginitio Hospital, University of [email protected] Athens, Athens, Greece Brainin Michael Danube University, Krems, Austria [email protected] Bray Jennifer Association for Dementia Studies, University of Worcester, UK [email protected] Brooker Dawn Association for Dementia Studies, University of Worcester, UK [email protected] Brorsson Anna Karolinska Institute, Stockholn, Sweden [email protected] Brown Caroline Alzheimer Scotland’s National Dementia Carers Action Network [email protected] (NDCAN), Scotland, United Kingdom Bruijs Anne-Marie. Alzheimer Nederland, Amersfoort, Netherlands [email protected] Bruno Patrizia Alzheimer Uniti, Rome, Italy [email protected] Bundaleska Olivera Gerontology Institute 13 November, Skopje, R. Macedonia [email protected] Burns Michelle California, USA [email protected] C Camí Jordi Pasqual Maragall Foundation, Barcelona, Spain [email protected] Camilleri Georgette-Marie University of Malta, Tal-Qroqq, Malta [email protected] Campman Carlijn Tilburg University, Tilburg, Netherlands [email protected] Carafelli Antonella Regional office for health and social care [email protected] Caty Marcus St. Gillis, Belgium [email protected] Cetin Aysun Erciyes University, Medicine Faculty, Biochemistry Department, [email protected] Turkey Chadhamanek Divya King’s College London, London, United Kingdom [email protected] Challis David University of Manchester, Manchester, United Kingdom [email protected] Chandaria Karishma Alzheimer’s Society, London, United Kingdom [email protected] Chankrachang Siwaporn Northern Neurological Center, Chiang Mai, Thailand [email protected] Charlesworth Georgina North East London NHS FT, United Kingdom [email protected] Chattat Rabih University of Bologna, Bologna, Italy [email protected] Chen Luke University of Ulster, Jordanstown, Northern Ireland, United [email protected] Kingdom Chetcuti-Galea Roberta Rehabilitation Hospital Karin Grech, Pieta, Malta [email protected] Church Sarah University of Northampton, United Kingdom [email protected] Clark Andrew University of Salford, United Kingdom [email protected] Clarke Chris University of Hull, United Kingdom [email protected] Clemens Ken Age UK Cheshire, United Kingdom [email protected] Closon Marie Christine University of Louvain, Louvain, Belgium [email protected] Cohen-Mansfield Jiska Tel-Aviv University,Tel-Aviv, Israel [email protected] Connolly Mary The Alzheimer Society of Ireland, Dublin, Ireland [email protected] Constant Olivier Flemish Expertise Centre on Dementia (Antwerp, Belgium) [email protected]

98 Living well in a dementia-friendly society / Malta 2013

Final Programme / Index of Authors

Name Affiliation E-mail

Crean Margaret The Alzheimer Society of Ireland, Dublin, Ireland [email protected] Crockett Arlene Alzheimer Scotland, Motherwell, Scotland, United Kingdom [email protected] Cutler Clare Bournemouth University, Bournemouth, United Kingdom [email protected] Cutler Stephen University of Vermont, Burlington, VT USA and University of [email protected] Bucharest, Bucharest, Romania D Dalana Niki Psychotherapeutic Center of Piraeus, Psycho geriatric Unit, [email protected] Greece Dalli James Rehabilitation Hospital Karin Grech, Pieta, Malta [email protected] Dan-Glauser Elise Department of Psychology, Stanford University, Stanford, CA, [email protected] USA Davison, Jill Northumberland, Tyne & Wear NHS Trust, United Kingdom [email protected] de Andrés Jiménez Elena Psychologist. AFAMUR- Alzheimer Association, Murcia, Spain. [email protected] de Rosa Giuliana Alzheimer Uniti Onlus, Italy [email protected] de Vugt Marjolein Alzheimer Centre Limburg, Maastricht, Netherlands [email protected] Deckers Kay Alzheimer Centre Limburg, Maastricht, Netherlands [email protected] Degleris Nikos Department of Psychogeriatrics Piraeus HCMHR, Greece [email protected] Dening Karen Dementia UK, London, United Kingdom [email protected] Desana Marie-Odile France Alzheimer, Paris, France [email protected] Dichter Martin German Center for Neurodegenerative Diseases (DZNE) & [email protected] University Witten/Herdecke, Witten, Germany Doncaster Emily University of Essex, Colchester, United Kingdom [email protected] Donkers Hanneke Radboud University Nijmegen Medical Center- Alzheimer [email protected] Center Nijmegen, Scientific Institute for Quality of Healthcare, Netherlands Döpp Carola UMC St. Radboud, Alzheimer Center-IQ healthcare, Nijmegen, c.dö[email protected] Netherlands Dortmann Olga German Center for Neurodegenerative Diseases (DZNE) & [email protected] University Witten/Herdecke, Witten, Germany Douglas Lisa Cheshire & Wirral Partnership Trust, United Kingdom [email protected] Dröes Rose-Marie VU University Medical Center, Amsterdam, Netherlands [email protected] Duca Annalise AcrossLimits Ltd, Hamrun, Malta [email protected] Duguet Anne-Marie University of Toulouse, Toulouse, France [email protected] Duval Philippe CEAS du Var, La Garde, Var, France [email protected] E Easton Avril The Alzheimer Society of Ireland, Dublin, Ireland. [email protected] Efthymiou Areti Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Eland Derek Bournemouth University Dementia Institute (BUD), [email protected] Bournemouth, United Kingdom Erola Leena Alzheimer Society, Helsinki, Finland [email protected] Evans Catherine King’s College London, London, United Kingdom [email protected] Evans Natalie VU University Medical Centre, Amsterdam, Netherlands [email protected] Evans Simon Association for Dementia Studies, University of Worcester, UK [email protected] F Fabbo Andrea AUSL Modena, Dementia Program, Alzheimer Uniti Onlus, Italy [email protected] Fetherstonhaugh Deirdre Australian Institute for Primary care & Ageing (AIPCA), La Trobe [email protected] University, Australia Fossey Jane Oxford Health NHS FT, Oxford, United Kingdom jane.fossey @oxfordhealth.nhs.uk

99 23rd Alzheimer Europe Conference

Final Programme / Index of Authors

Name Affiliation E-mail

Foster Angiolina Scottish Government, Edinburgh, Scotland, United Kingdom [email protected] Francone Caterina Alzheimer Uniti Onlus, Italy [email protected] Frognet Jean-Pierre European Working Group of People with Dementia, Alzheimer [email protected] Europe, Belgium G Galea Doris Rehabilitation Hospital Karin Grech, Pieta, Malta [email protected] Garden May-Hilde Norwegian Health Association, Oslo, Norway [email protected] Garitte Catherine University Paris Ouest, Nanterre, France [email protected] Gastmans Chris Faculty of Medicine, KU Leuven, Leuven, Belgium [email protected] Gay Marie-Claire University Paris Ouest, Nanterre, France [email protected] Geipel Gary Eli Lilly and Company, Indianapolis, Indiana, USA [email protected] Gerritsen Debby L Radboud University Medical Center Nijmegen, the Netherlands [email protected] Gerves Chloé EHESP French School of Public Health, Rennes, France & Health [email protected] Environment Aging Unit (SEV), Paris, France Gispert Juan Domingo Pasqual Maragall Foundation, Barcelona, Spain [email protected] Giuliano Angele AcrossLimits, Hamrun, Malta [email protected] Goarin Hervé Mutualité Sociale des Portes de Brettagne, Rennes, France [email protected] Goudie Fiona Sheffield Health & Social Care NHS FT UK [email protected] Gove Dianne Alzheimer Europe, Luxembourg, Luxembourg [email protected] Graff Maud Radboud University Nijmegen & UMC St. Radboud, Alzheimer [email protected] Center-IQ healthcare, Nijmegen, Netherlands Grande Gunn University of Manchester, Manchester, UK Gunn.grande@ manchester.ac.uk Gräske Johannes Alice Salomon University of Applied Sciences, Berlin, Germany [email protected] Greve Ute German Alzheimer Association, Section Mecklenburg-Western [email protected] Pomerania, Rostock, Germany Grima Daniel Government of Malta, Malta [email protected] Grönkvist Raoul European Working Group of People with Dementia, Alzheimer [email protected] Europe, Finland Guisset-Martinez Marie-Jo Fondation Médéric Alzheimer, Paris, France [email protected] Gysels Marjolein University of Amsterdam, Amsterdam, Netherlands [email protected] H Halek Margareta German Center for Neurodegenerative Diseases (DZNE) & [email protected] University Witten/Herdecke, Witten, Germany Hallberg Josef Lulea University of Technology, Lulea, Sweden [email protected] Hallberg Ulrika Ageing and Health, Norwegian Centre for Research, Education [email protected] and Service, Tønsberg Hambidge Sarah BUDI, Bournemouth, United Kingdom [email protected] Hart Cathrym Humber NHS FT, United Kingdom [email protected] Hartin Phillip University of Ulster, Jordanstown, Northern Ireland, United [email protected] Kingdom Hattink Bart VU University Medical Center, Amsterdam, Netherlands [email protected] Heimerl Katharina Alpen Adria University, IFF, Institute Palliative Care & katharina.heimerl@aau .at Organisational Ethics, Vienna, Austria Heimonen Sirkkaliisa The Age Institute, Helsinki, Finland [email protected] Henry Sabine Ligue Alzheimer ASBL, Liège, Belgium [email protected] Hicks Ben Bournemouth University Dementia Institute (BUDI), [email protected] Bournemouth, England Higginson Irene J King’s College London, London, UK [email protected]

100 Living well in a dementia-friendly society / Malta 2013

Final Programme / Index of Authors

Name Affiliation E-mail

Hochgräber Iris German Center for Neurodegenerative Diseases (DZNE) & [email protected] Witten/Herdecke University, Witten, Germany Hodge Sophie Royal College of Psychiatrists, London, United Kingdom [email protected] Hodgson Lynne Quinnipiac University, Hamden, CT USA [email protected] Hoe Juanita University College London, London, United Kingdom [email protected] Hoey Jesse University of Waterloo, Waterloo, Canada [email protected] Hoffmann Wolfgang German Center for Neurodegenerative Disease (DZNE), Rostock/ [email protected] & Greifswald & Institute for Community Medicine, University [email protected] Hospital Greifswald, Greifswald, Germany Holle Bernhard German Center for Neurodegenerative Diseases (DZNE) & [email protected] Witten/Herdecke University, Witten, Germany Holmerová Iva CELLO-ILC-CZ Faculty of Humanities and 3rd Med Faculty Charles [email protected] University in Prague and Centre of Gerontology Prague, Czech Republic Houston Agnes European Working Group of People with Dementia, Alzheimer [email protected] Europe, Scotland, United Kingdom Hrin Silvia Synopsis Sprl, Timisoara, Romania [email protected] Htay U Hla Alzheimer’s Society, United Kingdom [email protected] Husebo Bettina University of Bergen, Bergen, Norway [email protected] Husebo Stein Dignity Centre, Bergen, Norway [email protected] Hýblová Pavla Czech Alzheimer Society, Prague, Czech Repblic [email protected] I Ikonne Uzoma S. University of North Carolina –Pembroke, Pembroke, NC USA [email protected] Iliffe Steve University College London [email protected] Innes Anthea Bournemouth University, Bournemouth, United Kingdom [email protected] Irving Kate Dublin City University, Dublin, Ireland [email protected] J Jain Priya University College London [email protected] Janečková Hana Czech Alzheimer Society, Prague, Czech Repblic [email protected] Jankowski Natalie Department of Psychiatry and Psychotherapy, Charite CBF, [email protected] Germany Janout Vladimír Department of Epidemiology and Public Health, Faculty of [email protected] Medicine, University of Ostrava, Czech Republic Jansen Sabine Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz, Berlin, [email protected] Germany Jedlinska Martina CELLO-ILC-CZ Faculty of Humanities Charles University in Prague [email protected] and Centre of Gerontology, Prague, Czech Republic Johannessen Aud Ageing and Health, Norwegian Centre for Research, Education [email protected] and Service, Tønsberg Johnston Bridget University of Dundee, Dundee, United Kingdom [email protected] Jones Kerry University of Exeter, Exeter, United Kingdom [email protected] Jung-Nien Lai National Yang-Ming University, Taipei City & Taipei City Hospital, [email protected] Taipei City, Taiwan K Kaiser Susanne Department of Psychology, University of Geneva, Geneva, [email protected] Switzerland Kanellopoulou S. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Kapaki Elisabeth Department of Neurology, Eginitio Hospital, University of [email protected] Athens, Athens, Greece

101 23rd Alzheimer Europe Conference

Final Programme / Index of Authors

Name Affiliation E-mail

Karamberi Manto Psychotherapeutic Center of Piraeus, Psycho geriatric Unit, [email protected] Greece Karlsson Eva Luleå University of Technology, Luleå, Sweden [email protected] Kelly Fiona University of Stirling, Stirling, Scotland, United Kingdom [email protected] Kevern Peter Staffordshire University, Stafford, United Kingdom [email protected] Khan Zunera King’s College London, London, United Kingdom [email protected] Kilimann Ingo German Center for Neurodegenerative Disease (DZNE), Rostock/ [email protected] Greifswald & University Hospital Rostock, Rostock, Germany Kimenai Jasper Alzheimer Nederland, Amersfoort, Netherlands [email protected] Kingston Paul Staffordshire University, Stafford, United Kingdom [email protected] Kirste Thomas University of Rostock, Germany [email protected] Kissani Najib Espoir Maroc Alzheimer. Marrakech, Morocco [email protected] Köhler Sebastian Alzheimer Centre Limburg, Maastricht, Netherlands [email protected] Koldrack Philipp DZNE, Rostock, Germany [email protected] Komano Hiroto Iwate Medical University, Yahaba, Japan [email protected] Koseoglu Emel Erciyes University, Medicine Faculty, Neurology Department, [email protected] Turkey Kottorp Anders Karolinska Institutet, Stockholm, Sweden [email protected] Kristensen Fritze University College of Northern Denmark, Nursing School, [email protected] Hjoerring, Denmark Krolak-Salmon Pierre CHU Lyon, Lyon, France [email protected] Krupicka Radim Faculty of Biomedical Engineering, Czech Technical University in [email protected] Prague, Kladno, Czech Republic Kuin Yolande Radboud University Nijmegen, Netherlands [email protected] L La Fontaine Jenny Association for Dementia Studies, University of Worcester, [email protected] United Kingdom Lang I. University of Exeter Medical School, University of Exeter, Exeter, [email protected] United Kingdom Laoutari Sophia Statistician, Greece [email protected] Leperre-Desplanques Haute Autorité de Santé, Paris, France [email protected] Armelle Leung Phuong University College London, Mental Health Sciences Unit, [email protected] London, UK Leve Verena Department of General Practice, Faculty of Medicine, Heinrich- [email protected] Heine University Duesseldorf, Germany Levi Stephanie Alzheimer Uniti Onlus, Italy [email protected] Lewis Penney King’s College London, London, United Kingdom [email protected] Leyland Helen Cheshire & Wirral Partnership Trust, United Kingdom [email protected] Li Ryan University College London, London, United Kingdom [email protected] Limiñana Gras Rosa María Professor of the Faculty of Psychologist, Murcia, Spain [email protected] Lisaerde Jo ACHG, Leuven, Belgium [email protected] Liu Junjun Iwate Medical University, Yahaba, Japan [email protected] Liu Shuyu Iwate Medical University, Yahaba, Japan [email protected] Lundberg Stefan School of technology and health, The Royal Institute of [email protected] technology, Sweden Luplow Maik German Center for Neurodegenerative Disease (DZNE), Rostock/ [email protected] Greifswald, Germany

102 Living well in a dementia-friendly society / Malta 2013

Final Programme / Index of Authors

Name Affiliation E-mail

M Mabire Jean-Bernard University Paris Ouest, Nanterre, France [email protected] Maeda Tomoji Iwate Medical University, Yahaba, Japan maedato@ iwate-med.ac.jp Mäki-Petäjä-Leinonen Anna University of Helsinki, Helsinki, Finland [email protected] Malone Brian Scottish Dementia Working Group, Scotland, United Kingdom [email protected] Malouf Reem University of Oxford, Oxford, United Kingdom [email protected] Mamo David C. University of Toronto, Toronto, Canada and University of Malta, [email protected] Msida, Malta Manthorpe Jill King’s College London, London, United Kingdom [email protected] Mapes Neil Dementia Adventure, Chelmsford, England [email protected] Margioti E. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Markowitsch Hans. J. University of Bielefeld, Bielefeld, Germany [email protected] Mastry Olivia ACT on Alzheimer’s, USA [email protected] Mátlová Martina Czech Alzheimer Society, Prague, Czech Repblic [email protected] Matsumoto Yukino Iwate Medical University, Yahaba, Japan [email protected] Mc Parland, Patricia University of Stirling, Stirling, Scotland, United Kingdom [email protected] McCrae Niall King’s College London, London, United Kingdom [email protected] McFadden John Appleton Health Care Center, USA [email protected] McFadden Susan Fox Valley Memory Project, USA [email protected] McGarrigle Lisa Dublin City University [email protected] McGettrick Gráinne The Alzheimer Society of Ireland, Dublin, Ireland [email protected] McGovern Justine Lehman College, Bronx, New York, USA [email protected] McKinley, Deb Stratis Health, USA [email protected] McNamara George Alzheimer’s Society, London, United Kingdom [email protected] Meerveld Julie Alzheimer Nederland, Amersfoort, Netherlands [email protected] Megges Herlind Department of Psychiatry and Psychotherapy, Charite CBF, [email protected] Germany Meiland Franka J.M. VU University Medical Center & EMGO Institute for Health and [email protected] Care Research Amsterdam, Netherlands Meyer Saskia Alice Salomon University for Applied Sciences, Berlin, Germany [email protected] Michel Jacqueline Verena Faculty of Health, Medicine and Life Sciences, Maastricht [email protected] University, The Netherlands Michel Olivier Memory Clinic, University Hospital, Rennes, France [email protected] Michikawa Makoto Nagoya City University, Nagoya, Japan2 [email protected] Miranda-Castillo Claudia Universidad de Valparaíso, Valparaíso, Chile [email protected] Mitchell Gary Queen’s University, Belfast and Dementia Care Unit Northern [email protected] Ireland, United Kingdom Möller Anders Ageing and Health, Norwegian Centre for Research, Education [email protected] and Service, Tønsberg Molinuevo José Luis Pasqual Maragall Foundation & Hospital Clínic, Barcelona, Spain [email protected] Mollard Judith France Alzheimer, Paris, France [email protected] Moniz-Cook Esme University of Hull, United Kingdom [email protected] Mormal Marguerite Alzheimer Belgique, Belgium [email protected] Morris Evan Cheshire Fire and Rescue Service, United Kingdom [email protected] Morvan Patrick Mutualité Sociale des Portes de Bretagne, Rennes, France [email protected] Murray Joanna King’s College London, London, United Kingdom [email protected]

103 23rd Alzheimer Europe Conference

Final Programme / Index of Authors

Name Affiliation E-mail

Murtagh Fliss King’s College London, London, United Kingdom [email protected] N Nadsasarn Angkana Northern Neurological Center, Medical Chiang Mai University, [email protected] Chiang Mai, Thailand Naidoo Marian United Reform & Universiy of Bath & Naidoo and Associates, [email protected] United Kingdom Naidoo Shaun Naidoo and Associates, United Kinghdom [email protected] Naldahl Karin University College of Northern Denmark (UCN), Nursing School, [email protected] Hjoerring, Denmark Nay Rhonda Australian Institute for Primary care & Ageing (AIPCA), La Trobe [email protected] University, Australia Neloska Lence Gerontology Institute 13 November, Skopje, R. Macedonia [email protected] Ngandu Tiia National Institute for Health and Welfare (THL), Helsinki, Finland [email protected] Ngatcha-Ribert Laëtitia Fondation Médéric Alzheimer, 30 rue de Prony, 75017 Paris, France [email protected] Nijhuis van der Sanden Ria UMC St. Radboud, IQ healthcare, Nijmegen, Netherlands [email protected] Nika A. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Nikolaou C. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Nugent Chris University of Ulster, Jordanstown, Northern Ireland [email protected] Nurock, Shirley Alzheimer’s Society, London, United Kingdom [email protected] Nygård Louise Karolinska Institutet, Stockholm, Sweden [email protected] O Octave-Rolland Coralie University Paris Ouest, Nanterre, France [email protected] Öhman Annika Karolinska Institute, Stockholmn Sweden [email protected] Olde Rikkert Marcel UMC St. Radboud, Alzheimer Center-Dept. Geriatrics, Nijmegen, [email protected] Netherlands Oppikofer Sandra University of Zurich, Center of Gerontology, Switzerland [email protected] Orgeta Vasiliki University College London, London, United Kingdom [email protected] Orrell Martin University College London, London, United Kingdom [email protected] Osborne Sally Victoria University, Melbourne, Australia [email protected] Owen-Jones Elly University of Manchester, Manchester, United Kingdom Elly.Owen-Jones @manchester.ac.uk P Päjäla Krista Alzheimer Society of Finland, Helsinki, Finland [email protected] Palermiti Federico Association monégasque pour la recherche sur la maladie [email protected] d’Alzheimer (AMPA), Monaco, Monaco Palma Paola Bournemouth University, Bournemouth, United Kingdom [email protected] Palomäki Sirkka-Liisa Seinäjoki University of Applied Sciences,School of Health Care [email protected] and Social Work, Finland Pantoleon Maria Helioupolis Municipal. Social Service, Greece Papagianni M. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Paraskevas Georgios Department of Neurology, Eginitio Hospital, University of [email protected] Athens, Athens, Greece Parkes Jacqueline University of Northampton, Northampton, United Kingdom [email protected] Pascoe Ann Dementia Friendly Communities Social Enterprise, United [email protected] Kingdom Pearson James Alzheimer Scotland, United Kingdom [email protected] Pearson June Northumberland, Tyne & Wear NHS Trust, United Kingdom [email protected]

104 Living well in a dementia-friendly society / Malta 2013

Final Programme / Index of Authors

Name Affiliation E-mail

Pentzek Michael Department of General Practice, Faculty of Medicine, Heinrich- [email protected] Heine University Duesseldorf, Germany Peters Oliver Department of Psychiatry and Psychotherapy, Charite CBF, [email protected] Germany Petkova Hristina King’s College London, London, United Kingdom [email protected] Phillips Gill Nutshell Communications Ltd, Coventry, United Kingdom [email protected] Phillips Helen University of Plymouth, Plymouth, United Kingdom [email protected] Pirozzi Mariacarmina Alzheimer Uniti Onlus, Italy [email protected] Plunger Petra Alpen Adria University, IFF, Institute Palliative Care & [email protected] Organisational Ethics, Vienna, Austria Pohlidalova Anna Department of Epidemiology and Public Health, Faculty of [email protected] Medicine, University of Ostrava, Czech Republic Politis Antonis 1st Psychiatric Department Eginition Hospital, Athens Medical [email protected] School Pool Robert University of Amsterdam, Amsterdam, Netherlands [email protected] Poppe Michaela University College London, London, United Kingdom [email protected] Potamianou D. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Poudevida Sandra Pasqual Maragall Foundation, Barcelona, Spain [email protected] Pousard Ingegärd European Working Group of People with Dementia, Alzheimer [email protected] Europe, Sweden Povova Jana Department of Epidemiology and Public Health, Faculty of [email protected] Medicine, University of Ostrava, Czech Republic Praet Jean Philippe University hospital st pierre, Belgium [email protected] Preston Nancy University of Manchester, Manchester, UK [email protected] Q Qazi Afifa North East London Foundation Trust, London, United Kingdom [email protected] Quasdorf Tina German Center for Neurodegenerative Diseases (DZNE) & [email protected] University Witten/Herdecke, Witten, Germany R Ragni Silvia Centro Alzheimer Fondazione Roma, Italy [email protected] Ramsden Shahana Think Local, Act Personal (TLAP), London, UK [email protected] Reilly Siobhan University of Manchester, Manchester, UK [email protected] Reisberg Barry NYU, School of Medicine, New York, United States [email protected] Rick Patt RadMD, New York, USA [email protected] Riesner Christine German Center for Neurodegenerative Diseases (DZNE), and [email protected] Faculty of Health, University Witten/Herdecke, Witten, Germany Rietsema Jan Minase Consulting, Tilburg, Netherlands [email protected] Riikonen Merja Seinäjoki University of Applied Sciences,School of Health Care [email protected] and Social Work, Finland Roel Wendy Radboud University Nijmegen, Netherlands [email protected] Rohra Helgha European Working Group of People with Dementia, Alzheimer [email protected] Europe, Germany Rosenberg Lena Karolinska Institutet, Stockholm, Sweden [email protected] S Saad Karim Association for Dementia Studies, University of Worcester, [email protected] United Kingdom Samsi Kritika King’s College London, London, United Kingdom [email protected] Saraymen Recep Erciyes University, Medicine Faculty, Biochemistry Department, [email protected] Turkey

105 23rd Alzheimer Europe Conference

Final Programme / Index of Authors

Name Affiliation E-mail

Scerri Anthony University of Malta, Msida, Malta [email protected] Scerri Charles University of Malta, Msida, Malta [email protected] Scerri Josianne University of Malta, Msida, Malta [email protected] Schaefer-Walkmann Baden-Wuerttemberg Cooperative State University Stuttgart, [email protected] Susanne Germany Scheltens Philip VU Unversity Medical Center, Amsterdam, Netherlands [email protected] Schneider Cornelia Salzburg Research Forschungsgesellschaft m.b.H., Salzburg, [email protected] Austria Schwarz Sabine German Center for Neurodegenerative Disease (DZNE), [email protected] Rostock/Greifswald & German Alzheimer Association, Section Mecklenburg-Western Pomerania, Rostock, Germany Sellaeg Wenche Frogn Norwegian Health Association, Oslo, Norway [email protected] Sery Omar Department of Biochemistry, Faculty of Science, Masaryk [email protected] University Brno, Czech Republic Seyfang Leonhard Danube University Krems [email protected] Shamsi Kohkan RadMD, New York, USA [email protected] Shipman Cathy King’s College London, London, UK [email protected] Short Vicky University of Manchester, Manchester, UK Vicky.short@ manchester.ac.uk Shun-Ku Lin National Yang-Ming University, Taipei City & Taipei City Hospital, [email protected] Taipei City, Taiwan Singhanter Sasiwimol Baan Mee Suk Nursing Home, Chiang Mai, Thailand [email protected] Sitskoorn Margriet Tilburg University, Netherlands [email protected] Sixsmith Judith University of Northampton, Northampton, United Kingdom [email protected] Skapinakis Petros Department of Psychiatry, University of Ioannina School of [email protected] Medicine Slevin Dermod European Working Group of People with Dementia, Alzheimer [email protected] Europe, Ireland Smith Janine North East Lincolnshire Care Trust Plus, United Kingdom [email protected] Smythe Analisa Birmingham & Solihull Mental Health Foundation Trust, United [email protected] Kingdom Snell Rozel European Working Group of People with Dementia, Alzheimer [email protected] Europe, Jersey Solias Andreas 1st Psychiatric Department Eginition Hospital, Athens Medical [email protected] School Somme Dominique Memory Clinic, University Hospital, Rennes, France [email protected] Span Edith M.A.S Alzheimerhilfe Bad Ischl & Danube University, Krems, [email protected] Austria Span Ursula M.A.S Alzheimerhilfe Bad Ischl, Austria [email protected] Spanja Bojan European Working Group of People with Dementia, Alzheimer [email protected] Europe, Slovenia Speck Peter King’s College London, London, United Kingdom [email protected] Spector Aimee University College London, London, United Kingdom [email protected] Spiru Luiza Ana Aslan Interntional Foundation, Bucharest, Romania [email protected] Spiteri Deborah Department of Psychology, University of Malta, Msida MSD [email protected] 2080, Malta Splaine Michael Splaine Consulting, Columbia, USA [email protected] Stafford Jane Oxford Health NHS foundation trust, Oxford, UK [email protected] Staniloiu Angelica University of Bielefeld, Bielefeld, Germany and University of [email protected] Toronto, Toronto, Canada Stigen Linda The City of Oslo resource Centre for Geriatric Care, Oslo, Norway [email protected]

106 Living well in a dementia-friendly society / Malta 2013

Final Programme / Index of Authors

Name Affiliation E-mail

Sui-Hing Yan Taipei City Hospital, Taipei City, Taiwan [email protected] Synnes Kare Lulea University of Technology, Lulea, Sweden [email protected] Szabo Zoltan Faculty of Biomedical Engineering, Czech Technical University in [email protected] Prague, Kladno, Czech Republic T Tamprawate Surat Northern Neurological Center, Medical Chiang Mai University, [email protected] Chiang Mai, Thailand Tanabe Chiaki Iwate Medical University, Yahaba, Japan [email protected] Tarzia Laura Australian Institute for Primary care & Ageing (AIPCA), La Trobe [email protected] University, Australia Tatzer Verena Alpen Adria University, IFF, Institute Palliative Care & [email protected] Organisational Ethics, Vienna, Austria Teirpel Stefan German Center for Neurodegenerative Disease (DZNE), Rostock/ [email protected] Greifswald & Department of Psychosomatic Medicine, University Hospital Rostock, Rostock, Germany Templeton Michelle Queen’s University, Belfast, United Kingdom [email protected] Thuné-Boyle Ingela University College London [email protected] Thyrian René DZNE Rostock/ Greifswald - German Center for [email protected] Neurodegenerative Diseases within the Helmholtz Association, Germany Todd Chris University of Manchester, Manchester, United Kingdom Chris.todd@ manchester.ac.uk Tomaskova Hana Department of Epidemiology and Public Health, Faculty of [email protected] Medicine, University of Ostrava, Czech Republic Tongsong Worawan Stroke Center, Maharaj Nakorn Chiang Mai Hospital, Chiang Mai, [email protected] Thailand Toot Sandeep North East London NHS Foundation Trust, London, UK [email protected] Touriki E. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Tsolaki Magda Greek Alzheimer Disease and Related Disorders Association, [email protected] Thessaloniki, Greece Turci Marina AUSL Modena, Italy [email protected] Turcu Ileana Ana Aslan Interntional Foundation, Bucharest, Romania [email protected] V Vamvakari E. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece van Boxtel Martin Alzheimer Centre Limburg, Maastricht, Netherlands [email protected] van der Röest Henriëtte G. VU University Medical Center Amsterdam, Netherlands [email protected] van Dijk Marijke VU University Medical Center, Amsterdam, Netherlands [email protected] van Hoof Joost Fontys EGT, entre for Health Care & Technology, Eindhoven, [email protected] Netherlands van Hout Hein VU University Medical Center Amsterdam, Netherlands [email protected] van Mierlo Lisa VU University Medical Center Amsterdam, Netherlands [email protected] Vankova Hana CELLO-ILC-CZ Faculty of Humanities Charles University in Prague [email protected] and Centre of Gerontology Prague, Czech Republic Vaudano Elisabetta Innovative Medicines Initiative, Brussels, Belgium [email protected] Veen Dinja Radboud University Nijmegen Medical Center, Scientific Institute [email protected] for Quality of Healthcare - Alzheimer Center Nijmegen & Allied Health Care, Netherlands Vella Kristina University of Nottingham [email protected] Verbakel Jan ACHG, Leuven, Belgium [email protected] Verhey Frans Alzheimer Centre Limburg, Maastricht, The Netherlands [email protected]

107 23rd Alzheimer Europe Conference

Final Programme / Index of Authors

Name Affiliation E-mail

Vernooij-Dassen Myrra Radboud University Nijmegen Medical Center, Scientific Institute [email protected] for Quality of Healthcare- Alzheimer Center Nijmegen & Nursing home Kalorama, Netherlands Villez Marion Fondation Médéric Alzheimer, Paris, France [email protected] Viteckova Slavka Faculty of Biomedical Engineering, Czech Technical University in [email protected] Prague, Kladno, Czech Republic Vlachogianni A. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Vollmar Horst Christian Department of General Practice, Faculty of Medicine, Heinrich- [email protected] Heine University Duesseldorf, Germany von Kutzleben Milena German Center for Neurodegenerative Diseases (DZNE), Witten, [email protected] Germany W Wallace Daphne European Working Group of People with Dementia, Alzheimer [email protected] Europe, England, United Kingdom Ward Richard University of Stirling, Stirling, United Kingdom [email protected] Watts Sue Greater Manchester West Mental Health NHS FT, United Kingdom [email protected] Whittaker Rhiannon University of Bangor, Wales, United Kingdom [email protected] Wija Petr CELLO-ILC-CZ Faculty of Humanities Charles University, Prague [email protected] and Centre of Gerontology, Prague, Czech Republic Wilcock Jane University College London, London, United Kingdom [email protected] Wilkening Karin University of Zurich, Center of Gerontology, Switzerland [email protected] Willig Simone Musik auf Raedern – ambulante Musiktherapie, Germany [email protected] Willner Victoria Salzburg Research Forschungsgesellschaft m.b.H., Salzburg, [email protected] Austria Wilm Stefan Department of General Practice, Faculty of Medicine, Heinrich- [email protected] Heine University Düsseldorf, Germany Wils Maartje University Hospital Leuven, Leuven, Belgium [email protected] Wolf-Ostermann Karin Alice Salomon University of Applied Sciences, Berlin, Germany [email protected] Wortmann Marc Alzheimer’s Disease International, London, United Kingdom [email protected] Wright Jan Birmingham & Solihull Mental Health Foundation Trust, United [email protected] KIngdom Z Zahra de Domenico Roberta University of Malta, Msida, Malta [email protected] Zehetner Felicitas M.A.S Alzheimerhilfe Bad Ischl, Austria [email protected] Zerafa Natalie University of Malta, Msida, Malta [email protected] Zincke dos Reis Maria do Alzheimer Portugal, Lisbon, Portugal [email protected] Rosário Zoi P. Athens Association of Alzheimer’s Disease and Related [email protected] Disorders, Athens, Greece Zischka Mathias Protestant University of Applied Sciences Rhineland-Westfalia- [email protected] Lippe, Bochum, Germany Zou Kun Iwate Medical University, Yahaba, Japan1 [email protected]

108 Living well in a dementia-friendly society / Malta 2013

Notes

109 23rd Alzheimer Europe Conference

Notes

110 Mark the dates!

24th Alzheimer Europe Conference

Dignity & autonomy in dementia

Glasgow, United Kingdom 20-22 October 2014 23rd Alzheimer Europe Conference Living well in a dementia-friendly society Malta / 10–12 October 2013

Programme and Abstract Book

Organisers

Host organisations

The 23rd Alzheimer Europe Conference in St. Julian’s, Malta is organised by:

Alzheimer Europe 145, route de Thionville L-2611 Luxembourg Luxembourg Tel.: +352-29 79 70 Fax: +352-29 79 72 [email protected] www.alzheimer-europe.org

and

Malta Dementia Society c/o Room 135, Department of Pharmacy University of Malta, Msida MSD 2080 Malta [email protected] www.maltadementiasociety.org.mt

MALTA DEMENTIA SOCIETY