For all who work with people with dementia Vol 10 No 1 January/February/March 2021 Dementia care in rural & remote Australia 48-page special issue

Also inside n Telehealth in Indigenous communities n Rethinking rural care this issue: n The right to public space n Dementia-inclusive theatre COMMENT

Australian Journal of Dementia Care Improving rural dementia care Editorial Team Co-Editors: Professor Belinda Goodenough; Associate Professor By Professor Jane Farmer, Director, Lyn Phillipson; Dr Louisa Smith Swinburne Social Innovation Research Institute Managing Editor: Kerry Schelks Contributing Editor: Catherine Ross Production Editor: Andrew Chapman aving spent much of my career researching rural communities and services, I suggest there are three issues that – if tackled – would Editorial Advisors Hhelp to make a difference in rural and remote dementia care. These Dr Marita Chisholm, Innovation and are reflected in articles in this issue of AJDC and in the recent book I co-edited, Remote and Projects Manager Older Persons Rural Dementia Care: Policy, Research and Practice (Innes et al 2020) [see p44]. They are: Health, Rural Northwest Health • Better operationalising care as an ecosystem that makes best use of what is available Mr Dennis Frost, person living with locally, distant and online. dementia and dementia advocate; • Embracing people living with dementia as integral to our rich, ongoing community life. Chair of the Southern Dementia • Understanding dementia as a multi-faceted phenomenon, woven from different cultural, Advisory Group social and biomedical aspects. Ms Lynda Henderson, carer for a As Gardiner et al highlight in this issue (see p35), rural is a distinct service provision person living with dementia; member of space. Internationally, rural populations are ageing, so proportionately rural regions are the Southern Dementia Advisory Group more affected by dementia than cities. Small numbers of people living with dementia in Dr Claire O’Connor, Research Fellow, individual rural places means practitioners may lack experience with dementia. Rural HammondCare; Conjoint Lecturer, people tend to experience layers of adversity, including higher levels of poverty, fewer School of Population Health, UNSW economic opportunities and reduced access to services compared with cities (Lawrence- Associate Professor Lezanne Ooi, Bourne et al 2020). Consequently, dementia may not have highest priority. Principal Research Fellow, University of Care ecosystems: discussion of services for rural places can sometimes seem like a contest Wollongong and the Illawarra Health between online and on-the-ground provision (Perkins et al 2019). Articles in this issue and Medical Research Institute highlight that, in fact, marrying across service offerings is a sensible way ahead. Dr Chris While, Training Consultant, Internationally, there exist some good ideas that can support rural dementia care: WHO Dementia Training Australia; Research has the mhGAP program, a toolkit that can build local skills and knowledge in dementia Fellow, La Trobe University and the care (WHO 2019) and Austria developed the Dementia Service Centre model that helps Australian Centre for Evidence Based rural families, carers and service teams work together around the evolving needs of a Aged Care person living with dementia (Auer et al 2020). Publisher: The Australian Journal of ‘It takes a village’: as highlighted by Leone et al in this issue (p24), people with dementia Dementia Care is published by the should be able to access the full range of services and amenity, as their human right. University of Wollongong and managed However, there are gaps in opportunities for people with dementia to lead enjoyable, by Dementia Training Australia, including thriving lives in communities once they are diagnosed – an issue which surely mitigates website and administrative support against seeking out the early diagnosis that professionals advise. Empathy is a powerful from: Owen Wilkinson, Emma Paul, force, and when I read this lived experience – written for inclusion in our book – my Janice Hurley, and Vanessa Bussoletti understanding of some of the challenges rural residents face began to take shape: Printed by iPS, Sydney. “When I was told I had early onset Alzheimer’s disease I was alone, and I had to get into my car © 2021 University of Wollongong and drive alone for two hours afterwards… for a long time, I couldn’t find the courage to tell anyone. ISSN 2049-6893 Living in a rural area, everyone knows everyone. I had owned a business and lived on the main street… I worried about the reaction of my town. Would they think I was mad?” (Rochford- Editorial and advertising inquiries Brennan 2020 pp268-272). Kerry Schelks The author concluded that ultimately though “it takes a village to support a person [email protected] living with dementia” (p267). With determination, Helen Rochford-Brennan found new Address Building 232 (Mike Codd), ways to live her life in the village, in the process educating her neighbours that people Room 113, Innovation Campus, living with dementia can continue to lead valuable thriving lives. University of Wollongong, NSW 2522, Two-eyed seeing: Lastly, my readings in rural dementia care have led me to understand the Australia value of seeing dementia experiences from the perspectives of different knowledge Website systems and cultures. In our book, Jacklin and Chiovotte (2020) discuss working with www.journalofdementiacare.com Canadian First Nations communities and the significance of marrying Indigenous beliefs Subscriptions $99 (four issues) about dementia with Western biomedical perspectives: “two-eyed seeing” they called it, (see page 48 for details). noting that, “Indigenous populations place less emphasis on the Western diagnostic labels Disclaimer: The opinions expressed in the Australian and biomedical perspectives associated with cognitive decline” (p246). The authors depict Journal of Dementia Care are those of the authors and are not necessarily those of the publisher. Furthermore dementia care with Canadian First Nations communities as best achieved through the publisher and authors do not assume and hereby interweaving traditional cultural beliefs, biomedical interventions and feelings and disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether experiences related to colonisation. In line with this, it was interesting to read Haszard’s such errors or omissions result from negligence, commentary in this issue (p32) about a DSA consultant in Alice Springs who adopted the accident, or any other cause. Malparara Way – “a cross-cultural practice model developed in the early 1990s”. While the issues I’ve discussed above for improving rural dementia care are significant AJDC DEADLINES 2021: April/May/June: 27/01/21 (submissions); 12/04/21 (publication); in all places, perhaps there are more opportunities to achieve change in rural places where July/Aug/Sept: 23/04/21 (submissions); people still tend to know each other, to look out for each other and where there are policy 12/07/21 (publication); Oct/Nov/Dec: 23/07/21 moves to more place-based delivery. The pandemic has shown that service provision can (submissions); 11/10/21 (publication). Details: change overnight, as the examples highlighted in this issue show. ■ https://journalofdementiacare.com/submissions/ *The Reference list is available on the AJDC website, www.journalofdementiacare.com

2 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 Inside For all who work with people with dementia Vol 10 No 1 January/February/March 2021 this issue...

This special 48-page issue of AJDC focuses on dementia care in rural and remote areas of Australia, with articles describing how service organisations and researchers are addressing 9 the specific challenges of providing care and support services in these locations.

■ Project updates & viewpoints Dementia-inclusive theatre 9 Althea Gordon and Tina Firth report on the results and lessons learnt from an innovative arts project in which aged care residents living with dementia participated in eight performances held in their aged care home, in front of audiences of carers, families and the wider community New beginnings: design to support engagement 12 Samantha Neylon and Ruth Payne describe the process of transforming a former convent building into a purpose-built dementia-friendly care home supporting a Montessori approach to dementia care 12 Reimagining Dementia: A Creative Coalition for Justice 16 Reimagining Dementia is an international group of dementia activists and allies who share a vision that challenges biomedical and institutional approaches to care. Coalition Coordinator Mary Fridley explains Dancing through lockdown 18 Gwen Korebrits explains how Dance Health Alliance has enabled people living with dementia to keep active and dancing throughout the COVID-19 lockdowns ■ Rural & remote dementia care Extending dementia care into Indigenous communities 19 The University of Queensland’s Centre for Online Health (COH) is an internationally regarded leader in 19 the field of telehealth. In this article, Anthony Smith (COH Director) and members of his research team explain how telehealth is being used to connect dementia specialists to selected Aboriginal and Islander Community-Controlled Health Services in Queensland A rights-based approach to dementia-inclusive public spaces 24 People living with dementia and their carers in rural and regional areas face particular challenges around loneliness and isolation, heightened by a lack of access to dementia-inclusive outdoor and public spaces. Carmela Leone, Rachel Winterton and Irene Blackberry are undertaking a study in rural and regional Victoria exploring the rights of people with dementia and carers AJDC Journal Club at work 27 Transitional Nurse Practitioner Sandy Everson, from the Mid North Coast Local Health District in NSW, explains how she uses the AJDC to facilitate a Journal Club with her team Regulars KT shapes new environments resources 28 ■ DTA Environments Team Service Manager Fallon Forbes shares how Knowledge Translation (KT) Comment principles helped inform her team’s response to meeting the education and training needs of the dementia by Professor Jane Farmer 2 care workforce, especially those in regional, rural and remote Australia – in the year of a pandemic ■ Rethinking rural dementia care 30 News 4 Marita Chisholm, Kaye Knight, Catherine Ramsdale, Jo Martin and Wendy James describe how a big effort by their small Victorian health service to do things differently during two COVID-19 lockdowns ■ Research News 42 helped people with dementia living in the community and residential aged care ■ Community links key to pandemic support 32 Resources 44 Andrew Haszard explains how Dementia Support Australia and its team of Dementia Consultants have supported people with dementia and care services in rural and remote areas of Australia before and during the COVID-19 pandemic and the specific challenges faced by people in those communities ■ Research Focus Lack of dementia services may contribute to retrievals 35 Fergus Gardiner, Noel Collins, Mathew Coleman and Frank Quinlan report on a cross-sectional review of data for patients with dementia requiring aeromedical retrieval by the Royal Flying Doctor Service Cover image: Herb, a Royal Flying Doctor Training dental practitioners in dementia and aged care 38 Service (RFDS) patient in Tilpa, in Far Archana Pradhan and Ratilal Lalloo evaluated an Australian-first online learning program for dentists West NSW. See article pp35-37. Photo: on providing oral health care for people with dementia Royal Flying Doctor Service of Australia

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 3 NEWS

News in brief Govt funds 33,000 new home care packages

DCRC grants announced For a third year in a row, the The October budget The Dementia Centre for Research Collaboration (DCRC) has Government has used the Mid- announcement committed a announced the successful applicants for an Implementing Research Year Economic and Fiscal total of $23.9 billion of funding Evidence into Practice Grant 2020. The grants, of up to $50,000 each, Outlook (MYEFO) in December for aged care in 2020-2021. have gone to Dr Claire O’Connor, Dr Christine While (both AJDC Editorial Advisors), Dr Jane Sluggett, Associate Professor Lyn to make new commitments to It included more than Phillipson (AJDC Co-Editor), Dr Loren Mowszowski, Associate funding aged care – on top of its $746 million in aged care Professor Susan Slatyer and Trinidad Valenzuela. The grant scheme’s October budget commitment of COVID-19 response measures main purpose is to support the implementation into practice of an $1.6 billion for an additional as part of the $1.6 billion in existing knowledge product or program that has previously been 23,000 home care packages. COVID-19-specific support in developed and piloted. Associate Professor Phillipson from the The additional funding aged care, as well as investment University of Wollongong, for example, will be looking at the use of announced in December of $408.5 million for aged care Talking Mats for supported home care planning for people with amounts to $1 billion, a large reform initiatives to improve dementia, while Associate Professor Slatyer from Murdoch University part of which ($850 million) the quality of care, further will be exploring the use of the ‘Focus on the Person’ form. Details: will fund a further 10,000 home respond to the urgent https://dementiaresearch.org.au/ care packages for older issues raised by the Royal Joint statement on carers Australians. The Government Commission into Aged Care Carers Australia and Dementia Australia issued a two-page Joint says it is continuing to build on Quality and Safety and lay the Position Statement during National Carers Week (11-17 October 2020) the reform process for the foundations for future reform. on the issue of discrimination faced by people living with dementia and delivery of care in the home as Particular commitments also their family and care partners. The two organisations say the key proposed by the Royal within the allocation for aged to systemic change is better educated communities and better Commission into Aged Care care reform ($408.5 million) educated families. The Statement outlines seven recommendations to Quality and Safety. included: alleviate discrimination faced by carers of people living with dementia, The December funding • dementia training and including an awareness campaign, additional carer support services announcement also includes: psychosocial support (respite, support groups, counselling), education and training for • An additional $57.8 million ($11.3 million) carers, holistic assessment and support for carers within aged care for aged care under the • implementation of the Aged support packages. “It is vital that the unpaid carers of people living with dementia are able to live a life free from discrimination,” said Carers National Partnership on Care Workforce Strategy Australia CEO Liz Callaghan and Dementia Australia CEO Maree COVID-19 Response. ($10.3 million) McCabe. • $63.3 million to support • keeping young people out of increased access to allied residential aged care Hearing loss and dementia study health services and improved ($10.6 million) The Royal Perth Hospital (RPH) Research Foundation is giving mental health care supports • preparatory work for a new $600,000 to support a 24-month randomised clinical trial involving a for people in residential aged funding model to support team of Western Australian researchers and healthcare workers care. better care ($91.6 million) joining forces to find out if using hearing aids is an effective way to • $8.2 million to extend the • support for the Royal delay the onset of dementia symptoms. The trial is being led by Dr Victorian Aged Care Commission ($4.1 million) Andrew Ford of the East Metropolitan Health Service (EMHS) and Dr Response Centre until 30 June • support through the Business Dona Jayakody, Audiologist and Research Lead for the Cognition and Hearing Loss Project at Ear Science Institute Australia (ESIA). RPH 2021. Improvement Fund Research Foundation CEO Joce Young said she looked forward to • Another $11.1 million over ($35.6 million) seeing the multidisciplinary teams translate their novel ideas into five years to help fast-track • investment in the Serious significant community healthcare innovations. To register interest in the implementation of the Incident Response Scheme participating in the study, email [email protected] or Serious Incident Response ($29.8 million); and phone 0409 623 367. Participants must be over 69 years, fluent in Scheme (SIRS) (taking the • developing the single in-home English, experiencing hearing loss in both ears (age-related hearing total investment in the support program for older loss) and not have had hearing aids before. program to $67.2 million). people at home ($4.6 million). Disability Royal Commission’s Reports The Royal Commission into Violence, Abuse, Neglect and Exploitation Younger people in aged care strategy of People with Disability (the Royal Commission) released its Interim The Morrison Government has announced new funding and a strategy for Report on 30 October 2020, as well as a special COVID-19 report in reducing the number of younger people living in residential aged care. November. The Interim Report sets out what the Royal Commission According to the Minister for the National Disability Insurance Scheme, has done in its first 15 months, up until 31 July 2020 (which includes Stuart Robert, and Minister for Aged Care and Senior Australians, Senator three public hearings, private sessions, engagement with the disability Richard Colbeck, the initiative includes $10.6 million in the 2020-21 Budget community, publication of issues papers, consideration of for a national network of up to 40 system coordinators to help younger people submissions) and the areas that the Royal Commission has identified find age-appropriate accommodation and supports to allow them to live as needing further investigation. It says that people with disability independently in the community. experience attitudinal, environmental, institutional and communication Mr Robert said the Younger People in Residential Aged Care (YPIRAC) barriers to achieving inclusion within Australian society and that a great Strategy 2020-2025 charts the course to meet the strengthened targets set by deal needs to be done to ensure that the human rights of people with the Government in late 2019 and builds upon the YPIRAC Action Plan released disability are respected and that Australia becomes a truly inclusive in March 2019. The YPIRAC targets seek to ensure, apart from in exceptional society. The Interim Report is available in a variety of formats from the circumstances, there are no people under the age of 65 entering residential aged Royal Commission’s website. care by 2022; no people under the age of 45 living in residential aged care by 2022; and no people under the age of 65 living in residential aged care by 2025.

4 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 NEWS

By Request campaign brings aged care residents and musicians together Anglicare Southern preparedness, it was equally Queensland’s Abri Aged important to consider the Care Home in Southport hosted mental wellbeing of residents. a memorable concert on She said the campaign 21 October 2020 – with four- provides a great example of time ARIA award winner Katie how technology can be Noonan performing with harnessed to keep people resident Paul ‘Fluffy’ Jansen in connected and lift spirits. front of 20 other residents. In November, Anglicare The event was part of the Southern Queensland was provider’s campaign called By named as the Asia-Pacific’s Request: A Playlist of ‘Best Home Care Operator’ in Memories, which has brought the Eldercare Innovation together aged care residents Awards in Singapore. and talented musicians from Four-time ARIA award winner Katie Noonan and Abri Aged Care across Australia. The Home resident and drummer Paul ‘Fluffy’ Jansen soak up the livestreamed concert can be applause after the concert watched here: https://bit.ly/by-request- in October, have both been live Queensland Executive concert streamed to all of the Director Karen Crouch said, The By Request campaign providers’ aged care homes in “The By Request series was began with eight ‘everyday Queensland. produced across three states Queenslanders’ living in aged Artists who participated in during COVID-19 restrictions, care homes being filmed the project included Katie with the artists filming their sharing the personal story Noonan, Isaiah Firebrace, Jess own videos and our team behind their favourite song, & Matt, Rai Thistlethwayte editing them together with our which was then performed – (Thirsty Merc), Adam residents’ reactions,” she said. to the resident’s surprise – by a Eckersley and Brooke Ms Crouch said while it was well-known Australian McClymont, Emma Birdsall, critical that aged care musician. This series of and Kate Miller-Heidke. providers remained focused performances, and the concert Anglicare Southern on their COVID-19 Paul ‘Fluffy’ Jansen on drums

Alzheimer’s drug decision due in March: The US Food and Drug Administration (FDA)’s Peripheral and Central Dementia Innovation Nervous System Drugs Advisory Committee met in November and delayed a decision on approving aducanumab – Biogen’s new drug for treating Alzheimer’s disease – with a decision on whether to approve the drug expected on Readiness Index 7 March 2021. Biogen’s Phase 3 EMERGE and ENGAGE studies for testing aducanumab were ceased in March 2019 but in October 2019 the company announced it would seek FDA approval after analysis of a larger dataset showed London has ranked the promising results. Aducanumab is an antibody treatment that targets and clears amyloid plaques from the brain and highest of 30 major cities is administered by a monthly intravenous infusion. globally, and Sydney eighth, in terms of city-level ‘innovation readiness’ to dementia. The DEPARTMENT OF HEALTH NEWS ranking is presented in Alzheimer’s Disease SIRS to commence recipients who are prescribed nine or more medications; International’s (ADI) latest and percentage of care recipients who received The Federal Government has brought forward the Dementia Innovation Readiness antipsychotic medications) and ‘Falls and major injury’ Index, launched by ADI with introduction of the Serious Incident Response Scheme (percentage of care recipients who experienced one or the Global Coalition on Aging (SIRS) to 1 April 2021, subject to parliamentary processes, more falls; and percentage of care recipients who with an additional $29.8 million of funding for SIRS for experienced one or more falls resulting in major injury). (GCOA) and the Lien residential aged care. The Government says $26.3 million The new quality indicators are being included following Foundation. has already been spent establishing the new system for an extensive development process and national trial. The Index reviewed 30 cities reporting abuse or serious incidents in aged care facilities. globally and concluded that As part of the SIRS, residential aged care providers will be AN-ACC tool cities around the world have required to manage all incidents, with a focus on the safety not fully leveraged and wellbeing of consumers and reducing preventable The Australian Government says it has not made a final opportunities to support the incidents from reoccurring. The Aged Care Quality and decision on whether to implement the new funding model development or adoption of Safety Commission will be responsible for administering for residential aged care – known as the Australian innovations in dementia care, the SIRS and will have powers to take regulatory action National Aged Care Classification (AN-ACC) tool – but where appropriate to address non-compliance. that it will fund a year of ‘shadow assessment’ to start in treatment and support and the first half of 2021. During this assessment period, the must take on a leadership role. New quality indicators AN-ACC tool will be used to assess all existing and new It says a willingness to act at a Medication management is to feature as one of two new aged care residents, and assign them with an AN-ACC local leadership level is crucial quality indicators to be included in the National Aged class – even though the current funding assessment tool, to a city’s preparedness and Care Mandatory Quality Indicator (QI) Program from 1 the Aged Care Funding Instrument (ACFI) will continue to ability to innovate. The report July 2021. The two new quality indicators relate to operate during this period and be the mechanism through includes a number of ‘Medication management’ (percentage of care which funding assessments continue to be made. ‘Promising Practice’ profiles.

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 5 NEWS

COVID-19 NEWS

Support line expanded and resources for aged care In November the Australian Visiting guidance residents, their families and Government announced it In May 2020, 13 aged care peak bodies and consumer advocacy aged care staff, including would be investing $2.5 million organisations released the ‘Industry Code for Visiting Residential Aged Care through the establishment in extending and expanding Homes during COVID-19’ to facilitate a nationally consistent approach of a dedicated website, from ensuring residents can receive visitors while minimising the risk of the Older Persons COVID-19 Phoenix Australia, the spreading COVID-19. The code has since been reviewed on multiple Support Line until 30 June occasions, with a fifth version released on 20 November 2020. To access Centre for Posttraumatic 2021 – with the extended the code, go to COTA Australia’s website ( www.cota.org.au/). Mental Health. service to include outbound calls to carers of people living In November, the Australian Health Protection Principal Committee Dementia Australia paper with dementia, as well as (AHPPC) issued updated ‘Visitation Guidelines for Residential Aged Care One Day the Support was Gone more specific community Facilities’ which presents a new three-tier escalation plan, outlining how is the title of Dementia supports for culturally and providers can respond to the COVID-19 threat level in the local community Australia’s latest discussion linguistically diverse (CALD) and ramp the response up or down as needed. The Australian Government paper, which explores the has also issued a three-tier guidance on actions aged care providers should older people. mental health impact of take in response to a situation of escalating or de-escalating COVID-19 threat level in the local community. All documents can be accessed via the COVID-19 on people living Updated Department of Department of Health website (www.health.gov.au/). with dementia, their families Health information and carers in Australia. The Department of Health has The discussion paper issued a seventh edition of its care facilities, and failed to Government’s Grief and presents findings from a June ‘National COVID-19 Aged accept full responsibility for Trauma Response Package, 2020 survey of Dementia Care Plan’. This includes an the sector despite being the announced in October 2020. Australia’s Dementia appendix titled ‘Annotated government responsible for Dementia Support Advocates (people living with summary of COVID-19 aged funding and regulating aged Australia is one of three dementia and family carers) care resources’, which lists care in Australia”. It also says organisations tasked with on the impact of COVID-19 over 60 resources from a that the Aged Care Quality delivering the Federal on people living with range of government agencies and Safety Commission failed Government’s Grief and dementia and carers, and organisations with a brief to use all of its available Trauma Response Package – combined with analysis of introduction to each resource. regulatory powers to ensure aimed at ensuring support is qualitative and quantitative Go to www.health.gov.au/ the safety of aged care available across Australia for primary research conducted and click on ‘Resources’. residents. Coalition members those affected by COVID-19 by a research team led by of the Committee produced a across the aged care sector. Professor Yun-Hee Jeon at the Govt ‘failed to prepare dissenting report setting out The $12.4 million package is University of Sydney, and sector’: report responses to the interim part of the $171.5 million data obtained from the In December, the Senate Select findings, including actions COVID-19 response plan National Dementia Helpline. Committee tasked with taken by the Government that announced by the The paper’s findings reviewing the Federal they say disprove the Government in August 2020. confirm that people living Government’s response to findings. The other services include: with dementia are COVID-19 published an • Specialist information and experiencing poorer mental interim report, a chapter of Federal Government support to residential aged health outcomes from which focuses on the aged support for sector care and home care COVID-19 and the associated care sector. The Committee’s A proactive engagement recipients and their families restrictions, and that families conclusion is that the program to help alleviate the who have been affected by and carers are also reporting Australian Government impacts of lockdown on aged COVID-19, from The higher than usual levels of “failed to adequately prepare care residents living with Australian Centre for Grief stress and fatigue in caring for the aged care sector for dementia is a new service and Bereavement. someone at home. Further, COVID-19, was too slow to from Dementia Support • Sector-wide trauma- respite services are not respond to issues with Australia being offered as informed care package that meeting the increased outbreaks in residential aged part of the Federal provides trauma training demand.

Alzheimer’s Disease Data Initiative launched to share research worldwide

A new medical research organisation, related data among researchers from Workbench allows researchers to search Alzheimer’s Disease Data Initiative around the world. ADDI’s work has three existing databases on existing platforms, (ADDI), has been launched, along with its parts: the AD Workbench; the add new multidimensional datasets, key offer – the AD Workbench. This is a development of Tools for researchers; and combine data across multiple platforms cloud-based data platform to help funding for researchers, data scientists and and analyse new and existing datasets dementia researchers share data, resources anyone within the broader dementia using in-platform models. ADDI says AD and tools. ADDI has been created by a community, in order to crowd-source or Workbench is open, inclusive, global and coalition of partners, led by Gates promote the development and sharing of easy to use. Find out more at Ventures, to increase sharing of dementia- new data, tools, and analytics. AD www.alzheimersdata.org/

6 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 Dementia Essentials Provide support to people living with dementia (CHCAGE005)

Build your team’s expertise with this fully funded, nationally accredited course designed for aged care, healthcare and disability workers. This course offers skills and strategies to help with communication, planning, developing activities and understanding changed behaviours in people living with dementia. Staff can choose a mode of learning that works for their needs. We offer learning face- to-face, online via our virtual classroom – or a combination of both. This course is highly structured, combining theory and practical components for an engaging learning experience. Participants receive ongoing support from experienced facilitators throughout the program. Learn about: Delivery options: • person-centred care • face-to-face (18 hours) or • the nature of dementia • online and face-to-face (18 hours) or • effective communication • online and virtual classroom (18 hours) • impact of dementia • activities for engagement • identifying elder abuse and restrictive practices For more information please visit • understanding changed behaviours and dta.com.au/dementia-essentials developing effective responses • creating supportive environments.

This is a Dementia Training Australia (DTA) course, funded by the Australian Government under the Dementia and Aged Care Services Fund and delivered by Dementia Australia (RTO Code 2512). NEWS

$150m for rural, remote areas AUSTRALIAN DEMENTIA NETWORK NEWS

The Federal Government is making $150 million in capital grants funding Volunteer Portal: The Australian Dementia Network has set up an ADNeT available as part of the latest Aged Care Approvals Round, which opened on Volunteer Portal, a register for people who would like to participate in 18 December, with the focus on improving access to residential aged care research into the causes, prevention, and treatment of dementia. ADNeT services in areas outside major cities. Priority will be given to applications that is now inviting people aged 50 years and older who would like to be involve improving access to dementia care and improving service involved to review the participant information sheet and then supply environments to be more dementia friendly. answers to a few questions through a secure site. People living with Minister for Aged Care and Senior Australians, Senator Richard Colbeck, dementia, as well as people who do not have dementia, are welcome to said the $150 million in grant funding represents a major commitment to register. Depending on ADNeT’s current research needs, the person will regional, rural and remote Australia. then be contacted in relation to a more detailed assessment. To find out “Now is the time to back providers to develop and deliver quality residential more, go to ADNeT’s site at www.australiandementianetwork.org.au/ care services where they are needed most, as well as boost the economy through jobs creation in the construction and aged care sectors,” Minister Australian Dementia Forum: The Australian Dementia Network (ADNeT) Colbeck said. is to host the Australian Dementia Forum in 2021. The event will be The Prime Minister Scott Morrison’s Cabinet reshuffle in December saw delivered as a fully virtual conference in lieu of the face-to-face meeting the aged care portfolio elevated into Cabinet, with Greg Hunt (Health Minister) originally scheduled for the Adelaide Convention Centre and will be held on taking on the additional responsibility for the Government’s response to the 31 May 2021 to 1 June 2021. Keynote speakers have been announced for Royal Commission into Aged Care Quality and Safety. Senator Richard the virtual conference which will include live sessions, pre-recorded Colbeck retains responsibility for aged care services and regulation, as well presentations and live Q&As, interactive panel sessions, poster sessions, as retaining his responsibilities for Senior Australians and as Minister a Virtual Exhibit Hall, and on-demand access to selected content for for Sport. registered attendees following the conclusion of the conference. The call for abstracts has now closed but registration for the event opens on 1 February 2021. Find out more at https://eventstudio. eventsair.com/adf2021/ Writing for AJDC: Do you have a project or survey to report, or a change in practice organisation or structure which has worked well (or not), and would you like to share this experience with others? We welcome contributions of this kind, as well as bright ideas for improving the environment or well- ClinTrial Refer app: ADNeT has joined forces with Neuroscience Trials being of people with dementia, and letters to the editor responding to articles in AJDC. Email the Australia and with ClinRefer to launch the Dementia Trial App on the Editorial Team at [email protected] ClinTrial Refer app platform. ClinTrial Refer app is a free app which can be downloaded to a smart phone, enabling both clinicians and volunteer

The Australian Journal of Dementia Care is a multidisciplinary journal for all professional staff participants to have access to the latest information on dementia trials working with people with dementia, in hospitals, nursing and aged care homes, day units and the available in Australia, as well as information about recruitment status, trial community. The journal is committed to improving the quality of care provided for people with sites and contacts. A web version of the app is also available at dementia, by keeping readers abreast of news and views, research, developments, practice and www.clintrial.org.au (search all trials, select discipline: neurology, then training issues. The Australian Journal of Dementia Care is grounded firmly in practice and provides a lively forum for ideas and opinions. select dementia). ROYAL COMMISSION NEWS Final hearing and recommendations recommendations by Counsel Assisting. Dementia Australia CEO Maree McCabe said, “The proposed recommendations in the final submissions Counsel Assisting the Royal Commission into Aged Care Quality and indicate to us that concerns of people living with dementia, their families Safety has set out 124 recommendations it considers the Royal and carers have finally been heard.” Commissioners should make in their final report, due on 26 February 2021. COVID-19 report and response Headline recommendations include a new Act based on human rights A month after the Royal Commission into Aged Care Quality and Safety principles for older people, a new planning regime for aged care which published its special report into aged care and COVID-19, the Australian provides demand-driven access rather than the current rationed Government has responded by tabling its Implementation Progress approach, a new and independent process for setting aged care quality Report in Parliament on 30 November 2020. standards, mandated staffing ratios in residential aged care, and The Government said it had accepted and was acting on all six of the the establishment of an independent Australian Aged Care Commission Royal Commission’s recommendations, investing a further $132.2 million that will be responsible for administering and regulating the aged in funding to do so. care system. The Royal Commission’s recommendations addressed a range of Some of the other key recommendations include dementia and issues, including the provision of allied health services, the need for palliative care training for workers, establishment of a dementia support infection control officers within facilities, and the need for a national aged pathway, a review of specialist dementia care services, improving the care plan for COVID-19. design of aged care accommodation (by developing national aged care The Government’s $132.2 million package to deliver on the design principles and guidelines on accessible and dementia-friendly recommendations includes: design for residential aged care), and immediate funding for education • $63.3 million for a range of Medical Benefits Schedule (MBS) measures and training to improve the quality of care (and including on dementia). including mental and allied health support, and additional allied health The Counsel Assisting’s final written submissions were presented on group services. the final hearing day of the Royal Commission, on 22 and 23 October • $57.8 million to fund jurisdictions to support Infection Prevention and 2020, at which Senior Counsel Assisting, Peter Gray QC and Peter Rozen Control training within facilities. QC presented verbal submissions. • A further $11.1 million toward a Serious Incident Response Scheme. As well as the detailed recommendations proposed, the Counsel Assisting also included a summary of the evidence about what is wrong The Government says these measures offer not only an improvement with the existing aged care system and outlined how the current aged in access to mental and allied health services for senior Australians in care system should transition to the new system. The submissions can aged care, but also provide additional funding to GPs and allied health be viewed here: https://agedcare.royalcommission.gov.au/hearings-and- professionals delivering in-person care in facilities nationwide. It also workshops confirmed that the Department of Health has released an Updated Dementia Australia said it welcomed the inclusion of dementia-specific National COVID-19 Aged Care Plan (7th Edition).

8 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 Dementia-inclusive theatre Althea Gordon and Tina Firth report on the results and lessons learnt from an innovative arts project in which aged care residents living with dementia participated in eight performances held in their aged care home, in front of audiences of carers, families and the wider community

n September 2019, residents illustrated by Dr Stuart Brown of aged care home Mercy in his book Play: How It Shapes IPlace Mandurah in Western the Brain, Opens the Imagination, Australia took centre stage for and Invigorates the Soul (2010). a one-of-a-kind musical Theatre is now recognised as theatre production of A Year being able to assist people With Frog and Toad. People living with dementia by living with dementia were supporting their emotional, involved in every aspect of the social and cognitive wellbeing. production, along with other This has been further residents, staff, families and Cast members, including residents living with dementia, are identified through the Veder the local community. The pictured above, and on the following page, during performances of Method research study, which performances brought music, A Year With Frog and Toad, at the Mercy Place Mandurah care home. reported that people with theatre and creative arts Photos courtesy Mercy Place Mandurah dementia participating in the directly to people living with living room theatre sessions dementia and their support of the more physically able kind in Western Australia (and had increased cognition and networks. residents were ushers during potentially nationally, too). improved communication (van The project was led by the performances. The cast People have previously put on Dijk et al 2012). An Australian Western Australian based not- also included people from the shows for residents but not study also uncovered similar for-profit arts charity Mind local theatre community and with the residents. The aims of positive findings on wellbeing The Change Inc which, in schools, while others from the the project were to: when observing a group of collaboration with Mercy Men’s Shed and the • Increase awareness of people living with dementia Place, developed and community helped backstage dementia in the Mandurah who participated in drama orchestrated eight live with sound, lighting, set and community. activities compared with the performances in the care home props, or front-of-house. • Increase community control group who only over two weeks during As a ‘situational theatre’ engagement and build a watched movies (Jaaniste et al Dementia Awareness Month. A production, the show was sense of community around 2015). total of 463 people directly performed ‘in situ’ – meaning the Mercy Place home by The musical theatre project engaged with the project, the care home was used as the collaborating with local A Year With Frog and Toad built including almost 200 audience stage and the audience came groups and schools, using upon the approach described members. In the process, into the home. There were five performing arts as the by Brown by using theatre as a Althea Gordon (co-author here dedicated spaces within Mercy platform. medium to explore which and Mind The Change Inc Place set up as theatre spaces • Showcase the ability of not aspects of the creative process Artistic Director) and her team for the various scenes. At the only those living with carried the most positive discovered ways of using end of each scene the audience dementia, but older adults in impact – not just for those everyday activities to connect, moved on to the next space, the community, and their participants living with have fun and share meaningful where the actors for that scene desire to still be included in dementia but also for their time with the people living were waiting. Staging the community events and carers, families and the wider with dementia at the residence. performance in the care home activities. community. and moving the audience from • Increase the wellbeing of This article follows an A role for everyone space to space meant any residents, their families and earlier report on this Of the home’s 90 residents at resident could participate, no the production cast. production published in the the time, 20 were living with matter their physical or • Develop and foster August-September 2019 issue dementia and all took part in cognitive ability. intergenerational of AJDC, two months before some way – either on stage, in All five spaces selected were relationships between opening night. Here we the chorus or behind the communal spaces, such as members of the production. describe the methods used to scenes helping to make props, dining and lounge areas and support people with dementia the show poster or program. the main foyer/entrance to the The value of storytelling to take part, how the Some participants gave home. The spaces were ‘Play’ and ‘storytelling’ are production was developed feedback throughout the selected by the working group well-known activities that and key results from our rehearsals, while others were based on their ease of access, provide distraction from the qualitative evaluation of the involved more passively but size and familiarity to the difficulties of life, and are project’s impact, along with sat and made eye contact for residents. equally important for health as lessons learnt, in the hope that an hour with a big smile. Some The show was the first of its nutrition and sleep, as others may be inspired to start

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 9 a similar project in their aged companions, as they celebrate eight performances. This having a volunteer on the care facility. and rejoice in the differences included ushering audience door at all times. that make them unique and members to the various • People who weren’t staff, Method special. performance spaces throughout residents or family members Nine months before the face-to- the show, ticketing, program constantly on site. The face groundwork for this Supporting engagement sales, refreshments and public solution was to sign up the production began, the team at In March 2019, production, announcements. As the paying cast and crew as ‘volunteers’ Mind The Change Inc auditions and rehearsals began. audience were unfamiliar with for the purposes of liability identified Mercy Place Residents were invited and the venue (and it was not a and security. Mandurah as an aged care supported to be involved in regular theatre with signage), • People tripping or being facility that had previously every step of the process. they needed extra support to reluctant to step over electrical showcased art-based work with Invitations were sent out to all know where to go, where to sit cords and cables running its residents and had a staffing residents and small gatherings and what to do during the across the floor. To minimise cohort receptive to change. were held to ensure everyone performance. Regular theatre the risk, gaffa tape in a similar had the opportunity to ask etiquette is that you sit in your colour to the flooring was Project champions questions and understand what seat, you’re quiet and you clap used to minimise visual After discussing and agreeing would take place. More at the end of each scene. As this obstruction for those needing to collaborate to stage a specifically, those residents show was performed in situ, to cross and, where possible, production, Mercy Place living with dementia were the residents and volunteers in cables were run along and up Mandurah’s management team supported to attend the the front-of-house roles the walls. worked closely with Mind The gatherings and were provided prompts to help the Change Inc to identify key continually supported by Mind audience understand and Results personnel within the home to The Change Inc facilitators to follow what was expected or Community awareness act as ‘champions’ for the engage with the development ‘okay’ in this new space. The production highlighted to project. These champions were process. The production was the Mandurah community the selected for their interest in the All activities were made advertised to the public using prevalence of dementia in an project, creative capacity, accessible for people with several methods selected by the ageing society. The local council willingness to try something dementia including being a residents including posters in was happy to promote the new, and their availability to member of the community the care home, the local production with flyers take on a new project. audition panel; developing the community and schools, as well distributed within the council’s These champions offered program and scene layout; as articles in the local library network. Relationships ongoing support and feedback preparing and constructing newspapers. built during the production throughout the process, which props, costumes and the set; as Having a high-quality set, have been maintained post- also meant the project could well as learning the songs and professional lighting and production, with the Men’s progress outside of the direct dances during rehearsals. sound, and a principle cast of Shed and Bunnings continuing contact hours with the Mind Through the connections with eight actors from the local to contribute to the Mercy Place The Change Inc project local government offices and Mandurah community chosen Mandurah Lifestyle team’s facilitators. theatre groups, organisations by a resident-led panel, gave activities. The strengthened Similarly, community such as a Men’s Shed and the production a feeling of relationships between residents champions, local businesses, Bunnings came on board to authenticity which supported and children from the local organisations and schools were provide support by designing the residents to commit to their primary school and with library also sought via referral, and building the set. The roles in the performances. staff continue as they make expressions of interest and local donated materials, expertise regular visits to the home. advertising. Those with a and volunteers allowed the set Risk management These relationships keep the passion for community to be of a standard comparable Some of the potential risks wider community aware of the involvement, interactions with with local theatre productions. identified for this project, and Mercy Place residents and older adults and the arts were Most rehearsals took place at the strategies used to manage engaged with their activities. engaged and briefed about the Mercy Place Mandurah. Along them, were: The production was also production, its capacity- with volunteers, some of the • Increased volumes of people acknowledged by the building elements and residents chose to assist in entering and exiting the Independent Theatre opportunities for engagement. front-of-house roles during the home. The solution was Association for its contribution An in-house working group to community theatre in was then established at Mercy Western Australia, receiving an Place to enable ongoing input Adjudicator’s Award for from residents, families and Community Engagement at the staff. 2020 Robert Finley Awards. The production chosen, A Year With Frog and Toad, is a Increased engagement jazz-style musical score based The ‘community’ that on the Frog and Toad children’s developed around the project books by Arnold Lobel, that is increased the types of light and humorous. It follows interactions that the residents the adventures of two friends: and staff would usually have. the cheerful, popular Frog and Even the different the rather grumpy, anxious demographics of the cast Toad, along with their members resulted in

10 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 intergenerational relationships formally and informally, such dementia to participate in the community. This was a developing that would not as the post-performance staff- production and if the required successful capacity-building normally be facilitated by the organised supper and the story- number were not available, it project because it supported aged care home’s usual telling soirees started by a was difficult for those residents residents to take ownership by activities. Qualitative data resident. The core resident to join in. For this same reason, enabling them to be involved in collected from residents chorus group also led an after- there were obstacles to key decisions and the direction through informal discussions show party, inviting the lead conducting the pre- and post- of the production, and helped about their thoughts around cast to attend. Allowing time production interviews with this to facilitate valued interaction involvement in the project for friendships to develop group. As some information in more ways than one. revealed overall positive between the lead cast and the was collected second-hand In this project, people living feelings of increased residents was crucial for the from family members or staff, with dementia were engagement with these success of the project. What this must be taken into account empowered to participate in a community members. began with small talk evolved when interpreting the results of way that many had doubts into conversations built on trust this project. could be possible. With the Increased wellbeing and a sense of security for those correct support and a clear The increased engagement living with dementia because Key lessons learnt vision, people living with between residents and the the cast were living in their • Collaboration is essential for dementia can indeed foster and wider community also led to moment. success. This production develop relationships using observable differences in This element of ‘having fun’ would not have been as performing arts as the platform residents’ wellbeing. For and validating their purpose successful without the high to increase their feelings of example, one resident who was was noted by clinical staff and level of engagement achieved wellbeing. ■ previously known to walk the therapy teams to be reducing with community, local To find out more about Mind The halls without stopping to eat, these residents’ anxiety by businesses and key Change Inc or how you can start drink or sit still for more than acknowledging their worth, stakeholders. a project like this in your aged five minutes was observed by promoting their self-esteem • Flexibility is key. When care home, contact Artistic nursing staff to change his and a sense of joy. As working with the aged care Director Althea Gordon on behaviour. Throughout the performers, they were able to industry, flexibility and [email protected] or production, this resident found enter the reality of those living creativity of applied 0438 326 327. interest in talking to cast with dementia by building processes are essential to a Acknowledgments members and would focus long empathy and finding project’s success. Healthway, Act-Belong-Commit, enough to sit, watch and follow connections that were • Stakeholder engagement and David Templeman MLA, City of the entire 70-minute meaningful and purposeful ownership: all parties need to Mandurah, Mercy Place Mandurah, performance. It was also noted through this engagement. Post- be a part of the process to Bunnings Halls Head, Timber’s Edge that he had an improved ability production, some of these build sustainable long-term Men’s Shed, Bold Park Performing to sit and eat at meal times. Staff friendships have continued, relationships. Arts, Carole Dhu and Lifespan reported that he was still with one of the lead cast (a • Planning and pre-production Dance. displaying this changed young woman in her twenties) work were a necessity. References behaviour six weeks after the remaining in contact with a Timelines, project planning, Brown SL (2009) Play: How It production. resident by becoming pen communication and risk Shapes The Brain, Opens The An unexpected finding from friends. management were just as Imagination, And Invigorates The the project was that residents important as the Soul. Victoria: Scribe Publications. understood that they could Project limitations rehearsal/‘action’ phase. Jaaniste J, Linnell S, Ollerton R, Slewa-Younan S (2015) Drama increase their wellbeing To our knowledge, as this style Never disable people with Therapy With Older People With through participation, why it of project has never been limited abilities. Placing the Dementia: Does It Improve Quality was important to be involved undertaken in Australia before, decision in the hands of those Of Life? Arts in Psychotherapy with a project that has meaning Mind The Change Inc had no taking part allowed for a much 43 40-48. and value and one where they local resources or knowledge to richer experience. By engaging van Dijk A, van Weert J, Dröes R-M can interact with others. When draw upon. Therefore, a lot of the residents in every step of (2012) Does Theatre Improve The discussing the importance of learnings developed as the the production process, they Quality Of Life Of People With participation, one 93-year-old process unfolded. For example, helped shape and create the Dementia? International male resident said: “I felt like I there were limitations around end result and the production Psychogeriatrics 24(3) 367-381. was contributing to it. And this the technology that could be held greater value for them. is what I have got to do, used during the production, because I’ve still got to retain and the number of audience Conclusion my memory. It [the production] members that the venue could This theatre project set out to was something to keep my support. Holding rehearsals in explore which aspects of the mind active. This is what I have the care home was both an creative process carried the to keep doing, keeping my advantage and a limitation. most positive impact. A key mind active.” While it allowed maximum result highlighted throughout participation by residents, it the process was the benefit of ■ Althea Gordon (left) is Artistic Intergenerational ties was also problematic when the community engagement for the Director of Mind The Change Inc, The regular interaction between home encountered a lockdown residents. This is important as Western Australia. Althea’s mother the residents and younger cast due to illness and rehearsals extensive research has has been living with younger onset members helped facilitate a had to be cancelled. established that people need dementia for more than 10 years; bond between these groups. A lot of people were needed this connection to feel like a Tina Firth is a board member of These were created both to help the residents living with valued member of their Mind The Change Inc

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 11 New beginnings: design to support engagement

Samantha Neylon and Ruth Payne describe the process of transforming a former convent building into a purpose-built dementia-friendly care home supporting a Montessori approach to dementia care, and lessons learnt

illa Maria Catholic The scope of works Homes (VMCH) is a not- included: Vfor-profit organisation • Reconfigure the existing providing aged care, layout to include an retirement and disability additional three bedrooms services to over 9000 people with ensuite bathrooms. across Victoria. VMCH Corpus • Upgrade fire Christie Aged Care Residence, compartmentation and in the Melbourne suburb of services required to comply Clayton, undertook a $900,000 with the National project to refurbish the Construction Code 9c adjacent Cluny Convent into The refurbished VMCH Corpus Christie Aged Care Residence in building classification (aged Cluny House, a 12-bedroom Melbourne. All photos: Michelle Despot from M Style & Co care), as the building was Memory Support Unit which originally classified as Class opened to residents in July, it have been feasible. rich in opportunities for 3 (hostel). 2019. Being a former convent, Cluny House has been independent engagement. • Upgrading the interiors in all the building’s existing designed to support the This enables the person living line with recommendations elements were suitable for organisation’s Montessori with dementia to have a for a Memory Support Unit minor internal modifications approach to dementia care (see meaningful place within their based on VMCH’s to easily convert to a box p15). This approach has a community, make Montessori learnings to date. dementia-specific unit. key focus on residents ‘doing autonomous choices and • Remodelling the existing Therefore demolition was and participating’ through the contribute to life in their kitchen so that staff and not considered nor would provision of an environment home. residents could use it effectively and safely. • Addition of a domestic laundry for use by residents. • Construction of a new passageway connecting Corpus Christi and the new Memory Support Unit to improve access for both staff and residents. • New landscaping in the north-facing garden with appropriate features for residents with dementia to engage.

These works are reflected in the Cluny House floor plan at left.

The project brief VMCH approached Perth- based living environment specialist company deFiddes, which provides person- centred design solutions for Floor plan of the 12-bedroom refurbished Cluny House Memory Support Unit, which opened in 2019 residential aged care,

12 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 retirement, dementia and disability care, to refurbish Cluny House with a homely, updated aesthetic. Finishes, loose furniture and accessories were selected in a mid-century modern style to evoke memories for residents living with dementia and create a comfortable, calming and enabling environment, whilst ensuring the Montessori approach could be effectively delivered by the Cluny House staff. Taking inspiration from the location and build typology of this single-storey dwelling, the intention was to deliver a The open plan living and dining areas are divided into zones to provide cues for residents contemporary, yet intimate and homely design outstanding feature of Cluny plan living and dining areas required design and form to sympathetic to the cohort of House is the short corridors are divided into zones to make suit the mid-century modern residents from predominately which lead to communal areas it easier for residents to style. Australian and European with additional points of recognise what each space is Whilst the accessories were backgrounds who would be interest, such as an internal used for. Furniture and themed to suit the residents’ living there. It was important garden nook and textured wall accessories are placed in such relationship with the era, the that the environment felt hangings. The recessed a way as to facilitate simple sensitive approach conveys comfortable and welcoming, shelving along the corridors decision making and provide meaning which endures not intimidating or unfamiliar, holds memorabilia such as cues for task participation by beyond that time. Interior and also included a subtle nod chinaware, glassware and residents. The carefully finishes including wall vinyls to the Mediterranean. trinket boxes for residents to delineated spaces also provide and paint colours, along with This was achieved using observe and engage with. a sense of intimacy and corresponding artwork and recognisable themes in each These items change according domestic scale. accessories, were specifically zone, with supporting to current resident preferences The joinery incorporated selected to assist resident artworks and accessories to and aid with wayfinding and storage wherever possible. wayfinding and familiarity. incorporate sensory and ease of moving around the The combination of easily- For example, terracotta and lifestyle elements. Key home. opened drawers, bench tops blue, in keeping with a dementia design components The project also required the and open shelving supports Mediterranean palette, have including colour, contrast, redesign of bedrooms and ease of access, visual cueing been used as a feature wall perception, scale and form ensuites with the addition of a and independence for colour and in the furniture were considered. resident laundry and separate residents. fabrics. Birds and florals were activity area. Key components The installation of internal among the themes used to Independence, engagement of the brief were access to windows to all the communal identify different areas of the Architectural features and outdoors, storage, and ample areas and hallways, and easy- home, with artwork and finishes were selected to be natural light and clear visual opening doors, further accessories reflecting those hard-wearing whilst echoing access. embedded this concept. themes. The psychology of the design aesthetic. An The predominantly open Additional clinical colour and the effect it has on requirements such as hand- moods and behaviours were wash stations were built into considered, such as the the walls as part of the joinery introduction of the cool (blue) to soften their appearance and and warm (terracotta) in areas have them recede into the to either calm or stimulate. background. In line with the Montessori All the furniture was approach, the kitchen needed assessed and approved by a to be domestic and accessible seating specialist occupational so residents could participate therapist from the deFiddes in meal preparation and team to provide an serving should they wish to do appropriate range of seating so. Key to this was the open options to accommodate design of the kitchen and the residents of different sizes and use of removable heated units mobility. Furniture was which only sit on the benchtop selected based on during meals. This ensures the The joinery incorporated storage wherever possible. The combination functionality, comfort, safety kitchen is familiar and inviting of easily-opened drawers, bench tops and open shelving supports and longevity, whilst also to residents without large ease of access, visual cueing and independence for residents taking into account the built-in commercial-size bain-

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 13 maries and servery units. A resident laundry was designed and installed to facilitate the Montessori approach, where residents are provided with opportunities to contribute to the running of the house. Also integral to the VMCH mission is supporting residents’ spiritual needs and the existing chapel at Cluny House was refurbished to provide a contemplative sanctuary.

Noticeable changes Helen Haynes, VMCH Montessori Change Lead, has reported that the new environment at Cluny House, coupled with the Montessori approach, has produced The kitchen at Cluny House is designed to enable residents to participate in meal preparation and noticeable changes in residents serving should they wish to do so in a short amount of time. “The residents are able to knew it before the onset of couldn’t wait to tell the rest of residents to hang out their wake up and choose to eat dementia. the team. It was a very special washing. breakfast, which they serve project and it was done with • Additional open shelving in themselves, at a time which Exciting challenge the greatest intent to create a the nooks at the end of suits them,” Helen said. “They Kathryn Lamond, deFiddes’ space for residents that really corridors would provide can even come to the dining senior interior designer, did help them feel at peace more opportunities for room in their dressing gown if walked through the site before and at home, and I felt resident engagement, either they feel like it. The self- building works began to get a immediately we all had independently or with others. service dining has proved very feel for the space and a clear achieved this vision.” • The addition of smaller successful; residents select vision to support the brief Achieving positive resident ‘withdraw’ or solitary sitting their meal and put it on their provided. Kathryn said it was outcomes was the ultimate areas (other than the chapel) own plate. Having the choice an enjoyable and exciting goal for both organisations, off the main living areas also means they tend to eat challenge to come up with beautifully captured by a would have been beneficial more, so there’s also less need specific selections for Cluny Cluny House resident who to provide the option of for supplement drinks.” House and she found the said “This feels like home”. smaller intimate nooks – but Helen also reported a process to be very rewarding. that was not within the reduction in responsive “When I visited Cluny Lessons learnt scope of this project. behaviours, with residents House again just before the As with any project, there are taking more interest in residents were due to move in, lessons to be learnt and often VMCH has since completed activities and tasks. This has I was overwhelmed by the these are only identified once another two Memory Support enthused staff who look serene and calming sense of the space is being occupied Units which have forward to seeing even more the space and how it all came and used: incorporated these valuable improvements and supporting together,” Kathryn said. “I • Storage was considered and lessons. residents to reconnect with remember feeling extremely implemented, however more The key learning identified aspects of their life as they excited and satisfied and space is required for the by deFiddes was to Lifestyle team to store their recommend all future resources. refurbishment projects include • In hindsight, installing pre and post measures in the automatic doors would have scope of works so that the facilitated residents’ easy value of projects can be and unsupervised access to quantified and qualified – the courtyard, further particularly from the enabling their independence residents’ perspective. Some of and ensuring they could the measures recommended move freely around Cluny for assessment and evaluation House as if they were in before and after a their own home. refurbishment include: • Similarly, the location of the • Lighting: what were the lux laundry is not ideal. It would levels (unit of illumination of have been better positioned one square metre area) The existing chapel at Cluny House was refurbished to provide a closer to the garden so it originally and what are they sanctuary and space for contemplation would be easier for the once the upgrades have been

14 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 implemented? Do residents and staff observe or report any improved functional The Montessori approach: resource tips outcomes as a result? It has been reported that the lux The Montessori approach to dementia care can be translated into development of levels are often too low for (referred to in this article) is based on the activities for people with dementia, and shares optimum visibility through educational methods pioneered by the Italian learning from a range of research studies older eyes, in addition to physician Dr Maria Montessori over 100 related to the implementation and evaluation of limited ability to adjust years ago. Montessori methods in dementia care. Read lighting to suit different task the article here: The person-centred approach is strengths- requirements, so studies www.ncbi.nlm.nih.gov/pmc/articles/ based and promotes independence in activities examining this would be PMC3600589/ of daily living and sensory stimulation. beneficial. • Furniture: how do the To find out more, check the resources below. Montessori for dementia: Dementia Australia’s specifications of new Centre for Dementia Learning runs a three-hour Purposeful Activities for People with furniture compare to the training course delivered onsite for staff teams Dementia: This Dementia Australia resource original furniture and in any care setting entitled ‘Montessori for includes six films showcasing the Montessori accommodate people of dementia’, which introduces the main approach to care and how it can enrich the different sizes and shapes? components of the Montessori approach lives of people living with dementia. It comes For example, are residents and presents strategies to implement with an accompanying workbook with key observed to sit comfortably Montessori-based programs for people living points for reflection, and is available at: for longer periods with ease with dementia. Find out more at: https://bit.ly/purposeful-activities of movement? https://dementialearning.org.au/course/monte ssori-for-dementia/ • Wayfinding: is there a change Montessori… but isn’t that for children? in the residents’ ability to This 45-minute video from Dementia Training Montessori Ageing Support Services find their way around the Australia provides an overview of the key (MASS): Montessori Ageing Support Services care home? Are the staff more Montessori principles and presents a selection (a division of the Montessori Australia or less involved in assisting of case studies to show how a prepared Foundation) is the national peak body for residents to rooms such as environment, activities, roles and routines can supporting quality of life for older Australians bedrooms? enrich the lives of care home residents. through the Montessori approach. It oversees • Resident engagement: is Resource available here: https://bit.ly/but-isnt- training, consulting, promotion and there a change in the that-for-children endorsement of enriched Montessori frequency and type of environments for older people receiving care independent engagement by Origins of Montessori Programming for In this journal article, Dr Cameron services. More information: the residents with the new Dementia: Camp explains how the Montessori approach www.massa.org.au/about-mass environmental interventions? Are there particular elements which seem to provide the most stimulation? but could include the Audit Tool (RACBEAT); Adult preferences, memory support, following: Dementia Services Social Care Outcomes Toolkit latest products and evidence- Assessment tools Development Centre’s (ASCOT); and ICEpop based research has provided There are a number of Dementia Design Audit Tool CAPability measure for Older Cluny House residents with a assessment tools that evaluate (DDAT); Dementia Training people (ICECAP-O). premium home now and into the environment, as well as Australia’s Environmental These assessments could be the future. ■ those that evaluate quality of Assessment Tool (EAT); completed before and after life and resident outcomes. HammondCare’s refurbishment works to The list of available DesignSmart; the Residential compare and contrast project assessment tools is extensive, Aged Care Built Environment interventions and the benefits they bring to residents. Ideally these evaluations would then be shared – and not just within the project team, but widely amongst the residential aged ■ Dr Samantha Neylon (left) is care sector. Continuous Clinical Director at De Fiddes. She learning and improvement is has worked in service development, essential to build on the management and occupational existing knowledge base in therapy in the aged care and order to improve living disability sectors for over 20 years. environment outcomes for Contact her at Samantha@ people living with dementia. dfdesign.com.au; Ruth Payne is an architect and Senior Development Conclusion Manager at Villa Maria Catholic Homes (VMCH), specialising in the This project collaboration field of design for older people, between VMCH and deFiddes particularly people living with A range of seating options were chosen to accommodate residents to deliver a customised design dementia. Contact her at of different sizes and mobility consistent with residents’ [email protected]

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 15 Reimagining Dementia: A Creative Coalition for Justice

Reimagining Dementia is an international group of dementia activists and allies who share a vision that challenges biomedical and institutional approaches to care. Launched in the midst of the global pandemic, the Coalition has issued a call to action to people with dementia, their families, communities and care organisations to create environments in which everyone is supported to thrive and grow. Coalition Coordinator Mary Fridley explains

fter COVID-19 made its dementia, we were angry. And first appearance in early while the percentage of aged A2020 it soon became clear care home deaths has since that this global pandemic was dropped, they continue to having a disproportionate and represent between 42% and devastating impact on the 75% of all COVID deaths lives of older adults and around the world (see people living with dementia in Thompson et al 2020; Cousins nursing and other care homes. 2020). Like so many around the the East Side Institute Dementia Care Alliance, Our early anger quickly world, my East Side Institute (www.eastsideinstitute.org) in University of Waterloo, turned to outrage with the colleague Dr Susan Massad New York City, where I am Canada); Kate Fassbender media coverage of the and I wanted to find a way to Director of Special Projects (Dementia Letters Project, US); pandemic that virtually make a difference, so we and Susan, a retired physician, Emma Finn (Sunnyside ignored the role of stigma, reached out to others who is a faculty member. The Community Services, US); racism, poverty and other shared our commitment to institute is an independent Dawn Hagen, (Parker Jewish social factors in shaping care transforming the dementia international educational and Institute for Health Care and practices and public health conversation from one that research centre for developing Rehabilitation, US); Pia Kontos response strategies to COVID- produces stigma and shame to and promoting alternative (KITE-Toronto Rehabilitation 19, and which are having a one of possibility and growth. humanistic approaches in Institute and the University of profound impact on people psychology, education and Toronto, Canada); Jennifer living with dementia, their Joining the conversation community building. As part Kulik (Silver Kite Community care partners and loved ones. We invited them to join us in a of our work we also lead a Arts, US); David McDonaugh virtual (and longer-term) workshop series for people (Flourishing Lives, UK); The role of stigma conversation about how we with dementia and carers, Nicola Pauling (Voice Arts, The role of stigma was can use this extended moment called The Joy of Dementia (You New Zealand); Mary L addressed in an article of living in such uncertain Gotta Be Kidding!), based on Radnofsky (Human Rights published on 5 August 2020 in times to harness our collective improvisational play. Advocate for People with The Conversation, by the creativity and radical Joining Susan and I in Dementia, US); Kari Rogenski University of Toronto’s Alisa humanism to proactively and developing the Creative (The Hummingbird Project by Grigorovich and Pia Kontos. positively impact on the lives Coalition for Justice were Sage Eldercare Solutions, US); Both critical social scientists of everyone who lives and Helen Abel and Jill Battalen Carol Varney (Timeslips with expertise in dementia, works in the dementia space. (Life Performance Coaching, Creative Storytelling, US) and ethics, and long-term care, Susan and I had no idea if US); Frances Bottenberg Peter Whitehouse (Case they wrote, “Collectively our something would emerge, but (University of North Carolina Western Reserve University work is motivated by a shared if it did, we felt confident at Greensboro, US); Pam and University of Toronto, US concern about how stigma about two things: it would Brandon, (AGE-u-cate® and Canada). associated with dementia come from the grassroots – Training Institute, US); Kyrié consistently enables and and lead with creativity. We Carpenter (ChangingAging, Anger and outrage legitimises restrictions on the were thrilled that 19 people US); Jennifer Carson As it became clear that 70-80% freedom of individuals living from the US, UK, New (Dementia Engagement, of COVID-related deaths in with dementia, and denies Zealand and Canada agreed to Education and Research the US, Australia, Canada, the them the opportunities to come together in April to Program, School of UK and several European pursue life-enhancing begin a process that would Community Health Sciences, countries in March and April relationships and eventually give birth to University of Nevada, Reno, 2020 were associated with activities…We have traced this Reimagining Dementia: A US); Joan Devine (Pioneer often under-resourced aged stigma to two cultural Creative Coalition for Justice. Network, US); Sherry L care homes, with the majority narratives about dementia: Susan and I are members of Dupuis (Partnerships in being people living with with memory loss there is a

16 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 total erasure of the self; and ageing and dementia policy Sharing ideas, aspirations grassroots effort to recreate the medicalisation of memory advocates; health care, mental In October 2020, Reimagining and redirect the global loss, which reduces nursing health, social service and Dementia hosted three online conversation on ageing and home care to supporting basic dementia professionals; member gatherings in which 90 dementia. To become a physical safety and comfort. residential care personnel; and members from nine countries member of the Reimagining Together these narratives community members. The began exploring how we can Dementia Coalition, visit perpetuate a collective organisational affiliations of creatively come together to our Facebook page representation of persons our Australian members transform the culture of (https://m.facebook.com/ living with dementia as ‘non- include Artful Connections, dementia. We also hosted three reimaginingdementia), read persons’. This highlights the Barossa Village, Caladenia online gatherings in December our Call to Action and sign inherent ableism and ageism Dementia Care, Daniella 2020 that brought together 120 up – or contact us via email that dehumanises and Greenwood & Associates, Leef members, and have released a at reimaginingdementia@ demarcates the lives of people Independent Living Solutions, survey for members to share gmail.com. We will then be living with dementia as Meaningful Ageing Australia, what ‘reimagining dementia’ in touch about member disposable.” TRICE, Unique Collaborations, means to them, along with their gatherings, other activities While the stigma of University of Technology ideas, dreams and aspirations and ways we can work dementia touches everyone, Sydney and University of for the Coalition. together. We look forward when taken together with NSW. In one of the October to hearing from you! ■ systemic racism, economic gatherings, a small group of inequality, lack of access to Forging alliances members created this poetic care and anti-poor attitudes We believe that a coalition is “note to the researchers, and policies, the consequences what is needed to forge scientists, academics and policy of COVID have been alliances across the globe and makers”: especially serious for work collaboratively to Thru playing together we can communities of colour, challenge the stigma flatten the hierarchy native/Indigenous people and associated with dementia, and Can we make the arts, play, other impoverished and to mobilise the practices and performance the centerpiece of marginalised populations (see political processes required to dementia care? Lagasse 2020). finally achieve a humanising If people do not have new vision of care and support that experiences, how do we create Our call to action promotes inclusion, new ways of seeing? After four months of formal relationality, creativity, and Give people opportunities and and informal Zoom the possibility of growth for permission to break out of their ■ Mary Fridley is Coordinator of conversations, the founding everyone living with, and boxes Reimagining Dementia: A Creative members of our Creative impacted by, dementia. Life with dementia is fluid and it is Coalition For Justice and pro-bono Coalition for Justice Unique to this Coalition is not all the same for every person. Director of Special Projects at the East Side Institute in New York City. developed a specific call for our belief in the power of We are all unique human beings. She is also a teacher, co-leads two the radical transformation of creativity – the arts, theatre, workshop series, ‘The Joy of the very attitudes and music, movement, Tara Ernst is a high school Dementia (You Gotta Be Kidding!)’ conditions that are improvisation, performance principal from Calgary, Canada and ‘Laughing Matters’, and is a contributing to the isolation, and much more – to bring us whose mother and father were playwright and theatre director. abuse, and neglect within and together and innovate new both diagnosed with dementia. Contact her at: outside of long-term and ways to address the social Like many carers, she was [email protected] community-based care injustices that people living desperately looking for positive settings by means of, for with, and impacted by, ways to support her parents in References example, the medicalisation dementia face. their often difficult journeys. Grigorovich A, Kontos P (2020) COVID-19, Stigma and The and pathologising of human There are, of course, many For her, joining the Scandalous Neglect Of People experience, and the use of local, national, and Reimagining Dementia Living With Dementia. The chemical, physical, and international examples of Coalition meant meeting a Conversation. Available at: environmental restraints. individuals and organisations “…community of people https://bit.ly/33NbRcw. On 8 September 2020, making important strides to seeking the same thing Lagasse J (2020) Minorities Suffer Reimagining Dementia: A achieve culture change – our [supporting people with Most From COVID-19 In Nursing Creative Coalition for Justice membership powerfully dementia] and strong Homes And Assisted Living was formally launched, with represents much of this work. advocates who are determined Communities. Healthcare Finance. founding members and other Thus, our focus with the to change their loved ones’ Available at: friends, colleagues and Reimagining Dementia worlds and the worlds of https://bit.ly/2JNOh8m. Cousins S (2020) Experts Criticise supporters disseminating the Coalition is to leverage these complete strangers. Australia’s Aged Care Failings Over ‘call to action’ to their and other collective initiatives, Discovering it gave me COVID-19. The Lancet World networks. resources, expertise, and hope…it is an honour to Report 396(10259) 1322-1323. To date, a diverse group of passion to organise and volunteer and work towards its Thompson D-C, Barbu M-G et al 400 people from Australia and mobilise strategies, processes mission.” (2020) The Impact of COVID-19 19 other countries have joined and practices. Given just how Pandemic on Long-Term Care – including people living with hard culture change work is, Joining the Coalition Facilities Worldwide: An Overview dementia; family care partners; such a collective effort seems It is our hope that everyone On International Issues. BioMed artists, advocates and activists; to be the most productive way committed to culture change Research International Vol 2020 academics and researchers; forward. will also join us in this doi.org/10.1155/2020/8870249.

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 17 Dancing through lockdown

Gwen Korebrits explains how Dance Health Alliance has enabled people living with dementia to keep active and dancing throughout the COVID-19 lockdowns

eople living with dementia and their carers Phave faced a particularly challenging time over the past 12 months due to COVID-19, and the impact of the resulting social isolation and inactivity within the community and aged care facilities will continue its ripple effect into the coming years. Dance Health Alliance (DHA), an Australian not-for- profit organisation facilitates dance programs in residential aged care homes and the community for people living with dementia and cognitive decline, movement-restricting conditions, mental health issues and the elderly, to improve their quality of life and regain freedom through movement. No dance experience is necessary and the classes are open to people of all Dance Health Alliance CEO Gwen Korebrits pre-records a ages and levels of mobility. DanceWise class (above) and with one of her team (right, inset) Our belief is that ‘movement is medicine’ and it is important strength and flexibility. Dance incorporate the DanceWise also a great social for people not to miss out on encourages muscles to become program into their own opportunity…”. their daily ‘dose’. So when active and pump oxygen practice or facilities. For further information, COVID-19 prevented us around the circulatory system. The most positive feedback email info@dancehealth running face-to-face classes we The music unlocks memories of we have received for the alliance.org.au or sign up for quickly transitioned our forgotten moments and song classes is from those aged care classes and training via the DanceWise program, lyrics. facilities or organisations who DHA website at www.dance specifically designed for The DanceWise interactive had trained their staff in the healthalliance.org.au ■ people living with dementia online program eases people DanceWise program prior to and their carers, online, back into reconnecting with COVID. This allowed them to including pre-recorded classes others, moving their bodies function independently during and live classes through Zoom. and activating their minds the lockdown periods, so the The online DanceWise through a series of gentle but residents and staff have not classes proved so successful effective seated dance, stopped dancing. It has been a during 2020 that we are stretching and breathing tremendously morale-boosting continuing them in 2021, with exercises, with the aim of activity that has inspired staff 30-minute classes running improving lung capacity, and residents during these ■ every Tuesday at 10am via stamina, balance and challenging times. Gwen Korebrits is CEO and Co- Zoom from 2 February. flexibility as well as Karn Nelson, Executive founder of Dance Health Alliance Limited. Contact her at confidence, memory and General Manager Strategy and [email protected] Mood enhancer mood, set to a playlist of Innovation at The Whiddon Dance has always been a great suitable and eclectic music. Group, says the DanceWise Disclaimer: The mention of mood enhancer, stimulating the DHA also provides a program has been a huge hit trade names, commercial release of ‘feel good’ hormones certified teacher training with residents and staff, “with products or organisations in the including serotonin, oxytocin program for dancers as well as some residents and their allied Australian Journal of Dementia and dopamine. The physical carers, therapists and medical health specialists reporting Care does not imply benefits include improvement and allied health care significant improvements in endorsement by the editors or in cardiorespiratory fitness, professionals so they can balance and coordination. It is publisher of the journal.

18 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 RURAL & REMOTE DEMENTIA CARE Extending dementia care into Indigenous communities The University of Queensland’s Centre for Online Health (COH) is an internationally regarded leader in the field of telehealth. In this article, Anthony Smith (COH Director) and members of his research team, Helen Haydon, Emma Thomas, Centaine Snoswell and Liam Caffery explain how telehealth is being used to connect dementia specialists to selected Aboriginal and Islander Community-Controlled Health Services in Queensland. These projects build on the skills of a strong local workforce, and help raise awareness of dementia within Aboriginal and Torres Strait Islander communities

he delivery of health services to people living in rural and remote Tareas is considerably more challenging than for those living in city locations. However, regardless of location, telehealth can increase access to care (Smith et al 2020). Telehealth has been shown to be useful for people of all ages, for a broad range of conditions, and in a range of different settings. The benefits are not limited to rural or metropolitan populations. Telehealth services can be delivered in real-time (eg video consultations), asynchronously (eg email and patient portals), or through remote monitoring (eg use of a non-invasive technology to collect and transmit vital signs from a patient to a clinician). Aboriginal and Torres Strait Islander people (for brevity, herein respectfully the term Indigenous Australians will be used) have a much higher level of risk and need for dementia services than the general population. The prevalence of Badu Island, in the Torres Strait, Queensland, was one of the communities involved in the dementia in Indigenous Australians is DREAMT telehealth trial. Photos: Centre for Online Health, The University of Queensland three to five times higher than their non- Indigenous counterparts (Flicker & of people with dementia, their families within local health services (Smith et al Holdsworth 2014). The quality of care and carers (Strivens and Craig 2014). 2010). available to people with dementia in Dementia Australia estimates that for Combining the management of remote Australian Indigenous Indigenous Australians, the time dementia with health promotion communities is considered poor (Smith et between the onset of symptoms and programs has the potential to reduce the al 2010). Since nearly half of Indigenous dementia diagnosis often exceeds three population prevalence of dementia and Queenslanders live in outer regional or years, which could potentially be its associated social and clinical burden, remote areas, we sought to explore reduced by increasing access to and increase quality of life for opportunities where telehealth could be specialists by telehealth (Flicker & Indigenous Australians. used to improve access to specialist care. Holdsworth 2014). The risk of developing dementia can Telehealth for dementia care Dementia management also be reduced with appropriate As many specialist services are Whilst there is no specific cure for community education and preventative concentrated in metropolitan areas, dementia, there are a range of healthcare (Livingstone et al 2020). patients from rural and remote areas therapeutic interventions which can help Attention to cardiovascular risk factors, often need to travel to access care. manage symptoms and slow the physical and cognitive leisure activities, Telehealth enables healthcare to be progression of the disease. This is why and diet can improve cognitive function delivered to remote communities, which early detection is particularly important and/or reduce dementia risk. Indigenous provides patients with a choice about for dementia management. Lack of Health Workers (IHWs) are considered how they access care. Additionally, a detection (or late-stage diagnosis) is a an effective strategy to deliver risk- patient’s out-of-pocket expenses significant barrier to improving the lives reduction programs and education associated with travel (eg transport,

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communities in the south-west region of Queensland (Cherbourg, Cunnamulla and Charleville) and up through the Torres Strait (Badu and Mabuiag Islands), we explored ways in which telehealth may be of value. The DREAMT project (www.coh.centre.uq.edu.au/project/dre amt) ran from July 2017 to June 2020. Its main objectives were to: • engage with Aboriginal and Torres Strait Islander communities, and better understand current impressions and awareness of dementia • provide dementia education and training • promote the use of a culturally Health workers and members of the DREAMT project. The project explored ways in which sensitive routine dementia screening telehealth could be of value in improving access to specialist dementia services in assessment (the Kimberley Indigenous Indigenous communities Cognitive Assessment (KICA) tool) and, accommodation, lost income) can be telehealth in non-dementia contexts was • develop referral processes for substantially reduced when they access an effective way of delivering health telehealth consultations with a geriatric care via telehealth (Bradford et al 2016; services to remote Indigenous specialist. and Snoswell et al 2019). Telehealth communities, with Indigenous models of care for dementia management Australians reporting positive Our funding allowed for the can improve the timeliness and accuracy experiences using telehealth. In a 2016 employment of a part-time IHW in each of detection which, in turn, can facilitate systematic review, we identified specific of the community health services in early intervention and management, outcomes associated with the use of south-west Queensland (Cherbourg, leading to improved patient outcomes. telehealth for the provision of healthcare Cunnamulla and Charleville). We were to Indigenous Australians. These unable to employ any IHWs in the Torres Indigenous communities included: improved social and emotional Strait due to Queensland Health Recent reviews have demonstrated a wellbeing, clinical outcomes and access governance and approval processes. broad range of benefits associated with to health services (Caffery et al 2016). Instead, we developed educational the use of telehealth for people living in videos which could be used to raise Indigenous communities. Telehealth The DREAMT Project awareness of dementia and telehealth services delivered to people in DREAMT was derived from the words: (covered in more detail below). Aboriginal and Islander Community- Dementia, Regional and remote, Supported by the 12-person DREAMT Controlled Health Services (AICCHS), Empowering Aboriginal and Torres project team (comprising people from from a specialist located in tertiary Strait, Medicine and Telehealth. The COH, the Princess Alexandra Hospital in hospitals, are thought to be the optimum project was funded through the Brisbane and Cairns Base Hospital), the telehealth-facilitated model of care for Department of Aged Care Services health worker was the primary contact in Indigenous people (Caffery et al 2018). (DACS) Fund, under the broad strategy each community, responsible for Advantages of this telehealth model of improving access to specialist activities related to raising dementia include: providing care in a familiar and dementia services in Indigenous awareness (education and training), culturally appropriate environment; communities. Engaging with promoting routine dementia assessment, reducing or eliminating the need for travel; reducing out-of-pocket expenses for the patient; engaging a salaried local workforce; and providing opportunities for Medicare funding, which improves the sustainability of the service.

Dementia care The evidence regarding telehealth use for dementia care in remote Indigenous populations is quite limited. However, there is collateral evidence that supports the use of telehealth for dementia care. For instance, Indigenous-specific dementia screening tools (such as the Kimberley Indigenous Cognitive Assessment tool (KICA-Screen); LoGiudice et al 2006) have been validated for use by videoconference (Russell et al 2019). There is also evidence that A DREAMT telehealth consultation conducted in Charleville, Queensland

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and telehealth uptake (service development). The IHW selected by each community had varying levels of experience and qualifications. Most had a Certificate IV-level qualification. Some were working towards the qualification or very close to completion. The teleconsultation process facilitates interaction between the IHW and geriatric specialist. This leads to increased knowledge in dementia management, and increased empowerment for the IHW, the community-controlled health service and/or aged care facility. Health interventions for Indigenous Australians need to be tailored to the needs of the community. There’s no such thing as one model suits all. This was apparent during our visits to each community, where valuable yarning sessions were held with local community members, elders, health workers, families and service managers. Thursday Island, in the Torres Strait, one of the communities involved in the DREAMT project Community yarning The DREAMT project team learnt a lot comfortable just pretending that Queensland and a Torres Strait Island thanks to the generosity of all everything was okay and that certain community which allowed the communities involved in the project. The behaviours were just part of ageing. uniqueness of each community to shine engagement process involved extensive Community members also shared their through. Aiming to increase dementia travel around Queensland to some very experience navigating a complex health awareness at a community level, the remote locations; and priceless system, where often they would not films target IHWs, people with younger- opportunities to hear from local know how to get support and assistance onset dementia and their families, and community members and better when caring for someone living with are freely available. They have been understand everyone’s impression of dementia. Another interesting challenge actively shared in public places (such as dementia, and how this affects life in was associated with the high degree of airports, hospitals and community health each community. It’s estimated that we respect shown for Elders, and a centres) and universities around had direct contact with at least 150 reluctance by younger health workers to Australia. These films were shortlisted community members, including health ask certain questions (during the for the 2019 Australian Teachers of Media service staff, health workers, local dementia assessment), in fear of (ATOM) Awards, which recognise film residents, government and council appearing disrespectful. and media excellence in education and representatives and local elders. Community discussions revealed the industry. Links to the videos are available Yarning opportunities happened in needs of the communities to increase here: www.coh.centre.uq.edu.au/ pre-planned meetings, but most often access to services. Specifically, the project/dreamt. through ad-hoc conversations in following themes were found: supermarkets, on fishing jetties, in health • the need for increased access to Project findings centres and along local streets. This was specialist services The delivery of the DREAMT project the perfect opportunity to get to know • positive experiences with telehealth within a two-year period was a one another, share stories and really • the need for dementia education challenging task, mainly due to the time begin to understand the needs of each • strategies to assist with different needed for proper community community. viewpoints about dementia (what it is, engagement. For our project, two years Everyone had a story about dementia – the causes, and how to deal with it), included site visits and engagement; whether that involved a parent or and service planning; service implementation grandparent, a neighbour, a work • the impact on families who are living and some evaluation to better colleague, or just someone living in the with someone with dementia. understand community perspectives, the community. Whilst most people had a uptake of routine dementia screening general understanding of dementia, there In response, some of the educational and the use of telehealth. What we were many different interpretations of requirements were captured in two short appreciated was the significance of exactly what it was, its causes and DREAMT films which displayed the working with community, understanding treatment options. In some cases there magical beauty of each region, and the community requirements, and the was acknowledgment about low process of engaging with health services importance of tailoring services based on awareness of strategies to treat dementia and specialists by telehealth. community needs. and factors which can reduce or slow the Our team of Indigenous Health onset of dementia. Occasionally, stories Dementia on the big screen Workers were extremely passionate would reflect an element of fear or The DREAMT films showcased an about their role in the DREAMT project stigmatisation, where one felt more Aboriginal community in south-west but, on a day-to-day basis, were also

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managing multiple roles and (Extension for Community responsibilities in the community Healthcare Outcomes) guided health service. Health workers practice model (www.hsc.unm. wore many hats – and when one of edu/echo/) to deliver an these hats involved leading innovative ‘hub-and-spoke’ dementia training or organising an telementoring service where expert assessment, there was always the teams lead virtual clinics. risk that other competing activities would get in the way. Prioritising Dementia ECHO dementia care in a community with Based on what we have learnt from so many other health and social the DREAMT project, the COH will challenges is difficult. establish, manage and evaluate a The introduction of routine telementoring program for dementia screening processes for dementia as services. Supported by funding from part of the project meant some the Australian Government changes to the usual assessment (Indigenous Australians Health tools used by the health workers, Program), Dementia ECHO will be and increased burden of time due available to selected AICCHS in to additional questions and Queensland. The main aims are to: concerns which needed to be build up local skills, enable easier addressed. These responsibilities access to specialist services normally were supported by specific training only available in city locations, and services provided by Dementia encourage regular communication Australia and the COH during the between specialists and primary care course of the DREAMT project. Stage 2 of the project is Dementia ECHO, teams responsible for the delivery of This training included tailored based on the Project ECHO model which health services to Indigenous Australians. workshops on dementia assessment and uses hub and spoke knowledge-sharing The service will link a Dementia ECHO management, and how to support people networks to create a learning loop (above) panel (medical, nursing and allied living with dementia. These workshops health) with AICCHS staff. The monthly also gave participants the opportunity to communities. We have a geriatrician who videoconference sessions, scheduled to use a dementia virtual reality tool called runs a telehealth clinic every week. Sites begin in February 2021, will include a EDIE (Educational Dementia Immersive involved in the DREAMT project can short 10-minute didactic lecture on a Experience) – which allows participants continue to refer patients to the dementia topic and discussion of a case to see and experience the world through geriatrician for assessment and put forward by an AICCHS clinician. the eyes of a person living with dementia management advice. The same geriatrician Case conferences will involve the (Dementia Australia 2020). will be involved in our next project, presentation of de-identified cases and Workforce training and support is Dementia ECHO (described below), as the discussion with the expert members. important to ensure local health workers medical specialist on the panel. The process is designed to encourage and other clinicians are familiar with closer collaboration between primary care evidence-based approaches to dementia Future directions and specialist services; increase clinical care; and are confident delivering these The focus of the DREAMT project was peer support between communities and as part of routine practice. To help with mainly on Indigenous Health Workers increase the capabilities of local health the coordination of the DREAMT who were employed to act as the local services. Dementia ECHO topics will program, we also developed practical dementia contact – responsible for relate to dementia knowledge, dementia guidelines to simplify the steps involved screening, community and patient assessment, telehealth case preparation, in screening documentation, education and referral to specialists. In telehealth coordination, and community prioritisation of patients, patient hindsight, we believe that a more education. education, telehealth referral processes productive approach would be to engage To assist with the promotion of the and billing procedures. the wider primary care team – including project and its delivery throughout The uptake of telehealth was slow GPs, nurses, allied health staff and IHWs. Queensland, the COH is partnering with during the project. Of the first 20 KICA Developing new systems or services the Queensland Aboriginal and Islander assessments done during the project, only which promote closer engagement Health Council (QAIHC). ■ six patients (30%) required a telehealth between these primary care service appointment with the geriatrician. We providers and dementia specialists may For further information about the Dementia ECHO program, contact The University of attributed the low numbers of patients be what is needed to encourage the Queensland’s Centre for Online Health screened during the project to delays in translation of expert knowledge into (COH) (Dr Helen Haydon) by email: establishing routine dementia screening local services. [email protected] services, the availability of health In some communities, the connection workers to complete the assessments, as between primary- and tertiary-level care For more information about the DREAMT well as the competing health priorities is fragmented. The next stage of our project and the work of the COH, visit mentioned above. project is called Dementia ECHO and www.coh.centre.uq.edu.au While funding allowed for the involves the development of a Acknowledgments employment of an IHW in each Queensland-wide education and The Centre for Online Health acknowledges the community for the duration of the project, telementoring program. The project, Traditional Custodians of the land, and pays we have managed to maintain ongoing which started in July 2020 and runs to respect to Elders past, present and future and access to telehealth services for those June 2022, will use the Project ECHO acknowledges Aboriginal and Torres Strait

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Review Of The Research. Canberra: Alzheimer’s Australia. Available at: bit.ly/3qu3NHl. Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S et al (2020) Dementia Prevention, Intervention, and Care: 2020 Report Of The Lancet Commission. The Lancet (British Edition) 396(10248) 413-446. LoGiudice D, Smith K, Thomas J, From left: Anthony Smith, Helen Haydon, Emma Thomas, Centaine Snoswell and Liam Caffery Lautenschlager NT, Almeida OP, Atkinson D, Flicker L (2006) Kimberley Indigenous Cognitive ■ Professor Anthony Smith is Director of the Centre for Online Health, Centre for Health Services Assessment tool (KICA): Development of a Research, The University of Queensland (UQ) Australia, and Adjunct Professor of Digital Health and Cognitive Assessment Tool for Older Telehealth, Centre for Innovative Medical Technology, University of Southern Denmark; Dr Helen Indigenous Australians. International Haydon, Dr Emma Thomas, and Dr Centaine Snoswell are Research Fellows at the Centre for Online Psychogeriatrics 18(2) 269-280. Health; Associate Professor Liam Caffery is a Principal Research Fellow at the Centre for Online Russell S, Quigley R, Strivens E et al (2019) Health. To follow up on this article contact Professor Anthony Smith at [email protected] Validation Of The Kimberley Indigenous Cognitive Assessment Short Form (KICA- screen) For Telehealth. Journal of Telemedicine Islander people’s relationship with Country, and References and Telecare doi:10.1177/1357633X19860309. their cultural and spiritual beliefs. Bradford NK, Caffery LJ, Smith AC (2016) Smith K, Flicker L, Dwyer A, Atkinson D, We thank the DREAMT project team which Telehealth Services In Rural And Remote Almeida OP, Lautenschlager NT, LoGiudice Dl was comprised of researchers, research Australia: A Systematic Review Of Models Of (2010) Factors Associated With Dementia In assistants, project managers, cultural advisors, Care And Factors Influencing Success And Aboriginal Australians. Australian & New geriatric specialists and technology support Sustainability. Rural and Remote Health Journal Zealand Journal of Psychiatry 44 (10) 888-893. staff. In particular, we thank Christine Howard (Online) 16 4268. Smith AC, Thomas E, Snoswell CL, Haydon H, who was the project manager for the DREAMT Caffery LJ, Bradford NK, Wickramasinghe S, Mehrotra A, Clemensen J, Caffery LJ (2020) project. Core funding was provided by the Hayman N and Smith AC (2016) Outcomes Of Telehealth For Global Emergencies: Australian Government: Dementia and Aged Using Telehealth For The Provision Of Implications For Coronavirus Disease 2019 Care Services (DACS) Fund. The Dementia Healthcare To Aboriginal And Torres Strait (COVID-19). Journal of Telemedicine and ECHO project is funded by the Australian Islander People A Systematic Review. Telecare doi.org/10.1177/1357633X20916567. Government: Indigenous Australians Health Australian and New Zealand Journal of Public Snoswell CL, Caffery LJ, Haydon HM, Program. We also thank all of the health service Health 41(1) 48-53. Wickramasinghe SI, Crumblin K, Smith AC staff and communities in Cherbourg, Caffery LJ, Meiklejohn J, Bradford N, Smith AC, (2019) A Cost-Consequence Analysis Cunnamulla, Charleville and throughout the Langbecker D (2018) How Telehealth Facilitates Comparing Patient Travel, Outreach, And Torres Strait Islands for their contribution and The Provision Of Culturally Appropriate Telehealth Clinic Models For A Specialist support of the DREAMT project; to Metro South Healthcare For Indigenous Australians. Journal Diabetes Service To Indigenous People In Health (Department of Geriatric Medicine and of Telemedicine and Telecare 24(10) 676-682. Queensland. Journal of Telemedicine and PAH Telehealth Centre) for the provision of Dementia Australia (2020) EDIE – Educational Telecare 25(9) 537-544. specialist geriatric telehealth services; to Dementia Immersive Experience. Available at: Strivens W, Craig D (2014) Managing Dementia Dementia Training Australia (via Dementia https://bit.ly/2JtMvcU Related Cognitive Decline In Patients And Their Australia) for providing valuable resources and Flicker L, Holdsworth K (2014) Aboriginal and Caregivers. Australian Family Physician 43(4) expertise; and to QAIHC for its ongoing support. Torres Strait Islander People And Dementia: A 170-174.

Dementia and changed behaviours

NPS MedicineWise has launched a new national education According to NPS MedicineWise medical adviser and GP Dr program focusing on the care of people living with dementia, Anna Samecki, the program’s main focus is on the importance of which aims to reduce unnecessary use of antipsychotics and person-centred care. benzodiazepines and to improve the use of non-pharmacological “Antipsychotics and benzodiazepines have a limited role and techniques to support people with dementia who are experiencing they should not be used first line. If they are needed, the program changed or responsive behaviours. The program – Dementia and highlights the importance of collaboration between the person or Changed Behaviours: A Person-Centred Approach – is carer and the healthcare team in management decisions, which aimed at GPs, pharmacists and nurses who care for people living includes obtaining informed consent. These medicines should be with dementia in the community and in residential aged care used at the lowest possible dose, with a plan in place to review, facilities, as well as people living with dementia and family carers. wean and stop,” says Dr Samecki. NPS MedicineWise says the program’s key elements include The program has been developed in consultation with key educational visits to individual GPs and small groups in general stakeholders in aged care including Dementia Training Australia practices who work in the aged care sector; a multimodal (DTA); Ellie Newman, Dr Andrew Stafford, Dr Margaret Winbolt educational program for aged care facilities aimed at supporting and Dr Allan Shell from DTA have been part of multidisciplinary champion nurses and pharmacists working in the sector; webinars panels within the program’s webinars. The program has also for GPs, pharmacists and nurses; and online resources for collated a collection of guidelines and resources relating to the consumers and GPs. Two webinars are already available to view topic which is available on NPS MedicineWise’s website. on demand: ‘Working together to enhance transitions of care for people with dementia’, and ‘Dementia: a multi-disciplinary For more information on the program, go to approach to caring for people with changed behaviours’. https://bit.ly/33fH5IT

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 23 RURAL & REMOTE DEMENTIA CARE A rights-based approach to dementia-inclusive public spaces

People living with dementia and their carers in rural and regional areas face particular challenges around loneliness and isolation, heightened by a lack of access to dementia-inclusive outdoor and public spaces. Carmela Leone, Rachel Winterton and Irene Blackberry are undertaking a study in rural and regional Victoria exploring the rights of people with dementia and carers to participation, inclusion and access to public space

ithout access to public spaces, people living with dementia and Wtheir carers are denied opportunities to create and build social relationships and participate in their communities. For those living in rural areas, the combination of a rural setting and dementia symptoms can lead to further exclusion (Forbes et al 2011). People living with dementia have a right to participate in community life (Downs 2013), and dementia-friendly communities need to ensure they are inclusive of and accessible for people living with dementia – otherwise they inadvertently encourage segregation through defining people merely by a diagnostic label (Rahman & Swaffer 2018). Adapting streets to include distinctive landmarks such as street furniture or gardens to act This article argues for a rights-based as visual cues can contribute to creating ‘dementia-friendly’ public spaces approach to dementia-inclusive spaces in response to the stigma, isolation and a normal part of ageing, and that nothing Public spaces that are unsafe or social exclusion experienced by both can be done to improve the wellbeing of inaccessible for people living with people living with dementia and carers, people living with dementia, have resulted dementia are not only due to a neglect of with a focus on those living in rural and in less prioritisation and action among accessibility needs, but also because of regional communities. policy makers (Banerjee 2010). Outdoor ableist values, that is, discriminatory environments and public spaces such as attitudes and assumptions that exclude Stigma and social exclusion parks and shopping centres, are rarely people with disability, which are reflected People living with dementia often thought of as spaces where people living in the spaces created by designers and experience social exclusion due to with dementia might spend time and thus, planners (Blackman et al 2003). predominantly negative public perceptions accessibility and amenities for people Perceptions and responses to dementia (Biggs et al 2019). Stigma associated with living with dementia are often neglected in the public domain generate their own dementia contributes to social exclusion (Blackman et al 2003). forms of exclusion and disadvantage, both and isolation, even though people living A lack of understanding around the for people living with dementia and their with dementia are able to perform usual effects of impairment and the practical carers (Biggs et al 2019). Stigma associated activities in the early stages and, with some difficulties experienced by people living with dementia can negatively affect people adaptation of activities, in the middle and with dementia has resulted in the failure to living with dementia and their carers later stages (Alzheimer’s Disease adapt or design outdoor environments like (Phillipson et al 2018), and for both parties, International 2012). Despite heightened streets and gardens to enable people living their roles within their communities and public awareness campaigns, many people with dementia and carers to remain active social networks are threatened early in the are still unaware of the progression of and engaged (Milligan & Thomas 2016). dementia journey (Henwood & Downs dementia and hold inaccurate assumptions Ensuring footpaths are wide, flat and not 2014). Furthermore, people living with about its effects, as well as negative slippery, and adapting streets to include dementia and their carers experience social stereotypes about behaviours associated distinctive landmarks such as street exclusion through the loss of friends and with dementia (Alzheimer’s Disease furniture or trees at junctions (Mitchell & shrinking social circles (Biggs et al 2019). International 2012). Burton 2010) and gardens to include Just as people living with dementia are at Attitudes and assumptions about people distinctive entrances, with ornaments and risk of exclusion and isolation in their living with dementia contribute to the way bright or scented plants as visual cues communities (Miles & Pritchard-Wilkes that public spaces are designed, planned (Mitchell et al 2003) can contribute to 2018), so too are their carers (Greenwood et and used. Misconceptions that dementia is creating ‘dementia-friendly’ public spaces. al 2018). In rural areas, carers of people

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living with dementia can face particular aims to remove socially imposed barriers challenges around loneliness and isolation The rights-based approach and challenge human rights violations (Keating et al 2011), and the lack of A rights-based approach to dementia (Shakespeare et al 2019). Furthermore, it anonymity often characteristic of rural considers: repositions the person living with communities may limit their participation dementia as a citizen, invoking words in local support groups and carer activities • Human rights • Social model such as ‘entitlement, ‘fairness’ and ‘justice’, (Forbes et al 2011). which can reframe the needs of people • Inclusion • The collective For people living with dementia in rural living with dementia as legitimate and communities, the combination of a rural • Equality • Home having value (Bartlett & O’Connor 2010). setting and dementia symptoms can lead • Participation • Capabilities Recognising people living with to further exclusion (Forbes et al 2011). • Social justice • Assets dementia as citizens with rights can help Issues such as distance and relative challenge the attitudinal barriers and • Personhood isolation, access to services, a lack of (Cahill 2018) ableist values that influence the design, resources, and a fear of stigmatisation planning and use of public space. associated with living in small communities, exacerbate the exclusion dementia-friendly communities can A rights-based study experienced by people living with inspire different ways of thinking about Research currently being undertaken by dementia (Forbes et al 2011). dementia, particularly where models our team at the John Richards Centre for emphasise participation, inclusion and Rural Ageing Research, La Trobe Dementia-friendly communities access for people living with dementia University in Bendigo, Victoria, uses a There are dementia-friendly communities (Williamson 2016). rights-based approach to explore attitudes around the world, addressing the stigma and assumptions towards rights to public and social exclusion experienced by Violation of rights space for people living with dementia and people living with dementia and their The exclusion of people living with carers. The PhD study, which is being carers (Phillipson et al 2018). Definitions of dementia from public spaces and funded by, and conducted as part of the ‘dementia-friendly’ and ‘community’ are neighbourhoods essentially violates their Webster Rural and Regional Dementia varied, and a dementia-friendly rights to participation, inclusion and Care Project, focuses on the rights to community can cover a diverse range of accessibility (Steele et al 2019). Moreover, participation, inclusion and access, with a activities, projects and/or initiatives while the rights of people living with view to building a foundation for (Williamson 2016). It may be a place or dementia are often cited as the developing dementia-inclusive culture, an organisation, a group of foundational basis for dementia-friendly environments. individuals, a virtual community, or social communities, a political understanding of The study involves community and physical environments (Lin 2017). genuine participation is often lacking stakeholders, people living with Dementia-friendly communities can be (Williamson 2016). dementia, and carers as research geographical communities or Few dementia-friendly communities participants, and is part of a larger, communities of interest with the aim of explicitly identify human rights as a ongoing project which involves including, empowering and supporting theoretical underpinning (Hebert & consultation with carers, and working people living with dementia and their Scales 2017), and few focus on rights as a with key stakeholders and community carers in all areas of life, from services to starting point or make explicit reference members in the City of Greater Bendigo to public transport (Buckner et al 2018). to a rights-based approach (Buckner et al improve dementia care pathways within Another recent research project 2019). Consequently, some researchers rural and regional Victoria. undertaken by our team aimed to bridge have suggested that dementia-friendly The study addresses a knowledge gap the geographical barriers faced by those communities fail to achieve genuine relating to understanding attitudes and living in rural areas, by creating a virtual rights-based environments for people assumptions that contribute to the lack of dementia-friendly community called living with dementia (Alden et al 2018). access to public spaces for people living Verily Connect (www.verilyconnect. Notably, some communities aim to be with dementia, as while access to the org.au) (Blackberry et al 2019). This is an ‘dementia-inclusive’ as distinct from outdoors is essentially a matter of human online meeting place for carers to support ‘dementia-friendly’, aiming for greater rights and social justice (Argyle et al 2016), each other in a dementia-friendly depth of activity than initial public people living with dementia continue to community. engagement and awareness-raising be ‘left behind’ in terms of inclusion and Despite their growing popularity, there (Chadborn & van der Marck 2019). access to built environments (Swaffer is no single model for what a dementia- 2020). friendly community looks like (Biglieri A rights-based approach The study will involve participants from 2018; Williamson 2016), no one template, Calls for a rights-based approach to both the regional centre and outer rural and definitions of ‘dementia-friendly’ are dementia (see box this page) recognise that areas of Bendigo. In rural communities, varied (Williamson 2016). Diverse models people living with dementia face strong social networks and informal social of dementia-friendly communities reflect challenges due to social and material/built support can play an important role in the reality that each community is in itself environments (Alden et al 2019; Milligan & creating dementia-friendly communities diverse and made up of different histories, Thomas 2016; Thomas & Milligan 2018). (Wiersma & Denton 2016). Social networks cultures and perspectives (Williamson Discriminatory attitudes coupled with are also important to the uptake of care 2016). outdoor environments/ services, as they can facilitate the collection While the lack of a standard approach public spaces that fail to accommodate the and sharing of health-related information to establishing a dementia-friendly needs of people living with dementia and have the potential to change patterns community might invite criticism, there create barriers to social inclusion and of access to health care (Griffiths et al 2012). are advantages as one size does not community participation. Public spaces facilitate social connection always fit all. A diversity of approaches to A rights-based approach to dementia (Clark 2009), and as spaces for dialogue

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 25 RURAL & REMOTE DEMENTIA CARE

and exchange, public spaces are therefore Blackberry I, Wilding C, Perkins D et al (2019) Milligan C, Thomas CJ (2016) Dementia And The Virtual Dementia-Friendly Rural Communities. Social Model Of Disability: Does Responsibility To important for people living with dementia Australian Journal of Dementia Care 7(6) 11-13 Adjust Lie With Society Rather Than People With and their carers (Charras 2020). (December 2018/January 2019). Dementia? Signpost 21(3) 5-16. The study is seeking to attract Blackman T, Mitchell L, Burton E, Jenks M, Mitchell L, Burton E, Raman S, Blackman T, Jenks participants (see below) from diverse Parsons M, Raman S, Williams K (2003) The M, Williams K (2003) Making The Outside World social networks in regional and rural Accessibility Of Public Spaces For People With Dementia-Friendly: Design Issues And areas, including Heathcote, Victoria, Dementia: A New Priority For The ‘Open City’. Considerations. Environment and Planning B: where a dementia-friendly village project Disability & Society 18(3) 357-371. Planning and Design 30(4) 605-632. is currently being planned (with Irene Buckner S, Mattocks C, Rimmer M, Lafortune L Mitchell L, Burton E (2010) Designing Dementia- Blackberry as advisor, who is currently (2018) An Evaluation Tool For Age- Friendly Neighbourhoods: Helping People With working with Rachel Winterton to Friendly And Dementia Friendly Communities. Dementia To Get Out And About. Journal of Working With Older People 22(1) 48-58. Integrated Care 18(6) 11-18. develop a research program for the Buckner S, Darlington N, Woodward M et al (2019) Phillipson L, Hall D, Cridland E, Fleming R, Heathcote project). Dementia Friendly Communities In England: A Brennan-Horley C, Guggisberg N, Frost D, Hasan Findings from the City of Greater Scoping Study. International Journal of Geriatric H (2018) Involvement Of People With Dementia In Bendigo PhD study will inform rights- Psychiatry 1-9. Raising Awareness And Changing Attitudes In A based dementia education and awareness- Cahill S (2018) Dementia and Human Rights. Dementia Friendly Community Pilot Project. raising programs. These will be aimed at Bristol, UK: Policy Press. Dementia 0(0) 1-16. Bendigo community stakeholders and Chadborn N, Van der Marck M (2019) Illuminating Rahman S, Swaffer K (2018) Assets-based community groups that play a role in the Community Services And Assets Towards Better Approaches And Dementia-Friendly design/planning of public spaces, such as Dementia Care. Perspectives in Public Health Communities. Dementia 17(2) 131-137. local government, or that are involved in 139(3) 125. Shakespeare T, Zeilig H, Mittler P (2019) Rights In Charras K (2020) Human Rights, Design And Mind: Thinking Differently About Dementia And the use of public space, by way of Dementia: Moving Towards An Inclusive Approach. Disability. Dementia 18(3) 1075-1088. commercial or community activities, such In Fleming R, Zeisel, J, Bennett K (Eds) World Steele L, Swaffer K, Phillipson L, Fleming R (2019) as businesses that operate shopping centre Alzheimer Report 2020: Design Dignity Dementia: Questioning Segregation Of People Living With cafes or organisations that conduct Dementia-Related Design And The Built Dementia In Australia: An International Human walking groups. The implementation of Environment (1) 113-116. England: Alzheimer’s Rights Approach To Care Homes. Laws 8(3) 18. these programs can then form the Disease International. Swaffer K (2020) Disability Rights, Enabling Design foundation for a rights-based dementia- Clark A (2009) From Neighbourhood To Network: And Dementia. In Fleming R, Zeisel, J, Bennett K friendly community in the City of Greater A Review Of The Significance Of Neighbourhood In (Eds) World Alzheimer Report 2020: Design Dignity Bendigo. The PhD study will be Studies Of Social Relations. Geography Dementia: Dementia-Related Design And The Built completed in 2022. ■ Compass 3(4) 1559-1578. Environment (1) 117-118. England: Alzheimer’s Downs M (2013) Putting People – And Disease International. To hear Carmela Leone discuss the project Compassion – First: The United Kingdom’s Thomas C, Milligan C (2018) Dementia, Disability described in this article, visit: Approach To Person-Centered Care For Rights And Disablism: Understanding The Social https://youtu.be/bt_ly8RncBI. For more Individuals With Dementia. Journal of the American Position Of People Living With Dementia. Disability information about The John Richards Centre Society on Aging 37(3) 53-59. & Society 33(1) 115-131. for Rural Ageing Research projects visit Forbes D, Ward-Griffin C, Kloseck M, Mendelsohn Wiersma EC, Denton A (2016) From Social www.latrobe.edu.au/jrc M, St-Amant O, DeForge R, Clark K (2011) Her Network To Safety Net: Dementia-Friendly World Gets Smaller And Smaller With Nothing To Communities In Rural Northern References Look Forward To: Dimensions Of Social Inclusion Ontario. Dementia 15(1) 51-68. Alden S, Wigfield A, Kispeter E, Karania, V (2019) And Exclusion Among Rural Dementia Care Williamson T (2016) Mapping Dementia-Friendly Changing The Narrative: The Role Of Frontline Networks. Online Journal of Rural Nursing & Health Communities Across Europe. Available at: Worker Attitudes And Beliefs In Shaping Dementia- Care 11(2) 27. https://bit.ly/3mWecJN. Friendly Services In England. Disability & Society Greenwood N, Mezey G, Smith R (2018) Social 34(5) 775-796. ■ ‘Dementia-friendly communities in Exclusion In Adult Informal Carers: A Systematic Alzheimer’s Disease International (2012) World practice’, see Research News p42. Narrative Review Of The Experiences Of Informal Alzheimer Report 2012: Overcoming The Stigma Carers Of People With Dementia And Mental Of Dementia. Available at: Illness. Maturitas 112 39-45. www.alz.co.uk/research/WorldAlzheimerReport20 Griffiths F, Cave J, Boardman F, Ren J, 12.pdf. Pawlikowska T, Ball R, Clarke A, Cohen A (2012) Argyle E, Dening T, Bartlett, P (2016) Space, The Social Networks – The Future For Health Care Final Frontier: Outdoor Access For People Living Delivery. Social Science & Medicine 75(12) 2233- With Dementia. Aging & Mental Health 21(10) 2241. 1005-1006. Hebert DA, Scales K (2017) Dementia Friendly Banerjee S (2010) Living Well With Dementia – Initiatives: A State Of The Science Review. Development Of The National Dementia Strategy Dementia 0(0) 1-38. For England. International Journal of Geriatric Henwood C, Downs M (2014) Dementia-Friendly ■ From left: Carmela Leone is a PhD candidate Psychiatry 25(9) 917-922. Communities. In: M Downs, B Bowers (Eds) with the Webster Rural and Regional Dementia Bartlett R, O’Connor D (2010) Broadening The Excellence In Dementia Care: Research Into Care Project, at the John Richards Centre for Dementia Debate: Towards Social Citizenship. Practice 20-25. Berkshire: Open University Press. Rural Ageing Research, La Trobe University; Dr Bristol, UK: Policy Press. Keating N, Swindle J, Fletcher S (2011) Aging In Rachel Winterton is a Senior Research Fellow at Biggs S, Haapala I, Carr A (2019) Dementia In The Rural Canada: A Retrospective And the John Richards Centre for Rural Ageing Public Domain Voice And Age-Based Perspectives Review. Canadian Journal on Aging/La Revue Research, La Trobe University; and Professor Irene On Dementia, Social Disadvantage And Public Canadienne du Vieillissement 30(3) 323-338. Blackberry is the John Richards Chair of Rural Health Campaigning. Melbourne: University of Lin SY (2017) ‘Dementia-Friendly Communities’ Ageing and Aged Care Research and Director of Melbourne. And Being Dementia Friendly In Healthcare the John Richards Centre for Rural Ageing Biglieri S (2018) Implementing Dementia-Friendly Settings. Current Opinion In Psychiatry 30(2) 145. Research, La Trobe University. If anyone is Land Use Planning: An Evaluation Of Current Miles S, Pritchard-Wilkes V (2018) Dementia- interested in learning more about this study, Literature And Financial Implications For Greenfield Friendly Housing Charter. Working With Older please contact Carmela at Development In Suburban Canada. Planning People 22(2) 76-82. [email protected] Practice & Research 33(3) 264-290.

26 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 RURAL & REMOTE DEMENTIA CARE AJDC Journal Club at work Transitional Nurse Practitioner Sandy Everson, from the Mid North Coast Local Health District in NSW, explains how she uses the AJDC to facilitate a Journal Club with her team, and the positive actions that have resulted

e began our Dementia Care Journal Club in August 2019 as Wone part of a joint work program involving Dementia Training Australia (DTA) and the Coffs Clinical Network, where DTA developed a Tailored Training Program to provide education and support to nursing staff. I am a Transitional Nurse Practitioner in Psychogeriatrics and I facilitate the Dementia Care Journal Club across three sites within the Mid North Coast Local Health District: a medical unit at Coffs Harbour Health Campus, a general ward at Macksville Hospital and Hartley House ward at Bellingen Hospital. Each month I identify an article from the Australian Journal of Dementia Care that is relevant to those working in an acute care setting and circulate the article to nursing staff at the three sites. All staff on those wards are invited to be part of the Journal Club and to read the article at their leisure. Sandy Everson (far left) facilitates a meeting of The Mid North Coast Local Health District’s From August until early 2020, any nurses who wished to attend the Journal Dementia Care Journal Club with nurses from one of the medical units at Coffs Harbour Club discussion could do so, either on- Health Campus site or via videoconferencing. We generally had about a dozen or more ward settings. For example, in one Since the COVID-19 pandemic, I have staff attend in total. I prepared some session we brainstormed strategies that still distributed an article and discussion questions to aid discussion and together nurses can use in hospital to support points to the teams on a monthly basis, we share ideas for how concepts from sensory changes for a person with with suggestions for how to put the the article can be adapted into local dementia. ideas in the article into practice. Two of Complimentary offer for rural and remote workforce

Dementia Training Australia (DTA)* supports the dementia care Journal Club is ideal for team discussions, in-house training and workforce in rural and remote Australia with training and resources. individual professional development. Until 31 March 2021, DTA is offering eligible aged care If you, or someone you know, works in dementia care in rural or organisations in rural and remote Australia a complimentary 12- remote Australia, your organisation may be eligible. Register via month subscription to the Australian Journal of Dementia Care the DTA website at www.dta.com.au. (Please note: postcodes will (AJDC), including access to the AJDC Journal Club Discussion be used to determine eligibility; one subscription per organisation; Guides (four issues, valued at $99, including GST and postage). offer not available to existing AJDC subscribers). The aim is to assist rural and remote organisations better access dementia-related news, views, research and professional The AJDC Journal Club is an initiative of DTA and the AJDC and is development. available only to eligible aged care organisations as part of this complimentary subscription offer, and to DTA’s Tailored Training The complimentary subscription includes a free Journal Club Package clients who are new subscribers to the AJDC. For Discussion Guide with each issue of the AJDC. The Guide information about DTA’s Tailored Training Packages visit contains questions relating to four published articles in each issue www.dta.com.au/tailored-training-programs/ of the AJDC, along with links to resources and additional reading. It offers dementia care staff an opportunity to reflect on practice *Dementia Training Australia manages the Australian Journal of and consider how the ideas in AJDC articles might be used in Dementia Care on behalf of the publisher, the University of practice. Wollongong.

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the three teams have used these resources within their own local education sessions. We are hoping to get going with videoconferencing again KT shapes new soon to be able to link teams up for a broader discussion. Articles discussed by our Journal Club include: • ‘Toilets: no laughing matter’ (from environments AJDC, Feb/Mar 2019). • ‘Look elsewhere: the need for alternatives to antipsychotics’ (from AJDC, Oct/Nov 2012). • ‘Making communities more dementia- resources friendly’ (from AJDC, Aug/Sep 2019). • ‘New reports on hospital care, medication use’ (news article in AJDC, Fallon Forbes (pictured), Service Manager with Oct/Nov 2019). DTA’s Environments Team, shares how • ‘Seeing dementia through the senses’ (from AJDC, Oct/Nov 2019). Knowledge Translation (KT) principles helped • ‘Royal Commission News: ‘Neglect’ inform the team’s response to meeting the Interim Report published’ (news education and training needs of the dementia article in AJDC, Dec 2019/Jan 2020). care workforce, especially those in regional, rural As a result of the discussions, staff and remote Australia – in the year of a pandemic have taken some positive actions such as improving the signage for toilet areas, and putting up posters on how to ementia Training Australia’s (DTA) implementation – which presented us complete the TOP 5 tool. They are also Environments Team has a long and with an opportunity to review our showing an improved awareness of the Ddedicated history of delivery to services and resources. side-effects of antipsychotic regional, rural and remote Australia. During the development and review medications. The World Alzheimer Report 2020 of knowledge products, knowledge Overall, the Journal Club has ensured highlighted the extensive nature of translators must consider the an ongoing focus on caring for people DTA’s onsite education service since its development of resources not only in with a cognitive impairment in hospital. inception, with 53% of the consultations terms of the needs of the audience, but By promoting discussion and reflection taking place in regional and remote also how to frame the key messages so on interesting topics that are relevant to locations across Australia in a typical the knowledge is consumable in a time-poor nurses working in the acute year (Fleming et al 2020, p187). The variety of formats to accommodate care setting, we are taking a creative consultancy program, funded by the different audiences (Grimshaw et al approach to education. ■ Department of Health, enabled DTA’s 2012). expert team to go onsite, minimising the This approach led our team to ■ Sandy Everson is a Transitional Nurse need for those who live in regional and develop and launch a suite of Practitioner in Psychogeriatrics with Mid remote communities to travel extensively Environments Activity Cards, a new North Coast Local Health District in NSW. Sandy can be contacted via for education, as they are so often webinar series, an online course and a [email protected] required to. multimodal approach to the Then, 2020 happened. The Environments Consultancy Service Environments Team could no longer go during 2020. onsite to deliver education on how to use existing environments effectively, New approaches and restrictions only emphasised how With an aged care workforce under important it was to use the environment considerable pressure, the in meaningful ways. Environments Team wanted to provide short yet practical, evidence-based The KT framework information on how to improve existing DTA’s education and training is environments. developed within a Knowledge Translation (KT) framework, whereby Activity Cards resources and services aim to guide In October 2020 we launched the first set learners from ‘thinking’ to ‘doing’. A of Activity Cards. The cards aim to key KT component is the assessment of deliver information that is responsive to potential barriers that might impede the the current needs of the industry. The implementation of new knowledge, and first series addressed COVID-19 Each month Journal Club facilitator Sandy then tailoring educational interventions challenges experienced by aged care Everson identifies an article from the AJDC to overcome them (Powell et al 2015). If staff, with each card providing an that’s relevant to those working in acute there was anything that 2020 was rich example of a change that could improve care, for discussion at Journal Club in, it was barriers to education and a person living with dementia’s quality

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further services and resources, ensuring that we continue to meet the needs of Activity Card #3 these areas. Make Lunch into a Richer Experience Some food preparation visible prior to a meal so residents can see, hear and smell it. Looking forward We will also be launching a Regional Workshop series from February 2021, which will involve DTA Environments staff visiting regional locations across Australia to run half-day workshops on ‘Creating supportive environments’. These workshops aim to support care staff, service managers and building professionals both to use existing environments to better support people living with dementia, as well as to develop better buildings. 2020 certainly presented many challenges that would be better left in the past, but it also presented opportunities to review the delivery of Design Principle 7 Create a Familiar Place DTA’s Environments education across Aged Care Quality Standard 5 Service environment dta.com.au Australia. Online resources will continue to be offered in 2021, but we are also looking forward to re- DTA Activity Card 3 from Series 1, titled Ideas To Spark Conversation At Work For Life In introducing face-to-face environments COVID-19 Times. The full series of Activity Cards is available from the DTA website education. Limited places are still available in our Environments Consultancy service, which now offers a multimodal of life, for example how to create environments and design, but also learn approach to education. The team will stimulating activities while providing from the experiences of others engaged continue to support staff onsite to opportunities to be alone or engage with with the same learning opportunity. The consider the environments from the others. The cards were emailed to all on webinar series will continue early in perspective of the person living with the DTA mailing list and each card 2021. dementia, but the consultancy program has been downloaded over 12,000 now also includes online learning times. The second set of Activity e-Learning course opportunities, incorporating the suite of Cards will be released early in 2021. After six months of development, DTA new resources. ■ launched its first environment-specific Webinar Series e-Learning course in September 2020. If you would like more information about any of the DTA Environments services and The themes of each Activity Card are The Environments Team developed resources, to express interest in the also addressed in the DTA ‘Creating supportive environment for workshop series, or to be added to the Environments Webinar Series, guiding people living with dementia’, a three- Environments mailing list and to join our the target audience further down the hour course aimed at introducing virtual community, email dta- learning pathway. learners to why environments matter [email protected]. The resources The webinar series was launched in and the role staff play in remaking described in this article can all be November 2020 with ‘Meaningful environments every day (see article accessed via DTA’s website at Engagement Outdoors’, followed by from the Oct/Nov/Dec 2020 issue of www.dta.com.au ‘Meaningful Engagement Using Indoor AJDC, Creating Supportive Environments, References Spaces’, building on the practical at www.journalofdementiacare.com). Fleming R, Zeisel J, Bennett K (2020) World examples offered in the first series of The course received over 2000 Alzheimer Report 2020: Design, Dignity, Activity Cards. The first two webinars enrolments within the first eight weeks Dementia: Dementia-Related Design And The were attended by 702 participants, with of release, with 585 completions by Built Environment. Vol 1. London: Alzheimer’s roughly a third from regional and November 2020. Of those who Disease International. remote Australia attending the first completed the course, 32% of learners Grimshaw JM, Eccles MP, Lavis JN et al (2012) session (data was not available for the were from regional, rural and remote Knowledge Translation Of Research Findings. second session at the time of going to Australia. Implementation Science 7 50 press). Each person who has completed the doi.org/10.1186/1748-5908-7-50. Participants were invited to engage course was invited to attend webinar Powell BJ, Waltz TJ, Chinman MJ et al (2015) A Refined Compilation Of Implementation with the content by providing examples sessions in December so the Strategies: Results From The Expert of challenges they were currently Environments Team could continue to Recommendations For Implementing Change experiencing or how they had overcome engage with learners via the virtual (ERIC) project. Implementation Science 10 21 them. The aim of these webinars is to community. doi.org/10.1186/s13012-015-0209-1. create a virtual community where those A key objective of these discussions Seemann N (2020) Creating Supportive in the aged care workforce can seek was to engage with those from rural and Environments. Australian Journal of Dementia advice from a team of experts in remote Australia, directing them to Care 9(4) 24-25.

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 29 RURAL & REMOTE DEMENTIA CARE Rethinking rural dementia care

Marita Chisholm, Kaye Knight, Catherine Ramsdale, Jo Martin and Wendy James describe how a big effort by their small Victorian health service to do things differently during two COVID-19 lockdowns helped people with dementia living in the community and residential aged care

020 saw the unprecedented impact of the coronavirus pandemic on the 2healthcare industry worldwide. One of the biggest impacts for Australia was the restricted access to health care facilities as well as the limited provision of services in the community. For many, this isolation and restricted social interaction from family was a new experience, however, for rural communities, adversity, the tyranny of distance and isolation comes with the territory. Rural communities and people are known for their resilience and innovation when faced with challenges to everyday life caused by events beyond their control. So how did a small rural Victorian health service address this challenge? This brief article outlines some of the ways Rural Northwest Health supported consumers with dementia or cognitive impairment, along with their carers, living Co-author Catherine Ramsdale, Rural Northwest Health’s Wellbeing Coordinator and in the community and in residential aged community Memory Support Nurse, with one of the wellbeing packs distributed to care during an extended period of community-based consumers during the COVID-19 lockdowns. Each pack included lockdown and restricted interactions with information and activities based on the person’s specific interests the outside world during COVID-19. years of age in Victoria and is a high-risk Health developed a ‘Keeping In Touch Our community community for COVID-19. (KIT)’ coordinator role at both residential Rural Northwest Health (RNH) is a small aged care campuses. rural Victorian health service with Connecting in residential care campuses in Warracknabeal, Beulah and Within our residential aged care facilities, Connecting in the community Hopetoun. It is located about 400km we implemented a broad range of The people living with dementia or north-west of Melbourne. The measures to enable connection between cognitive impairment in our community organisation offers a range of services to our residential care consumers and their and their carers were not forgotten either. the Yarriambiack Shire and broader significant others, and to maintain A newly established Living Well Program Wimmera Mallee Region, including: acute consumer engagement with the wider designed to engage people in positive, care, palliative care, urgent care, aged care world without residents needing to leave purpose-driven activities while providing (including a 15-bed memory support their care home. These included the carer respite had only just commenced unit), respite care, community-based introduction of CareApp, a communication onsite when the first COVID-19 lockdown memory support and carer support platform for aged care providers to share occurred in Victoria in March 2020. The services, volunteer programs, and an photos, messages between consumers and comprehensive day program located at the extensive range of community health and families as well as providing a Live Chat Warracknabeal campus provides a home- allied health services. One such service, function; letters from surrounding schools; like environment, integrating wellness and the Wellbeing Team including a Memory setting up an email specific for families to reablement approaches to assist people Support Nurse, provides support directly send photos, letters etc. to be shared with living with dementia or cognitive to community members to access and their loved one; FaceTime, phone calls and impairment to maintain essential life skills navigate the health service. a drive-by visit where residents from the including: cooking, shopping, gentle The Mallee region is known for its harsh Hopetoun and Warracknabeal aged care exercise sessions, art and craft activities, climate and the hardships that come with facilities sat in the car park while family gardening, and interactive programs. this. People who forge a living here are and friends drove past to say hello. To Faced with suspension of the program’s tough. Yarriambiack Shire has one of the manage all the different options to help onsite activities and the prospect of highest percentages of people over 80 keep families connected, Rural Northwest participants and their carers being isolated

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Uninterrupted support Feedback from the community was that this support was invaluable. When the second lockdown occurred in June 2020, we were prepared because we had already found a new way of delivering services and support during the first lockdown. The significance of finding new ways of doing things from the beginning of COVID-19 could not be underestimated; it allowed us to provide ongoing support without interruption for people living with dementia or cognitive impairment in the community and their carers.

Conclusion Now that we are on the other side of the second lockdown, our onsite Living Well day program has recommenced with memory support continuing to be offered in the community. While to date our community has been spared a COVID outbreak, we continue to implement the same level of safety measures as health services across Australia to ensure our community is protected. And, as is so often the case, the connectedness and trust within our small community has proven one of the greatest assets when supporting for people living with dementia or cognitive impairment and their carers during Residents (above and below) from Rural Northwest Health’s Hopetoun and Warracknabeal extraordinary times. ■ aged care facilities were able to say hello to family and friends from a COVID-safe distance during a drive-by visit. Photos courtesy Rural Northwest Health at home without support or respite, the visited the person living with dementia or team had to quickly adapt and innovate. cognitive impairment and walked with A benefit of providing health services in them on a route of their choice (eg, to get ■ From left: Dr Marita Chisholm is Innovation and a small rural community is the connection the newspaper). Another COVID-safe Projects Manager Older Persons Health, Rural with, and knowledge of, individuals and strategy has been to sit and chat with the Northwest Health, Warracknabeal, Victoria, and their extended family/support base. person living with dementia or cognitive an AJDC Editorial Advisor; Dr Kaye Knight is Executive Manager, People and Culture, Relationships are built on trust and first- impairment outside their house chatting. Catherine Ramsdale is Wellbeing Coordinator, Jo hand understanding of the community. This allowed family members to have Martin is Executive Manager Community Health, Rural people are stoic and often won’t time to attend to tasks including leaving and Wendy James is Executive Manager Clinical reach out for help. These trust-based the house to get groceries and other Services, all at Rural Northwest Health. To follow relationships meant our community- supplies. We also provided information to up on this article, contact Marita at based consumers readily accepted the assist carers. [email protected] home-based supports offered during COVID-19 in place of the onsite day program. These home supports were tailored to each person’s abilities, capabilities and background – the core focus of the Living Well Program. Person-centred COVID packs were developed by the Wellbeing Team and Memory Support Nurse and distributed to community-based consumers. Each pack included information and activities based on the person’s specific interests (eg, seedlings to plant, reading material of interest, puzzles, games and treats). The Wellbeing Team also offered ‘COVID walks’ where one team member

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Andrew Haszard explains how Community links key Dementia Support Australia and its team of Dementia Consultants have supported to pandemic support people with dementia and care services in rural and remote areas of Australia before and

n estimated two out of five people the individual case. during the COVID-19 pandemic living with dementia live in rural or Advice and recommendations and the specific challenges Aremote towns or communities in provided by DSA Consultants are faced by people in those Australia (IGPA 2017). Dementia Support tailored for each person, their situation Australia is a free service funded by the and environment. Consultants work with communities Australian Government to deliver the family members, care staff and programs across Australia to support associated health services to understand little to no interruption to DSA services, people with dementia where behaviours the person and build knowledge to including across rural and remote impact their care. support people with dementia in the Australia. DSA received more referrals in People living in rural and remote future. April and May 2020 than in any other communities face many challenges period. For instance, the number of including access to primary and DSA’s COVID-19 response referrals received in May 2020 was 65% specialist health care. It is Dementia To ensure continued support during the greater than referrals received in May in Support Australia’s (DSA) commitment COVID-19 pandemic, in April 2020, DSA 2018, and 44% greater than referrals to provide the same standard of access to implemented a Pandemic Response Plan observed in May in 2019. support programs for all Australians, no to let aged care services know that DSA Among the reasons for this rise in matter where they are located. was fully operational during COVID-19. referrals was a greater use of casual or This included more than 1000 cold calls agency staff who required more support, DSA’s work to aged care providers to offer phone care staff who were impacted by travel Since its inception in 2016, access and support and provide any COVID-19 restrictions or quarantine, and more referrals to DSA services has significantly related advice, 3100 resource packages fearful family members worried about increased with Dementia Consultants which were delivered across Australia to things such as what would happen if the based in 35 locations across Australia. As aged care homes, and live chat functions care home went into lockdown. Rural a borderless service, teams respond to and more video conferencing and remote regions were slightly more referrals from anywhere in the country assessments. insulated than metropolitan areas which within 48 hours to a week, depending on As a result of these initiatives there was experienced more outbreaks and had more restrictions. However, one impact the service observed during this time was a 55% increase in the provision of 1:1 support (March/April 2020 compared to March/April 2019). COVID-19 placed enormous pressure on residential aged care staff due to additional tasks involved in maintaining infection control. As part of DSA’s standard practice, consultants broker items or services to support the person with dementia or carers. This ability to offer additional services such as nursing or carer support has meant that busy care staff can still support the person with dementia in need. As an example, DSA provided funding for an additional care worker to spend one-on-one time with a resident to gather further information about their life story, trial initial strategies outlined by the DSA Consultant, and prevent the resident being admitted to hospital while medication changes, recommended by a DSA Clinical Associate, were implemented. Another resident responded positively Areas visited by Dementia Support Australia Dementia Consultants in the six months pre-COVID- when the care home’s cat visited, so DSA 19 lockdowns and the six months post-COVID-19 lockdowns. Images and photos courtesy DSA funded the purchase of a simulated cat

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together, side by side on the journey. Malparara Way is a cross-cultural Cultural resources practice model developed in the early As part of its continuing 1990s. It recognises and values the commitment to build knowledge, skills and resources of the internal cultural capacity local people while assisting them in and knowledge when gaining access to services which are supporting Aboriginal delivered in a culturally appropriate and and Torres Strait Islander effective way. (ATSI) people, DSA has In this spirit of working together they developed resources to link with other health services, align support its consultants calendars and marry up a trip and travel when visiting these in convoy. communities and to In addition to the on-the-ground team, raise awareness of our services. DSA commissioned the Balarinji Aboriginal-owned DSA Dementia Consultants will liaise strategy and design agency to create the design for these resources. The result is with clinical experts about individual based on the artworks Spring Journey (pictured) and Spirit Ancestors. You can learn cases and with DSA medical specialists, more about the resources at: www.dementia.com.au/resources/cultural-resources such as geriatricians or aged psychiatry, who can provide medication reviews and recommendations via telephone, fax, or email. and included recommendations on how Aged Care Assessment Team assessors, Follow up on each client is generally to introduce it to the resident. The care families, allied health, and other services with phone calls at least once a week, to home was very happy with the result, and clinics. discuss how the person with dementia is reporting: “In the remote communities, if you responding to the recommendations and “The resident has been quite settled have those relationships with services whether additional support is required. and loves the cat very much. She that are known to those communities you In rural and remote areas it is optimal to interacts very well with the cat and it can sit and have a yarn and exchange provide follow-up support to someone brings her much joy.” stories,” says Steph who is a DSA who has an existing relationship with the During the pandemic lockdowns, some Dementia Consultant providing services person with dementia who is being communities were completely closed off across the Top End. supported. with no services going in. In addition to “It is important for an Aboriginal being unable to reach clients in these person that you put your face into a Community-based approach remote communities, DSA consultants story. This takes time. Building those Providing services to regional and were unable to visit care homes due to relationships and trust is needed so you remote communities in Australia restrictions and quarantine requirements. understand what is causing the requires a different approach to those in As a result, the number of video behaviour.” urban areas. In Aboriginal and Torres consultations increased by over 100% in A DSA Dementia Consultant based in Strait Islander communities people March/April 2020 compared to the same the Northern Territory has adopted the primarily are referred to DSA because the period in 2019. Malparara Way – the strength of working community needs additional support in

Working together Australia is a large and geographically dispersed country. Due to the sheer distances required to travel and the remoteness of many communities, DSA’s approach to service delivery has been tailored to regional and remote Australia. DSA ensures resources are available so that support can be delivered anywhere in Australia. Risk due to weather, such as floods and heat, are continually assessed. At times, consultants will travel with other services for support and to reduce the risk, travelling with those who know the land and have relationships with the communities they visit. For example, in a remote Indigenous community DSA consultants might travel with another service that has an existing or ‘vouched’ relationship with the community. These relationships are crucial to gain trust, knowledge and understanding. DSA consultants would rarely visit a remote Providing services to regional and remote communities in Australia requires a different Indigenous community on their own, but approach to those in urban areas. In Aboriginal and Torres Strait Islander communities the work alongside the local health network, majority of DSA recommendations involve a community-based approach

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challenges with staff providing continuity of care due to the cultural diversity of clients and care staff, provider expectations, and the involvement of multiple services. In addition, in regional and remote Australia, care homes, as with many organisations in these areas, have problems with recruitment and retention of staff. Continuity of care is critical when supporting a person with dementia. Regional and remote locations could benefit from having a dementia lead to establish and implement a value-based approach to supporting residents living with dementia in such a culturally diverse and challenging social and geographic demographic. Sometimes it’s easier in an outback community health service where the DSA People living in rural and remote communities face many challenges, including access to Dementia Consultant will have a primary and specialist health care relationship with one or two people that they can speak to every week to find out looking after the person with dementia. hit by a car. The DSA Dementia how the implementation of the In the majority of these cases, DSA Consultant purchased a reflective recommendations are going. With a recommendations involve a community- workman’s vest so the man could be changing aged care workforce this makes based approach. Unlike DSA support easily seen, and members of his it difficult. services in other locations in Australia, community were enlisted to help get him DSA’s Regional and Remote Outreach support may not be specifically around home. Strategy was put on hold at the the person and who the person is, but DSA works with members of these beginning of 2020 due to COVID-19. The rather about where they are living, who small communities to be able to support aim of the project was to target key areas is looking after them and what people the person or people living with within each state, promoting DSA service can do to support that person. dementia, providing strategies and offerings, expanding community A key outcome for DSA is to work with advice on how to enable them to stay and outreach programs, building the community to keep people in the live in the environment that they know relationships with key stakeholders environment they are familiar with, and are comfortable with. within aged care and the community, and rather than sending them into an increasing the skills and knowledge of unfamiliar environment such as an aged Consistency of care care staff in supporting people living care home or hospital. While there are barriers to providing with dementia. As an example, DSA was asked to support in remote community locations, During COVID-19 the service pivoted support an Indigenous woman who liked primarily due to distance and to provide telehealth services via to go walkabout. This is something she environmental factors, support for videoconferencing and was able to had always done, however because of people with dementia who are living in maintain its level of support to aged care her dementia she got the seasons mixed aged care homes in rural and remote organisations. DSA is now working to up and went out in the wet season, which Australia can be more challenging. reinstate the strategy to provide was a risk to her health and wellbeing. Without a doubt COVID-19 impacted specialised outreach consultant teams, DSA recommendations to the woman’s care homes across Australia. DSA’s travelling to regional and remote family members included talking to the Dementia Consultants were unable to locations. ■ community, the local shopkeeper, and enter some care homes, families were not health clinic about keeping an eye out for able to visit, and clients were unable to For more information about Dementia her. With consent, we also used an leave. Even when restrictions eased, Support Australia services and referral electronic tracker pendant (GPS), which many care homes in the Northern process, visit www.dementia.com.au/ or phone 1800 699 799. enabled her to still go out walking and Territory remained closed to site visits. allowed her family to know where she As with the remote communities, was and prevented her from having to relationships built on trust over time are ■ Andrew Haszard is Head of remain inside. critical. In order to achieve this, face-to- Dementia Support Australia and Overall, the aim was to keep this face consultations are necessary, and this Operations, The Dementia woman in her community, moving has been more challenging during this Centre, HammondCare. To follow around, not confined to her house and to period. The use of technology such as up on this article, contact avoid her being transferred to Darwin video chat and phone calls increased [email protected] and into aged care, where she would be during COVID-19 to support aged care Reference ‘off country’ and have to adjust to a new organisations when face-to-face visits The Institute for Governance and Policy Analysis environment. were not possible due to lockdowns. (IGPA) (2017) Economic Cost of Dementia In In another case, the person would go However, due to the complexity that Australia 2016-2056. Canberra: University of walking at night and was at risk of being exists within aged care there were Canberra. Available at: https://bit.ly/2VRYPWU

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Research Focus This section aims to provide a channel of two-way communication between researchers and practitioners in the expanding field of social, JDCpsychological standfirst and nursing 12pt researchJDC standfirst in dementia care, BOLD including 16pt all aspects of nursing and care practice, communication and the environment. The Research Focus section of the Australian Journal of Dementia Care aims to keep readers up to date with the fast expanding field of social, psychological and nursing research in dementia care. By this we mean every aspect of person-to-person communication, nursing and care practice and organisation, and the influence of all aspects of the JDCenvironment. standfirst The aim is to provide14pt a channel JDC of two-waystandfirst communication BOLD between researchers 14pt and practitioners, to ensure that research findings influence practice and that practitioners’ concerns are fed into the research agenda. We would like to hear from you, specifically with: n notice of the publication (recent or imminent) of peer reviewed papers with practical relevance to dementia care; n research reports available for interested readers; n requests or offers for sharing information and experience in particular fields of interest. Lack of dementia services may contribute to retrievals Fergus Gardiner, Noel Collins, Mathew Coleman and Frank Quinlan report on a cross-sectional review of data for patients with dementia requiring aeromedical retrieval by the Royal Flying Doctor Service of Australia

verall, the Australian population enjoys Orelatively good health. However, rates of potentially avoidable morbidity and mortality increase with remoteness, to more than 2.5- fold higher in populations living in very remote areas compared to those living in major cities (Gardiner et al 2018a). The causes of lower life expectancies in rural and remote populations are multifactorial (van Gaans & Dent 2018), however in part appear to be associated with reduced access to essential services, such as healthcare (Gardiner et al 2018a). Whilst rurality is associated with lower life expectancy, rural and Herb, a Royal Flying Doctor Service (RFDS) patient in Tilpa, far west NSW. As well as providing remote populations are likely aeromedical emergency services to country Australia, the RFDS is also the GP for hundreds of to experience growing rates of communities in the bush. Photos courtesy RFDS dementia, due to high comorbidity rates and an ageing Australian population, areas, including (although not There is no cure for dementia ageing population. with median age increasing in limited to) smoking, type two which remains the leading While the exact number of rural and remote populations diabetes, hypertension, and cause of dependency and people living with dementia in due to many younger people obesity (AIHW 2020). disability among older people Australia is unknown, it is leaving for work and study Additional risk factors that (Morgan, Innes & Kosteniuk estimated that in the year 2020 (Bauer et al 2019). may be more prevalent in rural 2011), which is worrying given 400,000-459,000 Australians Dementia is also likely to settings include lower levels of the ageing rural and remote have dementia, with grow at a faster rate in rural education, depression, population (Gardiner et al Alzheimer’s disease making and remote areas, as compared excessive alcohol 2018b), coupled with high rates up the majority (up to 70%) of to major city areas, due to the consumption, geographical of vascular disease (Gardiner et cases (AIHW 2020). This figure higher rates of modifiable risk isolation and infrequent social al 2019a). While dementia can is expected to grow, due to the factors in rural and remote contact (Livingston et al 2020). affect younger people, it is

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mainly associated with assumed to be a proxy for the advancing age occurring in need for acute medical those aged 65, or 55 years old if treatment, then studies looking Aboriginal and Torres Strait at the reasons for acute Islander (hereafter referred to hospital admission for people as Indigenous) (Gardiner et al with dementia may provide 2019b). some clues. People with dementia are Review of patient data often admitted for co-morbid While there has been some medical problems such as research concerning older pneumonia, UTI or people’s health and access to dehydration, consistent with services in rural and remote the finding that 30% of Australia (Gardiner et al retrievals were in response to 2019b), there has been little delirium (Natalwala et al 2008). research aimed at determining Other research reports suggest the characteristics of patients that the presence of responsive with dementia requiring behaviours such as agitation, aeromedical retrieval to inner- aggression as well as regional and major city areas A RFDS primary health consultation in Tasmania. RFDS provides increasing functional for ongoing care. regular fly-in-fly-out GP, nursing and allied health clinics dependency also increase the We undertook a cross- risk of acute admission (Toot et sectional review of al 2013). Given that responsive prospectively collected routine highlighted in Table 1 (see (IQR 62.0-80.0). behaviours significantly patient data for patients below). This included 272 Reasons for retrieval increase carer burden in home, retrieved for dementia by the (60.6%) males and 177 (39.4%) The leading retrieval reasons residential care and medical Royal Flying Doctor Service females, with the median age were for delirium (n=134; settings (Sampson et al 2014), (RFDS) from anywhere in being 71 years old 29.8%), unspecified dementia this is likely to contribute to Australia between 1 July 2016 (interquartile range (IQR) (n=93; 20.7%), and unspecified local care or placement failure and 31 June 2020 (four years). 52.75-79.0). The majority of organic or symptomatic mental and a subsequent request for Patient diagnostic data was patients were non-Indigenous disorder (n=60; 13.4%) (see medical escalation and coded to the International (n=347; 77.3%), however there Table 1 which details patient retrieval. Statistical Classification of was an overrepresentation of aeromedical retrieval In rural and remote areas Diseases and Related Health Indigenous patients (n=102; characteristics). there is a shortage of local Problems 10th Revision (ICD- 23.0%). Indigenous patients dementia services and due to 10) (WHO 2020). were significantly younger, Discussion geographical and social During the study period, the with a median age of 53.0 (IQR It is unclear from this inflight isolation many patients are RFDS conducted 449 patient 30.5- 67.0), as compared to clinical coding what the exact required to travel long episodes of care for people non-Indigenous patients, with reasons for retrieval were. distances to access services experiencing a dementia, as a median age of 74.0 years However, if retrieval is (Bauer et al 2019). This puts

(ICD-10 code) In-flight working diagnosis Male (%) Female (%) Total (%) Median age (IQR) F00 Dementia in Alzheimer disease 14 (5.1) 13 (7.3) 27 (6.0) 74 (71-78.5) F01 Vascular dementia 16 (5.9) 4 (2.3) 20 (4.5) 75 (67.75-80.0) F02 Dementia in other diseases classified elsewhere 11 (4.0) 4 (2.3) 15 (3.3) 75 (62.5-78.5) F03 Unspecified dementia 58 (21.3) 35 (19.8) 93 (20.7) 77 (73.0-85.0) F04 Organic amnesic syndrome, not induced by alcohol and other 1 (0.4) 2 (1.1) 3 (0.7) 71 (71.0-76.0) psychoactive substances F05 Delirium, not induced by alcohol and other psychoactive substances 77 (28.3) 57 (32.2) 134 (29.8) 68.5 (54.5-78.0) F06 Other mental disorders due to brain damage and dysfunction and to 22 (8.1) 8 (4.5) 30 (6.7) 51 (34.75-64.0) physical disease F07 Personality and behavioural disorders due to brain disease, damage and 10 (3.7) 7 (4.0) 17 (3.8) 57 (49.0-67.0) dysfunction F09 Unspecified organic or symptomatic mental disorder 36 (13.2) 24 (13.6) 60 (13.4) 43.5 (28.0-68.0) G30 Alzheimer disease 7 (2.6) 10 (5.6) 17 (3.8) 75.5 (71.25-77.0) G31 Other degenerative diseases of nervous system (such as circumscribed 20 (7.4) 13 (7.3) 33 (7.3) 68 (59.0-76.0) brain atrophy; senile degeneration; degeneration due to alcohol) Total 272 177 449 71 (52.75-79.0)

Table 1: Characteristics of patients who received an aeromedical retrieval for dementia, from the years 2016 to 2020, throughout rural and remote Australia

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much pressure on friends, by people living with Morgan D, Innes A, Kosteniuk J Investigation Of Responses To Two family and carers of people dementia. ■ (2011) Dementia Care In Rural And Scenarios Of An Experience Of The Remote Settings: A Systematic Early Signs Of Dementia. Aging & with dementia (Papastavrou et Review Of Formal Or Paid Care. Mental Health 19(11) 968-977. al 2015), who are required to Acknowledgments We would like to thank the Maturitas 68(1) 17-33. Sampson EL, White N, Leurent B escort loved ones, often due to supporters of the Royal Flying Morgan DG, Kosteniuk JG, Stewart et al (2014) Behavioural And the person with dementia not Doctor Service (RFDS) who make NJ et al (2015) Availability And Psychiatric Symptoms In People being able to, or allowed to, our service possible. We would also Primary Health Care Orientation Of With Dementia Admitted To The drive; or due to the like to thank Professor Jane Farmer Dementia-Related Services In Rural Acute Hospital: Prospective Cohort inaccessibility of suitable for commenting on the article before Saskatchewan, Canada. Home Study. The British Journal of public transport. Other publication. Health Care Services Quarterly 34 Psychiatry 205(3) 189-196. obstacles to local care include (3-4) 137-158. Toot S, Devine M, Akporobaro A, fewer local specialist providers Natalwala A, Potluri R, Uppal H, Orrell M (2013) Causes of Hospital References Heun R (2008) Reasons For Admission For People With (and culturally appropriate Australian Institute of Health and Hospital Admissions In Dementia Dementia: A Systematic Review services), limited clinical Welfare (AIHW) (2020) Dementia. Patients In Birmingham, UK, During And Meta-Analysis. Journal of the dementia training for local Canberra: AIHW. 2002-2007. Dementia and Geriatric American Medical Directors health care workers, and Bauer M, Fetherstonhaugh D, Cognitive Disorders 26(6) 499-505. Association 14(7) 463-470. limited geriatric and diagnostic Blackberry I, Farmer J, Wilding C Papastavrou E, Andreou P, van Gaans D, Dent E (2018) Issues service (Kendig & Phillipson (2019) Identifying Support Needs To Middleton N, Tsangari H, Of Accessibility To Health Services Improve Rural Dementia Services 2014; Morgan et al 2015). Papacostas S (2015) Dementia By Older Australians: A Review. For People With Dementia And The lack of commissioned Caregiver Burden Association With Public Health Reviews 39(1) 20. Their Carers: A Consultation Study Community Participation Aspect Of World Health Organisation (2020) memory assessment pathways In Victoria, Australia. Australian and models of care in rural Social Capital. Journal of Advanced International Statistical Journal of Rural Health 27(1) 22-27. Nursing 71(12) 2898-2910. Classification of Diseases and settings make post-diagnostic Chase M, Lloyd CEM, Peters BJ, Phillipson L, Magee C, Jones S, Related Health Problems 10th care and signposting to local Chase E, Lee K (2020) Joining The Reis S, Skaldzien E (2015) Revision. Available at: non-government support Dots: Day To Day Challenges For Dementia Attitudes And Help- https://icd.who.int/browse10/ organisations such as Practitioners In Delivering Integrated Seeking Intentions: An 2016/en. Dementia Australia difficult. Dementia Care. Health & Social Splits between the national Care In The Community 18 August, 1-11. funding of aged and geriatric Gardiner FW, Gale L, Ransom A, care, primary care, social care Laverty M (2018a) Looking Ahead: and state-based older adult Responding To The Health Needs mental health or neurological Of Country Australians In 2028 – services further complicates The Centenary Year Of The RFDS. the provision of integrated care The Royal Flying Doctor Service. (Chase et al 2020). Available at: Furthermore, many of the https://bit.ly/2JXW0AW. ■ patients are from small towns, Gardiner FW, Gale L, Bishop L, (Pictured from left) Dr Fergus W Gardiner is Director Public Health and where the stigma of having Laverty M (2018b) Healthy Ageing In Research, Royal Flying Doctor Service of Australia (RFDS); Dr Noel Collins is Rural And Remote Australia: Clinical Senior Lecturer at The Rural Clinical School of Western Australia, The dementia can be experienced, Challenges To Overcome Canberra: University of Western Australia; Associate Professor Mathew Coleman is with carers avoiding accessing The Royal Flying Doctor Service of Chair of Practice in Rural Mental Health and Psychiatry Coach at The Rural support services for fear of Australia. Clinical School of Western Australia, The University of Western Australia; and being ostracised (Phillipson et Gardiner F, Bishop L, Foreman R, Frank Quinlan is Federation Executive Director of the RFDS. To follow up on al 2015). Combined with the Potter J, Gale L, Laverty M (2019a) this article contact Dr Fergus Gardiner at [email protected] additional challenges of Cardiovascular Disease Prevention navigating complex health and And Rehabilitation In Rural And social care systems, these Remote Populations. Canberra: The challenges may result in Royal Flying Doctor Service of people waiting until a crisis Australia. Available at: https://bit.ly/2VRv2xm. point before seeking any help. Gardiner FW, Richardson AM, As such, sustained policy Bishop L et al (2019b) Health Care initiatives that support the For Older People In Rural And commissioning and Remote Australia: Challenges For investment in local integrated Service Provision. Medical Journal dementia diagnostic and of Australia 211(8) 363-364. support services are likely to Kendig H, Phillipson C (2014) reduce the need for sudden Building Age-Friendly Communities: escalation and aeromedical New Approaches To Challenging retrieval. Health And Social Inequalities. If You Could Do One Thing”, Nine Improving the capacity and Local Actions To Reduce Health capabilities of local hospitals to Inequalities 102-111. detect and manage delirium, as Livingston G, Huntley J, well as specialist support to Sommerlad A et al (2020) Dementia manage responsive behaviours Prevention, Intervention, And Care: in local care settings are also 2020 Report Of The Lancet likely to reduce the Commission. The Lancet. 396 dependency on RFDS services (10248) 413-446. A patient is transferred on to an RFDS aircraft for transport to hospital

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 37 Training dental practitioners Undiagnosed pain due to unmet oral care needs is often a significant cause of distress and agitation among aged care residents, particularly those living with dementia. However, as well as the difficulty of residents accessing dental care, many dental practitioners are not well equipped to provide dental care for people with dementia. Archana Pradhan (left) and Ratilal Lalloo evaluated an Australian-first online learning program for dentists on providing oral health care for people with dementia

eople with dementia especially with advanced workforce in providing practitioners) they became a account for 52% of all dementia (van der Maarel- appropriate and timely dental useful resource for all DPs Presidents in residential Wierink et al 2013). care for people with dementia. (dentists, oral health therapists, aged care facilities (RACFs) The elderly and people with dental hygienists, dental (NATSEM 2017). Oral health is dementia need complex oral Online learning prosthetists) to provide care for challenging in RACFs with a health care, but they/their carers Collaborating with an inter- older adults, with or without lower priority over the demands have difficulty accessing dental sectorial committee of specialists dementia. of supporting residents with care. Although Geriatric (SND), experienced dentists eating and with going to the Dentistry is covered within (aged care), geriatricians, people Evaluating the training toilet perpetuating the cycle of specialist disciplines (Special with dementia and their Between 2016-2018, through the oral neglect. Residents’ reliance Needs Dentistry (SND)/Oral carers/advocates, the project University of Queensland (UQ), on carers for daily oral care like Medicine), integrated programs group developed Australia’s we evaluated the ‘Dentists and tooth brushing, denture focusing on managing oral first online learning program for Dementia’ program, using a cleaning etc, and transport to health complexities of the dentists on providing oral health combination of the online dental facilities increases their elderly is lacking and many care for people with dementia. training modules and a face-to- vulnerability to oral disease dental practitioners (DPs) are ‘Dentists and Dementia’ (now face post-training discussion. which tends to be cumulative not comfortable providing called ‘Partnership in Practising The aim was to improve DPs’ and more complex with time dental care for people with Care’) was launched in August self-reported knowledge, skills (Ettinger 2015). dementia (Slack-Smith et al 2016. The six modules and confidence in providing 2015). Though the 2004-2013 and incorporating 19 videos (two-13 appropriate oral care to the Importance of oral care 2015-24 Australian National minutes, totalling about two ageing population; assess if a The high prevalence of Oral Health Plans identify older hours) covers: ‘What is post-training face-to-face clinical untreated dental decay in aged people as priority populations Dementia?’, ‘Dentistry and discussion is of added learning care residents with and without for dental care, the Ageing’, ‘Dementia and Your value; collect feedback on the dementia (Hopcraft et al 2012; recommendations have not been Practice’, ‘Consent’, ‘Treatment online training modules Silva et al 2014; Chalmers et al implemented (Pradhan et al Planning’ (now called Treatment (appropriateness of content; 2005) and periodontal/soft 2019). Planning and Delivery of Care’) improvements needed), assist in tissue lesions (Stubbs et al 2002) Increasing interprofessional and ‘Delivery of Domiciliary continuing professional make oral care important for (carers/dental/other health Care’ (now called ‘Domiciliary development (CPD) activities RACF residents. Residents with practitioners) engagement in Care’), with typical case- for DPs, and integration into decayed teeth have reduced oral care training in aged care scenarios/interviews with primary/specialist dental ability to chew and greater (Hopcraft et al 2011) has people with dementia, dentists curricula. nutritional problems (Walls et al prompted several models of and geriatricians working with 2000) with consequent training across various people with dementia and their Methods malnutrition correlating with education programs (Samson et carers. Links to additional All 22,987 DPs registered during declined activities of daily living al 2010), including an online dental/medical care resources 2016-2018 (Dental Board of (Furuta et al 2013). Pain and program developed by are also provided. Australia 2019) were infection from poor oral health Dementia Australia and The With the original intent for approached as participants for may go unnoticed, especially Australian Dental Association dentists to access and gain this evaluation. Participation in among people with cognitive (ADA), called ‘Dentists and practical knowledge regarding a pre-training online impairment who are poor Dementia’, which is the subject the provision of oral health care questionnaire was promoted via reporters of pain. Undiagnosed of this article. for people with dementia in the ADA News Bulletin/emails, pain due to unmet oral care Dementia Australia’s their day-to-day clinical dental conferences/meetings, needs is often a significant cause consumer-driven National practice, the online training and the Facebook pages of the of distress/agitation amongst Quality Dementia Care Initiative modules were initially available following dental associations: residents particularly those with had identified oral health as a only to ADA members via the Australian Society of Special dementia (Sampson et al 2015). problem among people with ADA portal. When the modules Care in Dentistry, Australian Furthermore, plaque dementia that needs to be were made publicly available on Dental and Oral Health accumulation and deteriorated addressed. In response, it the Dementia Australia website Therapist Association, Dental periodontal status linked to approached the ADA in 2015 to in 2017 (www.dementia.org. Hygienists Association of aspiration pneumonia is a cause form a joint project to address au/resources/education- Australia, Dental Prosthetics of death among frail elderly, limitations in the dental modules-for-dental- Australia.

38 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 The pre-training clinical training in their basic the online training logical, face-to-face clinical discussion, questionnaire was available primary degree. practical, easy, raised awareness, the percentage of DPs who through the UQ software Forty DPs (62.5%) had improved confidence and ‘Agreed/Strongly Agreed’ Checkbox. Respondents were provided dental care to some exceeded expectation. For a few, further increased for ‘adequate given the option to provide their aged care residents in the past 12 the online training was too long, theoretical knowledge’ (by personal emails to participate in months prior to undertaking the whilst other participants wanted 27.4%), ‘how to maintain a the post-training questionnaire online training modules. Just more practical clinical-related friendly dental environment’ and face-to-face clinical case over half (52.5%) had managed components. Suggestions (by 8.3%), ‘understanding discussion. After completing the five or less patients included fewer but longer consent issues’ (by 3.6%), pre-training questionnaire, independently, and only six videos, and fewer modules (so a ‘effective communication’ (by participants received the link to (15.0%) had provided care for shorter time to complete the 8.3%), ‘plan dental care’ (by the online training modules. over 100 patients in the past 12 online training). 22.6%), ‘know who to consult in Responses to the pre-training months. Referrals were Some encouraging comments complex cases’ (by 13.1%), and questionnaire were logged generally made to other general included: ‘confident in working with other monthly (August 2016-2017). At dentists (26.6%), specialists • “Great that you are covering health professionals’ (by 8.3%). six months, those who provided (SND) (21.9%), oral maxillofacial this much-needed area of The percentage of the DPs who their personal emails were sent a surgeons (14.0%) and other dentistry – very challenging ‘Agreed/Strongly Agreed’ also link to participate in the post- specialists (9.3%): oral medicine but needed and necessary.” increased for ‘can provide a training questionnaire, via the specialists, oral pathologists and • “Well done – a difficult area thorough oral examination for UQ Checkbox, and asked to prosthodontists. The majority of but really needs to be tackled.” aged care residents in dental provide feedback/suggestions the DPs (57.8%) consulted surgery’ (by 29.8%), ‘out of for improvement. Another family/carers. Some consulted The 12 participants reported dental surgery’ (by 46.4%), and invitation (February 2018) to other dental professionals the face-to-face discussion as ‘providing holistic care to aged participate in the online training (29.7%) and non-dental insightful, informative, care residents’ (by 22.6%) as and follow-up face-to-face professionals (26.6%) (GP, valuable, efficient, practical, well. Due to the low response, clinical case discussion was medical specialist, dietician, helpful and hopeful. More translation into clinical practice promoted via the Dental psychologist, speech therapist, clinical scenarios and following the online training Hygienists Association of South nurse, or patients themselves). opportunities for practical and face-to-face clinical Australia. A follow-up face-to- Of the 64 DPs, 41 provided demonstrations were proposed. discussions could not be face clinical case discussion was their emails to be contacted for A common theme for determined. organised (April 2018) for the the post-training questionnaire improvements for both the interested participants in and/or practical training. After online training modules and Discussion Adelaide, who were asked to two reminder emails a week face-to-face discussion was to According to previous research, complete a post-discussion apart, only 21 participants involve carers and dental many DPs lack confidence in questionnaire, the same as the responded at six months follow- hygienists/oral health providing dental care to RACF post-training questionnaire. up. No comparisons were able therapists, especially in the residents, especially those with The data from Checkbox were to be made for dental practice preventative regime and dementia, due to inadequate exported to SPSS for analysis. patterns pre- and post-training. behavioural management. training and experience; and The characteristics of Following online training, the fear treating geriatric problems participating DPs were Reasons for participation percentage of DPs who (MacEntee et al 1992; Antoun et described using descriptive The most common reasons for ‘Agreed/Strongly Agreed’ al 2008; Slack-Smith et al 2015; statistics. Responses to online training participation increased for ‘adequate Bots-VantSpijker et al 2017). statements on knowledge, skills, were for knowledge, further theoretical knowledge’ (by However, our study showed and confidence were recorded skills and confidence in aged 13.2%), ‘how to maintain a that DPs did not take advantage on a 5-point Likert Scale and dementia care. A few friendly dental environment’ of the online training made (strongly disagree = 1, disagree mentioned “lack of training” in (by 14.2%), ‘understanding available/accessible to them. = 2, neutral = 3, agree = 4, and geriatric dentistry. For some, consent issues’ (by 12.4%), This indicates DPs are still not strongly agree = 5). personal reasons included ‘effective communication’ (by interested/not willing to treat family members or patients with 11.7%), ‘plan dental care’ (by older people, probably due to Results dementia, or working in aged 16.3%), ‘know who to consult in other issues like lack of financial Forty-four dentists, 17 dental care. Few of the participants complex cases’ (by 16.0%), and incentives (Bots-VantSpijker et al hygienists/oral health therapists were recommended to ‘confident in working with other 2017) and problems obtaining and three dental prosthetists participate in the online training health professionals’ (by 7.7%). informed consent. participated in the pre-training by their colleagues. Other However, the percentage of DPs With only 18 registered SND questionnaire. There were more reasons were to provide holistic who ‘Agreed/Strongly Agreed’ specialists in Australia (Dental female (59.4%) than male treatment; communicate better decreased for the statements Board of Australia 2019), the participants and nearly two- with patients and their carers; ‘can provide a thorough oral poor participation rate in the thirds (64.3%) had over 10 years’ familiarise with oral needs as examination for aged care education program, despite clinical experience. Almost half dementia progresses; handle residents in dental surgery’, ‘out reminder emails, confirms that (49.2%) were 40-59 years of age. ‘difficult’ patients and provide of dental surgery’, and the inadequate training in aged The majority worked in private palliative care. ‘providing holistic care to aged care for the aged care dental practice (60.7%). Only 24 (39.3%) care residents’ by 6.3%, 3.1%, workforce will continue to be a had received training in aged Feedback and 1.7%, respectively, concern into the future. care, of whom two dentists and Feedback regarding the online following online training (see Responses from the few six dental hygienists had training was mostly positive for Table 1, p40). participants indicate that online received both theoretical and most participants who found Following the subsequent training is an effective medium

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 39 Pre-training, Post-training and Post-discussion on providing dental care for aged care Disagree/Strongly Neutral (%) Agree/Strongly residents Disagree (%) Agree(%)

1 I have adequate theoretical knowledge on managing aged care residents Pre† 44.3 21.3 34.4 Post1‡ 19.0 33.3 47.6 Post2§ 25.0 0 75.0 2 I know how to maintain a friendly environment in my dental surgery Pre† 26.2 21.3 52.5 Post1‡ 28.6 4.8 66.7 Post2§ 25.0 0 75.0 3 I understand consent issues for aged care residents Pre† 24.6 16.4 59.0 Post1‡ 19.0 9.5 71.4 Post2§ 25.0 0 75.0 4 I can communicate effectively with aged care residents and their carers Pre† 23.3 21.7 55.0 Post1‡ 23.8 9.5 66.7 Post2§ 25.0 0 75.0 5 I can provide a thorough oral examination in my dental surgery for aged Pre† 18.0 32.8 49.2 care residents Post1‡ 23.8 33.3 42.9 Post2§ 27.3 0 72.7 6 I can provide a thorough oral assessment outside my dental surgery for Pre† 36.7 31.7 31.7 aged care residents (e.g. in an aged care facility) Post1‡ 33.3 38.1 28.6 Post2§ 25.0 75.0 7 I have adequate knowledge and clinical skills to plan dental care for aged Pre† 23.0 41.0 36.1 care residents Post1‡ 33.3 14.3 52.4 Post2§ 16.7 8.3 75.0 8 I know who to consult in complex cases when managing aged care Pre† 36.1 18.0 45.9 residents Post1‡ 19.0 19.0 61.9 Post2§ 25.0 75.0 9 When managing aged care residents I am confident in working with other Pre† 19.7 21.3 59.0 health professionals Post1‡ 23.8 9.5 66.7 Post2§ 25.0 75.0 10 When managing aged care residents I am confident in providing holisticcare Pre† 21.3 24.6 54.1 Post1‡ 23.8 23.8 52.4 Post2§ 25.0 0 75.0

Table 1. Dental practice patterns in Aged Care Pre† N = 61, Post1‡ N = 21, Post2§ N = 12 for educating DPs in theoretical participating in this study could knowledge in providing dental greater understanding of aspects of providing care for the also vary accordingly. However, care for aged care residents, and consent issues, and therefore, elderly and that face-to-face low participation did not allow less than a third to being able to acknowledgment of the clinical discussions are of added for stratification by the different provide a thorough oral complexities involved. learning value. Participants also categories of DPs. assessment outside the dental The online training did provided valuable insight into A lack of training in aged care surgery. increase the number of DPs who how the training modules and for DPs (Slack-Smith et al 2015; Following the online training ‘Agreed/Strongly Agreed’ in face-to-face discussions could be Bots-VantSpijker et al 2017; there was further reduction in maintaining a friendly dental improved to ensure delivery of Hopcraft et al 2008) was agreement among the DPs in the environment, communicating efficient and appropriate oral confirmed by the 40% of practical aspects like ability to effectively with care residents health care in aged care. participants who did not receive provide a thorough oral and their carers, treatment As the study included all DPs, any training, and only eight DPs examination for aged care planning, knowing appropriate a dental treatment plan in received both theoretical and residents in and outside a dental referral pathways, and inter- providing care for aged care clinical training during their surgery, and in providing professional collaboration in residents would differ by each formal education. Only about a holistic care to aged care providing care for older adults. category of DP, and hence, the third of the DPs residents. This was probably This is similar to several studies level of knowledge and ‘Agreed/Strongly Agreed’ to due to the increase in their where increased knowledge was confidence gained after having adequate theoretical theoretical knowledge and the most common outcome with

40 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 online information delivery training to increase knowledge, Rural Allied Health Practitioners: A (2010) Oral Care Training In The Basic Systematic Review. BMC Medical Education Of Care Professionals. followed by perception of skills and confidence of the DPs. Education 17 117. Gerodontology 27(2) 121-128. increased confidence in Further research involving Bots-VantSpijker PC, Bruers JJM, Shah N (2010) Teaching, Learning symptom management and more participants in a larger Bots CP, Visschere LMJD, Schols And Assessment In Geriatric communication (Sullivan 2017; face-to-face component and JMGA (2017) Dentists’ Opinions On Dentistry: Researching Models Of Berndt et al 2018; Lawn et al follow-up is required to assess if Knowledge, Attitudes And Barriers In Practice. Journal of Dental Education 2017). the training will translate into Providing Oral Health Care To Older 74(1) 20-28. Education with a face-to-face clinical practice. This People Living Independently In The Silva M, Hopcraft M, Morgan M interactive element was better exploratory study has potential Netherlands And Flanders (Belgium). (2014) Dental Caries In Victorian regarded by the recipients implications for the primary and British Dental Journal Open 3 1-8. Nursing Homes. Australian Dental because of the opportunity to specialist dental curricula, as Chalmers JM, Carter KD, Spencer AJ Journal 59(3) 1-8. (2005) Caries Incidence And Slack-Smith LM, Hearn L, Wilson DF, discuss their learning, exchange well as in CPD courses, and to Increments In Adelaide Nursing Home Wright FAC (2015) Geriatric Dentistry, ideas, and reflect among peers open opportunities to establish Residents. Special Care in Dentistry Teaching And Future Directions. (Wolff et al 2014; Shah 2010; medical-dental-consumer 25(2) 96-105. Australian Dental Journal 60(1) 125- Lawn et al 2017). Interactive collaborations between Special Dental Board of Australia (2019) 130. face-to-face methods of delivery, Needs Dentistry, geriatric Statistics (2018) Available at: Stubbs C, Riordan P (2002) Dental compared to lectures alone, medicine and aged care to www.dentalboard.gov.au/about-the Screening Of Older Adults Living In enhanced participant activity achieve the shared board/statistics.aspx Residential Aged Care Facilities In and provided the opportunity to goal of the health and aged care Ettinger RL (2015) Treatment Planning Perth. Australian Dental Journal 47(4) practice skills which can sectors in improving quality of Concepts For The Ageing Patient. 321-326. efficiently and effectively life of the elderly and people Australian Dental Journal 60(S1) 71- Sullivan LG (2017) A Systematic 85. Review To Compare The change professional practice and living with dementia. ■ Furuta M, Komiya-Nonaka M, Akifusa Effectiveness Of Face-To-Face Versus health care outcomes (Sullivan S, et al (2013) Interrelationship Of Oral Online (Including Blended Learning) 2017). Whilst the online medium Education tools Health Status, Swallowing Function, Delivery Of CME/CPD For Healthcare is a growing modern teaching The online learning program for Nutritional Status, And Cognitive Practitioners (Hcps) Mphil Thesis. The method effective in educating dentists described in this article is Ability With Activities Of Daily Living In University of Queensland. and providing new acquired now called ‘Partnership in Japanese Elderly People Receiving The National Centre for Social and knowledge as a CPD activity, Practising Care’ and is available Home Care Services Due To Physical Economic Modelling NATSEM (2017) from the Dementia Australia online education alone cannot Disabilities. Community Dentistry and Economic Cost of Dementia in website at www.dementia.org. Oral Epidemiology 41(2) 173-181. Australia 2016-2056. University of replace face-to-face contact au/resources/education- (Wolff et al 2014; Shah 2010; Hopcraft MS, Morgan MV, Satur JG, Canberra: The Institute for modules-for-dental-practitioners. Wright FAC (2008) Dental Service Governance and Policy Analysis. Sullivan 2017; Berndt et al 2017; The Continuing Professional Provision. In: Victorian Residential van der Maarel-Wierink CD, Lawn et al 2017) and does not Development series is designed Aged Care Facilities. Australian Dental Vanobbergen JN, Bronkhorst EM, allow full collaborative learning to support dentists treating Journal 53(3) 239-245. Schols JM, de Baat C (2013) Oral

(Berndt et al 2017). people living with dementia. The Hopcraft MS, Morgan MV, Satur JG, Health Care And Aspiration As anticipated, the face-to- modules focus on preventative Wright FAC (2011) Utilizing Dental Pneumonia In Frail Older People: A face clinical discussions methods and have a strong Hygienists To Undertake Dental Systematic Literature Review. increased the number of DPs emphasis on quality of life. Examination And Referral In Gerodontology 30(1) 3-9. who ‘Agreed/Strongly Agreed’ Residential Aged Care Facilities. Walls AWG, Steele JG, Sheiham A, for all components including Royal Commission Community Dentistry and Oral Marcenes W, Moynihan PJ (2000) providing a thorough oral The 2019 Joint Submission to the Epidemiology 39(4) 378-384. Oral Health And Nutrition In Older Hopcraft MS, Morgan MV, Satur JG, People. Journal of Public Health examination for aged care Royal Commission into Aged Care Quality and Safety by The Australian Wright FAC (2012) Edentulism And Dentistry 60(4) 304-307. residents in and out of dental Dental Caries In Victorian Residential Wolff M, Schenkel A, Allen K (2014) surgery, and providing holistic and New Zealand Academy of Special Needs Dentistry and The Aged Care Facilities Gerodontology Delivering The Evidence:Skill Mix And care to aged care residents. This Australian Society of Special Care in 29 E512-519. Education For Elder Care. possibly implies that these Dentistry, co-authored by Dr Archana Lawn S, Zhi X, Morello A (2017) An Gerodontology 31(Suppl 1) 60-66. competency areas where DPs Pradhan, Dr Kerrie Punshon and Integrative Review Of E-Learning In felt they were lacking initially Associate Professor Mina Borromeo, The Delivery Of Self-Management ■ post-training, were resolved contains a range of evidence-based Support Training For Health Dr Archana Pradhan is a dental post-discussion. Hence, online recommendations for access to Professionals. BMC Medical specialist in Special Needs Dentistry at the Metro North Oral Health training with subsequent face- appropriate and timely dental care at Education 17(1) 183. MacEntee MI, Weiss RT, Waxier- Service, Brisbane, and Honorary to-face discussion, reflection and RACFs to improve the oral health and quality of life for older people, Morrison NE, Morrison BJ (1992) Senior Lecturer at The University of practice is critical to reinforce Opinions Of Dentists On The Queensland and The University of skills acquired from the learning including people with dementia. It’s available to download at: Treatment Of Elderly Patients In Long- Tasmania. She was also a member activity (Lawn et al 2017). https://bit.ly/3oo4dgu Term Care Facilities. Journal of Public of the Dentists and Dementia Considering the positive Health Dentistry 52(4) 239-244. project steering group and is an feedback from the face-to-face References Pradhan A, Punshon K, Borromeo M active member of the Australia and discussions and participant Antoun JS, Adsett LA, Goldsmith SM, (2019) Submission To The Royal New Zealand Academy of Special requests for more opportunities Thooldermson WM (2008) The Oral Commission Into Aged Care Quality Needs Dentistry (ANZASND) and for practical demonstrations and Health Of Older People: General Dps’ And Safety, 2019. Australian Society of Special care in Dentistry (ASSCID); Associate clinical scenarios, more focus on Beliefs And Treatment Experience. Sampson EL, White N, Lord K et al (2015) Pain, Agitation, And Professor Ratilal Lalloo is Discipline practical training is Special Care in Dentistry 28(1) 2-7. Berndt A, Murrary CM, Kennedy K, Behavioural Problems In People With Lead, Dental Public Health at The recommended in the future, Dementia Admitted To General University of Queensland. To follow with the online training Stanley MJ, Dilbert-Hunt S (2017) Effectiveness Of Distance Learning Hospital Wards: A Longitudinal up on this article, contact Dr modules as an adjunct to the Strategies For Continuing Cohort Study. Pain 156(4) 675-683. Archana Pradhan at practical component of the Professional Development (CPD) For Samson H, Iversen MM, Strand GV [email protected]

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 41 Carers and RESEARCH NEWS sleep quality The latest published dementia research from Australia and around the world. Compiled by AJDC Contributing Editor Catherine Ross Researchers from Edith Cowan University in Western Dementia-friendly communities in practice Australia have concluded that sleep problems are very A group of UK researchers has investigated the ‘other’; 102 people said that ‘more public common among dementia question of whether dementia-friendly understanding of what it is like to live with caregivers, after asking family communities (DFCs) are actually having an dementia’ would help them to live well in their caregivers of people living impact on people living with dementia within community, 52 selected ‘extra support in public with dementia to self-report those communities. spaces’, 49 selected ‘larger choice of enjoyable their sleep patterns via a The study involved a survey of people living activities’ and 22 selected ‘better public survey. with dementia who reside in six DFCs in transport’; 42 participants made their own While 104 adult, primary, England, but who were not directly involved in suggestions as to what would improve their informal caregivers of people the running or planning of their DFC. The study experience of living with dementia. with dementia participated in sites varied in size, but all were recognised as The researchers say that the study has the study by completing a DFCs by the UK’s Alzheimer’s Society. illustrated the contribution that surveys can questionnaire on demographic In total, 240 people living with dementia make in facilitating the expression of views and characteristics (this included completed the survey. Around half (48%) said experiences of people living with dementia. They questions on pre-existing they were aware they were living in a DFC. do, however, note the challenges that need to be medical history, caregiving Being aware of living in a DFC was positively overcome to ensure that the voices of those with history and use of respite), associated with a range of activities and advanced dementia are heard in studies like this; only 71 participants involvement, such as taking part in leisure only 10.8% of participants had advanced completed the full set of activities, community centre attendance, being dementia, and 78% of participants completed the questionnaires (which involved in organised activities or groups, survey with support from another person. included the Depression, feeling understood, and feeling valued for their Darlington N, Arthur A, Woodward M et al (2020) A Anxiety and Stress Scale own contributions to the community. Survey Of The Experience Of Living With Dementia In A (DASS-21) and the Pittsburgh When asked “What would most help you to Dementia-Friendly Community. Dementia. First Sleep Quality Index (PSQI)) live well with dementia in [site]?”, participants published online 8 October 2020 1-12: doi: and were therefore included were invited to select pre-specified options or 10.1177/1471301220965552 in statistical analyses. The majority of participants were female (76%) and 44% of Confinement of people with dementia participants had two or more co-morbidities. An interdisciplinary team of on their awareness and restrictive practices”. The study found that 94% researchers involved in the experience of community The paper presents were poor sleepers; 84% had Australian project ‘Safe and access and freedom of recommendations for human difficulty initiating sleep, and Just Futures for People Living movement in relation to aged rights scholars and 72% said they had difficulty with Dementia in Residential care homes and their views on practitioners, but notes these maintaining sleep. Aged Care’, has published a human rights. A review of the are also relevant to aged care Psychological distress was paper reporting on findings data led the researchers to and health policy workers who common, with high levels of from a recent study which identify a series of interrelated might be able to affect the moderate to severe explored the topic of factors that contribute to legal, policy, and service depression, anxiety and stress. confinement of people living human rights breaches relating delivery frameworks that Stress was found to be a with dementia in care homes to confinement: directly shape the conditions significant predictor of overall through a series of interviews immobilisation and neglect; in aged care. sleep quality. Overnight and focus groups. limited and segregated The research team included respite was only used by 8% The paper reviews some activities; apprehending dementia advocate Kate of participants. existing research on the community exclusion; duty of Swaffer and was guided by an The lead researcher, Dr confinement of people living care, risk, and liability; and advisory group that included Aisling Smyth, is now with dementia in care homes, pathologisation and people living with dementia, working on developing a and goes on to report on the subversion of resistance. care partners, care home cognitive behavioural therapy findings from the interviews The researchers conclude professionals, and lawyers and program to promote better and focus groups, which that, “microlevel interrelated advocates for people living sleep for family carers of involved 45 participants (five and compounding factors with dementia. people with dementia. people living with dementia, contribute to human rights Steele L, Carr R, Swaffer K, Smyth A, Whitehead L, Quigley E et 19 care partners, 12 care home abuses of people living with Phillipson L, Fleming R (2020) al (2020) Disrupted Sleep And professionals, and nine dementia related to limits on Human Rights And The Associated Factors In Australian lawyers and advocates). freedom of movement and Confinement Of People Living With Dementia Caregivers: A Cross- Participants were asked a community access of people Dementia In Care Homes. Health Sectional Study. BMC Geriatrics series of questions in both the living with dementia, at times and Human Rights Journal 22(1). 20(312) doi: 10.1186/s12877-020- interviews and focus groups irrespective of the use of Available at: https://bit.ly/3q2tkY6 01726-1

42 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 Partnerships Pain and behavioural changes in aged care homes Australian research led by two groups: ‘pain’ group and referred who were not in pain. in care homes HammondCare has ‘no pain’ group. The researchers conclude investigated the prevalence Two-thirds (65.6%) of the 479 that there is a strong need to This study was conducted by and intensity of pain in people referrals had pain identified, consider the possibility of pain the same Maastrict University living in aged care homes who with almost half (48.4%) of as a contributor to behavioural researchers involved in the are showing responsive these experiencing moderate to changes in aged care residents systematic review on behaviours (or behavioural severe pain. Pain was highly living with dementia. interventions to foster family and psychological symptoms prevalent (54.6-78.6%) in all HammondCare says the inclusion (see right, centre), of dementia, BPSD). subtypes of dementia, and study is the largest of its kind, and it explores similar The one-year retrospective people with pain had 25.3% and the first to use an artificial territory, but on this occasion study involved analysis of more neuropsychiatric intelligence-based, dementia- the researchers chose to ask BPSD and the presence of pain behaviours compared with the specific pain assessment tool. family carers of residents in people referred to Dementia ‘no pain’ group. There was a living with dementia directly Support Australia (DSA), high prevalence of aggressive Atee M, Morris T, et al. (2020) Pain In Dementia: Prevalence and for their views on collaboration using the Neuropsychiatric or agitated behaviours across Association With Neuropsychiatric with nursing home staff. Inventory and PainChek®, the the entire group, but the ‘pain’ Behaviours. Journal of Pain and The researchers conducted pain assessment app group was 3.8 times more Symptom Management. Published semi-structured interviews developed in Australia. likely to experience these online 14 October 2020: doi with 30 family carers of Referrals were categorised into behaviours than people 10.1016/j.jpainsymman.2020.10.011 nursing home residents living with dementia. The carers were recruited from five nursing home wards within three psychogeriatric care Interventions to foster family inclusion organisations in the south of The Netherlands, based on Researchers from Maastricht University in The informed decisions and/or participate more convenience sampling. Netherlands have conducted a systematic actively in future interactions with staff (7), and The carers were asked about review to identify interventions to foster family providing psychoeducation for family members their experiences of inclusion in nursing homes for people with (3). The review gives brief information about the collaboration with nursing dementia – and concluded that very few approach used within these identified home staff, including the interventions exist that try to enhance equal interventions. things that hinder or facilitate family-staff partnerships in nursing homes. The researchers say more effective research is it. From the data, three themes The systematic review opens with a literature needed – few studies evaluated whether or not emerged of critical elements review that explores issues, barriers and the intervention led to an increase in family for shaping collaboration with previous systematic reviews in this area. This inclusion within the nursing home. They say staff from the families’ review identified 29 studies in total; from this future interventions should pay specific perspective: ‘communication’, pool, the researchers identified 25 studies in attention to mutual exchange and reciprocity ‘trust and dependency’, and which 21 different specific interventions for between family and staff. ‘involvement’. fostering family inclusion in family-staff Backhaus R, Hoek LJM, de Vries E, van Haastregt JCM, The researchers conclude interactions were tested. These 21 interventions Hamers JPH, Verbeek H (2020) Interventions To Foster that good communication were aimed at creating family-staff partnerships Family Inclusion In Nursing Homes For People With appeared to be a requisite (2), including family members in formal Dementia: A Systematic Review. BMC Geriatrics condition for having trust in decisions (9), enabling them to make better 20(434) doi: 10.1186/s12877-020-01836-w staff and quality of involvement in residents’ life. Good communication included Systematic review of diversity and dementia services having informal contact with staff, allowing family and staff Researchers from King’s studies, in total involving versus US comparison groups. to build a personal connection. College London in the UK have nearly 100,000 older adults with Less was known about primary They say that increasing conducted a systematic review dementia or mild cognitive care and emergency services. informal contact and building to examine whether minority impairment; most of the studies They say the study quality a personal connection should ethnic groups across the world were from the US (13), the UK was mixed, with a large be a priority for staff in order have longer delays before (4), Australia (1), Belgium (1) amount of variability in the to improve collaboration and accessing dementia or memory and The Netherlands (1). way ethnicity and service use to create partnerships with services, higher use of acute The researchers concluded outcomes were ascertained and families. care and crisis services and that there was little evidence defined. lower use of routine care that minority ethnic groups in Co M, Couch E, Gao Q et al (2020) Hoek LJM, can Haastreat JCM, de services, based on current any country accessed routine Vries E, Backhaus R, Hamers JPH, Access To Health Services In Older literature. They also examined care at different rates than Verbeek H (2020) Partnerships In Minority Ethnic Groups With Nursing Homes: How Do Family whether minority ethnic groups comparison groups, although Dementia: A Systematic Review. Caregivers Of Residents With presented to memory services there was strong evidence that Journal of the American Geriatrics Dementia Perceive Collaboration with more advanced dementia African American/Black Society. First published 24 With Staff? Dementia 17(175) doi: or lower cognition. groups had higher use of November 2020: doi: 10.1177/1471301220962235 The review identified 20 hospital inpatient services 10.1111/jgs.16929

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 43 RESOURCES

COVID-19 resources The Centre for Health Services Research at the www.dementia.org.au/languages and search University of Queensland has led on the according to the relevant language. publication of resources to support the delivery of quality of care for people with cognitive Saying Goodbye: A Resource For Care impairment in hospital in Australia during the Homes is a new publication from NAPA, the COVID-19 pandemic. The key resource is titled National Activity Providers Association in the UK. Going To Hospital During The COVID-19 The 22-page resource brings together a Pandemic: Guidance For Adults With collection of information sheets and aims to Dementia Or Other Cognitive Impairments, support care staff and teams to acknowledge Their Care Partners And Families, and an the losses experienced by those living and accompanying background document for health working in residential aged care during the care professionals. A two-page poster is also COVID-19 pandemic. Topics covered include: available with a flow chart setting out COVID-19 ‘How to say goodbye’, ‘Supporting loss and Policy Press is the publisher of a clinical strategies for people with cognitive saying ‘goodbye’’, ‘Supporting people living with new book entitled Remote and impairment. A number of organisations were dementia in care homes to respond to loss and Rural Dementia Care: Policy, involved in the development of the resources, grief’, ‘Loss and grief in the care home’, Research and Practice, edited including the Australian Commission on Safety ‘Acknowledgment of the death of a resident’, by Anthea Innes, Debra Morgan and Quality in Health Care and the Dementia and ‘Showing respect after death’. The content and Jane Farmer (Swinburne Australia Advisory Committee. Available at has been developed by a range of organisations University of Technology; see p2 https://bit.ly/2VrSn8P and individuals, including the Association of of this issue). One of the chapters Dementia Studies at the University of Worcester, focuses on Australia: ‘Addressing The website for NSW’s Agency for Clinical dementia consultant Danuta Lipinska, and staff Dementia Needs in Australia’ and Innovation hosts a hub of resources developed from St Christopher’s Hospice in London. was contributed by Irene by the Pandemic Kindness Movement – a Access the resource at https://bit.ly/3fsPU71 Blackberry (a co-author in this resource created by clinicians across Australia, issue of AJDC), Clare Wilding, working together to support all health workers Researchers from University College London Michael Bauer, Margaret Winbolt during the COVID-19 pandemic. The hub brings have worked with family carers of people living and Hilary Davis. Other chapters together evidence-informed resources and links with dementia to develop a decision aid titled consider the experience of to valuable services to support the wellbeing of Supporting You To Make Decisions While people with dementia living in the health workforce – and presented within Caring For Someone Living With Dementia rural areas in other countries, sections based on an adaption of Maslow’s During Coronavirus (COVID-19) and including Norway, Ireland, hierarchy of needs (basic needs, safety, love, Beyond. The 19-page guide is aimed at carers Austria, Canada and Scotland. belonging and so on). The resources are who may be forced to make rapid and difficult Distributor NewSouth Books intended to be shared with health workers who decisions regarding a person living with dementia is offering AJDC readers a 30% need support and can be accessed digitally or who becomes unwell due to suspected or discount when purchasing this printed. To access, go to https://aci.health.nsw. confirmed COVID-19. It includes sections on book. To order, email gov.au/covid-19/kindness wishes and preferences, advance care plans, [email protected] with managing care at home, supporting someone in your name, delivery address Dementia Australia released four Help Sheets in a care home, hospital care, and care for the (excluding PO boxes), quantity response to the COVID-19 pandemic – and carer. The document is set out with space to required, book title and ISBN these have now been translated into 38 enter responses, ideas and decisions. Although (9781447344957). The price for languages. The four help sheets include Tips much of the information is UK-specific, the key AJDC readers is $69.99 For People Living With Dementia which decision-making steps are helpfully explained (normally $99.99, hardback) plus outlines the coronavirus symptoms, hygiene with clear suggestions for issues to consider, $12.50 delivery. Free delivery for tips, the importance of having a good support which will be relevant to anyone leading on the 3+ copies. network, ideas to remain active and engaged care of a person with dementia who has COVID- while in self-isolation, and where to go for help; 19. The guide is available at https://bit.ly/3l3lKs8 The Australian Association of Tips For Carers, Families And Friends Of Gerontology (AAG) has published People Living With Dementia which outlines The Social Care Institute for Excellence (SCIE) a position paper titled Wellness the coronavirus symptoms, hygiene tips, helpful has published online a collection of resources to & Reablement For All tips for primary carers, as well as for family, support care homes emerging from COVID-19 Australians Receiving Home, friends or neighbours, ideas for remaining active lockdown, titled Care Homes And Supported Community & Residential and engaged while in self-isolation, and where Living: Learning And Sharing Following The Aged Care Services. The to go for help; Tips For Residential Care COVID-19 Lockdown. The resources are paper presents 10 core Providers which outlines the impacts grouped into three learning areas: ‘Staff principles to ensure that the coronavirus may have on residents, tips on wellbeing’, ‘Balancing infection control with needs, strengths and alternative activities and how to support wellbeing’, and ‘Opening up care homes and preferences of older people are continued engagement with families and carers; supported housing’, and include examples from met through wellness and and Tips For Home Care Providers which a range of care homes, some of which support reablement approaches across outlines the impacts coronavirus may have on a people living with dementia. The resource aged care. Principle 2 refers to person living with dementia, tips to reduce highlights key learning from the examples and the need to include support to heightened anxiety and where to go for help. To provides links to related helpful resources. address the impact of cognitive access the resources, go to Access the resource at https://bit.ly/3l1R5vq disability on day-to-day

44 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 RESOURCES functioning (including health, Tips for dementia-friendly Zoom meetings mental health and emotional wellbeing). The AAG says the Members of the Dementia Australia Advisory Committee (DAAC) – all people living with dementia – purpose of the paper is to provide have developed a range of new resources to support the use of video conferencing, in particular clear direction to the Australian using the Zoom video conferencing platform. Government, policymakers and DAAC members had spoken about the challenges of using Zoom, and DAAC member and AJDC service providers on the core Editorial Advisor Dennis Frost suggested the group develop some resources to support people living principles of wellness and with dementia to navigate Zoom video conferencing, particularly given how reliant most people are reablement in aged care. on this platform since the pandemic. Available at: www.aag.asn.au/ The result is a group of resources – two guides and three help sheets – that include practical step- documents/item/3692 by-step instructions on how to use the technology, and helpful tips on how to get the best out of the online experience, including preparing written signs to use during the meeting such as ‘I want to Academic Press (under Elsevier) speak’ or ‘I agree’. has published a new 288- There are also tips on how to hold a dementia-friendly meeting, including taking a five-minute page book, Dementia break every 30-45 minutes or when needed, ensuring everyone’s name is clearly displayed on Rehabilitation: Evidence- screen, and making sure any meeting papers are emailed rather than in a link. based Interventions And Members of the Advisory Committee developed the resources, and then sought feedback from Clinical Recommendations, others living with dementia and staff from Dementia Australia. co-edited by Lee-Fay Low and The two guides are titled Using Zoom: Guidelines For Meetings and Using Zoom: Kate Laver. The book opens with Participating In Meetings, and the four help sheets are titled Zoom Tips: How To Join A a chapter from dementia Meeting; Zoom Tips – How To Get The Best Out Of The Experience; Zoom Tips: On advocate Kate Swaffer, writing on Holding A Dementia-Friendly Meeting; And Zoom Tips: Tools And Examples. The free, online ‘Rehabilitation: a human right for resources are available at https://bit.ly/2IWCOmZ everyone’. The book’s 13 chapters cover broad terrain, including communication, evidence to inform healthcare restrictions’ and ‘Understanding distributed to housing providers, cognitive treatments, maintaining decision-making – the most well- dementia’. The sessions – being and case studies involving physical functioning, leisure known of which is the Cochrane badged as Virtual Classrooms interviews with key staff and activities, driving, employment Database of Systematic Reviews. – can be delivered to groups of family members. The researchers and buildings and design. Each From time to time, the Cochrane up to 25 staff, who can be in concluded that, although chapter presents the research Library curates a Special different locations. The cost for a residents who walk with purpose evidence followed by practical Collection which brings together group of 25 staff is $985; the constitute a minority of people information on clinical all its reviews on a particular topic cost for an individual is $55. The living in retirement and extra care assessment and delivery of as a way of making the research Centre for Dementia Learning housing schemes, managing therapies. The book is aimed at more accessible to a wider says a person-centred approach walking with purpose can be a health and social care audience, including clinicians and is the focus for the courses, with challenge for management and professionals, service planners, policy makers. In September, the staff encouraged to get to know staff and can occupy a policy makers and academics, Cochrane Library published online the person – to understand their disproportionate amount of their and costs $A211.99. To find out an updated version of its Special needs, to learn about their time. The report presents about more, go to www.elsevier.com/ Collection On Diagnosing dementia, the level of their 20 recommendations across dementia (originally published in abilities and to be flexible in their various aspects: the resident BBC Music has launched a 2019) which brings together all the approach. Find out more at who engages in walking with ‘Music and dementia’ initiative, reviews focusing on test accuracy https://bit.ly/3pUp3FV purpose; care culture, working with over 100 of cognitive screening tests and management and staff; other organisations in the UK to help questionnaires, including the Mini- The Association for Dementia residents; family and other bring music to people living with Mental State Examination Studies at the University of stakeholders; and design and dementia. A key part of the (MMSE), Mini-Cog, the Montreal Worcester has published All assistive technology. The report initiative is BBC Music Cognitive Assessment (MoCA), Those Who Wander Are Not can be found here: Memories, which features the Informant Questionnaire on Lost: Walking With Purpose In https://bit.ly/3ft0pax nearly 3000 free, 30-second Cognitive Decline in the Elderly Extra Care, Retirement And music clips, with links to full- (IQCODE), and AD-8. A brief Domestic Housing, a 20-page

length tracks on Spotify and introduction is given for each report summarising recent Apple Music, to stimulate review, setting out the aim of the research conducted with UK memory through music. The research inquiry. Access at housing provider Housing 21. BBC hopes that families, friends https://bit.ly/3nRyDHW The study’s aim was to explore and carers will work alongside and understand walking with people living with dementia to Dementia Australia’s Centre for purpose among people living identify personally meaningful Dementia Learning has with dementia in extra care, music and create playlists. Find developed three online interactive retirement and domestic housing the resource here: https://music education sessions for aged care settings, along with the memories.bbcrewind.co.uk/ workers working in residential perceptions and responses of and community care: ‘Engaging staff and family carers, in order to
   The Cochrane Library is the name and connecting with people living develop good practice guidelines  !"#$! %&!"'( ) * !" "& !.&!"# given to the collection of with dementia through COVID- (in development). The study

databases that contain different 19’, ‘Supporting behaviour consisted of a scoping literature types of high-quality, independent changes during COVID-19 review, an online survey 01 !" 23*3*340567831%9: %*!"#&3

Vol 10 No 1 January/February/March 2021 Australian Journal of Dementia Care 45 RESOURCES

book is not affiliated with IKEA, The paper considers whether many of the 50+ ideas in the two propositions are true or resource involve an adaption false (‘The best way to help (hence the word ‘hack’) of a people with dementia find their familiar IKEA product – way is with signage’ and ‘Floor adjusted to better support the stickers help people with needs of a person living with dementia and vision dementia. The resource is the impairment find their way’), and work of Lekker Architects and presents arguments and industrial designers evidence in response. It Lanzavecchia + Wai. The Lien includes a series of Foundation says the aim of the recommendations, the first of resource is to bridge the gap which is that signage should be between design principles and used minimally in a residential practice by using IKEA items care home environment, and that are accessible and easy to only when other strategies for use. The highly visual and improving wayfinding have Latrobe University researchers colourful catalogue has two key been implemented. Hear Our Voice! Guidelines Dr Jo-Anne Rayner, Dr Deirdre sections: ‘Microworlds’ HammondCare concludes that For Involving People With Fetherstonhaugh and Dr (focusing on specific items such the physical layout of a space Dementia In Policy, Advisory, Michael Bauer have written a as the chair) and ‘Daily rituals’ or building is the most critical Consultation And Conference new accessible guide for (focusing on topics such as factor for how effectively a Activities is a new 24-page residential aged care staff, with mealtimes), alongside reflective person with dementia will be resource co-produced by The the Dementia Centre for contributions. The resource can able to navigate – rather than Centre for Economic and Social Research Collaboration. The be accessed at the signage. The resource is Research on Dementia (National 11-page guide, How To https://hackcare.sg/ available to download from The University of Ireland), The Irish Support Everyday Decision- Dementia Centre’s website at Dementia Working Group and Making For People Living DEEP – the UK’s Dementia https://bit.ly/2OYzrLH The Alzheimer Society of Ireland. With Dementia In Engagement and The resource aims to provide Residential Aged Care: A Empowerment Project – The World Dementia Council guidance for individuals and Guide For Care Workers, supports a growing network of (WDC) has published two short organisations that wish to involve begins by exploring some key over 100 peer support and reports drawing on its 2019 people with dementia in their questions: ‘Why people with advocacy groups for people work exploring the evidence work or to gain their views in a dementia should be supported living with dementia. Four DEEP base for dementia-friendly formal way. The guidance begins with everyday decision-making groups (Ashford Phoenix, initiatives. This work involved a with general principles and goes and have choices’, ‘How do Pathways in Bradford, the peer year-long consultation to gather on to cover a wide range of you know that a person with support group at Beth Johnson international evidence on the practical matters: interaction; dementia can make Foundation and SUNshiners) design and delivery of communication; providing decisions?’, and ‘How can you have now worked with film- dementia-friendly initiatives and information; venue; travel; support residents with making makers Biggerhouse to make involved a literature review, field consent; support; recognition everyday decisions and making 22 films which, together, are survey and a number of and acknowledgment; choices?’. It goes on to explore called DEEP Moments. The consultation events, including payment/expenses; and general how to assist decision-making films were all co-produced by one in Sydney in September guidance on all types of in a range of practical the DEEP group members, 2019. Due to COVID-19, the involvement. The resource can situations, for example, about working on a range of tasks WDC has decided not to be accessed at clothing and personal including planning, script publish one major report as a https://bit.ly/3jSLb0z appearance, when and what to writing and sound recording, result of this work – but instead eat, who to spend time with, and according to DEEP “are the to release a series of papers, The Life Changes Trust has participation in lifestyle films that people with dementia the first two of which have now published Loud And Clear: activities, showering or bathing, wanted to make” – about what been released. The first, Exploring Two Decades Of and going to bed and getting it’s like to live with dementia, Defining Dementia Friendly Involvement, Voice And up. The guide is available at and what life with dementia Initiatives, examines the Activism By People With https://bit.ly/3l0kl5G feels like. The first film in the context for the development of Dementia In Scotland, written series (4.5 minutes long) acts ‘dementia friendliness’ and by Philly Hare. The book tells the A Singapore-based as an introduction to the series. summarises the three main story of how people with philanthropic organisation To access the films, go to types of dementia-friendly dementia in Scotland have called the Lien Foundation has www.dementiavoices.org.uk/de initiatives (raising awareness, campaigned for social change commissioned and published a epmoments/ enabling participation, and over the past 20 years, in creative design guide to better providing support). The second particular the work of the support people living with HammondCare’s Dementia paper, Methodology and Scottish Dementia Working dementia. The 240-page online Centre has published a two- Bibliography, reports on the Group (SDWG) continuing resource, called Hack Care: page position paper on The project’s methodology and through to the work of various Tips And Tricks For A Use Of Floor-Mounted presents key references for the DEEP (Dementia Engagement Dementia-Friendly Home, Wayfinding Signage For work. Both are accessible from and Empowerment Project) has the appearance of an IKEA People With Dementia https://worlddementiacouncil.o groups in Scotland. The book catalogue, and although the Living In Residential Care. rg/DFIs chronicles the involvement of

46 Australian Journal of Dementia Care January/February/March 2021 Vol 10 No 1 RESOURCES people with dementia in all sorts year study on younger onset of the guide (About Healthcare health’, ‘Young onset dementia’ of activism, including research, dementia, and the largest ever Rights For People With and many others. Access the collaborations with artists, and conducted in the UK. The Cognitive Impairment) is also resources here: the influence of Scottish resource aims to present the available. Access the guide here: https://dementiaresearch.org.au dementia advocacy in the wider study’s findings and https://bit.ly/2Z1OZ6B /resources/lgbti-factsheets/ world, for example on Japan and recommendations in an easy- Australia. Some key individuals read, summarised form, The Journal of the American The Young Dementia Network in feature prominently – such as supported by quotes and Medical Directors Association the UK has published a leaflet James McKillop and Agnes images. The study involved has published a new article, intended to help a person to be Houston – but many others’ gathering views of professionals Medication Management in aware of the most common voices are included too. The and over 230 people living with Frail Older People: signs and symptoms of younger book features case studies or caring for someone with Consensus Principles for onset dementia, and to record (demonstrating the impact of younger onset dementia, Clinical Practice, Research, changes and symptoms they dementia activism), an easy-read through interviews and a survey, and Education, based on the may be experiencing. The leaflet accessible, three-page summary as well as auditing 500 sets of work of the Optimizing Geriatric includes a checklist with 20 (which can also be downloaded case notes. Key Pharmacotherapy Through questions, such as ‘Are you separately), and an appendix recommendations relate to Pharmacoepidemiology feeling less mentally ‘sharp’ than with practical tips for newer diagnostic accuracy, the Network, which includes several in the past?’, ‘Have you activists. The book is available individual’s experience, care researchers from Australia’s developed problems with on the DEEP website, at plans, and service design and Monash University’s Centre for reading, managing money, https://bit.ly/3f0Ldj6 development. The research was Medicine Use and Safety figures or other mental skills?’, funded by the Alzheimer’s (CMUS). The consensus position and ‘Are you finding it harder to Dementia – A Whole Life Society and carried out by the includes seven principles for keep up with work demands Approach is the title of a boxset universities of Bradford, clinical practice, six principles for than you used to?’. The idea is of resources launched by the Life Northampton, Surrey and UCL in research, and four principles for that the checklist is used as a Changes Trust in Scotland. The partnership with Dementia UK education. The authors say that prompt for a conversation with a Trust was established in 2013 and YoungDementia UK. The these principles can be used in GP or health professional – it is with a substantial lottery resource is available on the conjunction with existing best not intended to be a diagnostic endowment, half of which ($A45 YoungDementia UK website at practice guidelines to help tool. In November 2020, Young million) was allocated to the https://bit.ly/30Zl27E achieve optimal health outcomes Dementia UK (the organisation Trust’s Dementia Program of for this vulnerable population, behind the resource) merged work. This boxset presents The Australian Commission on and that implementation will with Dementia UK, and both much of the learning from work Safety and Quality in Health Care require multidisciplinary organisations will now use the completed from 2015-2019, has published a new guide, titled collaboration between title of Dementia UK. The with contributions from a wide My Healthcare Rights: A healthcare professionals, checklist can be found at range of organisations and Guide For People With researchers, educators, www.youngdementiauk.org/you individuals involved with the Cognitive Impairment, which organisational leaders and ng-dementia-network program. The five volumes of the explains the rights all people policymakers. Access the full resource are: ‘Human rights and have to safe and high-quality article here at The European Journal of dementia’, ‘Community and care, informed consent and https://bit.ly/2R66NZT Neurology has published A dementia’, ‘Independence, open disclosure. The guide European Academy of confidence and support’, ‘Peer covers topics such as ‘What do I The Dementia Centre for Neurology Guidelines On support and dementia’, and need to know?’, ‘What can I Research Collaboration (DCRC) Medical Management Issues ‘Information, awareness and do?’, ‘What can I expect?’, and has published a set of 20 LGBTI In Dementia. The guidelines training’. The resource is worth ‘What if things don’t go to Fact Sheets within its collection have been in development for exploring due to the sheer size plan?’, as well as links to further of BPSD Resources, arising from some time and are based on a and breadth of this work resources. An easy-read version the DCRC’s BPSD research systematic review of literature program, shaped from the project. The DCRC says that the and the Grading of outset by the involvement of aim of the fact sheets is to Recommendations, people with dementia, although provide background information Assessment, Development and much of the information is on the lived experiences of Evaluations (GRADE) framework. Scotland-specific. The boxset LGBTI peoples which can The guidelines’ recomm - can be accessed on the Life influence the presentation of endations for clinicians cover five Changes Trust website at behaviours and the additional key areas: systematic medical https://bit.ly/2P35IkI considerations relevant to their follow-up for patients with care. The fact sheets are aimed dementia, management of Good Practice In Young at care staff and health vascular risk factors in dementia, Onset Dementia: Improving professionals working in all care management of pain in Diagnosis And Support For settings, and vary in length. dementia, management of Younger People With Topics covered include for agitation/aggression in Dementia is the title of a new example fact sheets on dementia, and management of resource from YoungDementia ‘Personal history and lived epilepsy in dementia. The full UK, which reports on results experience’, ‘Disclosure and guidelines can be found here: from The Angela Project, a three- identity’, ‘Mental and physical https://bit.ly/33ci959

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