NEWSLETTER May 2010

dementia plans, which will take Highlights in this issue Editorial place on 22 June. 14 May 2010: Play about I would like to Work is progressing well on our Rita Hayworth’s life with extend a warm different projects, such as the 10 Alzheimer’s disease welcome to literature review on the ethical performed Elena Oana implications of assistive Antonescu, technologies or the 27 May 2010: Alzheimer MEP from establishment of national medication may be 4 Romania and reports on proxy-decision reimbursed in Bulgaria thank her for making in dementia. joining the other 46 MEPs who 30 May 2010: Poster by In May, Annette and I attended have become members of the the Finnish Alzheimer 6 an expert meeting convened by European Alzheimer’s Alliance Society wins award the Belgian Ministry of Health from 16 European Union for the preparations of a Belgian countries. Presidency Conference on the Raising awareness of the societal aspects of dementia

disease itself and the issues and the research paper which surround it plays a presented by Professor Murna fundamental part of our Down highlighted a number of members’ work. This month is interesting policy approaches to no different and we report on destigmatise dementia and our members’ activities from improve the quality of life of Finland, Greece, Ireland, both people with dementia and Portugal and the UK (both in their carers. This will definitely England and in Scotland). be a Conference to look forward to. Greater understanding of the Table of contents disease can also be gained by In this newsletter, we also report on two meetings Editorial...... 1 hearing people describe how it has affected their lives. This organised by the European European Alzheimer’s Alliance ...... 2 month we report on John Patients’ Forum. As a founding Alzheimer Europe Networking ...... 2 Suchet’s moving observations member of the Forum, of caring for his wife, Bonnie, Alzheimer Europe continues to European developments...... 3 who has Alzheimer’s. We also believe in the need of a strong Other European organisations...... 3 bring news of a play about the and united patients’ voice in life of Rita Hayworth and her Europe and we are delighted to Policy Watch...... 3 struggle with the disease. The report on the organisation’s Members’ News...... 4 contrast between her on screen continued good health both in life and battle with Alzheimer’s its past activities, future plans Science Watch ...... 6 disease provides a stark and financing. Dementia in Society ...... 10 reminder of the fact that Finally, as always we bring you dementia can strike anyone at New resources and publications ..... 11 a selection of research news on any time. AE Calendar ...... 12 the genetics, prevention and In the office we continue to treatment of Alzheimer’s Future Conferences...... 12 prepare for our forthcoming disease and other forms of conference in September and I dementia. It is truly encouraging take this opportunity to remind to see the amount of research readers that our call for that we can report on a weekly abstracts closes on 30 June. basis. Early bird registration is also still available and you can register Jean Georges at a reduced rate until 31 July. Executive Director We have also started preparations for our lunch debate in the European Parliament on national

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European Germany Niebler Angelika (EPP), Roth-Behrendt Dagmar Alzheimer’s Alliance (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP) Greece In April, Antonescu Elena Oana Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (Romania) joined the European (S&D), Kratsa-Tsagaropoulou Rodi (EPP) Alzheimer’s Alliance, which brings the total number of Ireland MEPs in the Alliance to 46, representing 16 Member States Aylward Liam (ALDE), Childers Nessa (S&D); of the European Union and six Crowley Brian (ALDE), McGuiness Mairead (EPP), of the seven political groups in Mitchell Gay (EPP) the European Parliament. Italy Antonescu The members of the European Panzeri Pier Antonio (S&D), Toia Patrizia (S&D) Elena Oana Alzheimer’s Alliance are the (Romania, EPP) following: Luxembourg Belgium Lulling Astrid (EPP) Brepoels Frieda (Greens/EFA), Ries Frédérique Netherlands (ALDE), Staes Bart (Greens/EFA), Sterckx Dirk (ALDE) De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP) Cyprus Portugal Triantaphyllides Kyriacos (GUE-NGL) Coelho Carlos (EPP) Czech Republic Romania Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP) Antonescu Elena Oana (EPP) Denmark Slovakia Schaldemose Christel (S&D) Mikolasik Miroslav (EPP), Zaborska Anna (EPP) Finland United Kingdom Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli Hall Fiona (ALDE), Lynne Liz (ALDE), McAvan Linda (ALDE), Pietikäinen Sirpa (EPP) (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Watson Graham (ALDE), Willmott Glenis (S&D). France Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Morin-Chartier Elisabeth (EPP) Alzheimer Europe Networking On 4 May (Brussels, Belgium), Jean and Annette attended the Belgian Presidency expert meeting on dementia. On 4 May (Brussels, Belgium), Annette attended the European Parliament Environment and Health Committee meeting to hear Commissioner Dalli's Work Plan for 2010. On 5 May (Berlin, Germany), Jean attended a Recognition Programme meeting and gave a presentation on Alzheimer Europe’s campaign to make dementia a European priority. On 6 May (Brussels, Belgium), Annette attended the Patients’ Rights Day organised by Active Citizenship in the European Parliament. On 11 May (Brussels, Belgium), Annette attended the STOA meeting on ageing research in the European Parliament (FUTURAGE, a roadmap for ageing research). On 13 May (Luxembourg, Luxembourg), Jean met with Ruth Bosworth from Pfizer. On 18 May (Brussels, Belgium), Annette attended the European Patients' Forum Health Technology Assessment seminar. On 19 May (Brussels, Belgium), Annette represented Alzheimer Europe at the European Patients' Forum General Assembly meeting. On 25 May (Brussels, Belgium), Annette met with Roxana Radulescu (European Patients’ Forum Senior Policy Advisor).

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19 May 2010: European Patients’ Forum European holds its AGM The European Patients' Forum (EPF) General developments Assembly Meeting took place in Brussels on 19 May 2010. EPF received a warm welcome from its Here we report on developments from the European members for its work carried out in 2009, its 2010 institutions which may impact people with dementia work plan, its European policy work and the and/or their carers. management of its funds. 20 May 2010: European Commission Working groups were organised to focus on two launches second stage social partner questions 1) how can EPF membership best guide, consultation on electromagnetic field strengthen and reinforce EPF to the benefit of all of legislation its members and 2) where would the EPF be in 2020 The European Commission launched a 2nd stage as a European Patients' Movement ? consultation with European social partners on 20 In a closing speech, Commissioner Dalli's May 2010 to seek their views on the electromagnetic representative reiterated the Commissioner's field legislation. commitment to put patients high on the European The aim is to improve Directive 2004/40/EC of 29 Commission's agenda and work with patients. He April 2004 on the minimum health and safety touched upon the economic crisis and feared some requirements regarding the exposure of workers to difficult decisions would need to be made. It will be the risks arising from physical agents necessary to establish priorities in terms of limited (electromagnetic fields). budgets. Health promotion and prevention will empower people to make healthy choices. As Based on the outcomes of this consultation and other a healthy population goes hand in hand with a elements such as new scientific recommendations healthy economy, it will be worthwhile investing in and studies, the Commission will prepare a health. comprehensive socio-economic impact assessment before adopting a new legislative proposal. On a question from the audience regarding the funding of patient groups, Commissioner Dalli said Consultation deadline : 5 July 2010. that it is very likely that the 25% level of industry funding for patient organisations being eligible to EU funding will be maintained. The way forward would Other European be the setting up of a Foundation. In this respect, the Norwegian model was said to be an interesting organisations model. Here we cover the news from independent European organisations such as the European Patient’s Forum, We provide full references to (rather than official bodies of the EU) articles on our website. Please visit 18 May 2010: Seminar on Health the completely revised Alzheimer Technology Assessment held Europe website on: The European Patients' Forum (EPF) seminar on www.alzheimer-europe.org Health Technology Assessment (HTA)took place in Brussels on 18 May 2010. The seminar's aim was to redress the limited knowledge and know-how the patient community has on the science and rationale Policy Watch behind HTA. With speakers from the European In this section you can find articles on various Commission, patient organisations, industry and national policies and initiatives which can have an health professionals, the event presented the impact on issues surrounding dementia. science, methodologies, processes and policies behind HTA and how the patients could get involved. 7 May 2010: The state of California develops an Alzheimer’s Plan Parallel workshops were organised on: The Alzheimer’s Association (US) and the State • the science and methodologies behind Alzheimer’s Advisory Committee are leading the HTA development of a State Alzheimer Plan, which is the • the politics of HTA at EU and national first time that policy and practices regarding level: how can patient groups best get Alzheimer’s disease have been addressed since involved? 1987. It is being drafted by the Alzheimer’s State Plan Task Force, which is composed of • applying the Value+ model on patient representatives from the health care and provider involvement in the HTA process. community, researchers, academics, family caregivers, local and state government, law experts Annette Dumas attended on behalf of Alzheimer for the elderly and Alzheimer’s association staff and Europe. volunteers. The Plan be completed at the end of 2010 and will address: • Care and Services for people with Alzheimer’s disease and related dementias

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• Support for family caregivers Parallel to the workshop presentations on Alzheimer’s disease were held repeatedly all through • Public awareness and education the day. • Creation of a dementia capable workforce Brochures and booklets were distributed to 1,500 people while 150 new members enrolled with the • End of life care. Athens Alzheimer’s Association. African-Americans are at higher risk for Alzheimer’s 30 April 2010: Alzheimer Scotland disease, but less likely than whites to have a diagnosis and this can result in a delay of treatment. launches report on social care for To address this, a special consultation meeting (at dementia the Town Hall) was arranged. Online feedback was Alzheimer Scotland’s new report, Let’s possible throughout May. The Task Force created a Get Personal – personalisation and caregiver survey (in English, Chinese, Spanish, dementia, was launched at the end of Vietnamese and Korean) with input being submitted April and received significant Scottish before 31 May 2010. media coverage. The report demonstrates what can be achieved when people with dementia and their 27 May 2010: Alzheimer medication carers are given control over their own social care reimbursed if used in hospital treatment support. in Bulgaria The Chief Executive of Alzheimer Scotland said, For the first time in Bulgaria, Alzheimer medication “This research shows that, when empowered to (Aricept and Exelon) is to be reimbursed by the state direct their own support, families effectively combine if it is used during hospital treatment. Irina Ilieva, the state resources around their own natural supports - Executive Secretary of the Bulgarian Alzheimer creating truly personalised support. Our findings add society welcomed this decision, saying that the weight to the Scottish Government’s drive towards society likes to “think that our joint efforts, including self-directed support and point to a new way forward the case we filed at the Commission for the for dementia services. Prevention of Discrimination, contributed to this.” The Society will continue to campaign for the Alzheimer “Improving access to personalised support, so that medication to be reimbursed for all treatment (not just people with dementia and their families can have in hospital). genuine choice and control, is the key to achieving the best possible outcome from both state and We provide full references to personal resources. Scotland must change its articles on our website. Please visit methods of community-based dementia care – remaining static is not an option. We hope that this the completely revised Alzheimer approach will be recognised by the forthcoming Europe website on: National Dementia Strategy and will be central to reshaping care in the future.” www.alzheimer-europe.org May 2010: "Kelembra has forgotten"- New Project of Alzheimer Portugal brings Members’ News generations together The Northern Branch of Alzheimer In this section we report on our members’ latest Portugal has embraced a new initiatives and work. project, this time planned for children and the 24 April 2010: Workshops for caregivers relationships established with their grandparents. of people with dementia organised in The main objective is to raise awareness in children Greece regarding the importance of support for their The Athens Association of Alzheimer’s grandparents helping them to overcome memory Disease and Related Disorders problems and some daily life difficulties. Promoting organised educational workshops for links between generations, reinforcing the role of the relatives and caregivers of people with elderly in society/family, with children as key players dementia on Saturday, April 24 2010, at in strengthening and nurturing these ties, are also the Athens War Museum, from 10:00- part of the objectives. 19:00 hours. Based on the book "Memo, the baby More than 250 caregivers attended and had the elephant", which was edited by opportunity to talk with health care Alzheimer Portugal, "The Storyteller - professionals about the problems Kelembra has forgotten" is intended and difficulties experienced trying to for children aged 6 to 10 years and is being meet patients’ needs. presented in interact with children in a very creative and captivating way. Also involved are an Workshop titles were: Occupational Therapist and a Clinical Psychologist, from the Association, who answer the questions, 1) Treatment of Alzheimer's Disease which arise from the story, regarding Kelembra the 2) Alzheimer's Disease Progression grandmother and the attitudes of Memo comparing 3) Behavioral and Psychological Problems them with real life situations of children. These 4) Practical issues of Caring. sessions stimulate their social interaction, patience,

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affection, and provide a better understanding of the as possible, for the support of dementia patients and relations with grandparents. their caregivers. The book "Memo, The Baby Elephant" 12 May 2010: UK- Award ceremony is aimed at children from 5 years recognises the work a carer of a person contributing to the demystification of with dementia and also donates proceeds Alzheimer's disease. It´s available in a to the Alzheimer Society bilingual edition – Portuguese/English - and is illustrated with colorful designs that tell the The dementia carer of the year 2010, which is one of adventures of Memo in Kenya. The book has the five awards given at the Daily Mail’s National Carers retail cost of EUR 12.50 and a special price of EUR of the Year Awards, was given to Michael Tuton, 10 for members of Alzheimer Portugal. whose mother, Molly, is in the late stages of dementia. Following the death of his father in 2002, 10 May 2010: Regional helpline launched Mr Tuton moved back to Hull from Canada in order to by the Alzheimer’s Society care for his mother. The Alzheimer’s Society has launched a 24 hour The event was sponsored by Bupa in support of helpline for people in Cornwall Alzheimer's Society, which will receive all funds who are affected by Alzheimer’s raised from the day. Celebrities supporting the event disease. The service offers included Lynda Bellingham, Britt Ekland, Julian information and support for people concerned about Fellowes and Angela Rippon. memory loss, confusion and dementia. The service is supported by Age Concern Cornwall. Andrew Ketteringham, Director of External Affairs of the Alzheimer’s 10 May 2010: Workshop organised Society, said “'Every year we ask our “Supporting the caregivers - An updated patrons, vice-presidents, partners and view on coping with dementia” in Greece ambassadors to meet together so that we can thank them for the enormous help The Greek Association of Alzheimer’s Disease and they give us. This year, with the proceeds Related Disorders (GAADRD) has going to Alzheimer's Society, we came to the participated in the ‘Students Week’, conclusion that this was the event to which we should held at Aristotle University of invite them all. It couldn't have been a better Thessaloniki, organising a workshop decision; it was moving and inspirational and all of us entitled “Supporting the caregivers - came away feeling privileged to have been present at An updated view on coping with dementia”. a very special occasion.” ‘Students Week’ is an event that encompasses a 20 May 2010: Alzheimer’s Society calls series of student activities and events held each year for advice to be given to doctors on for a period of 4-5 weeks mainly within the premises palliative care of the Aristotle University of Thessaloniki. This event aims at promoting student pursuits in many fields of Following the publication of the science and culture, encouraging the expression of General Medical Council’s (GMC) individual and collective creativity, and supporting end-of-life care guidance, the Alzheimer Society has human relations and social solidarity. called for doctors to receive advice on palliative care for people with dementia. Within this framework, GAADRD organized the aforementioned workshop on 10th May (17:00 - A spokesman for the Society said: “This guidance is 20:00), at the Ceremony Hall in the old Faculty of a good start towards addressing the needs of people Philosophy. Professor Magda Tsolaki and her staff, in at the end of their lives but it does not go far enough close cooperation with students from the Medical to tackle the specific needs of people with dementia. faculty of the Aristotle University and other It is good to see the GMC emphasising the need for specialists, were able to create a multidisciplinary doctors to weigh up the benefits of starting or workshop. The event was open to all members of the withdrawing treatment; that clinicians should academic community but also to the general public presume someone has the capacity to make and was attended by almost 220 people. decisions; and the importance of dealing with family members in a sensitive manner. However dementia Speakers covered a wide range of topics for is not adequately addressed in the report despite the caregivers. Areas covered included: family therapy, fact that one in three people over 65 will die with the tackling social stigma, legal advice for caregivers, devastating condition. People with dementia have dealing with behavioural disorders, communication specific end-of-life care needs and too many are techniques with patients, coping with caring subjected to an undignified and unnecessarily painful problems, satisfaction rising form the caregiving role , death. We need dementia-specific guidance for spirituality and the role of caring itself. clinicians if we are to ensure people with dementia The event proved to be a unique opportunity, both for get the dignity they deserve at the end of their lives.' students who were able to make presentations and 24 May 2010: The Alzheimer Society of learn more about dementia, but also for caregivers, who were given updated information in order to deal Ireland calls for action to be taken to with their strenuous role. It is the Greek Association’s develop a national dementia strategy, intention to continue organising these events and streamline dementia care and increase retain close cooperation with the academic funds community, in an effort to mobilize as many people A programme which focused on dementia care has been welcomed by the Alzheimer Society of Ireland

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(ASI), which is the leading dementia specific service carers dealing with 12 different agencies at any provider in Ireland. The programme on RTĒ News, one time. ‘Prime Time Investigates: Alzheimer’s Disease’ highlighted the issue of dementia care and the Alzheimer's disease and related dementias deepening crisis for carers due to difficulties in affect more than 40,000 people in Ireland, accessing information, support services and impacting on the lives of 50,000 carers. The specialist care. number of those affected is set to increase substantially due to population ageing. The Society is now making an urgent appeal for action to alleviate this hidden health 30 May 2010: The Finnish Alzheimer crisis for carers and those affected by Society poster awarded the title of the Alzheimer's disease or a related ‘Best Health Promotion Material of the dementia but warns that it is struggling Year’ to cope with the growing demand for its services nationwide. The Finnish Centre for Health Promotion has a tradition of The Society has launched an online campaign for electing the Best Health Promotion Material of the public support calling on the government to: Year. This year the title was granted to a poster by the Alzheimer Society of Finland. The message of the poster is built on a play of words: The Finnish • recognise Dementia as a National Health word MUISTA meaning both the imperative form of Priority NOW and expedite its plans to the verb to remember" and also the word "others". All develop a Dementia Strategy and in all, the message is to encourage people implementation plan so that there can be to care for others, to get inspired about better planning of services and policy as others, to worry about others - and to soon as possible. The Society has remember it all. reaffirmed its commitment to working with all the relevant stakeholders to achieve this The poster was designed by a small objective Finnish Advertising Agency called Maustamo. • take immediate action to streamline We provide full references to dementia care so that current spending on vital services can be more effective for articles on our website. Please visit families the completely revised Alzheimer • increase the commitment of funding for Europe website on: community based services - such as those provided by the charity - in order to enable www.alzheimer-europe.org families to continue caring for their loved ones at home, with dignity, for longer. Science Watch

Fundraising plays a vital role in providing This section has highlights of the most recent Alzheimer Society of Ireland services. On published research on dementia, including research average HSE funding represents only 68% of on the prevention, diagnosis and treatment of the cost - with more than €5m to be raised through disease. fundraising, donations and other grants annually. Despite funding constraints, demand 1 May 2010: New brain research project for services is rising with more than 800 people launched on The Society's waiting list for services. The UK’s independent science academy, the Royal Society, has launched a new project, Brain Waves, The Society is grateful for the tremendous which will investigate developments in neuroscience outpouring of support it has received following and their implications for society. the Primetime programme and the generous contribution of fundraisers and donors who help The project will be led by a Steering Group, chaired bridge the gap between funding received and by Professor Colin Blakemore, who said “Our cost of service provision. increasing understanding of the brain and associated advances in technologies to study the brain, including Equitable and timely access to specialist the human brain, are beginning to give us the tools to information, diagnostic services, community improve the treatments for neurodegenerative services such as home care, day care and short diseases, such as Parkinson’s and Alzheimer’s, and term respite as well as quality residential mental illnesses, including depression and services must be the benchmark towards which schizophrenia. But these advances will also increase the state strives according to the Society. our insights into normal human behaviour and mental wellbeing, as well as giving the possibility of The personal stories portrayed in the enhancement, manipulation and greater programme gave a snapshot of the complexity understanding of the degradation of brain function.” of issues families are dealing with, highlighting the lack of uniformity in delivery of services (the “Brain research is likely to have huge implications for quality and availability of services can be very society. We need to do something that scientists different in one area compared to another) and usually don’t like to do – to speculate about the fragmentation of the system which can see future. There’s a lot to think about and we must begin

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now the process of providing the best possible Alzheimer’s disease and Huntington’s syndrome information in areas of public policy such as health, have a common 3D structural unit, which researchers education, law, and security. Progress in have called “β-arcade”. The researchers hope that neuroscience is going to throw up all sorts of their work will help to diagnose the risk of developing questions about personality, identity, responsibility neurodegenerative diseases and also facilitate the and liberty. We need to be prepared to answer and identification of target sites in order to develop new respond to those questions.” treatments. There will be five reports, the first of which is 3 May 2010: Study examines the expected this Autumn and the last should be relationship between liver disease and published in 2011: memory loss 1. The first module consists of an assessment A study on 300 people who had cirrhosis of the liver of the relevance of neuroscience to the found that over half of them also displayed symptoms areas of public policy, addressing such of neurocognitive impairment. The study was part of issues as the ethics of neuroscience a larger study looking at the effects of AST-120 on technologies and their commercialisation. It people who have liver disease and neurocognitive is expected that this report will be impairments. published in the Autumn. Led by Christopher Randolph, Clinical Professor, 2. Neuroscience, education and lifelong Department of Neurology, Loyola University, learning - How can neuroscience help Chicago, the study was reported at the Digestive explain (and potentially enhance) memory, Disease Week meeting, New Orleans, USA. creativity, attention, motivation and other brain processes that are essential for 4 May 2010: Results from animal study on learning? The project will look at these potential Alzheimer’s disease released issues as well as the challenges, opportunities and limitations of applying the A potential Alzheimer’s drug, Anavex 2-73, which lessons from neuroscience to learning in targets mitochondrial dysfunction, has been tested on the classroom and beyond. on rats, mice and dogs. Results showed that “when (the drug was) administered prior to amyloid-beta 25- 3. Neuroscience, conflict and arms control - 35 peptide, ANAVEX 2-73 protected against the Addressing concerns around the military amyloid peptide-induced learning deficits, and security applications of rapid advances hippocampal lipid peroxidation and cell loss in the in the neurosciences; the risks of CA1 pyramidal layer and showed potent ‘militarisation’ of neuroscience. These neuroprotective activity.” Preparations are now include indications that advances in underway to carry out Phase I trials. neuropharmacology are stimulating new interest in the development of toxic Developed by the company Anavex, the research chemical and biological agents as was carried out with the research organisation incapacitating weapons. These would Forenap Pharma EURL. target the central nervous system to 5 May 2010: Study finds an increased risk degrade human cognition, performance, or of dementia for spouses of people who consciousness. have dementia 4. Neuroscience, responsibility and the law – A study published in the Journal of Assessing the possible future impact of American Geriatrics Society has found brain research on the legal system. This an increased risk of dementia for could include such issues as the possible spouses of people who have dementia. prediction of criminality, behaviour change, surveillance and mental privacy, as well as The study, led by Dr Maria Norton, Utah wider discussion about what neuroscience State University USA, was conducted on could mean for understandings of decision- over 2,000 people aged 65 and over who were making, intention, responsibility and free monitored over a 12 year period. The results showed will. that “incident dementia was significantly associated with older age, and having a spouse with dementia, 5. Lessons for the governance of novel areas with participants with a spouse who developed of science and new technologies - Bringing dementia being at a six times increased risk of together lessons and common themes developing dementia.” from the first 4 reports, this part will reflect on the governance, regulation and public 5 May 2010: Study examines the accountability of science and technology, relationship between the presence of AB principally for neuroscience but also for protein and Alzheimer’s disease other developing areas of science and technology, such as synthetic biology, A study which examined 43 brains to investigate the genomics and nanotechnology. relationship between biochemically distinct forms of amyloid- β protein and the presence of Alzheimer- 3 May 2010: Researchers identify type dementia found that “soluble amyloid β-protein common protein structure in is a major correlate of dementia associated with neurodegenerative diseases Alzheimer-type pathology and is likely to be intimately involved in the pathogenesis of cognitive Researchers have discovered that the proteins in failure.” neurodegenerative diseases such as Parkinson’s,

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The study was led by Dominic Walsh, University people found that those people with semantic College Dublin, Ireland and reported in the journal dementia, whilst “able to discriminate between Brain. different flavours and indicate whether they found them pleasant or not, had difficult in identifying We provide full references to individual flavours or assessing the appropriateness of particular flavour combinations (for example, articles on our website. Please visit vanilla and pickle)”. Researchers believe that this the completely revised Alzheimer loss of meaning for flavours links up with why people Europe website on: with semantic dementia develop a preference for unusual foods and food combinations. www.alzheimer-europe.org The study was led by Katerine Piwnica-Worms, Washing University in St Louis, Missouri and Jason 5 May 2010: Study on mice examines the Warren, University College London, UK and effect physical activity has on memory published in the journal Cortex. function 10 May 2010: Phase III trial commences A study found that the regeneration of hippocampal for potential Alzheimer treatment neurons was greater in those mice which were physically active or which had seizures compared to A Phase III clinical trial has begun which tests the those mice which were inactive. ability of Intravenous Immune Globulin (IVIg) in slowing down the progression of Alzheimer’s The study was led by Dr Verdon Taylor, Max Planck disease. For over 20 years IVIg has been used to Institute of Immunobiology, Freiburg, Germany, and treat primary immunodeficiency disorders. published in the journal Stem Cell. The trial is being led by Michael Rafii, Assistant 6 May 2010: Study on mice examines the Professor of neurosciences, UC San Diego School of relationship between ‘histones’, gene Medicine and Associate Director of the Alzheimer’s expression and memory function Disease Cooperative Study (ADCS). German researchers who investigated the 10 May 2010: Test which indicates relationship between ageing and the function of tiny propensity for various diseases, including protein spools (which control gene expression known Alzheimer’s disease, to be sold over-the- as histones) found that “by injecting a drug (some of counter in the US which have been previously used for cancer treatment) into the hippocampus of older mice to A test called the “Insight test”, which restore acetylation, the gene expression of these scans people’s genes for a propensity mice looked similar to their younger counterparts. for various diseases, including Moreover this treatment improved the ability of old Alzheimer’s disease, is to be made mice to remember a foot shock.” available in 6,000 Walgreens’ drugstores in the US from 14 May 2010. This will be the first time that such The study, led by Andrew Fischer, laboratory for testing be made available over-the counter. Aging and Cognitive Diseases, European Neuroscience institute, Gottingen, Germany, was The US Department of Food and Drug Administration published in Science. has questioned whether the Pathway Genomics’ test will be sold legally as it does not have the agency’s 7 May 2010: Study examines the approval. In addition, there have been various relationship between music and criticisms including those that the results will be too recognition vague to provide much useful guidance. A study which investigated the effect musical 12 May 2010: Study identifies two genes mnemonics had on verbal information associated with the risk of Alzheimer’s recognition found that people with disease Alzheimer’s disease demonstrated better recognition accuracy for sung lyrics than A study suggests that there are two more genes (one spoken lyrics. People without gene near BIN1 and the other near to BLOC1S3 and Alzheimer’s disease showed no marked difference MARK4) which are associated with the risk of between the accompanying sung or spoken Alzheimer’s disease. The results also reinforced recording when recalling the information. Participants earlier results from 2009 which had identified the were presented visually with lyrics to 40 songs, 20 of genes PICALM and CLU as being associated with which were accompanied by a sung recording and Alzheimer’s disease. This was a genomewide the other 20 by a spoken recording. association study (GWAS) on more than 35,000 people (the largest to date for Alzheimer’s disease). The study was carried out by scientists from Boston University School of Medicine (BUSM) and The study was led by Monique Breteler, Erasmus published in the journal Neuropsychologia. University, Rotterdam, the Netherlands and Sudha Seshadri, Boston University, USA. 10 May 2010: Study examines the relationship between flavour processing 12 May 2010: Study examines word recall and semantic dementia in the elderly A study which investigated the A study which examined word recall in people processing of flavour information giving between 75 and 90 found that people with few teeth different flavoured jelly beans to scored lower than those with more teeth.

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Participants’ recall was tested periodically over a 20 May 2010: Study examines the three year period by their being asked to relationship between the use of recall 10 words they had been presented pesticides and risk of dementia with five minutes earlier. A study has found that pesticide The study was carried out by researchers at the exposure may increase the risk of University of Kentucky, America. dementia and Alzheimer’s disease in late life. The study was carried out by 13 May 2010: Studies examine the inviting residents of the agricultural relationship between people with a trial community of Cache county, UT, aged fibrillation who are treated with catheter 65 years and older to participate. ablation and the risk of Alzheimer’s Over 3,000 people enrolled. Cognitive status was disease assessed at baseline then after 3, 7 and 10 years. Research presented at the Annual Scientific The study was led by KM Hayden, Departments of Sessions of the Heart Rhythm Society suggests that Psychiatry and Behavioural Sciences, Duke people with a trial fibrillation treated with catheter University Medical Center, Durham, USA and was ablation are less likely to develop Alzheimer’s published in the journal Neurology. disease or other forms of dementia. 20 May 2010: Study examines obesity The on-going research has been carried out on over and dementia 37,000 people over a three year period by scientists from the Heart Institute at Intermountain Medical An analysis of the relationship between Center and led by John D May and T Jared Bunch. various factors (body mass index (BMI), waist circumference (WC), waist 17 May 2010: Experts explore the to hip ratio (WHR), subcutaneous adipose tissue relationship of caffeine on the brain and (SAT), visceral adipose tissue (VAT) with magnetic Alzheimer’s disease resonance imaging (MRI) markers of brain ageing) found that in middle-aged participants there was a A collection of original studies by experts stronger connection between central obesity and the offer various perspectives on the role risk of dementia and Alzheimer’s disease. caffeine may play including: The study, led by Sudha Seshadri, was carried out • Caffeine and Cognition in by researchers from the Boston University School of Functional Magnetic Resonance Imaging Medicine and published in the journals Annals of • Is Caffeine a Cognitive Enhancer? Neurology. • Chronic Caffeine Consumption Prevents 30 May 2010: Study highlights the role Memory Disturbance in Different Animal three proteins, AB, tau and -synuclein, Models of Memory Decline may play in cognitive decline • Caffeine and Coffee as Therapeutics A study in which researchers developed a mouse Against Alzheimer’s Disease model which exhibits the combined pathologies of Alzheimer’s disease and dementia with Lewy bodies • Caffeine Protects Against Disruptions of (DLB) found that, compared to other transgenic mice, the Blood-Brain Barrier in Animal Models of the mice with AD/DLB exhibited “accelerated Alzheimer’s and Parkinson’s Diseases cognitive decline associated with a dramatic enhancement of Aβ, tau, and -synuclein • Caffeine, Cognition, and Socioeconomic pathologies.” The researchers believe this supported Status the theory that Aβ, tau, and -synuclein interact in • Caffeine, Cognitive Functioning, and White vivo to promote the aggregation and accumulation of Matter Lesions in the Elderly: Establishing each other and accelerate cognitive dysfunction. The Causality from Epidemiological Evidence study also revealed that the accumulation of - synuclein alone could significantly disrupt cognition. • Caffeine as a Protective Factor in Dementia and Alzheimer’s Disease The study, led by Frank La Ferla, University of California, was published in the Journal of • Caffeine Intake is Associated with a Lower Neuroscience. Risk of Cognitive Decline: A Cohort Study from Portugal We provide full references to • Caffeine Intake and Dementia: Systematic articles on our website. Please visit Review and Meta-Analysis. the completely revised Alzheimer The experts were brought together by guest editors Europe website on: of the Journal of Alzheimer’s disease, Alexandre de Mendonga, Institute of Molecular Medicine and www.alzheimer-europe.org Faculty of Medicine, University of Lisbon, Portugal, and Rodrigo A. Cunha, Center for Neuroscience and Cell Biology of Coimbra and Faculty of Medicine, University of Coimbra, Portugal.

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and its symptoms played a big role in my decision to Dementia in Society write the play. I have personally experienced it through a close family member, and it is not easy to 10 May 2010: USD 15 million donated to grasp the deterioration of a person with so much Alzheimer’s research knowledge and vividness. It is one of the most absurd phenomena of human nature.” A US couple, Charles F and Joanne Knight, have donated USD 15m to Washington University’s Charles Scerri, General Secretary of Alzheimer’s research centre. Joanne Knight’s mother the Malta Dementia Society, who was diagnosed with Alzheimer’s disease in the 1980s attended the play said, “I found the and she is a board member and former chairperson performance very refreshing and I of the St Louis chapter of the Alzheimer’s believe it can be used as an Association. educational tool in raising awareness. It was different and highly entertaining.” The Centre’s director, John Morris, said, “The Knight funding of the Alzheimer's centre will provide us the 19 May 2010: Author talks of her wherewithal to retain faculty whom we'd like to keep mother’s dementia and also to recruit faculty that we need to replace individuals or to go into a new direction that's been Author Catherine Horwood has described her developed. We don't have to wait to develop a track experience having a mother with Alzheimer’s record of preliminary findings and then a grant disease. Ms Horwood had noticed over a two-year application process and then wait to see if the grant period that her mother, a former ballet dancer, found is awarded. We can immediately begin exciting and tasks increasingly difficult and witnessed her promising new studies with this wonderful gift." mother’s frustration. For example, her mother found that she could no longer read because she couldn’t The news was announced on the St Louis Public remember what the proceeding text was about, nor Radio Station. could her once elegant mother remember how to button up a cardigan. Ms Horwood felt further 10 May 2010: Song about Alzheimer’s confirmation that something was deeply wrong when disease performed her mother lost her passion for gardening, something Song writer and singer Loretta Hagen performed her which had been a common interest for them both. song “Sundown Till Dawn” at the Connecticut Film Her mother also recognised her changing condition, Festival, USA. The song is written about her mother, as Ms Horwood’s grandma had also had dementia. Vera Tutini, who was diagnosed with Alzheimer’s Ms Horwood explained how the symptoms worsened disease seven years ago. Hagen hopes that her song and one day her mother, who rarely left the house, will raise awareness and funding for research into the went outside into the street and told a neighbour disease. “there’s a man in the house. He wants to kill me. I can’t go back in there.” She refused for a long time to We provide full references to return to the house and a chair was brought out for her. The man, explained Ms Horwood, was her father articles on our website. Please visit who had been married to her mother for 50 years. the completely revised Alzheimer Her mother died two months later. Europe website on: Ms Horwood said “few other degenerative diseases strip someone of their personality quite so thoroughly www.alzheimer-europe.org as Alzheimer's. Watching someone you love become so diminished is agony. At the first signs, there is the 14 May 2010: Play performed about Rita denial that this can be happening. Then there is Hayworth’s life and struggle with anger with the illness itself; and sometimes even Alzheimer’s disease anger with the person themselves for no longer being who they were. And finally there is the living “Me, myself and Rita” is a one-actress bereavement: mourning someone who is still alive play depicting the life of 1940s film star, but no longer with you.” Rita Hayworth which was performed in many countries, the latest of which was, 27 May 2010: British newscaster talks Malta, in May. Written and acted by about his experience of his wife having Almog Pail, the play presents the dementia contrast of Ms Hayworth’s glamorous stage life with that of her real life, in which she lived with early onset British newscaster, John Suchet, has Alzheimer’s disease. spoken about his experiences since announcing that his wife, Bonnie, has In an interview in the Malta Independent, Ms Pail dementia. After some encouragement described the impact Alzheimer’s disease had on by specialist nurse, Ian Weatherhead, Rita Hayworth saying, “Alzheimer’s disease struck he kept a journal about this journey, Rita in her early forties, progressively ruining her which he has decided to publish, calling it “My life. She could barely memorise text, and it became Bonnie: How Dementia Stole The Love Of My Life”. impossible to work with her. The real tragedy was the lack of awareness of the disease at the time, leading Originally Mr Suchet thought not many people would people to confuse her condition with alcoholism and take notice of his announcing his wife’s dementia, but foolishness. She was thrown out of Hollywood, dying he explained his surprise as he “received hundreds as a recluse in her New York apartment after a 20- of thousand of e-mails and letters from all across the year struggle. The power of this destructive disease world, all from carers saying that's what we're going through. Thank you for talking about it."

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Since the announcement made last year of Bonnie 5 May 2010: US Teenagers from Suchet’s dementia, Mr Suchet has had to place her Alzheimer organisation hope to expand in a home. He said that “Bon went into full-time care content on their website last September and to say it was the most difficult decision I've ever had to take is a pathetic A part of the Alzheimer’s Foundation of America’s understatement." website is dedicated to helping teenagers who are affected by Alzheimer’s disease. Written by a He also described the day he took her into care and teenager the site is called AFATeens.org. and calls the fact he had to buy her a one way train ticket, for teenagers to: saying "It's the little things that break you up." • Get connected – by gaining support from Mr Suchet talked of his own struggle, having to adapt experts, sharing experiences and to his new life without his wife and said “I'm starting a remembering loved ones with creative new life. Am I happy? Of course not. Am I excited? contributions God, no. It was never supposed to be like this.” • Take action – by joining or starting AFA New resources and Teens chapters and • Learn more. publications The author wishes to develop this site, hoping to By reporting on recently published books, reports and expand the education content by adding interactive information videos on dementia we hope to offer online tools which explain disease progression, offer updates on the current resources available to anyone coping strategies and encourage teens to adopt who is affected by dementia. healthy lifestyles that can lower risk factors. To fund this, a proposal has been posted on the Pepsi ideas 1 May 2010: Book published on dance for website (refresheverything.com) where ideas are people with dementia posted then voted on. The winner is awarded money from Pepsi for their project. The guide “Invitation to the Dance” offers practical suggestions (such as dance ideas, themes, music 20 May 2010: The French Ministry of and props) aimed to help carers organize simple Health guidelines on Alzheimer’s disease dance sessions for people with dementia. It is not published in English necessary that the carers have experience in dance as the book hopes to encourage lay people to run the Recommendations by the Ministry of Health which sessions. were made within the framework of the French Alzheimer’s Plan (2008-2013) have now been made The guide includes chapters on: available in English. Quick reference guides now available in English are: • Where does dance fit in? • The management of behavioural disorders • Let’s dance! • Diagnosis and treatment of Alzheimer’s • Structure of the session disease • The ethic of the dance session • Alzheimer’s disease and related • Materials for the dance session conditions: Health monitoring for family carers. • Dancing with people with dementia And the Clinical Practice Guidelines now published in • Sample dance sessions. English is The author, Dr Heather Hill, who has run dance • Alzheimer’s disease and related sessions for people with dementia explains “Dance conditions. Diagnosis and Treatment. sessions gave care staff the opportunity to see behind the mask of dementia, giving staff the time All of the above guides are available on the Ministry and space to relate to residents simply as human of Health’s website. being to human being, joining with them in an activity which could be vigorous, could be relaxing, could allow for sharing of memories, self expression or social interaction. These practical experiences, together with my own research, have convinced me that dance has much to offer in terms of meeting not merely the physical but also the social and emotional needs of people with dementia.” Invitation to the Dance (48 pages) by Heather Hill and the accompanying music CD by Ian Cullen costs GBP 25.00 and is available from the Dementia Services Development Centre (DSDC) Stirling, Scotland.

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AE Calendar The following meetings will be attended by representatives of Alzheimer Europe:

Date Meeting AE Representative 200th Anniversary Meeting of Karolinska Institutet (Stockholm, 8-9 June 2010 Jean Sweden) 11-12 June 2010 European Memory Clinics Association (Basel, Switzerland) Heike 21 June 2010 Alzheimer Europe Board (Brussels, Belgium) AE Board and staff European Parliament lunch debate “Alzheimer’s disease and 21 June 2010 dementia as a national priority: Contrasting approaches by AE Board and staff France, Germany and the UK” (Brussels, Belgium) EU Conference “Mental health and Well-being in older people” 28-29 June Jean (Madrid, Spain) Future Conferences

Date Meeting Place 9-11 June 2010 7th International Short Break Conference, www.isba2010.com Galway, Ireland International elder care conference, Transforming care 2010, 21-23 June 2010 Copenhagen, Denmark www.sfi.dk/transformingcare2010 18th European Social Services Conference, http://esn- 21-23 June 2010 Barcelona, Spain conference.org/ 1st International Congress on controversies in longevity, health 24-27 June 2010 Barcelona, Spain and aging (CoLONGY), www.comtecmed.com Mental Health and Well being in Older People- Making it Happen, 28-29 June 2010 http://ec.europa.eu/health/mental_health/events/ev_20100419_en Madrid, Spain .htm Together for Health – a Strategy for the EU 2020, 29-30 June 2010 http://ec.europa.eu/health/interest_groups/eu_health_forum/open_ Brussels, Belgium forum/2010/index_en.htm#fullwidth 2010 IANA (International Academy on Nutrition and Aging), Albuquerque, New 26-27 July 2010 www.healthandage.com/html/min/iananda Mexico Dignity for the Frail Old: From dilemmas to solutions, 2-5 September 2010 Bergen, Norway www.dignity.no International Conference on evidence-based policy in long-term 8-11 September 2010 London, UK care, [email protected] 15-17 September 26e Congrès de la Société de Psychogériatrie de Langue Limoges, France 2010 Française (SPLF), www.nexcom-events.com 22-25 September 5th Croatian Congress on Alzheimer's Disease with international Zadar, Croatia 2010 participation, www.alzheimer2010.com 30 September – 2 20th Alzheimer Europe Conference “Facing Dementia Together”, Luxembourg, October 2010 www.alzheimer-europe.org/conferences Luxembourg 7-9 October 2010 Gemeinschaft leben, www.deutsche-alzheimer.de Braunschweig, Germany Coming of Age: Dementia in the 21st Century, 19-21 October 2010 London, UK www.dementia.stir.ac.uk 9ème Congrès International Francophone de Gériatrie et Gérontologie 19-21 October 2010 Nice, France 30èmes Journées Annuelles de la Société Française de Gériatrie et Gérontologie, www.cifgg2010.com 10th Congress of European society for clinical neuro- 21-23 October 2010 Zagreb, Croatia pharmacology, http://www.escnp.org The 4th World Congress on Controversies in Neurology (CONy), 28-31 October 2010 Barcelona, Spain www.comtecmed.com 3-5 November 2010 Third Conference: Clinical Trials on Alzheimer’s Disease (CTAD), Toulouse, France

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http://www.ctad.fr The 10th International Conference on Alzheimer’s & Parkinson’s 9-13 March 2011 Diseases (AD/PD 2011), Barcelona, Spain www2.kenes.com/adpd/Pages/Home.aspx The VII International Association of Gerontology and Geriatrics 14-17 April 2011 (IAGG) – European Region Congress “ Healthy and Active Ageing Bologna, Italy for all Europeans II”, www.iaggbologna2011.com

The Alzheimer Europe newsletter arises from the 2010 Work Plan of Alzheimer Europe, which has received funding from the European Union, in the framework of the Health Programme.

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