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20th Alzheimer Europe Conference Facing Dementia together Luxembourg 30 September-2 October 2010 Programme and Abstract Book

Under the Patronage of Her Royal Highness the Grand Duchess Sous le Haut Patronage de Son Altesse Royale la Grande-Duchesse

Facing dementia together / Luxembourg 2010 Final programme / Welcome

Welcome

It gives us great pleasure to welcome you to the 20th Alzheimer Europe Conference from 30 September to 2 October 2010. And what better city to celebrate the 20th anniversary of our organisation than Luxembourg which has been home to the Alzheimer Europe office since 1996 and where the new conference centre is the direct neighbour of the European Commission, the European Parliament and the European Court of Justice. At Alzheimer Europe we passionately believe that we need to work together in order to address the vast challenges which dementia presents us with. For this reason, our 20th Conference has been organised under the theme “Facing dementia together” and we hope to explore the partnerships and collaborations necessary to promote a better quality of life for people with dementia and their carers. We are delighted to have secured the participation of some eminent dementia experts, each of whom plays an essential role in a person’s journey with dementia. Participating experts will further develop our theme in four plenary sessions which focus on the core relationship between people with dementia and their carers, as well as their relationship with professional carers, doctors and researchers, with the final plenary session being dedicated to the collaboration between the wider dementia community and policy makers.

approaches to the management of dementia, successful campaigning, organisation and financing of care, the international dimension of dementia and also on national dementia strategies. These contributions will enrich the discussions and experiences and make our conference a truly international and memorable experience for all participants. We would like to thank the various sponsors of our Conference and in particular, the European Commission which provided an operating grant to the activities of Alzheimer Europe in 2010 of which this conference is of course an essential part. We welcome you to Luxembourg and hope that our conference will provide ample opportunities for networking, meeting old and new friends, as well as increasing our understanding of dementia.

Maurice O’Connell Chairperson / Alzheimer Europe Liane Kadusch-Roth

Chairperson / Association Luxembourg Alzheimer

A great number of interesting topics has been chosen and we were delighted that so many accepted our invitation and submitted abstracts for presentations. The Scientific Committee was able to make an interesting selection and you will be able to choose from a wide range of presentations on such different subjects as innovative care services, nursing home care, non-pharmacological

Maurice O’Connell

Liane Kadusch-Roth

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Final programme / Foreword

Foreword

I am pleased that Luxembourg has been chosen to host the 20th anniversary meeting of Alzheimer Europe and the conference “Facing Dementia together”. I support the organisers in their aim to promote high quality, innovative and professional care for people suffering from dementia and Alzheimer’s disease in particular. Let me start with a positive message: Europeans are getting older. Statistics show the enormous increase of life expectancy over the past decades. In consequence, the proportion of older people in our populations is increasing rapidly. Most older people enjoy good mental health and well-being. But there are currently over six million people with dementia in the European Union and it is predicted that this number will double within the next 20 years – so we have to face dementia as a common challenge in our communities. The European Commission’s European initiative on Alzheimer’s disease and other dementias of July 2009 provides a new impetus to address this challenge across Europe. In this paper four key objectives – which I share – are defined: 1. Acting early to diagnose dementia and to promote well-being with age 2. A shared European effort to better understand dementia conditions: improving epidemiological knowledge and coordination of research 3. Supporting national solidarity with regard to dementias: sharing best practices for care of people suffering from dementia 4. Respecting the rights of people with dementias In support of these objectives and proposed actions, practical work on implementation started in February 2010 under the leadership of the French National Authority for Health in form of a joint action called “ALCOVE” (“ALzheimer COoperative Valuation in Europe”). Luxembourg will participate as a partner in this common effort to optimize the care of Alzheimer patients.

Mars di Bartolomeo

In order for common action to be successful, it is important that each country already starts its own projects to face the challenge of a growing elderly population. Luxembourg has taken up the task: as the 2009 Hospital plan was reviewed, six specialised units for elderly people are foreseen to provide qualified care and support for the special needs of these patients. Cooperation with ambulatory services is also promoted. In research, Luxembourg is involved in MemoVie, a 3-year research programme on the prospective evaluation of neuropsychological and biological characteristics of mild cognitive impairment and of associated subclinical health problems, as well as in a study to validate a new therapeutic strategy to prevent neurodegeneration and subsequent impairments in fundamental research is conducted. To conclude I hope that with this conference, we will learn more about interdependencies between dementia, Alzheimer’s disease, well-being in old age and healthy and active ageing. There is real need to develop knowledge about how best to offer older people an adequate place and role in our societies to respond to their expectations and needs. Promoting well-being in older people is essential to strengthen and mobilise the mental capital which Europe needs for a successful future. Last not least I wish to thank Alzheimer Europe and the Association Luxembourg Alzheimer for organising this conference and wish them a successful work in future.

Mars di Bartolomeo Minister for Health Minister for Social Security

Facing dementia together / Luxembourg 2010 Final programme / Foreword

Foreword

On the occasion of its 20th anniversary, I would like to congratulate Alzheimer Europe and take the opportunity to express my gratitude to all its members for having contributed to improving the quality of life of people with dementia and their carers during the past two decades. I am delighted that Luxembourg has been chosen as the venue for the 20th anniversary celebrations, as it has been home to the Alzheimer Europe office since 1996. This provides a good opportunity to show the staff members the recognition they deserve for their excellent work. Thanks to their involvement, national Alzheimer organisations are able to stay informed and involved in European activities and debates. Furthermore, by coordinating projects like EuroCoDe or the Dementia in Europe Yearbook, Alzheimer Europe contributes to the process of establishing European policies on Alzheimer's disease. Today, more than 7 million Europeans suffer from different types of dementia. As dementias do not only affect the person with the condition but also those who care for them, estimations consider that nearby 19 million Europeans are concerned. In 1999, Luxembourg introduced a long-term care insurance in its mandatory social security system. Since then a large scale of services are available to people suffering from dementias and, under certain conditions, the long term care insurance even provides financial support to informal carers and pays their pension contribution insurance. Furthermore, with the financial support of my department, the Luxembourgish Alzheimer organisation runs a range of complementary supports i.e. a 24/24h helpline, training courses for family carers, self-help groups to all the persons affected by dementia; the people with dementia and their families. Despite all these offers, some challenges persist and in particular questions related to the rights of persons with dementia. I am confident that by the end of this year, the preliminary

Marie-Josée Jacobs

work for a national “Alzheimer action plan” will start and that these questions will be tackled. Although the aim of most professional interventions is to protect patients with dementia, some decisions in particular those based on current legal provisions deprive them of certain rights from one day to the next. We should therefore put a special attention on the right of autonomy of people with dementia, their right to live under normal conditions and not underestimate their capacities for decision making, especially at early stages of dementia. In view of the 20th Alzheimer Europe conference on “Facing dementia together” I should like to emphasize that a close partnership with all stakeholders in society is essential. If our common objective is – and I believe it should be – better life conditions and quality of life for the people affected by dementia, we have to build up a new, balanced image of dementia and change thereby the way we see these persons. I am confident that your 20th Alzheimer Europe conference constitutes a further valuable step to attain this goal. Marie-Josée Jacobs Minister for Family and Integration Luxembourg

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My father was a headmaster. Now I teach him his own name every day.

Working to change Alzheimer’s. Alzheimer’s doesn’t just affect the 417,000* people in the UK living with the disease, it touches whole families. As well as working towards a cure, Pfizer is developing new ways to detect and treat the disease early – before it starts to affect lives. Making a real difference to the lives of those affected by Alzheimer’s is a priority to us, that’s why we also work with UK patient groups and charities, as well as the NHS, to support the services they provide for families touched by the disease. See how we’re putting our commitments to work at www.pfizer.co.uk

Working together for a healthier world™ *www.alzheimers.org.uk/factsheet/401 Date of preparation: May 2010 CA809

Facing dementia together / Luxembourg 2010 Final programme

Organisers & Practical Information Sponsors

Time has a different meaning for me now. But I still love to show my old watch off to my grandchildren.

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Final programme / Organisers & Practical Information

Organisers

Host organisations

Organising Committee

The 20th Alzheimer Europe Conference in Luxembourg is organised by:

- Mr. Jean-Marie Desbordes, Association Luxembourg Alzheimer - Ms. Lydie Diederich, Association Luxembourg Alzheimer - Ms. Joëlle Elvinger, Association Luxembourg Alzheimer - Prof. Dr. Dieter Ferring, Université du Luxembourg - Mr. Jean Georges, Alzheimer Europe - Ms. Gwladys Guillory, Alzheimer Europe - Mr. Denis Mancini, Association Luxembourg Alzheimer - Ms. Carmen Sinner, Association Luxembourg Alzheimer - Mr. Alain Tapp, Association Luxembourg Alzheimer

Alzheimer Europe

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

Scientific Committee and People with dementia and their carers Association Luxembourg Alzheimer

45, rue Nicolas Hein L-1721 Luxembourg Tel.: +352-42 16 76 1 Fax: +352-42 16 76 30 [email protected] www.alzheimer.lu in collaboration with Integrative Research Unit: Social and Individual Development (INSIDE)

Université de Luxembourg Faculty of Language and Literature, Humanities, Arts and Educational Sciences Campus Walferdange Route de Diekirch, B.P. 2 L-7220 Walferdange Tel.: +352-46 66 44 9000 [email protected] wwwfr.uni.lu/recherche/flshase/inside and Association Luxembourgeoise de Gérontologie et Gériatrie

Centre de Convalescence Château de Colpach L-8527 Colpach Tel.: +352-26 821 Fax: +352-26 822 240 [email protected]

- Dr. Suzanne Cahill, Dementia Servives Information and Development Centre, Dublin, Ireland - Dr. Inge Cantegreil, Hôpital Broca, Paris, France - Mr. James McKillop, Scottish Dementia Working Group, Glasgow, United Kingdom - Ms. Heike von Lützau-Hohlbein, Deutsche Alzheimer Gesellschaft, Munich, Germany - Ms. Carmen Sinner, Association Luxembourg Alzheimer, Luxembourg Professional carers

- Dr. Rabih Chattah, University of Bologna, Bologna, Italy - Prof. Murna Downs, University of Bradford, Bradford, United Kingdom - Dr. Carine Federspiel, Société medicale luxembourgeoise de Géronto-Gériatrie, Luxembourg, Luxembourg - Prof. Dr. Dieter Ferring, Research Unit INSIDE, Université du Luxembourg, Luxembourg - Ms. Carmen Sinner, Association Luxembourg Alzheimer, Luxembourg - Prof. Päivi Topo, Academy of Finland, Helsinki, Finland - Prof. Dr. Myrra Vernooij-Dassen, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands

Facing dementia together / Luxembourg 2010 Final programme

Practical Information Medical professionals

- Prof. Jean-Pierre Baeyens, International Association of Gerontology and Geriatrics, Oostende, Belgium - Dr. Carine Federspiel, Société médicale luxembourgeoise de Géronto-Gériatrie, Luxembourg, Luxembourg - Prof. Alexander Kurz, Technische Universität München, Munich, Germany - Prof. Celso Pontes, Estudo de Envelhecimento Cerebrale Demência, Oporto, Portugal - Dr. Sigurd Sparr, Hospital of Northern Norway, Tromsø, Norway

Conference language The official language of the conference is English. All plenary sessions will be in English, as well as the majority of all parallel sessions. Translation into German and French will be guaranteed in all plenary sessions and all parallel sessions taking place in the plenary room.

Currency The currency in Luxembourg is the euro (EUR). Credit cards are widely accepted in Luxembourg.

Policy makers

Climate - Mr. António Oliveira Costa, Alzheimer Portugal, Lisbon, Portugal - Ms. Sabine Jansen, Deutsche Alzheimer Gesellschaft, Berlin, Germany - Mr. Andrew Ketteringham, Alzheimer’s Society, London, United Kingdom - Dr. Charles Scerri, Malta Dementia Strategy Group, University of Malta, Msida, Malta

Luxembourg enjoys a temperate climate. The weather is generally pleasant in September and October, but can be unpredictable. You should bring an umbrella and warm clothing.

Electricity The electrical current in Luxembourg is 220 volts (50 Hz). Plugs and sockets are the same as in the other continental countries of the European Union. If your equipment requires different voltage, you will need an electrical transformer.

Insurance Please check the validity of your own insurance. The conference organisers cannot accept liability for personal injuries sustained or loss of/damage to property belonging to conference delegates or accompanying persons.

Conference Venue Luxembourg-Congrès Centre de Conférences Kirchberg 4, place de l’Europe L-1499 Luxembourg

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Final programme

Sponsors

Alzheimer Europe and Association Luxembourg Alzheimer gratefully acknowledge the support they have received for the 20th Alzheimer Europe Conference.

European Commission

The 20th Alzheimer Europe Conference arises from the 2010 Work Plan of Alzheimer Europe which has received funding from the European Union, in the framework of the Health Programme.

Luxembourg Ministry of Health and Luxembourg Ministry of Family and Integration

Gold Sponsor

Pfizer

Silver Sponsors

Elan Fondation Médéric Alzheimer

Other supporters

Alzheimer Europe and Association Luxembourg Alzheimer gratefully acknowledge the support of King Baudouin Foundation which supports 20 people with dementia and their carers from Luxembourg to attend the conference.

Facing dementia together / Luxembourg 2010 Final programme

Programme and Speakers

My son loves taking photos. I just like spending time with my son.

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Coffee break

10.30-11.00

Closing Ceremony

17.30-18.00

with simultaneous translation into German and French

S4. Facing dementia together – The dementia community and policy makers

Coffee break

16.00-17.30

15.30-16.00

in English only

in German

P15. Supporting and involving people with dementia (2)

P14. Screening, diagnosing and treating dementia

P13. Non-pharmacological approaches to the management of dementia

14.00-15.30

Lunch

P11. Rights and ethics

SS2. Special Symposium: PharmaCog: Bringing new SS3. V orstellung der Association Luxembourg hope to patients with Alzheimer’s disease Alzheimer

Lunch

P10. Assistive technologies and design

Coffee break

Saturday, 2 October 2010

13.00-14.00

12.00-13.00

P9. Innovative care services and approaches (2)

S3. Facing dementia together – Doctors and researchers & people with dementia and their carers

09.00-10.30

11.00-12.00

S2. Facing dementia together − Professional carers and people with dementia and their carers

Coffee break

16.00-17.30

15.30-16.00

P7. S upporting and involving people with dementia (1)

P6. Education and training

P5. Nursing home care

Lunch

P3. Perceptions of dementia

14.00-15.30

P2. Relationships, communication and sexuality

Friday, 1 October 2010

Yellow Room

SS1. Special Symposium: Pfizer financed symposium: Oral poster presentations Day-to-day decisions in dementia

Lunch

P1. Innovative care services and approaches (1)

Blue Room

13.00-14.00

12.00-13.00

11.00-12.00

Coffee break

S1. Facing dementia together − People with dementia and their carers

09.00-10-30

10.30-11.00

Opening Ceremony and Keynote lecture

18.00-19.30

Red Room

Thursday, 30 September 2010

P16. National dementia strategies

P12. The international dimension of dementia

P8. Organisation and financing of care

P4. Successful campaigning

Green Room

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Programme at a glance 20th Alzheimer Europe Conference

Final programme / Programme at a glance

1st floor

Ground floor

exchange area

Green Room

Blue Room

Yellow Room

Red Room

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Final programme / Detailed programme

Detailed programme

Thursday, 30 September 2010

P1.3. Marissa Butler (Ireland): Developing palliative care in dementia services – An Irish action research project

18.00-19.00 (Red Room): Opening Ceremony

Opening comments and welcome by - Liane Kadusch-Roth, Chairperson, Association Luxembourg Alzheimer - Maurice O’Connell, Chairperson, Alzheimer Europe Opening addresses by: - Marie-Josée Jacobs, Minister for Family and Integration, Luxembourg - Mars di Bartolomeo, Minister for Health, Luxembourg Andrzej Rys, Director of Public Health, European Commission

19.00-19.30 (Red Room): Keynote address

Jean Georges (Luxembourg): Celebrating 20 years of achievements – Alzheimer Europe

Friday, 1 October 2010 09.00-10.30 (Red Room) Symposium S1: Facing dementia together: People with dementia and their carers

Chairperson: Heike von Lützau-Hohlbein (Germany) S1.1.  James and Maureen McKillop (United Kingdom): Facing dementia as a couple S1.2. Dieter Ferring (Luxembourg): Who will care for me? Trends in family caregiving in European countries S1.3. Gráinne McGettrick (Ireland): Slaying the dementia dragon: Alzheimer organisations responding to stigma and social isolation S1.4.  Julian Hughes (United Kingdom): An ethical framework to support people with dementia and their carers

11.00-12.00 (Red Room) Parallel Session P1: Innovative Care services and approaches (1)

Chairperson: Carmen Sinner (Luxembourg) P1.1. Tracy Gilmour (United Kingdom): Post-diagnostic pilot project P1.2. Clive Evers (United Kingdom): Sight loss and dementia: developing effective services

11.00-12.00 (Blue Room) Parallel Session P2: Relationships, communication and sexuality

Chairperson: Sabine Henry (Belgium) P2.1. Razvan Ioan Trascu (Romania): Communicating with Alzheimer Patients P2.2. Damian Murphy (United Kingdom): Attending to communication difficulties between people with dementia and family carers: A relationship-centred approach P2.3. Anja K. Leist (Luxembourg): Feelings of family caregivers towards the cared-for person with dementia – A micro-analytic approach P2.4. Magda Tsolaki (Greece): Sexual function in dementia and related issues

11.00-12.00 (Yellow Room) Parallel Session P3: Perceptions of dementia

Chairperson: Sirkkaliisa Heimonen (Finland) P3.1. Géraldine Viatour (France): Impact of practice changes of professional caregivers on their social representations of Alzhei­mer’s disease P3.2. Saïda Sakali (Belgium): Dementia-friendly municipalities: How can we transform our towns, villages and neighbourhoods by strengthening the social fabric around people with dementia and their carers? P3.3. Maddalena Riva (Italy): Knowledge and attitudes about Alzhei­ mer’s disease in the lay public: influence of caregiving experience and other socio-demographic factors in an Italian sample

11.00-12.00 (Green Room) Parallel Session P4: Sucessful campaigning

Chairperson: Sabine Jansen (Germany) P4.1. Jessica Federer (Germany): Successful campaigning: collaborations with industry P4.2. Michael Hagedorn (Germany): Konfetti im Kopf – a photographic awareness campaign P4.3. Alice Jarratt (United Kingdom): Policy and pressure: making dementia strategies a reality P4.4. Michael Splaine (USA): Special populations, special policy challenges

Facing dementia together / Luxembourg 2010 Final programme

13.00-14.00 (Blue Room) Special Symposium SS1: Day-to-day decisions on dementia: Discussing challenges and sharing insights with an expert panel

Chairperson: Giuseppe Bruno (Italy) Expert panel from across Europe including healthcare professionals, a carer and a representative from a patient advocacy group. This symposium has been organised and funded by Pfizer Ltd.

13.00-14.00 (Yellow Room) Oral poster presentations OP

Chairperson: Charles Scerri (Malta) OP1. Razvan Ioan Trascu (Romania): Alzheimer diagnostic challenges: Romanian healthcare system flaws OP2. Areti Efthymiou (Greece): Results of a cognitive and physical training programme for people with MCI OP3. Paraskevi Sakka (Greece): Dementia screening and memory enhancing project in a population of urban dwelling elderly people OP4. Sirkkaliisa Heimonen (Finland): A journey of possibilities – A logotherapeutic model of dementia care OP5. Eric Sanchez (France): A nationwide telephone helpline OP6. Michael Splaine (USA): Messages and strategies for public health OP7. Luiza Spiru (Romania): Professional caregiving and workforce training in Romania OP8. Luiza Spiru (Romania): Breakthrough technologies in professional dementia healthcare OP9. Ramona Lucas Carrasco (Spain): Consequences of the lack of policies for people with dementia: A case report from Spain

14.00-15.30 (Red Room) Parallel Session P5: Nursing home care

Chairperson: Maria do Rosário Zincke dos Reis (Portugal) P5.1. Margrét Gústafsdóttir (Iceland): Enhancing nursing students’ understanding of the experience of a person facing dementia by interviewing a close family member of that person P5.2. A.M. van Dijk (Netherlands): The Imagination method; A new approach for caregivers of people with dementia in nursing homes P5.3. Anna Renom (Germany): Criteria to determine appropriateness of hospital admission in nursing home residents with dementia: A systematic review

P5.4. Graínne McGettrick (Ireland): Continuing to care for people with dementia: Irish family carers’ experience of their relative’s transition to a nursing home P5.5. Wolfgang Billen (Luxembourg): Organisational and personal determinants of the use of physical restraints in Luxembourg nursing homes

14.00-15.30 (Blue Room) Parallel Session P6: Education and training

Chairperson: Alicja Sadowska (Poland) P6.1. Carmen Sinner and Mireille Elsen (Luxembourg): A step out – the practical and social importance of training for people with dementia and their caregivers P6.2. Alda Marques (Portugal): Moving beyond training: a psycho­ educational programme for formal caregivers of elderly with dementia P6.3. Judith Mollard (France): Education and training of family caregivers: A major challenge for France Alzheimer P6.4. Béatrice Surber (Switzerland): Improving skills through regular supervision of a group of home carers

14.00-15.30 (Yellow Room) Parallel Session P7: Supporting and involving people with dementia (1)

Chairperson: Antonia Croy (Austria) P7.1. Josine van der Poel (Netherlands): Involving people with dementia in the development of information materials P7.2. David Batchelor and James McKillop (United Kingdom): The physical effects of dementia P7.3. Aude Dion (Belgium): The video blog alzheimercafe.be – Giving a voice and a face to people with dementia P7.4. Elisa Virkola (Finland): The agency of everyday life of people with dementia living alone

14.00-15.30 (Green Room) Parallel Session P8: Organisation and financing of care

Chairperson: Clive Evers (United Kingdom) P8.1. Gwendoline Taché (France): Informal care received by people with dementia aged 75 years and older: empirical evidence from the French National Survey Handicap-Santé Ménages 2008 P8.2. Jean-Claude Leners (Luxembourg): People with dementia and care insurance in Luxembourg – Survey after more than five years

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Final programme / Detailed programme

P8.3. Staffan Karlsson (Sweden): European health and social care and welfare systems for persons with dementia P8.4. Jan de Lepeleire (Belgium): Outcomes COGNOS study – Care for people with cognitive dysfunction – A Belgian national observational study

16.00-17.30 (Red Room) Symposium S2: Facing dementia together – Professional carers and people with dementia and their carers

Chairperson: Carine Federspiel (Luxembourg) S2.1. Iva Holmerová (Czech Republic): Care approaches in Eastern European countries S2.2. Kaisu Pitkälä (Finland): A rehabilitative approach to dementia care S2.3. Christina Kuhn (Germany): End-of-life care for people with dementia – An evaluation of two innovative approaches in Luxembourg S2.4. Dianne Gove (Luxembourg): Ethical implications of assistive technologies in residential care settings

Saturday, 2 October 2010

devoted to people with dementia in a Belgian rural area P9.2. Matthias W. Riepe (Germany): Are quality criteria for memory clinics needed? A statement from the European Memory Clinics Association (EMCA) P9.3. Areti Efthymiou (Greece): Caring for the carer: Project “Life after care” P9.4. Luisa Bartorelli (Italy): The savvy caregiver programme – An intervention on family members of Alzheimer patients

11.00-12.00 (Blue Room) Parallel Session P10: Assistive technologies and design

Chairperson: Luiza Spiru (Romania) P10.1. Lisa van Mierlo (Netherlands): DEMENTELCOACH: Effect of telephone coaching on informal and professional carers of community dwelling people with dementia P10.2. Laura Sorri (Finland): Helping the elderly with memory disorders to orientate in built environment – a field study of a technological system P10.3. Jon Boon (United Kingdom): Designing for dementia

11.00-12.00 (Yellow Room) Parallel Session P11: Rights and ethics

09.00-10.30 (Red Room) Symposium S3: Facing dementia together – Doctors and researchers & people with dementia and their carers

Chairperson: Sigurd Sparr (Norway) S3.1. Maria Isaac (United Kingdom): Bringing new treatments and diagnostic procedures to patients – Understanding the drug development process S3.2. Philippe Amouyel (France): European collaboration on dementia research: the Joint Programming Initiative S3.3. Bengt Winblad (Sweden): New treatments for people with dementia – Current research approaches S3.4. François Blanchard (France): Addressing ethical questions in dementia research

11.00-12.00 (Red Room) Parallel Session P9: Innovative Care services and approaches (2)

Chairperson: Pat Doherty (Ireland) P9.1. Christian Gilles (Belgium): ARDEM: an expanding network

Chairperson: Dianne Gove (Luxembourg) P11.1. Elisabeth Bourkel (Luxembourg): Perceived rights and stigmatisation of people with Alzheimer’s disease P11.2. Henna Nikumaa (Finland): Are people with dementia equal in the Finnish social security system? P11.3. Astrid Schmitz (Germany): Management perspective of a European research project: ethical committee’s approval and fair authorship allocation P11.4. Jan Killeen (United Kingdom): Dementia: autonomy and decision-making – principles into practice

11.00-12.00 (Green Room) P12 Parallel Session P12: The international dimension of dementia

Chairperson: António Oliveira Costa (Portugal) P12.1. Frank J. Schaper (Australia): In Dementia Care – Is Australia the lucky country? P12.2. Marc Wortmann (United Kingdom): Global impact of dementia P12.3. Siew Li Cheung and Kelvin Koh (Singapore): An innovative inpatient rehabilitation ward for persons with dementia in

Facing dementia together / Luxembourg 2010 Final programme

a community hospital in Singapore P12.4. Amir Parsa (USA): Arts engagement programmes for people with dementia and their caregivers

14.00-15.30

13.00-14.00

(Yellow Room) Special Symposium SS3: Vorstellung der “Association Luxembourg Alzheimer” mit Schwerpunkt der Pflegeoase “Beim Goldknapp”

Chairperson: Magda Tsolaki (Greece) P14.1. Patricio García Báez (Spain): Computational intelligence methods for automatic diagnosis of dementia P14.2. Manfredi Ventura (Belgium): A survey of physicians’ perceptions of adherence to oral cholinesterase inhibitor treatment in patients with Alzheimer’s disease P14.3. Eugenia Papalexi (Greece): Memantine in everyday clinical practice: Comparisons of data from observational studies in Greece and in Germany P14.4. Magali Perquin (Luxembourg): MemoVie: Prospective evaluation of neuropsychological and biological characteristics of mild cognitive impairment and of associated subclinical health problems P14.5. Armelle Desplanques-Leperre (France): Increasing the quality of care of behavioural disorders in Alzheimer’s disease and reducing the use of neuroleptics for a better quality of life

Alain Tapp (Luxemburg) und Michèle Halsdorf (Luxemburg)

14.00-15.30

14.00-15.30

(Yellow Room) Parallel Session P15: Supporting and involving people with dementia (2)

(Blue Room) Special Symposium SS2: PharmaCog: Bringing new hope to patients with Alzheimer’s disease

Chairperson: Elaine Irving (United Kingdom) - Elaine Irving (United Kingdom): PharmaCog: Alzheimer’s drug discovery from bench to bedside - Esther Schencker (France): Getting the dose right - Alexandra Auffret (France): Sorting the good from the bad - Elaine Irving (United Kingdom): Towards designing better clinical studies

13.00-14.00

(Red Room) Parallel Session P13: Non-pharmacological approaches to the management of dementia

Chairperson: Paraskevi Sakka (Greece) P13.1. Anne Happo (Finland): Dance and movement as a tool – education in Summer University of Pohjois-Pohjanmaa P13.2. Nomiki Karpathiou (Greece): “The past recaptured” – A personal webpages reminiscence programme P13.3. Ivo Cilesi (Italy): Doll therapy, non-pharmacological treatments for the managament of BPSD (behavioural and psychological symptoms of dementia) in subjects suffering from Alzheimer's dementia P13.4. Katarína Karolová (Slovak Republic): Cognitive training as a non–pharmacological approach in comprehensive care and treatment of patients with Alzheimer’s disease P13.5. Anouk Dufour (Belgium): Home ergotherapy: Supporting the person with Alzheimer’s disease and his/her family

(Blue Room) Parallel Session P14: Screening, diagnosing and treating dementia

Chairperson: Julie Fraser (Luxembourg) P15.1. David L W Buglar (United Kingdom): The influence of consumer involvement on dementia research: A case study of the UK Alzheimer’s Society P15.2. Sabine Jansen (Germany): People with dementia – part of the community P15.3. Sirkkaliisa Heimonen (Finland): Supporting persons with dementia through peer group discussions P15.4. Kristiina Karttunen (Finland): Neuropsychiatric symptoms and quality of life in patients with very mild and mild Alzheimer’s disease

14.00-15.30 (Green Room) Parallel Session P16: National dementia strategies

Chairperson: Annette Dumas (Belgium) P16.1. Maija Juva (Norway): The National Dementia Plan – where are we now? P16.2. Luiza Spiru (Romania): Alzheimer’s disease in Romania: the National Programme for Prevention, Prediction, Personalized

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Final programme / Detailed programme

Treatment and Monitoring of Memory Diseases P16.3. Wendy M. Werkman (Netherlands): Integrated dementia care effective from a clients' point of view P16.4. Charles Scerri (Malta): Societal, pharmacotherapeutic and policy aspects of dementia care in the Maltese islands P16.5. Paraskevi Sakka (Greece): Towards a dementia action plan in Greece

16.00-17.30 (Red Room) Symposium S4: Facing dementia together – The dementia community and policy makers

Chairperson: Maurice O’Connell (Ireland) S4.1. Antoni Montserrat (European Commission): European initiatives in the field of Alzheimer’s disease and other dementias S4.2. Heike von Lützau-Hohlbein (Germany): Dementia as a national priority: An overview of dementia strategies S4.3. Jeannot Krecké (Luxembourg): The care sector as an economic and employment factor S4.4. Gerrit Rauws (Belgium): A societal response to dementia

17.30-18.00 (Red Room) Closing Ceremony

Closing comments and farewell by: - Liane Kadusch-Roth, Association Luxembourg Alzheimer - Chairperson-elect of Alzheimer Europe Presentation and invitation to 21st Alzheimer Europe Conference in Warsaw

Facing dementia together / Luxembourg 2010 Final programme

Social programme

I didn’t realise I’d put salt in my son’s coffee until I saw his face. Oh did I laugh!

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20th Alzheimer Europe Conference 20

Final programme / Social programme

Social programme

Welcome reception – 30 September (19.30-20.30) The welcome reception will take place on Thursday, 30 September 2010 from 19.30 to 20.30 after the opening ceremony in the Conference Centre. Les Gavroches

Held in a friendly and relaxed atmosphere, the welcome reception will be an opportunity to meet other conference delegates, as well as old and new friends. During the reception, you will be entertained by the Luxembourg group “Les Gavroches”, a group of three musicians (singer, guitarist and accordeonist) which will take you on journey back in time and play old Luxembourg and French classics.

The Little Blues Band

Gala dinner – 2 October (19.30-late) The Gala Dinner, celebrating the closing of the 20th Alzheimer Europe conference and awarding all experts and participants for their priceless contribution into making this a successful event, will be organised on 2 October at the Sofitel Europe, Luxembourg. Doors open at 19.30. The sumptuous and spacious glass-roofed Atrium makes an ideal venue for memorable events and will create a unique atmosphere for you to enjoy together with your fellow colleagues. Joins us for this unique event and taste an exquisite cuisine prepared specially for you by Head Chef Mr Giovanni VACCARO. He will charm you with his refined French cuisine with the latest in fusion dishes from around the world.

Sofitel Atrium

The Little Blues Band will accompany your dinner with an acoustic set. Once your dinner is finished, the five person band consisting of Ria Favoreel, Pierre Gelhausen, John Hensel, Virgil Magri and Ron Tuffel will crank up the volume and invite you to dance with the other conference delegates. Hotel Sofitel Luxembourg Europe 6 Rue du Fort Niedergrünewald L-2015 Luxembourg Tel.: +352-43 77 61

Facing dementia together / Luxembourg 2010 Final programme

Keynote and Plenary Speakers

Reading has become really difficult for me. My favourite book has lots of old photos of my town. I recognise a lot of places. Everything looks so different now.

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20th Alzheimer Europe Conference 22

Final programme / Keynote and Plenary Speakers

Keynote and Plenary – Speakers Philippe Amouyel Philippe Amouyel is Professor of Epidemiology and Public Health at the University Hospital of Lille in the North of France. He is in charge of a large academic research unit working on public health and molecular epidemiology of ageing diseases. A part of his research activity is devoted to cardiovascular diseases, understanding the multiple determinants of coronary artery disease and stroke. The other part is focused on the study of determinants, mainly genetic, of neurodegenerative diseases associated with cognitive decline and of Alzheimer’s disease in particular. He develops large epidemiological studies in population to attempt to decode the individual susceptibility to ageing diseases, using molecular techniques (high throughput genomics, transcriptomics, proteomics and bioinformatics…). Last September he published two new susceptibility genes for Alzheimer’s disease that offer new perspective for the understanding of this major threat. Since 2008 he is the CEO of the French National Research Foundation on Alzheimer’s disease and related disorders and chairs the Joint Programming Research Initiative on neurodegeneration and Alzheimer’s disease in particular associating 24 European countries. Dieter Ferring Dieter Ferring is Professor of Developmental Psychology and Psycho­ gerontology at the University of Luxembourg, director of the interdisciplinary research unit INSIDE, and scientific director of the master programme in gerontology. His main research topics include selfregulation and coping with crises and losses; subjective well-being and quality of life in age and old age; intergenerational family relations; conditions of dependency and autonomy in old age, as well as technology and ageing. Dieter Ferring is associate editor of the “GeroPsych – The Journal of Gerontopsychology and Geriatric Psychiatry”, and member of the editorial board of the “European Psychologist” and of the “European Journal of Ageing”. He reviews for several international journals, and is ad-hoc reviewer for the several European Research Foundations. Jean Georges Before joining Alzheimer Europe as its first Executive Director in 1996, Jean Georges had worked as a journalist for the European and International department of the Luxembourg newspaper “Tageblatt” and as a parliamentary researcher for Members of the Luxembourg and European Parliament. As Executive Director of Alzheimer Europe, Jean has been in charge of the various projects of the organisation including the three-year European Commission financed “European Collaboration on Dementia – EuroCoDe” (2006—2008) project which brought together over 30 dementia experts from 20 European countries. He has been liaising with various

Philippe Amouyel

Dieter Ferring

Jean Georges

Dianni Gove

other European organisations and held a number of elected positions such as Secretary General of European Federation of Neurological Associations (2002-2004) or Vice-Chairperson of the European Patients’ Forum (20072008). In 2005, he was appointed by the Council of Ministers and the European Parliament as one of two patient representatives to the Management Board of the European Medicines Agency (2005-2008). Dianne Gove Dianne Gove is Information Officer at Alzheimer Europe. After working in the field of banking and innovation and at the European Commission, she joined Alzheimer Europe in 1996. She has an Honours Degree in Psychology, MAs in Education and Psychoanalysis and is a qualified Analytical Gestalt therapist. Since joining the organisation in 1996, she has been in charge of several projects including a European care manual, recommendations on advance directives, “Lawnet” (an inventory of legislation relating to the rights and protection of people with dementia), a care manual for both carers and people in the early stages of dementia and guidelines on good endof-life care. She is now working on updating the original Lawnet reports, drafting reports for additional countries not involved in the first study and developing a Dementia Research Observatory. For the EuroCoDe project, she was the work package leader of the group responsible for making an inventory of the different social support systems for people with dementia and carers in Europe. Iva Holmerová Iva Holmerová is the Chair of the Czech Alzheimer Society, which she cofounded in 1997. Iva is also the Director of the Centre of Gerontology (since 1992), the President of the Czech Society of Gerontology and Geriatrics (since 1997) and a committee member of the International Association of Gerontology and Geriatrics (IAGG) (on behalf of the CGGS, since 1997). Iva holds professional qualifications in general and geriatric medicine as well as in public health. Her doctoral thesis Ph.D. is in social gerontology and she received the award for Outstanding Contribution to Czech Gerontology. Finally, Iva is the author of many health and social care publications. Julian Hughes Professor Julian C. Hughes is a consultant in old age psychiatry based at North Tyneside General Hospital. He is honorary professor of philosophy of ageing at the Institute for Ageing and Health, Newcastle University. Three books (co-edited, edited or co-authored) appeared in 2006: Dementia: Mind, Meaning, and the Person (OUP), Palliative Care in Severe Dementia (Quay Books) and Ethical Issues in Dementia Care: Making Difficult Decisions (Jessica Kingsley). A further co-edited volume (with Professors Mari

Iva Holmerovà

Julian Hughes

Facing dementia together / Luxembourg 2010 Final programme

Lloyd-Williams and Greg Sachs) recently appeared: Supportive Care for the Person with Dementia (2010, OUP). He was a special adviser on palliative care and ethical issues at the end of life to the guideline development group, which led to the NICE-SCIE guideline on dementia in 2006; and more recently has served on the working party of the Nuffield Council on Bioethics, which produced Dementia: Ethical Issues in October 2009. Maria Isaac Dr. Maria Isaac is a member of the Scientific Advice team at the European Medicines Agency (EMA) and has over 20 years of international experience in academic, clinical and regulatory fields. Her career has focused on novel and innovative pharmacological, economic and clinical treatment of mental illness. At EMA, she has developed and maintained her interest in the clinical impact of innovative and advanced treatments with particular emphasis on dementia, biotech and stem cell therapies, not only for mental and neurological illness, though disorders of the nervous system remain her passion. She also had an active role in co-ordinating several international meetings and collaborations. Before EMA, Maria was a Consultant Psychiatrist at the Maudsley Hospital in the UK National Health Service for more than 5 years, gaining a deep insight into the impact of mental illness on patients, their families and the wider society. As an honorary senior lecturer in psychiatry at the Institute of Psychiatry (a position she continues to hold), she built a clinical research programme and was the Co-Director of the Psychopharmacology Evaluation Unit at University Hospital Lewisham, a Unit that quickly achieved international recognition for its approach to novel pharmacological treatments of depression and the psychiatric aspects of chronic pain. A native of Spain, Maria qualified in medicine at the University of the Basque Country and obtained a Master’s degree from Temple University Philadelphia (USA). She has wide experience in molecular biology research, both in the USA (University of Pennsylvania) and UK. She trained as Psychiatrist at the Maudsley (UK). She obtained her PhD in psychopharmacology in record time at the University of London (Guy’s Hospital 1998), collecting along the way a postgraduate diploma in economics from Birkbeck College, also in the University of London. She is fluent in Spanish and English and has a good working knowledge of French and Portuguese. Jeannot Krecké After having obtained his final school-leaving diploma in Luxembourg City, Jeannot Krecké started his university studies at the Université libre de Bruxelles (ULB) in 1969, from where he obtained a degree in physical and sports education. He decided in 1983 to change professional direction. His interests led him to retrain in economics, accounting and taxation. He followed various courses, in particular in the United States. Following the legislative elections of 13 June 2004, Jeannot Krecké was appointed Minister of the Economy and Foreign Trade, Minister of Sport on 31 July 2004. Upon the return of the coalition government formed by the Christian Social Party (CSV) and the Luxembourg Socialist Workers’ Party (LSAP) as a result

Maria Isaac

Jeannot Krecké

of the legislative elections of 7 June 2009, Jeannot Krecké retained the portfolio of Minister of the Economy and Foreign Trade on 23 July 2009. As of July 2004, Jeannot Krecké represents the Luxembourg government at the Council of Ministers of the European Union in the Economic and Financial Affairs configuration, in the Internal Market and Industry sections of its Competitiveness configuration, as well as in the Energy section of its Transport, Telecommunications and Energy configuration. He was also a member of the Eurogroup from July 2004 to June 2009. Compelled by family reasons, Jeannot Krecké is involved in the fight against Alzheimer’s and in 1987 co-founded the Alzheimer Association Luxembourg, which he chaired until 1997, prior to leading the Alzheimer Foundation in Luxembourg. His efforts mobilised energies on a European level and he chaired Alzheimer Europe from 1996 to 2001. The association’s European coordination office was established in the Grand Duchy at his instigation. Christina Kuhn Christina Kuhn (Cultural Studies, Educational Science) is researcher and educator at Demenz Support Stuttgart, a German DSDC. Since 2006 a major focus of her work has been on so-called «care oases», a new concept of care for people in their late stages of dementia. Together with Anja Rutenkröger (also Demenz Support Stuttgart) she completed the first evaluation of an oasis in Germany (Evaluation Holle, financed by the Ministry of Social Affairs, Women, Family and Health in Lower Saxony) and, just recently, of two newly established oases in Luxembourg. The Demenz Support “Oasis Team” has joined forces with other scientists and researchers in a Work Group dedicated to the scientific assessment of this new care setting. Heike von Lützau-Hohlbein Heike von Lützau-Hohlbein became involved in the Alzheimer movement because of dementia in her family, first her mother and then her mother-inlaw were diagnosed. She has been contributing to the Deutsche Alzhei­mer Gesellschaft (the national Alzheimer Association of Germany) since 1990, the first 10 years as treasurer, since 2001 as honorary chairperson. Since 2004 she contributes to the board of Alzheimer Europe, since 2006 as Honorary Treasurer. She is a computer expert and works in the field of consulting in the computer business. She is married and lives in Munich, Germany. Gráinne McGettrick Gráinne joined the Alzheimer Society of Ireland seven years ago and is responsible for the policy and research agenda which feed directly into the public advocacy work of the organisation. She previously worked in a variety of organisations in the community and voluntary sector and has significant experience of working on rights based agendas for marginalised and disadvantaged people. She contributes as a guest lecturer on undergraduate social policy courses and is published in the area of independent living for disabled people. Gráinne holds a Bachelor of Social Science degree from University College Dublin and a Master's degree in Social Policy.

Christina Kuhn

Heike von Lützbau-Hohlbein

Gráinne McGettrick

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20th Alzheimer Europe Conference 24

Final programme / Keynote and Plenary Speakers

James and Maureen McKillop James and Maureen have been married for thirty seven years, not all happily. They had four children and family life was normal until James started to behave oddly as he approached his mid fifties. He had all sorts of difficulties with work, family life and driving and the frustrations he felt, manifested into aggressive behaviour. This led to all sorts of tensions and exacerbated to the point where Maureen and the children did not speak to him and indeed were planning to leave him and seek a new life elsewhere. Life was very unhappy all around, for them all. Things changed when James was diagnosed with dementia and received treatment and good quality support. James, while accepting the diagnosis immediately, nevertheless only started to come to terms with his illness after eighteen months. It opened up a new world for him. He met up with other people with dementia and with Heather Wilkinson was instru­ mental in setting up the Scottish Dementia Working Group, about which you will hear more, later in the Conference. Today life is as normal as it can be when dementia stalks the house. Maureen, realising James was ill, did not leave as planned. The children started to speak to their father again. There is now a good atmosphere in the home and they both enjoy life to the full. There are still ups and downs but life goes on. Antoni Montserrat Moliner Antoni Montserrat Moliner (born in Barcelona) works at the Directorate of Public Health in the European Commission. He is policy officer for rare diseases, neurological and neurodevelopmental disorders, health surveys and management of the European Health Information System. He has been working at the European Commission since 1986 after studying Economy and Statistics at the University of Barcelona where he specialised in health information systems. Kaisu Pitkälä Kaisu Pitkälä, MD, PhD, is working as a professor at the university of Helsinki and as a chief physician at the Helsinki university central hospital. She is a specialist of geriatrics, general internal medicine and family medicine. She has been involved in several professional appointments in the field of geriatrics: she has been the president of the Finnish Geriatrics Society, vice president of the Finnish Gerontological Society and vice president of the European Academy for Medicine of Ageing Society. She is the board member of the Finnish Alzheimer Research Society. Her main research interests are in geriatrics, particularly comprehensive preventive or rehabilitative approaches among frail older people. She has conducted nine randomized controlled trials examining effectiveness of various comprehensive interventions on frail older people: dementia, delirium, loneliness, malnutrition, disability, and cardiovascular risk factors. In the field of dementia she has investigated several preventive and rehabilitative approaches. Comprehensive geriatric assessment and tailored treatment proved to be effective in improving cognition and quality-of-life among patients suffering from

James and Maureen McKillop

Antoni Montserrat Moliner

Kaisu Pitkälä

Gerrit Rauws

delirium. She conducted a trial among lonely older people showing that socially stimulating activities may improve their cognition. In addition, a case coordinator and tailored treatment for dementia couples was shown to be effective in postponing institutionalisation of patients with dementia. At the moment she is conducting a large randomised trial examining effectiveness of intense, long-lasting physical exercise among homedwelling Alzheimer’s patients. Gerrit Rauws Gerrit Rauws is director at the King Baudouin Foundation. He manages the Foundation's programme on health. He also coordinates the European projects of the Foundation and is responsible for the Balkans. Mr. Rauws is member of the board of the European Policy Centre, a Brussels based European think tank. From 1984 to 1989 he worked as a researcher at the Catholic University of Louvain, where he received a Ph.D. in Physical Geography. Bengt Winblad Professor Bengt Winblad, MD, PhD has been involved in the field of dementia research for many years. He took his PhD in 1975 at the University of Umeå, Sweden, where he became a Docent in 1977 and Professor of Geriatric Medicine and Chief Physician in 1982. Bengt Winblad has since been a guest professor at the Department of Psychiatry in Frankfurt and honorary professor at Beijing University, Wuhan University and Shanghai University in China. Currently, he is working in Stockholm, Sweden as Professor of Geriatric Medicine at the Karolinska Institutet and is Chief Physician at Karolinska University in Huddinge. Professor Winblad has been involved in numerous professional appointments and university activities. These have included being a member of the Advisory Committee for the Medical Research Council. He is co-chairing the European Alzheimer Disease Consortium (EADC) and presently chairing the Medical Scientific Advisory Panel of the Alzheimer Disease International (ADI). He is also a member of the Nobel Assembly for the Prize of Medicine and Physiology at the Karolinska Institutet. Professor Winblad is the Head of the KI-Alzheimer Disease Research Center in Huddinge including KASPAC (KI Dainippon Sumitomo Alzheimer Center), as well as the Director of the Swedish Brain Power research network. Bengt Winblad’s research interests focus on the epidemiology, genetics and treatment of dementia conditions, especially Alzheimer’s disease. He has been presented with a number of awards for his contribution to this research area, which have included the Swedish Society of Medicine Alzhei­mer Award, the Royal Swedish Academy of Medical Sciences Award, the Alois Alzheimer Award, the Swedish Society of Medicine Award and the IPA Recognition Award for Service to the Field of Psychogeriatrics. He has taken the initiative regarding pharmaceutical treatment (memantine and later donepezil) of patients with severe Alzheimer’s disease. Professor Winblad has been a tutor for more than 150 PhD dissertations and has published more than 800 original publications in the field of gerontology/geriatrics/dementia research.

Bengt Winblad

Facing dementia together / Luxembourg 2010 Final programme

Abstracts

Now and again, my grandmother forgets my name. She always smiles when I visit and I can tell that she is happy to see me.

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20th Alzheimer Europe Conference 26

Abstracts

Abstracts Symposia presentations

closing, it will give an overview of factors at the individual as well as the social and sociopolitical level that may facilitate or aggravate the task of caring for a family member.

Friday, 1 October: 09.00-10.30 (Red Room) Facing dementia together – People with dementia and their carers

S1.3. Slaying the Dementia Dragon: Alzheimer organisations responding to stigma and social isolation

S1.1. Facing dementia as a couple

Gráinne McGettrick, The Alzheimer Society of Ireland, Ireland, [email protected]

James and Maureen McKillop, Scottish Dementia Working Group, United Kingdom, [email protected] Maureen has her views on James’s abilities to live life with dementia. James, who has dementia, has his, and they rarely coincide. They hope the presentation will give delegates some insight into the every­day events which can cause problems for both of them. They do not seek to give solutions as they believe people can best manage their lives themselves, with a bit of give and take. Couples will have their own life experiences and woven into the mixture will be where they live, children, friends, workmates, social contacts and neighbourhood (e.g. country, islands and towns). They will realise what works for them or may not work for someone in another area. We are all individuals. Children will have known their parents all their lives and likewise will know what made them the person they are and how to support them to continue to be that person and stay at home as long as possible. They hope that authorities appreciate that people with dementia and their carers have distinct and separate needs.

Mark the dates! 21st Alzheimer Europe Conference European Solidarity Warsaw 6-8 October 2011 S1.2. Who cares for me? – Trends in family caregiving in European countries

Dieter Ferring, INSIDE, Université de Luxembourg, Luxembourg, [email protected] Responsibility of caring in the case of sickness or disability has traditionally been assigned to close family members although (or because) this may become an enormous emotional and physical strain for the caregiver and his or her family system. The present paper addresses three issues within this context: First, it will outline trends in family caregiving in several European countries by investigating the willingness to support a family member in case of sickness or disability out of differing generational perspectives. Second, it will illustrate the psychosocial situation of family caregivers by referring to indicators of emotional and physical strain. Third and

Stigma, regardless of its origins, creates fear, shame, social isolation, discrimination and perceptions of negativity. The stigma associated with dementia has significant impact on the way people with dementia live their lives. Stigma assigns the person with dementia to a "new social group" associated with devaluation, mistreatment, social exclusion and loss of status. (Alzheimer’s Society, 2008). In order to reduce the stigma associated with dementia and its consequences, dementia needs to be "normalised" and seen as part of everyday life. (Nuffield Council on Bioethics, 2009). So how can the stigma associated with dementia be addressed? What role do Alzheimer organisations play in addressing stigma in dementia? There is a moral imperative on us as Alzheimer organisations to take action to tackle stigma. We have to move the dementia agenda into the socio-political and economic arena and create a dementia discourse that is not just medically led. Alzheimer organisations need to enable rights-based principles to emerge in the dementia landscape providing a right to a diagnosis, a right to services and a right to be part of the mainstream community in which they live. There must be solidarity with the person with dementia and solidarity in the Alzheimer movement to address this issue. We must grow the grassroots movement, learn from people with dementia about the lived experiences and most importantly support the voice of the person to be central to dementia policy and services. Richard Taylor, a person with dementia, speaking at the Alzheimer Disease International conference in 2009 says “For better or for worse, the world depends on the people seated in this room to make it right for people living with dementia … let us in! Affirm our worth by partnering with us”. (Taylor, 2009) Alzheimer organisations are key agents of change. They can provide the thought leadership, create the space to enable the debate to happen, demolish the current understanding and reconstruct new meanings associated with dementia. Enabling the voice of the person with dementia is core to the addressing stigma and a key way in which Alzheimer organisations can mobilise a meaningful and sustainable response. Creating awareness and education are important to addressing stigma and the associated social isolation but there is a need to move to a new social order where dementia is seen as part of the norm. A social model of disability approach is being suggested as a potential framework to better understand dementia and challenge stigma in dementia (Gilliard et al., 2005). It shifts the focus away from the individual person to looking at how societal structures and societal responses create the stigmatisation.

Facing dementia together / Luxembourg 2010 Final programme

The "stigma of dementia" resides not with the individual but in the broader socio-economic, attitudinal and architectural environments. Therefore, to address the issue stigma, Alzheimer organisations need to tackle these various barriers. This is certainly a challenge for all Alzheimer organisations and the Alzheimer movement in the next decade. We can no longer have dementia occupying “a dark place still”. (Nolan, 2006) Bibliography • Alzheimer’s Society (2008) Out of the Shadows, London: Alzheimer’s Society •G  illiard et al. (2005) Dementia care in England and the Social Model of Disability Dementia: the international journal of social research and practice 4(4) 571-586 •N  olan, L. (2006) Perceptions of Stigma in Dementia: An Exploratory Study, Dublin: The Alzheimer Society of Ireland • Nuffied Council on Bioethics (2009) Dementia: Ethical Issues, London, Nuffield Council on Bioethics • T aylor, R. (2009) What’s it like to live with Alzheimer’s disease? Presentation to the Alzheimer’s Disease

S1.4. An ethical framework to support people with dementia and their carers

Julian Hughes, Consultant in Old Age Psychiatry and Honorary Professor of Philosophy of Ageing – Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, Newcastle University, UK, [email protected] The ethical issues that arise in the context of care for people with dementia are everyday; they especially affect family carers. In this talk I shall present and reflect upon the report produced by the Nuffield Council on Bioethics entitled ‘Dementia: Ethical Issues’, which appeared in October 2009. The report provided a framework for dealing with ethical dilemmas. I shall present this and then show how the framework can be used to approach a variety of difficult decisions that might occur in the course of looking after a person with dementia. The issues include the central difficulty of having to make decisions for other people who are no longer able to make decisions for themselves. There are then particular dilemmas ranging from telling someone the diagnosis to confidentiality to endof-life decisions. Of central importance here will be the notions of personhood and solidarity. There is also the issue of research and the lack of equity in terms of money spent on dementia research compared to the amounts spent on other conditions. In short, we need a revolution at every level – personal, regional, national – in order to respond to the moral imperative to improve care for people with dementia and support for their families.

Friday, 1 October 2010: 16.00-17.30 (Red Room) Facing dementia together: Professional carers and people with dementia and their carers S2.1. Care approaches in Eastern European countries

Iva Holmerová, Czech Alzheimer Society, Czech Republic, [email protected] Countries of Central and Eastern Europe, including the Czech Republic, have for many decades been part of a different system i.e. different

from the other parts of Europe. These states were called socialist or people's states but many policies were not of and for the people. It is now more than 20 years since the political changes that opened the way for our countries to reintegrate into Europe. Some countries of the former socialist block, including the Czech Republic, became members of the European Union. Reforms of health care systems are different in different countries but in all of them, the level of acute medical care has improved. Also, systems of social care have changed and many innovative services have been introduced. There are important diferences between EU countries and important common features of their development. The number of people with dementia is rapidly increasing. However, health and social care systems often do not respond adequately either to their needs or to needs of their caregivers. There are many systemic and local obstacles to the provision of care, including both health and social care. However, there are also many innovative practices aimed at improving care. In general, EU governments should improve the care of the chronically sick, including people with dementia and develop their systems of community care. National Alzheimer’s disease strategies should play a leading role in this development. S2.2. A rehabilitative approach to dementia care

Kaisu Pitkälä, University of Helsinki and Helsinki University Central Hospital, Finland, [email protected] Dementia and Alzheimer’s disease (AD) have harmful consequences on patients’ cognitive and physical functioning. AD patients suffer often from physical symptoms such as weight loss, as well as behavioural and psychological symptoms (BPSD). AD is a disease of the whole family affecting caregiver’s quality-of-life, burden, stress, and economical situation. Thus, the targets of dementia rehabilitation are multiple. Even in case of dementia rehabilitation may be preventive, maintaining or restoring. There are several trials showing evidence that physical exercise, cognitive training and socially activating group rehabilitation have favorable effects on older people’s cognitive functioning. Thus, they may have preventive effects on dementia. Among patients with dementia physical exercise may have favorable effects on behavioural and psychological symptoms of dementia (BPSD), especially on depression, on patients' cognition and caregivers’ quality of life (QOL). Physical exercise has effectiveness also on mobility and physical functioning. The exercise programme should be intensive and long-lasting to show its effectiveness on functioning. However, most of these trials investigating the effects of physical exercise on dementia patients have been conducted among institutionalised older people. Thus, the target group is not purely dementia patients. In addition, we do not know whether physical exercise postpones institutional care among home-dwelling patients with dementia. The most consistent and strongest evidence of effectiveness of

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20th Alzheimer Europe Conference 28

Abstracts

rehabilitative approach in dementia is the comprehensive care of a case manager. There are randomised trials from several countries and contexts showing that using an expert in dementia care and in service system as a case manager postpones institutional care of dementia patients and improves caregivers’ QOL. The elements of effective case manager care include family-centered approach, resource-oriented work, coordinated care with tailored treatments, and often geriatricians’ involvement. The case manager should have good communication skills with ability to support caregivers’ self-management and problem-solving skills and autonomy of the families. The evidence-base of rehabilitative approach to dementia care will be opened up in this presentation.

to the use of assistive technologies in the context of recreation, interaction and well-being, expanding on several issues such as autonomy, freedom, safety, stigmatization, dignity and privacy, as well as considering some of the ethical issues faced by healthcare professionals.

S2.3. End-of-life care for people with dementia – an evaluation of two innovative approaches in Luxembourg

A number of medicines have been authorised in Europe for the treatment of Alzheimer’s disease or other forms of dementia. Since the review of the pharmaceutical legislation in 2004, it has become mandatory for all future drugs in the field of neurodegenerative diseases to be authorised through the centralised procedure by the European Medicines Agency (EMA).

Christina Kuhn, M.A., Demenz Support Stuttgart GmbH, Germany, [email protected] Due to impairments both in terms of mobility and verbal skills, people in far advanced stages of dementia may heavily depend on others for their well-being. So-called oases are care settings designed for this particular group of persons and predominantly occupied by them. In such an oasis, the physical presence of one staff member is warranted throughout the day. This enables formal carers to immediately respond to inhabitants’ needs, adjust the tasks of caring to the cared-for person’s rhythm and support adequate symptom control and symptom abatement. In the context of daily care, oasis inhabitants are regularly supplied with sensory stimulation. Demenz Support Stuttgart has carried out an evaluation of two care oases in Luxembourg. This presentation provides an overview of the study results and discusses the preconditions and constraints tied to this new care setting’s successful implementation. S2.4. Ethical implications of assistive technologies in care settings

Dianne Gove, Alzheimer Europe, Luxembourg, [email protected] Dianne Gove will talk about the ethical issues linked to the use of assistive technology in residential care settings based on the work of the working group on assistive technology which was set up in the framework of the Dementia Ethics Network. First, she will briefly explain what assistive technology is and provide background information on ethics and the main ethical principles which were considered in relation to the ethical use of assistive technologies for people with dementia in residential care. She will then concentrate on ethical issues linked to the use of tracking and surveillance devices or systems and those linked

Saturday, 2 October 2010: 09.00-10.30 (Red Room) Facing dementia together: Doctors and researchers & people with dementia and their carers S3.1. Bringing new treatments and diagnostic procedures to patients – Understanding the drug development process

Maria Isaac, European Medicines Agency, United Kingdom

In her presentation, Francesca Cerreta will give an overview of the lengthy development process of new medicines with particular attention to the European system for the approval of new medicines. She will present some of the highlights of the current EMA guideline on medicinal products for the treatment of Alzheimer’s disease and other dementias and identify some of the challenges identified by the Agency with regard to the diagnostic criteria to be used and the assessment of therapeutic efficacy. S3.2. European collaboration on dementia research: the Joint Programming Initiative

Philippe Amouyel, France, MD, PhD, CEO French National Foundation on Alzheimer’s disease and related disorders, France, [email protected] Today in Europe, only about 5% of the total public funding of research is common to European countries through the 7th Framework Programme for Research and Technological Development, and about 10% to support intergovernmental schemes or organisations. Conversely, 85% of research budgets are spent on national programmes exclusively. European research is perceived to be especially fragmented and less efficient than other major countries. One research field, which is amongst the most affected this high degree of fragmentation and lack of coordination, is dementia and Alzheimer’s disease. How could we, as European States, build a new way of efficient collaboration to tackle such a major medical, societal and economic challenge? What resources could we mobilise despite the deep financial and economic crisis currently affecting public budgets of all European countries?

Facing dementia together / Luxembourg 2010 Final programme

To provide a method allowing this calculated sharing to be organised, a communication to the European Parliament, the Council, the European Economic and Social Committee and the Committee of Regions was published in July 2008 by the Commission introducing a new concept of collaboration among owners of national research programmes: this is Joint Programming. It can be defined as “a process in which Member States define a common vision and a strategic research agenda, in order to address a major societal challenge for which the scale and the scope of their national programmes alone may not reach adequate proportions”. Participation of Member States and Framework Programme Associated Countries in such a process is carried out “on a voluntary basis and according to the principles of variable geometry and open access”. Joint Programming is neither another programme, nor any new tool to add to the extensive tool box of the existing national, intergovernmental or Framework Programmes. The focus of Joint Programming is not on spending the money, but about assigning the money. In a programming cycle, implementation follows and results from strategic steps which include horizon scanning, scenarios and impact assessments, budget arbitrations, prioritisation, evaluations, criteria and indicator setting. Joint Programming intends to cover those steps but in a specific configuration of countries willing to go together for the same ambitious objective. Joint Programming addresses the accountability of governments to stakeholders in pooling research efforts to address common societal issues in Europe in the most efficient way. Today 23 countries (Albania, Belgium, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxemburg, the Netherlands, Norway, Poland, Portugal, Slovak Republic, Slovenia, Spain, Sweden, Switzerland, Turkey and the United Kingdom) have joined the JPND initiative. Beside the management board of the initiative, a scientific advisory board has been identified that will prepare the SRA. The SAB has identified priorities that may be launched as soon as possible, already. All aspects of research are covered: basic, clinic and care and health service researches. The ultimate goal of all this work is to lead to new initiatives around research excellence in neurodegenerative diseases and Alzheimer’s in particular, intended to offer a competitive and attractive image of European research for the greatest benefit of the patients and their families. S3.3. New treatments for people with dementia – Current research approaches

Bengt Winblad, Karolinska Institutet Alzheimer Disease Research Center, Huddinge, Sweden Alzheimer's disease (AD) is the most common cause of dementia in advanced age. Currently available medications improve AD symptoms, and development of disease-modifying drugs is a very active area of research, which includes cholinergic, antiamyloid compounds, drugs targeting tau-protein or mitochondria, neuro-

trophins and other therapeutic approaches. The amyloid cascade hypothesis dominates current drug development strategies, but whether AD is more pathognomonic than pathogenetic is not yet clear, and so is the therapeutic role of AD removal. Identification of effective disease-modifying drugs will benefit from understanding the interplay between mechanisms causing neurodegeneration in AD. Combined therapy could be a more effective strategy to halt AD progression. Solving methodological problems in clinical trials on AD – including use of standardized diagnostic criteria able to identify homogeneous group of patients, appropriate treatment duration and measures of disease-modifying effects – will help finding a cure for AD. The lecture will summarize the main findings for new, and less new drugs with novel therapeutic use in AD, focusing mainly on compounds in the human testing phase. S3.4. Addressing ethical questions in dementia research

François Blanchard, MD, PhD1, 2 ,3, Stéphane Sanchez 1 ,2, Interne 1 Service de Médecine Interne et Gériatrie, CHU de Reims, Hôpital Maison Blanche, 45 rue Cognacq Jay, F-51092 REIMS Cedex, [email protected], [email protected] 2 EA 3797 “Santé Publique, Vieillissement, Qualité de Vie et Réadaptation des Sujets Fragiles”, Faculté de Médecine, Université de Reims Champagne-Ardenne, 51 rue Cognacq Jay, F-51095 REIMS Cedex 3 Association Francophone des Droits de l’Homme Agé (A.F.D.H.A.) Researchers in the field of dementia have to cover several areas. The four main areas are the onset of the disease and its limits, the consequences of the disease, treatment and prevention. Neuroscience, epidemiology, clinical research, psychology, sociology and public health are all relevant. Each of the sciences has its own way of dealing with dementia but all researchers must follow the ethical requirements and usual rules of good conduct for research. • Research must be prepared and carried out in the framework of clearly defined programmes in which all partners are included from the beginning. • Benefit to patients must be the first aim for the research programme. • Transparency at every step of the process for all partners is required (financial aspects, the executive part including data collection and analysis, publication of the results including negative results). • Informed consent of the patient and/or of his/her representatives must be obtained. • Good and appropriate methods must be adopted in order to assure the quality of results. All research programmes, whatever their nature, must have received approval from an ethics committee and this committee must be knowledgeable about Alzheimer’s disease. However, cognitive impairment and decline of the capacity of judgement make specific ethical reflection about research necessary.

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The diagnosis must have been disclosed before the person is invited to take part in the study. Clear and simple information about the research programme must be provided. Informed consent can be obtained at a more severe stage of the illness than is usually believed. The patient should be the main person consulted. This takes time and it may be necessary to repeat information several times and also to check the person’s level of understanding. Decision making tools would be useful. For practical and ethical reasons, the same information must be given to family carers and their consent is also needed. Advance directives for research can be helpful. This can be proposed to the person at the time of disclosure of the diagnosis when s/he still has sufficient capacity to consent. A very strict application of the principle of autonomy, as being something linked to full consciousness, could block the possibility of research on patients with severe dementia who cannot give clear informed consent. But this condemns the development of research for those patients. On the other hand, the principle of solidarity encourages the development of research for the benefit of this population. We need progress in knowledge and in the care of these very disadvantaged and penalised patients. Very often patients and their families want to participate in research. Their participation is a way to provide a kind of service for others. Recognition of their contribution to future advances in knowledge and in the care of people with their own condition may help them to maintain a link with other people in the community.

Saturday, 2 October 2010: 16.00-17.30 (Red Room) Facing dementia together: The dementia community and policy makers S4.1. European initiatives in the field of Alzheimer’s disease

Antoni Montserrat Moliner, Policy Officer for Rare and Neuro­ developmental Diseases, Directorate C “Public Health and Risk Assessment” Unit C-2 , European Commission The European Commission adopted on 22 July 2009 a proposal for a Council Recommendation on measures to combat neuro­ degenerative diseases, in particular Alzheimer’s, through Joint Programming of research activities and the Commission Communication COM(2009) 380/4 to the European Parliament and the Council on a European initiative on Alzheimer’s disease and other dementias. To implement the actions scheduled in Commission Communication, the Joint Action “ALzheimer COoperative Valuation in Europe” (ALCOVE), has been launched under the Work Plan 2010 for the implementation of the Second Health Programme Tin order to map the existing and emerging good practices related to treatment (including early detection) and care for persons suffering from Alzheimer’s disease and other forms of dementia and to improve the dissemination and application of such practices. This Joint Ac-

tion between the Commission and Member States is led by the Haute Autorité de Santé (France), and intends to improve knowledge and to formulate recommendations in four specific fields of activities, in order to facilitate policy and health care decision making in European countries: (1) Improvement of epidemiological data on AD and other dementias; (2) Improvement of prevention and diagnosis, particularly early diagnosis; (3) Improvement of existing practices of care, both medical and social care and of practices in training; and (4) Improvement of consent and use of the advance declarations of will as well as practices in assessing competence of elderly people with cognitive impairments. The European Commission will be supporting the work of the Joint Action an EU contribution of close to € 0.7 million. The initially proposed Council Recommendation was finally reconverted in a Commission initiative adopted on 15 April 2010 as a wide Research initiative to tackle neurodegenerative diseases such as Alzheimer’s and Parkinson’s disease. This is the first of the new European Union Joint Programming initiatives. To achieve this goal, 24 European countries, sharing a common vision, have decided to work together in an unprecedented collaborative initiative in research which is seeking to align their scientific competencies, medical strengths and social approaches to tackle the challenge. The European Commission will be supporting the work of the initiative through a coordinating action with an EU contribution of close to € 2 million. Under the initiative of the European Parliament Interest Group on Carers DG EMPL is implementing the December 2009 Council conclusions, which call for a European action programme on healthy and dignified ageing (as a result of the September Swedish presidency conference on that topic). Carers and their issues will certainly feature in this action programme; the need for better dialogue and cooperation between professional and informal care providers will be another important focus. The European Social Fund provides funding for training; training of carers would certainly be considered part of this. Current discussions are ongoing on designating 2012 as the European Year on Active Ageing and Solidarity between the Generations. The PharmaCOG (Prediction of Cognitive properties of new drug candidates for neurodegenerative diseases in early clinical development) project, co-coordinated by the Université de la Méditerranée (Marseille, France), will create a new and unique partnership between the European Commission and the EFPIA (European Federation of Pharmaceutical Industries and Associations). With a co-founding of € 9M by the Innovative Medicines Initiative of the European Union and € 13M by the EFPIA partners, it is the most ambitious project tackling Alzheimer’s disease ever funded at European level in order to validate tools necessary to streamline Alzheimer’s disease drug discovery and accelerate effective medicine to patients. The Commission will also launch a very important initiative in the context of the European Year of Active Ageing 2012 consisting in an

Facing dementia together / Luxembourg 2010 Final programme

Active and Healthy Ageing Innovation Partnership with the strategic objective to maintain the rapidly ageing European population healthy, active and independent thus contributing to the objectives of growth as outlined in the Europe 2020. S4.2. Dementia as a national priority: An overview of dementia strategies

Heike von Lützau-Hohlbein, Deutsche Alzheimer Gesellschaft, Germany, [email protected] At its Annual General Meeting in 2006, Alzheimer Europe and its national member organisations unanimously adopted the Paris Declaration on the political priorities of the European Alzheimer movement. As its first priority, Alzheimer Europe called upon the European Union, the World Health Organisation and national governments to recognise Alzheimer’s disease as a major public health issue and develop European and international programmes as well as national action plans to adequately respond to the challenges posed by the growing numbers of people with dementia. In her presentation, Heike von Lützau-Hohlbein will consider the efforts undertaken in a number of European countries towards the establishment of such national dementia strategies or Alzheimer plans. Furthermore, she will compare how far countries have progressed in the implementation of the key priorities of Alzheimer Europe’s Paris Declaration. As a former carer of her mother and mother-in-law who had dementia, she will provide a very personal evaluation of how the policies of dementia strategies can affect people with dementia and their carers. S4.3. The care sector as an economic and employment factor

Jeannot Krecké, Minister for the Economy and Foreign Trade, Luxembourg The number of studies on the economic cost of dementia to our societies is significant. The recent project “European Collaboration on Dementia – EuroCoDe” financed by the European Commission and coordinated by Alzheimer Europe estimates the overall cost of illness in Europe (EU-27) for people with Alzheimer’s disease and other forms of dementia at EUR 160.3 billion (i.e. EUR 71.7 billion for direct costs and EUR 88.6 billion for informal care). In a number of European countries, discussions are underway on the future financing of long-term care in general and dementia care in particular. As a member of the Luxembourg Parliament and chair of the Luxembourg Alzheimer’s association, Jeannot Krecké took an active involvement in the introduction of the long-term care insurance in Luxembourg in the late 1990s. In his presentation, he will assess in his current position as Minister for the Economy and Foreign Trade, how the introduction of the long-term care insurance contributed to a significant growth of the care sector in economic and employment terms.

S4.4. A societal response to dementia

Magda Aelvoet, Former Minister of Public Health, Belgium, [email protected] Gerrit Rauws, King Baudouin Foundation Dementia is a decline in mental ability that usually progresses slowly, in which memory, thinking, and judgement are impaired, and personality may deteriorate. It mainly affects those aged over 60. It is one of the most important causes of disability in the elderly. Contrary to what usually is thought, dementia is more than loss of memory. It causes deterioration in all areas of mental ability and function. Most often it is accompanied by changes in behaviour and personality. As the disease progresses, people change from being healthy, autonomous members of society to being more dependent on others, both physically and mentally. We also have a growing awareness of the abilities and emotions which are retained long into dementia, despite serious cognitive decline. Yet, this increase in knowledge has not yet delivered effective medical treatments to reverse, halt or even significantly slow down the deterioration of the brain function in dementia. Treatments to mitigate the effects of dementia remain limited. This lack of effective cure challenges society as a whole to look more closely at how people can be supported to live well with dementia, how their experience of disability can be minimized, and how their relatives can be supported in coping well with the disease of their loved ones. Dementia is a challenging phenomenon particularly in western societies as the condition is opposite to the human ideal our societies strive for; a person with dementia is not any longer competent, not quick and efficient, not trendy. In one word, a person with dementia is the living antipode of the successful modern man. Therefore the way we see, feel and fear dementia has a lot to do with the dominant image of the disease in our society. The outspoken negative image influences very strongly our view on people who are confronted with dementia, it colours our feelings and conditions our way of dealing with this reality. The attitude our society adopts towards dementia and those immediately involved with it is of utmost importance. As the WHO has emphasised, the symptoms of dementia are “powerfully stigmatising”. Consequently, public awareness campaigns are required in Europe and worldwide, so that the stigma effect is reduced and people with dementia no longer experience exclusion pressures with a concomitant improvement in their quality of life. The stigmatizing labeling of people with dementia sort of locks them up whereby their shrinking possibilities shrivel untimely. Getting rid of the stigma is a heavy and difficult process requiring the commitment of different levels, actors and authorities. It is the precondition for levelling the path to enhanced quality of life for people with dementia and their carers. The local community can help in this situation by maintaining the social network of the family carer and by creating links between

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people facing the problem and the local community as a whole. The “dementia friendly communities” initiatives are particularly interesting in this respect. Reducing the isolation of the carer has also a knock-on benefit for the well-being of the person with dementia delaying the need for institutional care. Greater openness about dementia by high profile people with dementia can make a profound contribution to this process. It is clear from the wide variability in the disease progression and in individual circumstances that support for carers and people with dementia needs to be tailored to the individual situation. Furthermore, it should be noted that socio-psychological interventions which are aimed at both the person with dementia and the carer are most effective.

Special Symposia Presentations Friday 1 October 2010: 13.00-14.00 (Blue Room) Special Symposium SS1: Day-to-day decisions in dementia: Discussing challenges and sharing insights with an expert panel

Chairperson: Professor Giuseppe Bruno, Department of Neurological Sciences, University of Rome “Sapienza”, Italy Expert panel: Multidisciplinary faculty including healthcare professionals, a carer and a representative of a patient advocacy group. Alzheimer’s disease results in considerable challenges in the care and treatment of patients. Day-to-day issues have the potential to raise far-from-insignificant dilemmas and can cause considerable distress to those involved in the care of the person with Alzheimer’s disease. This interactive symposium is designed to provide a platform to discuss some of the most common everyday challenges facing those caring for people with Alzheimer’s disease. The aim is for the audience to contribute their own insights and views during the meeting. The topics to be discussed include views on whether the distress of a diagnosis can be justified by the benefits of early planning for the future and disease management, how to balance truth telling with causing distress as the individual’s memory diminishes, and how to reconcile individual choice and autonomy with safety and wellbeing. By sharing personal experiences, the faculty hopes to show how some common situations can be managed and also highlight the need for effective partnerships in Alzheimer’s disease care. In this session you will also hear about the Pfizer Lifeline – a new and innovative patient insight project designed to explore the narrative of patients and carers living with Alzheimer’s disease, enabling a deeper understanding how they perceive, and manage the ethical dilemmas which arise on a day-to-day basis as the condition progresses. This symposium has been organised and funded by Pfizer Ltd.

Saturday, 2 October 2010: 13.00-14.00 (Blue Room) Special Symposium SS2: PharmaCog: Bringing new hope to patients with Alzheimer’s disease

Elaine A. Irving, PharmaCog Co-Coordinator, GlaxoSmithKline R&D Ltd., UK Esther Schenker, Institut de Recherche Servier, France David Bartres-Faz, Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS) and Faculty of Medicine, University of Barcelona Alexandra Auffret, PharmaCog Project Manager, University of Marseille Despite the increase in translational medicine activities in recent years, there is not only a lack of agreement regarding the predictive value of behavioural, neuroimaging, and electrophysiological markers to be used for Alzheimer’s Disease drug discovery, the number of successful new drugs reaching patients is still very low. The launch of the five year € 20 M PharmaCog project funded under the Innovative Medicine Initiative marks the beginning of the most ambitious European project aimed at improving the success rate in AD drug discovery. This ambitious project brings together leading scientists from 29 organisations comprising public institutions, corporate partners as well as the patients’ association Alzheimer Europe. PharmaCog will also work closely with the European Medicines Agency (EMA), as an associated partner of this project, to share project progress and discuss the implications for drug development in Europe. This is a truly unique opportunity bringing together world leaders with a diverse range of expertise and experiences to work together to improve our ability to assess the potential clinical value of a new drug candidate. It is anticipated that such a concerted effort will minimise the risk of progression of unsuitable compounds and accelerate the development of promising new medicines for AD. In this session you will hear more about the scientific approach being taken by PharmaCog investigators, how this initiative differs from other ongoing research activities and how this will provide direct benefit Alzheimer patients in Europe.

Saturday, 2 October 2010: 13.00-14.00 (Yellow Room) Special Symposium SS3: Vorstellung der “Association Luxembourg Alzheimer” mit Schwerpunkt der Pflegeoase “Beim Goldknapp”

Alain Tapp, Michèle Halsdorf, Association Luxembourg Alzheimer, Luxembourg Die “ala” • Historische Fakten und Daten • Vorstellung der Strukturen

Facing dementia together / Luxembourg 2010 Final programme

• Tagesstätten • Wohn- und Pflegeheim “Beim Goldknapp” • Das Betreuungskonzept der ala • Die verschiedene Dienststellen: - Psychosozialer Dienstag - Fortbildung - Dokumentationszentrum - Alzheimer Café - Kurs für pflegende Angehörige - SOS Helpline - Sensibilisierungskampagne bei Jugendlichen - Wanderausstellung - Öffentlichkeitsarbeit Pflegeoase • Historischer Überblick • Die Struktur • Ziele, Umsetzung und Betreuungsumsätze der Oase • Profil der Bewohner und Aufnahmekriterien • Die drei wichtigste Bestandteile der Oase: Bewohner, Familie und Team • Zwischenbilanz • Blick in die Zukunft

Parallel Session Presentations

person with dementia has the capacity to make decisions and plan ahead, the project aims to help people stay connected in their communities, living as full a life as possible and to be able to plan ahead for their future needs. The project provides information, advice, signposting, emotional and practical support to help the person with dementia and their families/supporters to help them to understand and come to terms with living with dementia. The project assists people with dementia and their families/supporters to put in place financial and legal arrangements to maximise their control over future decisions made on their behalf (e.g. power of attorney, advance statements). Using person centred planning tools, staff can assist people with dementia to realise their aspirations and fears, and to plan ahead for their future needs, discuss options for future care and set out their wishes for the future. The project aims to help people to think creatively about the support they might require and to make use of “natural supports” including support from family, friends and community. An independent evaluation of the project is being carried out by the Dementia Services Development Centre. The evaluation aims to identify what difference, if any, the post diagnostic support service makes for people with dementia and their carers in terms of their lives with dementia over a period of one year from diagnosis. The main areas that the evaluation will focus on are quality of life, service access, independence and choice. An evaluation report will be produced for the Scottish Government and paper(s) submitted for publication in journal(s).

Friday, 1 October: 11.00-12.00 (Red Room) Innovative care services and approaches (1)

P1.2. Sight loss and dementia: developing effective services

Tracy Gilmour, Post-Diagnostic Practice Manager, Alzheimer Scotland, United Kingdom, [email protected]

Evers Clive, Alzheimer’s Society Devon House, 58 St Katharine’s Way, London E1W 1JX, [email protected], Buchanan, Sarah Thomas Pocklington Trust, 5 Castle Row, Horticultural Place, London W4 4JQ, [email protected]

The presentation will describe the work of the two-year innovative post-diagnostic pilot, funded by the Scottish Government. Dementia is a priority for the Scottish Government, which has recently published a National Dementia Strategy. The presentation will focus on the aims of the project, intended outcomes and report on work of first 18 months of project. Working with East Renfrewshire Community Health & Care Partnership and with Renfrewshire Council and Renfrewshire Community Health Partnership, the project is helping to bring the personalisation agenda into the field of dementia and aims to raise awareness of the benefits of individualised budgets and direct payments for people with dementia, enabling people with dementia to design and tailor support that meets their needs. The project aims to help people with dementia to become active participants in their own care and to be supported to maintain or recover control in their lives as much as possible at each stage of the illness. By providing support following diagnosis while the

The effect of dementia on vision is often not understood by people with dementia, their family or paid carers. At the same time, the effect of eye conditions and ageing of the eye often goes unrecognized among people with dementia because support is focused on the impact of dementia on people’s lives and little attention is paid to other conditions. The Alzheimer’s Society, RNIB and the Thomas Pocklington Trust are working to raise awareness of sight loss among people with dementia and to encourage policies and practice that address sight loss and make the most of vision. The aim is to support the development and delivery of services that will provide effective responses to sight loss – whatever its cause – that affects people with dementia and to offer guidance to families. Dementia and sight loss are both more frequent in older age. Dementia is one of the most common and serious disorders of later life affecting 7% of people over 65 (1 in 14). Some people who have dementia will experience sight loss due to

P1.1. Post-diagnostic pilot project

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visuo-perceptual changes caused by dementia. Some people with dementia will have concurrent eye conditions (most commonly macular degeneration and cataracts) and normal ageing of the eye. This means that almost everyone aged over 65 will have a degree of sight loss that affects their daily life. Taken together this means that at least 2.5% of people over 75 have both dementia and an eye condition that causes serious sight loss. Research, practice and the experience of people with dementia emphasise the importance of environmental modifications that make the most of vision. This presentation will draw on a 2009 consultation event with people who have dementia and are affected by sight loss and their carers, providers and commissioners of dementia services. Research projects about prevalence, experience and responses to sight loss among people with dementia will be outlined. Practice experience from the RNIB and Alzheimer’s Society gathered from consultation with dementia services, sensory services and older people’s services and family carers will be presented. An overview of prevalence will be given and a series of good practice points to support effective services for people with dementia and sight loss will be proposed. The importance of joint working will be stressed in order to support and maintain the roles and activities of people with dementia and sight loss.

practice gap, facilitating collaboration and suited to small-scale projects to effect change locally. This participatory approach can allow health professionals to reflect on practice and explore ways of improving service delivery. Psychiatry of Old Age, primary care, residential care and specialist palliative care are key research partners and will engage in a collaborative approach to problem solving and change management throughout the project. Results: The project aims to establish a framework for palliative interventions within dementia services, provide clarity on potential and timing for palliative interventions for people with dementia, family members and staff; guidelines for introduction of palliative interventions and referral to specialist palliative care, generate education and information materials for key personnel, service users and family members as appropriate. Conclusions: The framework, education and information components established in this project will be applicable in other care settings in Ireland. Further developments in policy, education and research will be identified.

P1.3. Developing palliative care in dementia services – An Irish action research project

1

Marissa Butler1, Dr. Tom Reynolds2, Michele Hardiman3 Clare Mental Health Services for Older People, Cappahard Lodge, Tulla Road, Ennis, Co. Clare, Ireland-HSE West, Ireland, [email protected] 2 Clare Mental Health Services for Older People, Cappahard Lodge, Tulla Road, Ennis, Co. Clare, Ireland-HSE West, Ireland, [email protected] 3 Clare Mental Health Services for Older People, Cappahard Lodge, Tulla Road, Ennis, Co. Clare, Ireland-HSE West, Ireland, [email protected] Introduction: The Irish Hospice Foundation/HSE Report of 2008 “Palliative Care for All: Integrating Palliative Care into Disease Management Frameworks” examined the palliative care needs of people with dementia. It found little evidence of delivery of palliative care for people with dementia in Ireland and recommended that palliative care should be integrated into the care pathway of people with dementia in all care settings. In response to this key recommendation in 2010 a two-year action research project began to devise, implement and evaluate appropriate palliative care responses for people with dementia within an Irish health care context. It is based in a residential facility under the auspices of Clare Mental Health Services for Older People, Ireland. This project is jointly funded by the Alzheimer Society of Ireland, the Irish Hospice Foundation and the Baxter Foundation. Method: Action research methods are effective in closing the theory1

Friday, 1 October: 11.00-12.00 (Blue Room) Relationships, communication and sexuality P2.1. Communicating with Alzheimer patients

Razvan Ioan Trascu1, Luiza Spiru1 Ana Aslan International Academy of Aging, Romania, [email protected], [email protected]

Background: Diagnosing Alzheimer's disease is a long-lasting process, due to a flamboyant variability of initial symptoms (i.e. memory problems, speech difficulties, behavioral changes). Patients are usually either unaware of their difficulties or attempting to conceal them. Complete diagnostic workups usually lead to an implacable diagnostic, forcing both caregivers (family) and patients to face numerous uncertainties. Method: We performed a systematic overview of medical literature (PubMed search, disclos* OR communic* NOT communicate AND Alzheimer), selecting of the 516 resulting titles those papers focused on doctor/patient and doctor/caregiver communication issues. We further summarized the recommendations and gold practices identified by various authors, contracting them into key messages (i.e. "frontal, eye-contact"). Results: Specific communication requirements were identified for effective collaboration between (1) physician and patient, (2) physician and patient’s caregivers/family and (3) caregivers/family and patient. A minimal set of communication skills and predictable courses of action was further developed, depending on (a) best practices and (b) recommended practices. Conclusions: Although communicating with people with Alzheimer is difficult, quite often the communication barriers are mainly due to an inaccurate perception of the disease and of patient limitations and disabilities. Understanding the mechanisms involved and ac-

Facing dementia together / Luxembourg 2010 Final programme

quiring certain interpersonal habits may significantly improve communication effectiveness, particularly in mild and moderate AD. A better understanding of the leading causes of miscommunication should overcome most communication barriers.

Mark the dates! 21st Alzheimer Europe Conference European Solidarity Warsaw 6-8 October 2011 P2.2. Attending to communication difficulties between people with dementia and family carers: A relationship-centred approach

Damian Murphy, Holgate Villas, 22 Holgate Road, York YO24 4AB, Education and Development Alzheimer’s Society, UK, [email protected] Since beginning work in the field of dementia care, I have become increasingly concerned by relationship breakdown between people with dementia and their family carers caused by what I perceived to be unattended communication difficulties, often resulting in people questioning the validity of decades of marriage. I have noticed two key factors that tend to perpetuate this situation. Firstly the majority of current services tend to separate people for a while and send them back to the same unattended antagonisms and secondly, the lack of effective joint work with both members of the caring partnership. I am increasingly convinced that service provision cannot focus exclusively on one partner or gain only one perspective in the caring relationship because of the interdependent nature of that relationship. The first part of my presentation will report on the findings of a foursession series of semi-structured interviews entitled “The Getting Along Project”, explored with three care dyads over a period of six weeks. This project had three aims. First, to enable dyads to broach subjects they had not been able to discuss; second, to facilitate conversation on an equal footing for both participants and third, to establish a framework to carry out relationship-centred work. The second part of my presentation will cover the aims, content and initial outcomes of a training programme, borne of that work and piloted and delivered across a front line dementia care workforce of up to 600 people throughout the East Midlands area of the UK in my role within Alzheimer’s Society Education and Development. I believe it is vitally important to enhance the quality and type of support that front line community dementia care services currently offer to families living with the presence of a dementia. Front line staff need to be equipped to identify unattended antagonisms within relationships and to be confident and competent to respond to these. There is an urgent need to promote a broader understanding of both sides of the caregiving relationship. Keywords: Dementia; Communication; Relationship-centre care.

P2.3. Feelings of family caregivers towards the cared-for person with dementia – A micro-analytic approach

Anja K. Leist1, Catherine Kaiser-Hylla2, Dieter Ferring3 University of Luxembourg, Faculté des Lettres, des Sciences Humaines, des Arts et des Sciences de l’Education, Unité de Recherche INSIDE, Route de Diekirch, L-7220 Walferdange, Luxembourg, [email protected] 2 University of Applied Sciences, Department of Social Work, Konrad-Zuse-Straße 1, 56075 Koblenz, Germany, [email protected] 3 University of Luxembourg, Faculté des Lettres, des Sciences Humaines, des Arts et des Sciences de l’Education, Unité de Recherche INSIDE, Route de Diekirch, L-7220 Walferdange, Luxembourg, [email protected]

1

Objectives: In the last decade, much research has been dedicated to, firstly, investigating the burden that family caregivers of persons with dementia are facing and, secondly, how this burden (i.e., caregiver suffering) influences the relationship between the family caregiver and the cared-for person. However, feelings towards the cared-for person are often investigated by globally asking about the perceived burden of caregiving. Such an approach might certainly not capture the feelings of caregivers towards the cared-for person in their full complexity. Therefore, the present study sought to investigate the subjective experiences of family caregivers in a more detailed and qualitative approach within two case studies. Method: A series of interviews with a 75-year old man and a 72-year old woman, both caregiving for their spouse, were conducted. The interviews were analyzed with qualitative content analysis. Quantitative measures for perceived burden of life situation, social satisfaction, and well-being reported by the interviewees were used to validate the reports. Results: Feelings toward the cared-for spouse were complex and differed to a great extent between the two interviewees’ reports. The female caregiver reported on own physical symptoms due to constant care, but primarily expressed gratitude for “good days” of her husband. The male caregiver, in contrast, expressed anger and resignation, and related these feelings to behaviors and demands of his spouse as well as to own unrealizable desires (e.g., going on vacation). Similarities between the caregivers’ experiences emerged in both reporting (1) feelings of burden due to caregiving, (2) structuring daily routines around the needs of their spouse, but also (3) feelings of satisfaction by doing something good for the cared-for spouse. Discussion: The study shows that, firstly, the subjective experiences of family caregivers differ widely between individuals and, secondly, that caregiver suffering does not only manifest itself in different symptoms, but is also attributed to different causes by the care­givers. On a policymaking level as well as on the level of care management, it is therefore essential to design and implement personalized interventions that aim at reducing the specific physical and psychological stressors accompanying caregiving.

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Abstracts

P2.4. Sexual function in dementia and related issues

Marianna Tsatali1, Magda Tsolaki2, Vasileios Papaliagkas3 1 Greek Alzheimer’s Disease and Related Disorders Association, Greece, [email protected] 2 Greek Alzheimer’s Disease and Related Disorders Association, 23rd Department of Neurology, Aristotle University of Thessaloniki, Greece, [email protected] 3 Department of Experimental Physiology, Medical School, Aristotle University of Thessaloniki, Greece, [email protected] Sexuality is a central human need beginning at birth and continuing throughout life, as human nature is in need of intimacy and love. Thus, sexual needs in the elderly are similar to those of younger people, although there are variations in frequency, intensity and mode of expression. Recent studies show that the fundamental psychosociological need for acceptance, tenderness, warmness and security does not disappear with age. Sexual activity in ageing primarily depends on the existence of a partnership, while sexual dysfunctions in ageing result from physical, psychological, and partner-related changes, as well as lifestyle factors. Older adults often have difficulty communicating sexual problems, concerns, and questions because of their conflicting attitudes and perceptions. So physicians need to be aware of the possibility of covert sexual dysfunctions, clear about their own attitudes and expectations to avoid stereo­ typing the elderly, and knowledgeable about pharmacological, organic, and psychosocial bases of sexual problems in older patients. Chronic diseases can affect the sexual function, which is strongly related to overall satisfaction, and is necessary to be part of the overall assessment and treatment. As a result, neurodegenerative diseases may impact dramatically upon sexuality and its expression, influencing patients’ lives and their immediate environment. Alzheimer's dementia is characterised by both cognitive and functional deficits in addition to a wide range of psychiatric disturbances, including behavioural and psychological problems and changes in sexual behaviour. During the first stages, sexual desire may either increase or decrease. Many patients may become hypersexual whereas others completely indifferent. Patients with dementia may become sexually disinhibited in relation to their cognitive deficits progress. Regarding inappropriate sexual behaviours (ISB), it may manifest as a clinical symptom in either verbal or physical form. Inappropriateness is defined as a vigorous sexual drive after the onset of dementia that interferes with normal activities of living or is pursued at inconvenient times and with unwilling partners. The physically inappropriate behaviour includes touching, fondling, disrobing and masturbation and affects caregivers, causing depression, burden, stress and affecting caregivers’ social life, morale and somatic health. These behaviours also may signal that the elderly individuals with dementia are distressed and because of a combination of inappropriate behaviours and loss of communication skills, these individuals may not receive adequate assessment or treatment. Moreover, dementia can cause changes in sexual intimacy

and marital satisfaction. The subjective perception of burden by spouse caregivers is higher in women than in men and it is related to the dementia severity of their partners. High sexual activity was problematic to 75% of the female caregiver spouses. Caregivers evidenced adaptation and control, afflicted spouses tended to deny problems and had distorted perceptions of interactions with their caregiver spouses. This abstract tries to highlight these arising sexuality issues related to dementia through specific literature data and through our research upon sexual activity and desire among people with dementia, depressed and normal elderly. In particular, we tried to describe the factors which affect elders ability to have sex. Diagnosis which one has, according to our survey, has an impact on his/ her sexual function but not in all types of dementia. It was found a statistical significance of the whole sexual function at the previous month between people with and without Alzheimer's disease (AD), between elderly with Mild Cognitive Impairment (MCI) and AD and between MCI and AD, while the participants’ sexual function during the last month has been dependent on their gender. Men were more sexually active in the three groups than women and sexual desire is dependent on previous sexual experiences according to women’s preferences, while this is not obvious among men. At that point we can observe clearly the differences in sexual life which need further research and discussion, as life expectancy is increasing and sexual function too.

Friday, 1 October: 11.00-12.00 (Yellow Room) Perceptions of dementia P3.1. Impact of practice changes of professional caregivers on their social representations of Alzheimer’s disease

Géraldine Viatour, Kevin Charras G. Viatour, Fondation Médéric Alzheimer, 30 rue de Prony, F-75017 Paris, [email protected] K. Charras Fondation Médéric Alzheimer, 30 rue de Prony, F-75017 Paris, [email protected] A social representation is a stock of values, ideas, beliefs, and practices that are shared among the members of groups and communities. Social representations also help us to understand the world, to adapt us to it, to explain and to have the sensation of mastering it. This exploratory study focuses on the evolution of social representations of professional caregivers in special care units for people with dementia that have implemented the EVAL’ZHEIMER programme. In this programme the caregivers have benefited of 12 weekly training sessions in order to adapt their care practices to people with dementia. The training was associated with a dementia-friendly environmental intervention in order to adapt the design of the facility to the alterations of this pathology. If we consider that practice is an important condition that contributes to the social representation’s evolution, studying social representations can be a suitable criterion to evaluate such a programme. Thus we hypothesized that

Facing dementia together / Luxembourg 2010 Final programme

the programme should have an influence on the social representations of Alzheimer’s disease. 44 caregivers answered during the first and the last session to the question: “What do you know about Alzheimer’s disease?” A content analysis of their answers and their rating in a prevalence order enabled us to analyse social representations. The first set of answers show that caregivers make a symptomatic description of Alzheimer’s disease, and behavioural disorders are largely represented. During the second evaluation, after 12 training sessions, caregivers make a less impersonal description of Alzhei­ mer’s disease, considering the person more than the disease. These results encourage us to do a confirmatory research about the evolution of social representations in the EVALZ’HEIMER Programme.

• give a voice to patients themselves as well as their carers to make "their world" more accessible and comprehensible to others. A second call for project is running till November 2010 in Belgium. Several foundations will launch a campaign at European level. This campaign will be presented at the High-level conference on dementia organised by the Belgian presidency of the EU in November 2010. In partnership with umbrella associations from municipalities a network of dementia friendly communities is created and an inspiration guide will be published to promote the dementiafriendly municipalities.

P3.2. Dementia-friendly municipalities: How can we transform our towns, villages and neighbourhoods by strengthening the social fabric around people with dementia and their carers?

Maddalena Riva, Luca Rozzini, Salvatore Caratozzolo, Marta Zaffira Conti, Federica Gottardi, Alessandro Padovani Department of Neurology, University of Brescia, Italy, [email protected]

Gerrit Rauws1, Bénédicte Gombault2, Saïda Sakali3 1 rue Brederode 21, 1000 Brussels, Belgium, King Baudouin Foundation, director, [email protected] 2 rue Brederode 21, 1000 Brussels, Belgium, King Baudouin Foundation, projectmanager, [email protected] 3 rue Brederode 21, 1000 Brussels, Belgium, King Baudouin Foundation, projectmanager, [email protected] Learning to manage dementia is a real challenge for the whole society. A more public health approach to care for people with dementia, including community engagement as well as service provision, is needed. This is why the King Baudouin Foundation launched a campaign “Pour une commune Alzheimer admis/Voor een dementievriendelijke gemeente” (For a dementia-friendly municipality). The local community’s openness and readiness to welcome this vulnerable group into society can create a climate that literally and metaphorically provides living space for persons with dementia and their informal carer. The objective is to promote the creation of supportive local environments, the strengthening of community action, the development of personal skills and the reorientation of health services towards partnerships with communities. The reaction of the municipalities are very positive and already more than 30 municipalities initiated projects that: • stimulate participation of people with dementia in their local community; • encourage interaction between patients and the local community to put an end to their isolation (or risk of isolation); • improve the integration of people with dementia within society: in neighbourhood shops, supermarkets, public services, sport and cultural activities, cafés, restaurants, in the street, etc. • lift the taboo that exists around the subject of dementia and put the accent on its human dimension;

P3.3. Knowledge and attitudes about Alzheimer’s disease in the lay public: influence of caregiving experience and other socio-demographic factors in an Italian sample

Background: Nowadays there is an increasing attention to awareness and insight of illness in persons with Alzheimer's disease (AD), their caregivers and general population; however, little is known about factors that could influence the knowledge about this type of cognitive disorder, likely to be highly prevalent in the future, worldwide. Aim: This study aims to observe the influence of the caregiving experience, sex and age on the knowledge of AD; moreover this study intends to provide a better understanding of the lack of information about this common disease: these data could help medical staff give comprehensive information to people who request services for this disorder. Materials and methods: 1,111 individuals (234 caregivers and 877 noncaregivers AD of different age, education, job and income) were assessed with a questionnaire constituted of 10 questions. The questionnaires were submitted to people waiting in the foyer of several departments of the hospital “Spedali Civili di Brescia” and in the anteroom of family physicians. The questionnaires assessed several issues: the general knowledge about Alzheimer's disease, characteristic symptoms and risk factors, the perceived availability of services and the accessibility of information about, opinions about health care and drugs’ effectiveness. Results: 46% of caregivers and 53% of non-caregivers AD think that dementia is a normal consequence of ageing; the majority of the caregivers declares to be able to recognize the onset symptoms of Alzheimer's disease (67%) and is aware of the existence of the UVA centers (80%). Independently from the caregiving experience, men and elderly are less informed about AD and about territorial services. Discussion: There is a significant discrepancy of knowledge and opinions between individuals in different categories of sex, age and education; whereas, the differences between caregivers’ and noncaregivers’ answers are less than expected.

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Conclusion: Alzheimer is certainly a disease known by the general population, but this knowledge is sometimes superficial and inaccurate. There is a specific part of population that should be more informed about this kind of dementia, so that wrong opinions and social stigma could be eradicated.

Friday, 1 October: 11.00-12.00 (Green Room) Successful campaigning

P4.1. Successful campaigning: collaborations with industry Jessica Federer, MPH, Bayer Healthcare Pharmaceuticals, Berlin, Germany, Jessica.federer@ bayerhealthcare.com Pharmaceutical companies are the leading corporate donors, contributing over $ 3.84 billion cash and $ 3.23 billion in 2008 in product donations, as reported by the 2008 Corporate Contributions Report. However, collaborations with industry are useful for much more than financial resources. In light of the rapidly evolving global development, regulatory and policy environment, this session will provide a brief summary of the information necessary to facilitate compliant, productive, and mutually beneficial relationships between pharmaceutical companies and Alzheimer’s Associations to further enable campaign success. A strong understanding of the relevant international compliance regulations and guidelines forms the foundation of a productive relationship. The Pharmaceutical Research and Manufacturers of America, European Federation of Pharmaceutical Industries and Associations, Association of the British Pharmaceutical Industry, the International Alliance of Patients Organization, and The National Health Council publish clear guidelines that form the basis for industry relationships and interactions. Once these regulations are understood, organizations can establish their own internal rules of engagement by identifying the principles that must exist within any collaboration with industry. These should include, but are not limited to: integrity, independence, equity, mutual benefit and transparency. With a solid grounding in the regulations and principles, the next step is to identify your organizational goals and reasons for working with industry. Common reasons for partnership include but are not limited to: financial support, educational programmes, access to treatment, patient assistance programmes, lobbying, policy projects, advocacy challenges, interaction with KOLs, networking opportunities, data generation, technical assistance (e.g. website design), promotional support, meeting space and facilitation, business and strategic planning, media planning, distribution of patient organization materials through the sales force staff. More broadly, these interactions fall into three categories. A global health care consultancy organization, Krueger & Associates, has classified these interactions as traditional, intermediary, and activism. Examples of these interactions will provide additional insights into potential collaborative partnerships. Lastly, it is helpful to understand the recent changes occurring in

the pharmaceutical industry in their perspectives on drug development and approaches to market access. Corporations are adjusting to rising costs, with the average cost of developing a new treatment for any disease over 800 million USD, increasing regulatory hurdles, price pressures, and substantial shifts to the rapid growth of emerging markets. An awareness of these evolutions and understanding the critical and growing role of organizations in this process will enable respectful partnerships and provide insights into how to approach these corporations for campaigns with maximum success.

Mark the dates! 21st Alzheimer Europe Conference European Solidarity Warsaw 6-8 October 2011 P4.2. Konfetti im Kopf – a photographic awareness campaign

Michael Hagedorn, Photographer and initiator; Hamburg, Germany, [email protected] KONFETTI IM KOPF (“Confetti in your head”) is a multifaceted campaign on dementia, that started in Berlin in October 2009 and will travel to other cities and communities in Germany and internationally. The core of KONFETTI IM KOPF is a large-scale open air exhibition displaying pictures from my long-term photo project on dementia, supplemented by an ambitious programme of workshops, talks and screenings along with uniquely creative and humorous off-programme activities. Dementia is a socially relevant issue, usually communicated in dreary colours. KONFETTI IM KOPF uses a constructive and colourful ap­ proach to handle this subject. Thus the campaing manages to show new perspectives and to encourage people to look into the subject more closely. It is our intention to reach the general public in public space without boundaries, clearing out prejudices about dementia and helping to plant new pictures in heads and hearts of people. We aim at all parts of society from young children to societal fringe groups to just about everybody. Because dementia matters to all of us. Most importantly our aim is to air the voices of people with dementia through images and texts and by including people with dementia in the campaign in as many ways as thinkable. During the pre-phase of the campaign start in Berlin 26 professional organisations dealing with age care could be activated to contribute their know-how and manpower. After the main events they unanimously decided to continue working together on future KONFETTI events. The Patron of the campaign is former Federal President of Germany, Prof. Dr. Roman Herzog. Klaus Wowereit, Mayor of Berlin, also became a Konfetti-mentor, together with celebrities like actors, athletes, authors and singers.

Facing dementia together / Luxembourg 2010 Final programme

The campaign was present all over Berlin, especially in the Central Station on big banners, posters, bill-boards and screens. At an information desk people could learn about dementia and were encouraged to visit the open-air exhibition. A multilingual website (German and Turkish, www.konfetti-im-kopf.de) provides in-depth details about the campaign. Every day visitors were involved in a supporting programme with readings, plays, films, concerts, workshops, lectures and dance. KONFETTI IM KOPF was successful in bringing together many different professional organisations concerned with dementia care and using the synergistic effect for this important issue. Almost 50 German cities expressed their strong interest in participating. The project has evolved a lot after the Berlin kick-off, and 2011 will see some.

care settings. This development supports crucial workforce objectives in the strategies as well as backing up the Society’s call for acute nurses in general settings to have dementia training. Working widely across a range of organisations is very beneficial for strategy development and implementation. I will discuss the impact of the Society’s work with a range of groups and influential people, including the All Party Parliamentary Group (APPG) in England. The Society’s work with the APPG on an inquiry into the overuse of antipsychotic drugs leads to increased scrutiny and a government review, promised in the English strategy and completed in November 2009. The United Kingdom general election presented another opportunity to work with key groups. Delegates will learn how the Society lobbied politicians to gain manifesto commitments that would implement strategy objectives.

P4.3. Policy and pressure: making dementia strategies a reality

P4.4. Special Populations, Special policy challenges

Alice Jarratt, Alzheimer’s Society, England, [email protected]

Michael Splaine, Director, State Affairs, Alzheimer’s Association US, [email protected]

The United Kingdom is part of a growing European movement to push dementia up the public and political agenda. In this presentation I will share Alzheimer’s Society’s work to develop and implement National Dementia Strategies in England, Wales and Northern Ireland. Delegates will hear about the crucial role of strong evidence and learn about the benefits of involving people with dementia in policy development. I will also discuss how the Society has targeted and worked with influential figures to secure commitment to strategy objectives. People with dementia and their carers are the true experts in what they need to live well with dementia. I will share lessons in how to ensure they are at the heart of strategy development. I will discuss how the Society involved people with dementia and their carers during official consultations on the draft strategies. The advice of people with dementia and their carers was invaluable in securing strategy commitments that addressed their needs, including greater emphasis on peer support and specific commitments around younger people with dementia. Strong, hard-hitting evidence is a powerful force for change. Delegates will learn how powerful evidence can ensure dementia strategies translate into better services and support on the ground. I will discuss the Society’s report into the care of people with dementia in hospital, “Counting the cost”. The need to improve dementia care on general hospital wards is recognised in the UK dementia strategies. “Counting the cost” showed that the need for implementation is urgent. The Society’s report surveyed over 2,400 people and found unacceptable variation in the quality of care. The weight of these findings attracted significant media attention and increased pressure on politicians. Improving hospital care for people with dementia, a key strategy objective, is now well and truly on the political agenda. Service improvements include widespread dissemination of “This is me”, a tool to improve person-centred care in hospital and development of the Society’s training course on supporting people with dementia in acute

In the US the development of comprehensive state government Alzheimer plans has led to identification of some narrow bands of persons with the disease and carers and subsequent policy considerations. Among these are persons with Down's syndrome (a form of mental retardation) now facing the dual diagnosis of Alzheimer’s, incarcerated persons ageing in place and persons with ADRD living alone. This session will describe the populations and preliminary policy recommendations for each subgroup.

Friday, 1 October – 14.00-15.30 (Red Room) Nursing home care P5.1. Enhancing nursing students’ understanding of the experience of a person facing dementia by interviewing a close family member of that person

Margrét Gústafsdóttir, Faculty of Nursing, Eirberg, Eiriksgata 34, 101 Reykjavik, Iceland, University of Iceland, [email protected] Gerontological Nursing is taught in the spring semester in the third year of a four-year baccalaureate programme of nursing in Iceland. On entry into the course most of the students have some experience of working with the elderly, especially in nursing homes, and often they have not found it very challenging. The students tend to see most residents of nursing homes as quite similar, and more or less “out of it” and “very demented”. A large proportion of the ten-unit course is, in spite of that, or rather because of that, devoted to nursing care of persons suffering from dementia, not least during the clinical time. Different means have been explored of finding ways to open the students’ eyes to the individual experience of a person facing dementia, and that of his or her family. The two most successful approaches so far have been, on the one hand, to place the students in special units for people with

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dementia, mostly daycare units, and on the other hand to organise an interview with a close family member. This presentation will focus on the latter approach, which has been organised as a clinical assignment with the necessary and very valuable input of the RNs in the respective units. The RNs know the relatives of the clients staying in the unit very well, and they have chosen a few particularly involved family members to contact, and then asked each of them if they would be willing to meet with a nursing student for a confidential interview for an hour or so, either in the relative’s home or in the unit. Before the interview, each student has been in the unit and attended to the person to be discussed with the family member. All the students are then required to follow an interview guideline during their meetings with the family members, in order to focus and frame the interview. Also, when each interview is arranged, it is made quite clear that all information revealed during the interview is strictly between the student and the family member, and will not be brought back to the unit. The interview guideline will be introduced and addressed during the presentation. The students are not allowed to tape the interviews, but they can certainly make notes as the interview proceeds. The students must not, of course, refer to any true names when they write up the interview-based narratives, for evaluation of their work in the course, but they can use pseudonyms. Each narrative throws light on the experience of the person facing dementia, in the words of a close family member, who is one of the person’s nearest and dearest. The students seem to realise very clearly, during the process of writing up the narratives, what it entails to go through the disease process of dementia, as well as the family responses to the changes of behaviour of the person, and different pattern of daily life following in the wake of the disease process. The emerging new insight evoked by different narratives is, especially, reflected in the way in which the students talk about people with dementia after meeting with the relatives. The students’ manner of talking about people with dementia and the family concerned before and after the interviews will be clarified with a few anecdotes in the presentation. It will also be emphasised that the RNs in the units have been very positive about this assignment carried out by the students, as they find such meetings between a student and a relative to be beneficial for the family facing dementia.

Mark the dates! 21st Alzheimer Europe Conference European Solidarity Warsaw 6-8 October 2011 P5.2. The Imagination method; A new approach for caregivers of people with dementia in nursing homes

Van Dijk A.M.1, Dröes R.M.2, Van Weert J.C.M.3

Department of Psychiatry, Alzheimer Center, EMGO, VUmc, Valeriusplein 9, 1075 BG Amsterdam, The Netherlands, [email protected] 2 Department of Psychiatry/Department of Nursing home medicine, Alzheimer Center, EMGO, VUmc, Valeriusplein 9, 1075 BG Amsterdam, The Netherlands, [email protected] 3 Amsterdam School of Communication Research UvA, Kloveniersburgwal 48, 1012 CX Amsterdam, The Netherlands, [email protected] 1

Background: The Imagination method, developed by Theater Veder, is being implemented on a large scale in nursing homes with residents with dementia. Caregivers are trained in the use of theatrical stimuli in combination with elements of proven care methods, such as Reminiscence and Validation Therapy. The purpose is to stimulate the reciprocity in care relations of caregivers and persons with dementia (PwD) and to enhance the personal identity and self-esteem of people with dementia by activating their long-term memory. The aim of this study is to describe the Imagination method and its implementation on psychogeriatric nursing home wards as well as to evaluate the effect of its application on people with dementia and their professional caregivers. Method: Phase 1: Description of the Imagination method based on literature study and participant observation of Imagination method group activities Phase 2: Process-evaluation of the implementation by means of interviews with key figures (e.g. managers, nurse assistants, activity therapists) Phase 3: Impact of the Imagination method on people with dementia and caregivers: - 70 PwD receiving an Imagination method-activity are compared with 70 PwD receiving a usual reminiscence activity. Different aspects of behaviour and quality of life are measured at three time points: (t1) pretest; (t2) during the activity and; (t3) posttest. - Five focus groups with each 6 to 8 caregivers and volunteers who have been trained in the Imagination method will be conducted in order to discuss job satisfaction and the applicability and usefulness of the Imagination method. Results: Phase 1 and 2 are finished: (1) Based on systematic participant observation, a detailed description was made of the Imagination method as a group activity regarding the use of theatrical stimuli, quality of communication and PwD reactions. The use of songs, validation and one-to-one communication had positive effects on PwD reactions. (2) The process evaluation resulted in an inventory of facilitators and barriers of implementation of the Imagination method as a group activity by using the “implementation process evaluation framework”. Examples of important facilitators of implementation were enthusiasm, support and involvement of every level in the organisation, the presence of a project plan, the presence of stable key figures and contact person, appointing a “core group”

Facing dementia together / Luxembourg 2010 Final programme

and building in standard evaluation moments. Examples of important barriers of implementation were insufficient communication about mutual expectations between implementator and the nursing home, lack of management support, lack of support by the implementator on implementation in daily care, insufficient time for caregivers to prepare and practice the Imagination method. Conclusion: The Imagination method is a new method which aims to enhance the reciprocity in care relations of caregivers and PwD. The first two phases of the study resulted in a clear description of the Imagination method and insight in facilitators and barriers of implementation. The outcomes of this study can be utilized by care providers who want to implement this method in care homes and nursing homes. Currently, the Imagination method is applied as a group activity only. Further investigation is needed to explore how to integrate (elements of) this method in 24-hour dementia care. The study results of the impact study (phase 3) are expected in December 2010. P5.3. Criteria to determine appropriateness of hospital admission in nursing home residents with dementia: A systematic review

Anna Renom1, Adriel Ortega2, Eva Mann3, Lisbeth Uhrenfeldt4, Gabriele Meyer5 1 Institute of Nursing Science, University of Witten/Herdecke, Witten, Germany, [email protected] 2 Institute of Nursing Science, University of Witten/Herdecke, Witten, Germany, [email protected] 3 General Practice and Institute of Health Services Research, Rankweil, Austria, [email protected] 4 Regional Hospital Horsens and Brædstrup, Horsens, University of Aarhus, Aarhus, Denmark, [email protected] 5 Institute of Nursing Science, University of Witten/Herdecke, Witten, Germany, [email protected] Introduction: Residents of long-term care facilities (LCTF), mainly those with dementia, are at high risk of being transferred to the hospital. Admission to hospitals can encompass residents’ distress, risk of iatrogenic illness, adverse events and deterioration in mobility and cognition. The prevalence of inappropriate transfers to hospital widely varies throughout studies (10-64%), leading to different conclusions. This variability can be partly due to different definitions of appropriateness. The review of the theoretical basis is a first step for the development of interventions aimed to reduce inappropriate referrals. These interventions may increase the quality of care, especially in dementia and end-of-life, and save costs. Objectives: To review the criteria existing in the literature for determining the appropriateness of hospital admissions in LTCF residents, with special focus on dementia. Methods: A working team has been established by five researchers from Austria, Denmark and Germany. A research protocol has been developed and finalized. The systematic review comprises: 1) A

litera­ture search limited to the last 10 years in MEDLINE and CINAHL, using the following inclusion criteria: prospective and retrospective studies; inclusion of long-term care residents referred to hospital emergency departments or hospital wards; availability of data on diagnostic and/or therapeutic procedures; papers which administer, develop and use or derive criteria to assess appropriateness of the referral. 2) Quality assessment, performed independently by the reviewers; the methodology will be defined according to the design of the studies retrieved, any disagreement will be resolved by discussion. 3) Literature overview. Results: 183 records have been identified through the systematic search and 27 through other sources. After screening, 36 records have been assessed for eligibility and 18 have finally been included. The systematic search is still to be completed by further search in CINAHL, related articles checking and primary authors’ request. The findings as far include high variation in different aspects: definition of appropriateness (preliminary: more than 7 different definitions); prevalence of inappropriateness; perspective of judgement (appropriateness vs. preventability); organisational aspects; clinical approaches (therapeutic vs palliative). Conclusion: The systematic review is still in progress. It will reveal an overview about internationally available papers on appropriateness criteria for hospital admission in LTCF residents and therefore provide a good basis for complex intervention development. P5.4. Continuing to care for people with dementia: Irish family carers’ experience of their relative’s transition to a nursing home

Murna Downs1, Elaine Arygle2 (authors of report), Grainne McGettrick3 (writer of abstract) 1 Bradford University, England, [email protected] 2 Bradford University, England, [email protected] 3 The Alzheimer Society of Ireland, Ireland, [email protected] Little is known about the experience and the role of Irish carers when the person (with dementia) they care for has been admitted to a nursing home. There is also a commonly held myth that family caring ceases upon admission. The pre- and post-transition phase was the focus of a piece of qualitative research carried out by the University of Bradford for the Alzheimer Society of Ireland and St. Luke’s Home. The purpose was to examine carers’ experiences of the transition that would provide evidence-based guidance for the development of initiatives for carers. A range of issues are addressed in the research including the carers’ key influences in making the decision to admit the person, the actual experience of making the transition, the changing role of the carer, the types of roles carers want and how they can be supported in these roles. The researchers used a qualitative approach using both semi-structured interviews, one-to-one interviews incorporating “photo voice” method and focus groups. The grounded theory approach was used to analyse the data. The findings indicate that the key influences in pursuing

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T

he Fondation Médéric Alzheimer is a non-profit organisation created in August 1999 and recognized as a public service. Its mission is to increase knowledge about the medical and social consequences of Alzheimer's disease and related disorders; to promote the development of innovative local initiatives and good practices aimed at helping people with dementia and their caregivers (family members, volunteers and professionals); and to spark reflection about treatment that goes beyond the categories stemming from the rift between the social sciences and the medical science. As a resource and expertise centre providing a vantage point to observe current practices, the Foundation organizes its action along three main axes.

>

Observe, identify and understand

• By developing knowledge of studies and research in social sciences and public health initiated in France and elsewhere, and of actions that benefit people with cognitive disorders, voluntary and professional carers in France and elsewhere. • By instigating surveys to establish listings of support and care options in France for people with dementia and their carers.

>

Inspire, support and sustain

• To support research in social sciences and public health, to promote the development of psychosocial research aiming to attenuate the consequences of the disease in daily life. • To support innovative local projects aimed at helping people with dementia and their carers (family members, professionals and volunteers), to promote new actions responding to the needs of patients and their carers.

>

Raise awareness, inform and disseminate information

and know-how in France and elsewhere, through publications, partnership with Alzheimer’s associations and involvement in French policies.

Fondation Médéric Alzheimer • 30 rue de Prony 75017 Paris FRANCE • Tél : +33 (0)1 56 79 17 91 • Fax : +33 (0)1 56 79 17 90 E-mail : [email protected] • Web site : www.fondation-mederic-alzheimer.org

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Facing dementia together / Luxembourg 2010 Final programme

long-term care were an accumulation of a range of contributory factors. The process of transition was characterised by conflicting emotions ranging from relief to guilt, bereavement and loneliness. Carers’ adjustment to the process of transition was facilitated by their perceived quality of the long stay setting, their familiarity with the long stay setting and by the receipt of emotional and spiritual support. The carers’ role following transition was characterised by continuity on the one hand and change on the other. Carers maintained continuity in their caring role by continuing to spend time with their relative and continuing to perform some practical tasks. The key change to their caring role was in taking on the role of quality assurance. All carers wished to be able to continue to participate in the long-term care of their relative. Some carers saw the admission of their relative as an opportunity for them to resume their own lives. Carers felt that these aspirations could be filled by establishing good lines of communication with staff, having information and education about dementia and dementia care and having ongoing emotional support. The research has led to the development of a range of recommendations. These recommendations identify the need for significant development of community based services especially respite care services which were acknowledged as a crucial service to support the transition. The ignorance and stigma and both dementia and long-term care need to be challenged through appropriate awareness and education measures. Nursing home managers need to promote person-centred care via dementia specific training and education for staff and quality improvement methodologies such as Dementia Care Mapping to promote quality service provision. The development of a pilot intervention-based programme to engage and support carers preand post-transition would further contribute to the learning needed in this area. Education, information and support for family carers are essential as is professional education for a range of health care personnel. As a small-scale qualitative study, this work could be further enhanced by additional research to enhance the knowledge and evidence base for initiatives to support carers. P5.5. Organisational and personal determinants of the use of physical restraints in Luxembourg nursing homes

Wolfgang Billen Prof. Dr. Dieter Ferring, University of Luxembourg, Integrative Research Unit, Social an Individual Development (INSIDE) Introduction: The use of physical (and other forms) of restraints is still a major issue in the institutional care of people with dementia. Restraints can be used in an area not regulated by law as sometimes the case is in Luxembourg. Furthermore, professional care givers from different countries working in Luxembourg have different training and cultural backgrounds. An interesting question is how many people with dementia in Luxembourg are concerned by physical restraints in this specific situation and what justifications for applying these measures are given by the professionals in

nursing homes. In general, one may distinguish here between official reasons such as the risk of falling, and more implicit “unofficial reasons” such as “fear of the relatives” or “anticipation of legal problems in case of a fall”. Guiding research questions of the study were: how important are these “unofficial reasons” to get to the decision of using physical restraints and how stressful is this for the nursing staff members? Which conclusions do we have to draw for the development of training to reduce physical restraints? Method: In this study, which was carried out in November 2009, 10 nursing homes in Luxembourg were involved. A questionnaire was distributed to 886 nursing workers and to 35 management members of nursing home units. A total of 27.1% of the nursing workers and 51.4% of the management replied to the questionnaire and this comparatively high response rate shows the importance of the subject for professional care givers. Results: Data analysis showed that a comparatively high rate of nursing home residents in Luxembourg (53.5%) is concerned by physical restraints. Moreover, a total of 61.8% receive psychopharmaceutical drugs, and 42.7% of the residents live in “locked” units. Concerning the reasons for applying physical and other restraints, 50.9% of the nursing staff members reported that they use physical restraints out of fear of the relatives; altogether 43.3% reported fear of legal problems – thus preferring implicit unofficial reasons in decision making. The study also showed that many nursing workers evaluated specific kinds of physical restraints not as a limitation of the individual freedom of the elderly person: thus, 37.1 % did not consider bedrails as a physical restraint. Furthermore, 25.4% of the respondents indicated that waist belts are no physical restraints and 47.3% had the same evaluation regarding chair tables. Conclusion: Results indicate that the issue of physical and other restraints still may be considered as a social and legal taboo involving a high rate of psychological stress for the nursing staff members. Training to reduce physical restraints should not only offer possibilities to reduce e.g. fall risk but also include a discussion about the rights of elderly people with dementia and the fundamental value of individual freedom. The importance of the “unofficial” implicit reasons in decision making should be given special emphasis.

Friday, 1 October – 14.00-15.30 (Blue Room) Education and training P6.1. A step out – the practical and social importance of training for people with dementia and their caregivers

Carmen Sinner, Association Luxembourg Alzheimer, Luxembourg, [email protected] Mireille Elsen, Association Luxembourg Alzheimer, Luxembourg, [email protected] This presentation reflects our own experience with the training programme which has been offered to caregivers since 2000 and continuously improved considerably. The aim of the programme is

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that caregivers are given a structured tutorial on how to disburden everyday life. A second but not to be neglected and sometimes more crucial aim of this training is that the caregivers can find a place where they feel confident to ask questions, give and get tips adequate for everyday use. Not only the needs from their loved one are reflected but recognizing one’s individual limits and, even more essential, accepting them to maintain a certain level of emotional well-being, requisite for a non-technical but affectionate care is the central ubiquitous theme. Pangs of remorse, sense of guilt, annoyance, thoughts of renounc­ing, etc. are shared with the other participants (partner, child or friend) and the obvious new experience of not being accused to overstate or affronted to incomprehension but to find understanding and information exchange. Using the mixture of theoretical knowledge and practicable hints from professionals and the caregivers, the curriculum includes, after giving a global overview of dementia, the following topics reflecting the problems and challenges people with dementia and caregiver face daily: • problems with orientation • communication • psychological changes • physiological changes • nutrition and drinking • pay attention to one’s own physical and mental health • practical information about care insurance and legal facilities Certainly our programme does not claim to be complete. But the depiction from the participants of the training programme lets us conclude that knowing about dementia does not make it easier for both, person with dementia and relative caregiver, but the experience of not being alone and getting to know the thitherto unknown feeling to be more confident by acquiring more resources will certainly contribute towards breaking the taboo of the topic of dementia.

Mark the dates! 21st Alzheimer Europe Conference European Solidarity without borders Warsaw 6-8 October 2011 P6.2. Moving beyond training: a psychoeducational programme for formal caregivers of elderly with dementia

Joana Cruz1, Ana Barbosa2, Álvaro Mendes3, Alda Marques4, Daniela Figueiredo5, Liliana Sousa6 1 Department of Health Sciences, University of Aveiro, Portugal, [email protected] 2 Department of Health Sciences, University of Aveiro, Portugal, [email protected] 3 Department of Health Sciences, University of Aveiro, Portugal,

[email protected] School of Health Sciences, University of Aveiro, Portugal, [email protected] 5 School of Health Sciences, University of Aveiro, Unidade de Investigação e Formação sobre Adultos e Idosos (UnIFai), Portugal, [email protected] 6 Department of Health Sciences, University of Aveiro, Unidade de Investigação e Formação sobre Adultos e Idosos (UnIFai), Portugal, [email protected] 4

Background and objectives: Behavioural and psychological symptoms of people with dementia (BPSD) have been identified to be closely related with high levels of stress and burnout among formal caregivers in residential care settings. Significant intervention training programmes have been conducted in the last decade aiming to teach and train staff in managing BPSD. However, these studies failed to address the psychological distress associated with it. Psychoeducational approaches can provide positive contributions because they respond to both educational and supportive needs of formal caregivers. In this study a psychoeducational programme for formal caregivers of older people with dementia living in residential care facilities was developed, implemented and evaluated. Methods: A psychoeducational programme was designed based on the literature and on the results from a focus group interview about the perceived needs and expectations of the potential beneficiaries. The programme is brief and structured, consisting of 8 psychoeducational sessions of 90 minutes each, one every two weeks, during 4 months. It was implemented in a residential care facility for 6 female formal caregivers (average age=40 years old, SD=11.92). The impact of the programme on participants’ attitudes and care provision was evaluated by a focus group interview, immediately after the programme. The interview was video-recorded, transcribed and submitted to content analysis by 4 independent judges. Results: Caregivers reported a number of benefits from their participation in the programme, such as: i) acquisition of knowledge about dementia; ii) enhancing person-centred skills for dementia care; iii) application of acquired knowledge in care provision; iv) sharing experiences about the difficulties and the stress related with their job; v) acquisition of problem solving skills and vi) awareness of the importance of relaxation techniques. The lack of time was highlighted as the major limitation to participate in the programme. Discussion and conclusions: The findings suggest that psycho­ educational programs targeted to formal caregivers of people with dementia can have a significant impact on caregivers’ sense of mastery and self-competency and, therefore may improve the quality of care. It highlights the need to develop further programmes in residential care facilities that provide formal caregivers not only with information and dementia care skills, but also with support to help deal with stress and burnout associated to dementia care.

Facing dementia together / Luxembourg 2010 Final programme

P6.3. Education and training of Family caregivers: A major challenge for France Alzheimer

Judith Mollard, France Alzheimer, France, [email protected] Lyne Valentino, France Alzheimer, France, [email protected] Training family caregivers is at the heart of the actions organised by France Alzheimer and is an important part of the support necessary to help the family caregiver who accompanies the person with dementia. This action comes within the framework of measure 2 of the Alzheimer plan of 2008-2012. It is supported by the State and the CNSA thanks to a financing agreement which places France Alzhei­mer as the main actor to achieve this national objective. This action of support to family caregivers is essential and comes within the helping process of family caregivers. It allows them to become more competent, to find solutions to the problems they meet and to give sense to their commitment with their relative with dementia. The training organisation: The training is provided by two trainers: an expert psychologist and a trained volunteer of the departmental association of France Alzheimer. This co-animation aims at feeding the contributions of the knowledge of the professional by the practical experience of the voluntary person and at bringing a complementary point of view on the approach of the situations. It also allows to follow the progress of the participating families by inviting them after the training to keep in touch with the nearest association and by answering the individual problems of the participants. The training lasts 14 hours. It is composed of 5 different modules: • Knowing Alzheimer’s disease • The possible forms of assistance • Daily caring • Understanding the person with dementia • What it is to be a family caregiver? The contents of the training: The training brings the essential tools to understand the difficulties of the person with dementia (module 1), information on the systems of help and support (module 2), the adaptation of caring to everyday life (module 3), the preservation of the relationship with the person with dementia (module 4), and the necessity to take some time off (module 5). The training goes beyond information. From contributions of knowledge and practical information, it must allow every participant to act on his(her) own representations, attitudes and behaviour, and so to widen his(her) field of answers in the situations which he(she) has to face. It values the involvement of the family caregiver, the quality of his(her) action and so allows him(her) to identify in a better way the limits of the relationship in which he(she) is involved.

Very satisfied participants: The assessment of the numerous training sessions led so far shows a great satisfaction of the participants, who mainly appreciate being able to exchange their experiences. Among the main profits, the participants mention in order: the improvement of their knowledge of the disease, a better identification of the available aids, the development of a better relationship with the person with dementia, an increase in the capacity to take care of the person and to face difficult situations in everyday life. Nearly 90% of the trained participants think that the training is going to influence their approach towards the person with dementia. P6.4. Improving skills through regular supervision of a group of home carers

Beatrice SURBER, Social worker, coordinator of the programme “Support for family carers – Accompanying persons for people with dementia”, Pro Senectute – Rue de la Maladière 4, 1205 Geneva, Switzerland, [email protected] From the start of the programme, in October 2002, as a “joint venture” of the Alzheimer Association Geneva, Pro Senectute and the Geneva Red Cross, it was clear that success and recognition had to be based on reliable and specifically trained semi-professional carers, employed as “accompanying persons” to offer a few hours a week of respite to family carers. Educational follow-up is a strength of this service. Seven years of practice have shown that, after the initial training, monthly supervision – in two groups – is essential to get a sense of belonging to the group (as it is a one-to-one activity), receive supportive guidance about emotions, feelings, share very accurate and first-hand knowledge about how dementia can affect persons, but above all, how rewarding creativity, humor and empathy can be. In good company and with an experienced approach, a person with dementia can build up trust, confidence, try again former abilities or explore new experiences, in a reassuring setting. The group of home carers, some 35 persons now, need monitoring when difficulties arise, when the heartbreak of deterioration becomes obvious, after weeks and months or even years of faithful accompanying by the same person, or when the nursing home has become inevitable. Death of the person they cared for is also sadly felt and they need support to come to terms with loss. In this presentation, some examples of themes debated during these supervisions, with the qualified and very experienced psychologist in charge of the sessions and active participation of the home carers (they also learn from each other), as well as some real life “adventures” that happened during accompanied outings and which needed “debriefing” to learn from them, will be discussed. All the participants benefit immensely from these sometimes intense exchanges, and this regular continuous training over a long period of time gives them that specific “Alzheimer touch”, a subtle

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knowledge that can only be acquired by interacting with many different persons with dementia and their family carers.

Friday, 1 October – 14.00-15.30 (Yellow Room) Supporting and involving people with dementia (1) P7.1. Involving people with dementia in the development of information materials

Josine van der Poel, Alzheimer Nederland, section Help & Information, Postbus 183, 3980 CD Bunnik, The Netherlands, [email protected] In the past years Alzheimer Nederland has experienced with the input of people with dementia in the development of information materials and in discussing their need for support. Last year we published our brochure “Dementie … Wat nu?” (Dementia … And now?) for people with dementia and their carers. The rough draft of the text was criticised by a man with Alzheimer’s disease. Our brochure about frontotemporal dementia was revised two years ago. Here a man with FTD has read an early draft. He used to be an artist and made some cartoons for the brochure too. Starting with the so-called Kopgroepen, where people with dementia talk about several themes, we now are developing an advocacy group which has four members today. One of them, accompanied by his wife, took part in a discussion about the need for information and support by people with dementia concerning their legal protection. P7.2. The physical effects of dementia

Martin Sewell, David Batchelor, James McKillop, Scottish Dementia Working Group, [email protected] The Scottish Dementia Working Group is a campaigning and awareness-raising group whose members all have a diagnosis of dementia. Through our presentation we aim to highlight some of the physical effects of dementia that are often little understood or completely overlooked, but that can have a significant impact on people’s lives. In particular, we will look at the effects of fatigue and of visual difficulties. The latter is an emerging issue and knowledge is growing − it would now appear that visual difficulties and sight loss affect a far greater number of people with dementia than was previously estimated. Visual difficulties can heighten the impact of dementia, causing depression, fear and frustration, increasing confusion and isolation. We will first show a 10 minute exert from our new training DVD followed by a brief presentation, leaving time for discussion and questions at the end. P7.3. The video blog alzheimercafe.be – Giving a voice and a face to people with dementia

Aude Dion, Communication Officer at La Ligue Alzheimer ASBL rue Montagne Sainte-Walburge, 4B, B-4000 Liège, Belgium, [email protected]

Background: Nowadays people with dementia usually do not have their say in talks and debates on their condition. It still seems difficult to listen to them and to believe them because they tend to swing between sense and irrationality. The video blog alzheimercafe.be claims to be a place where they can express themselves without being stigmatised or even labelled as “people with dementia”. It constitutes a media entirely dedicated to them. The blog: The project: The blog’s editorial strategy mainly rests upon visual elements (videos, pictures…). An image (whether it moves – video – or not – picture) can sometimes tell us more than a long speech. The video clips are thus the core elements of alzheimercafe.be. Ethical issues constitute an essential part of the project: only people who gave their approval are filmed and we make a point of honour to protect their dignity. The blog is also composed of written posts (news about dementia, agenda of our association’s activities, practical information…). Users can leave their comments on each post. The Alzheimer Cafés: Most video clips are filmed during our Alzhei­ mer Cafés. These cafés offer convivial meeting point for people with dementia, their families, carers and anyone who has an interest in Alzheimer’s disease by offering the opportunity to chat in informal surroundings about the disease and about living with the disease. Currently there are more than 20 cafés held each month throughout the French-speaking community of Belgium. Examples of the video clips will be broadcast during the conference. The blog’s objectives are: • To give a voice and a face to people with dementia. • To conduct a sensitisation and dissemination work towards the greater public. We seek to give another public image of the disease. This objective is achieved through an innovative way and from another point of view. • To be a place where people with dementia and their carers can express themselves. • To give updated information about dementia. • To break taboos and isolation. P7.4. The agency of everyday life of people with dementia living alone

Elisa Virkola, Age Institute, Asemapäällikönkatu 7, 00520 Helsinki, Finland, [email protected] Due to demographic ageing the number of people with dementia living alone is growing, but their activities in everyday life are a little researched area. In my dissertation in social gerontology I study the agency of people with dementia in everyday life. The subjects are 70-95 years old women who live alone in the centre of Helsinki. By investigating individual cases I concentrate on how their agency is constructed in various action situations in everyday life, at home and outside the home. I focus on activities that subjects themselves value including various routines. By agency I refer to theories that focus on interaction between older people’s action and structures. Agency is built up situationally and locally during activities where

Facing dementia together / Luxembourg 2010 Final programme

people make choices framed by societal and environmental structures. The data collection has started at the Age Institute in a project called Seniors in the City. I use ethnographic methods, interviewing people with dementia about their experiences of their everyday activities and living environment. In addition, I observe various action situations with a collaborative approach: I will act together with the subjects. The data will be gathered during a period of at least two years. This will make it possible to observe whether there are any changes in the person’s everyday life over time. The study of agency in everyday life requires an approach with multiple perspectives and various methods. In this presentation I focus on the methodological and ethical challenges concerning the research conducted in the everyday life of older people with dementia who live alone. The home environment sets its own limitations to research. The research process requires an ongoing negotiation and between the researcher and the subject.

Friday, 1 October – 14.00-15.30 (Green Room) Organisation and financing of care P8.1. Informal care received by people with dementia aged 75 years and older: empirical evidence from the French National Survey Handicap-Santé Ménages 2008

A. Paraponaris 1, 2, 3, G. Taché 1, 3, B. Davin 1, 3 1 INSERM, UMR 912 (SE4S), Marseille, France 2 Université Aix Marseille, IRD, Marseille, France 3 ORS PACA, Observatoire Régional de la Santé Provence Alpes Côte d’Azur, France Background: In France, the majority of people with dementia live in the community. Dementia is often associated with a progressive loss of autonomy in activities of daily living. Thus, most of those people receive informal care, whose features mainly remain unrecognised. The survey Handicap-Santé Ménages was carried out in 2008 by the French National Institute for Statistics and Economic Studies (INSEE) and the French Ministry of Health; it gives valuable insights about that issue. Objective: We measure the need for assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs) faced by people with dementia aged 75 years and over. A description of human care received to perform these activities is also done. We focus on informal caregivers and the impact of caregiving on carers’ lives. Then, we compare the care received by people with dementia with that received by people who need personal assistance but do not have dementia. Materials and methods: The sample is made of 4,678 people aged 75 years and older including 513 persons with dementia. Among them, 2,276 persons (480 individuals with dementia and 1,796 individuals with no dementia) reported needing help with at least one ADL or IADL. People in those two subsamples have been matched with the Propensity Score Matching method, using a logit link

function, and controlling for observable heterogeneity due to differences in some socio-demographic characteristics. Comparison tests about the structure and the care hours received by the two populations have been computed. Results: About two thirds of people with dementia aged 75 years and older need human assistance for ADLs and more than 90% for IADLs. Among them, more than 80% receive informal care. Most carers are spouses and daughters. Whereas husbands and wives are retired, daughters are often employed, which frequently implies work arrangements: two thirds of working informal carers have arranged their working time with flexible scheduling and reduced working hours. A third of the carers living with people with dementia spend up to 3 hours a day giving care, and two thirds spend from 4 to 12 hours a day. As far as carers who do not live with people with dementia are concerned, 80% spend up to 3 hours a day helping for ADLs and IADLs. People aged 75 years and older with dementia receive significantly more care hours in a week than their counterparts without dementia. Conclusion: Care to people with dementia requires extended time that informal carers have to devote to their relatives with dementia. For working carers, it often includes working time arrangements and rescheduling, which can be deleterious for the professional earnings and career and, more generally, for health and quality of life. Informal caregivers obviously need to be supported and among them, working carers ought to benefit from legal and compensated arrangements of working conditions. P8.2. People with dementia and care insurance in Luxembourg – Survey after more than five years

Dr. med. JC Leners et al. Since 2000 care insurance is guaranteed for all people living in Luxembourg. At the beginning it was not clear if this new law would also allow people with dementia to get the same amount of care as persons suffering from a physical disease. As more than 10,000 persons have been evaluated over ten years, any kind of dementia is the second highest percentage of medical diagnosis for care insurance (20%), only topped by osteoarthritis and related diseases. Looking more in detail the results over the last years, we may see that the total amount of hours allocated for persons with dementia is nearly 29 hours per week and largely above the mean average for all persons evaluated. We will relate the fundamental differences since the law changed in 2007 in respect to people with dementia and again in 2009 for palliative care. Even if 60 % of persons with a type of dementia are living in institutions, we can prove by statistical data that a higher percentage of people with this disease is living nowadays at home compared to the year 2000. The details for this change

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of paradigm will be analysed. More than 2/3 of the hours allocated by care insurance are indeed for activities of support; compared to persons with psychiatric diseases, this amount is 50% higher for people with dementia. Quality management over the last years has shown that the hours of support allocated must be in relation to the activities of daily living. Data of two different types of nursing homes: a general one and one specialized in care for persons with dementia will be shown in order to understand the different philosophies of care in the general context of a compulsory care insurance in Luxembourg. As for the research in Luxembourg in this field, we can summarize some preliminary data of the only and unique project related to the prevalence and incidence of mild cognitive impairment. P8.3. European health and social care and welfare systems for persons with dementia

Staffan Karlsson, PhD, MSc, RNT, Senior Lecturer1, Gabriele Meyer, PhD, RN, Professor2, Ulla Melin Emilsson, PhD in Social Work, MSc, Professor3, Ingalill Rahm Hallberg, PhD, RNT, Professor4 writing on behalf of the RightTimePlaceCare Consortium (EU, 7th Framework Programme, Contract Number: 242153) 1 The Swedish institute for Health Sciences, Lund University, Sweden, [email protected] 2 Institute of Nursing Science, Witten/Herdecke University, Witten, Germany, [email protected] 3 School of Social Work, Lund University, Sweden, [email protected] 4 The Swedish institute for Health Sciences, Lund University, Sweden, [email protected] The care for persons with dementia is involving a diversity of social and health care interventions. The systems for dementia care and services vary across European countries. However, there is a lack of knowledge about the complex system for dementia care on a European level. A more comprehensive view of dementia care provision in Europe may provide knowledge that can serve as a basis for the development of best practice in the care for persons with dementia. The objective of the study is to describe and analyse the European health and social care and welfare systems, advocacy and informal caregiver support systems for people with dementia. The presentation will focus on how data will be collected and how collaboration within the consortium will be performed. A consortium including members from eight European countries is invited in the study. The research teams that will collect the data represent Estonia, Finland, France, Germany, Netherlands, Spain, Sweden and United Kingdom. The Swedish research team coordinates the study. The consortium members will review a suggested terminology for overall issues regarding the care system for people with dementia as well as national directives and financing. Further, data will comprise the terminology regarding descriptions of stages

in the dementia trajectory, types of care provided and care providers. From this process, an overall agreement on the meaning of relevant terminology is going to be obtained, and this will make it possible to describe the health and social care system for older persons with dementia in a European perspective. A developed template will be used to collect data regarding health and social care and welfare system from each country included in the study. P8.4. Outcomes COGNOS study – Care for people with cognitive dysfunction – A Belgian national observational study

Mets T. 1, Albert A. 2, De Deyn P.P. 3, De Lepeleire J. 4, Ivanoiu A. 5, Pals P. 6, Vandewoude M. 7, Ventura M. 8, Seghers A. 9 1 VUB Brussels, Belgium, [email protected] 2 UCL Liège, Belgium, [email protected] 3 AZ Middelheim Antwerp, Belgium, [email protected] 4 KUL Leuven, Belgium, [email protected] 5 UCL Brussels, Belgium, [email protected] 6 AZ St-Maarten Duffel, Belgium, [email protected] 7 ACZ Antwerp, Belgium, [email protected] 8 ghdc Charleroi, Belgium, [email protected] 9 Pfizer Brussels, Belgium, [email protected] Objective: The COGNOS study aims at documenting the diagnostic, therapeutic and care management of a cohort of patients diagnosed with Alzheimer’s disease (AD) in specialised care setting. It focuses on the content and implementation of “the care plan”, which is requested for the reimbursement procedure for cholinesterase inhibitors in Belgium. Material and Method: COGNOS is a study in community dwelling patients newly diagnosed with AD, with data collection amongst geriatricians/neurologists and patients/caregivers. Data collection for physicians consisted of the completion of an electronic CRF at baseline and one at the follow-up visit, planned 6 months after inclusion in the care programme for reimbursement of cholinesterase inhibitors. Data collection for patients, with/ without help of a caregiver, consisted of the completion of a paper questionnaire at baseline and at follow-up. Final Results: A total of 85 investigators enrolled 720 patients of whom 439 completed the questionnaire. Of 452 patients at the follow-up visit, 243 completed the second questionnaire. Age in geriatric care (81.3 years) was higher than in neurological care (78.6 years). At follow-up, 13.7% of initially enrolled patients were institutionalized. At enrolment 89.8% of patients were accompanied, 35.9% by a child, 54.3% by a spouse/partner. The main reason for first consultation was cognitive problems in geriatric care (81.6%) as well as in neurological care (88.8%). However in geriatric care, functional (30.9%) and behavioural (31.6%) problems were twice as common as in neurological care. Eleven percent of patients presented with an MMSE score 26. Overall scores of cognitive tests remained

Facing dementia together / Luxembourg 2010 Final programme

the same at follow-up. The time period between first consultation and actual diagnosis of AD was 24 days (median). Seventy percent of patients received cholinesterase inhibitors after AD diagnosis. Perception of life was significantly higher at follow-up. Help with ADL and professional help were judged significantly better at follow-up. Conclusion: The COGNOS study demonstrates that measures taken by the governmental institution to provide reimbursement for specific medication (for example requesting a “specific and individualized care plan”) can lead to better, holistic care of a patient.

Saturday, 2 October – 11.00-12.00 (Red Room) Innovative care services and approaches (2) P9.1. ARDEM: an expanding network devoted to people with dementia in a Belgian rural area

Christian Gilles, MD, Centre Hospitalier de l’Ardenne, Geriatrics Dpt and Memory Clinic, Libramont, Belgium, [email protected], on behalf of the ARDEM group It is not acceptable that living in the countryside equates with a loss of chance of being properly rescued and treated. The province of Luxembourg is the widest Belgian province. It is sparsely populated and has no big city. The health authority is facing the challenge of providing facilities that are evenly distributed and accessible to all the citizens. The case of dementias goes beyond those common issues. Elderly people who spent all their life in this area remain less well informed of the meaning of cognitive impairment. Because of isolation or because everybody is aware of what happens to the neighbour in small villages, they can be shy of seeking help. On the other hand, fewer skilled professionals are available. It has been emphasized that a diagnosis of dementia is stigmatising and that efforts should be made to keep the patients involved in the social life. Again, such opportunities are less accessible in the countryside than in cities. “ARDEM”, a contraction of “Ardenne” (the region) and “Dementia”, was promoted by the Belgian Ligue Alzheimer in the wake of its 2007 national symposium, held in Libramont. It gathers a range of involved workers (MDs, social workers, nursing home managers, visiting nurses, home services providers, politicians, teaching nurses…) with the goal of covering the unmet needs in the field of dementias. The primary task consists in providing information to laypeople and to professionals who should be involved in the care of patients with dementia. In the first season, we delivered lectures that were all given in the same place. It was unrealistic to expect that people would come from everywhere in the province and, actually, they did not. For the second one, we decided to go to people: each lecture or workshop was given in a different place (most often a resting home or a day care centre). It paid off, with much larger audiences attending the events. The next challenge could be to provide all the lectures to each place visited.

As stated last year, we are currently running a one-year training programme for professionals, dedicated to the snoezelen approach of people with dementia in nursing homes. The next step will be to set up an on-site follow-up service. Last but not least, we are now engaging in fighting stigmatization. Once a diagnosis of dementia has been announced, patients are offered a pharmacological treatment if appropriate, cognitive rehabilitation if available or day-care centre going, and, in the best cases, families are invited to information expression sessions. In any case, they are given a rather passive role and are seen mainly as recipients of what they can be offered. They need all the abovementioned care, but deserve to keep existing outside them as well. Our project is to set up a directory of the existing associations within the province and to ask each to include one or two patients, in order to allow them to be active, in their usual field of activity if possible. We can provide the members of those associations with training about dementia if they request it, but our feeling is that it will not be necessary. Year after year ARDEM is spinning a web of care, help and solidarity around our citizens with dementia. If we cannot (yet) defeat the disease, let’s at least minimize its consequences on their lives. P9.2. Are quality criteria for memory clinics needed? A statement from the European Memory Clinics Association (EMCA)

Matthias W. Riepe1, Andreas U. Monsch2, Michael Rainer3, Gabriela Stoppe4, Gerald Gatterer5, Pasquale Calabrese6, Klaus Fassbender7 1 Division of Mental Health and Old Age Psychiatry, Psychiatry II, Ulm University, Ulm, Germany, [email protected] 2 Memory Clinic, Dept. of Geriatrics, University Hospital Basel, Basel, Switzerland, [email protected] 3 Memory Clinic and the Karl Landsteiner Institut of memory and Alzheimer research, psychiatric department SMZOst, Vienna, Austria, [email protected] 4 University Psychiatric Hospitals, University of Basel, Basel, Switzerland, [email protected] 5 Geriatriezentrum Wienerwald, Neudorf, Austria, [email protected] 6 Dept. of Psychology, University of Basel, and Dept. of Neuropsychology and Behavioral Neurology Lugano, Switzerland, [email protected] 7 Department of Neurology, Saarland University, Homburg, Germany, [email protected] In 2009 the European Memory Clinics Association (EMCA) was founded as a result of the working group of the German-speaking memory clinics. The working group started in Basel (Switzerland) in 1995 and served as an interdisciplinary platform to discuss diagnostic and therapeutic procedures of memory clinics in Austria, Germany, and Switzerland. Meetings with increasing numbers of dementia experts were organized on an almost annual basis. It

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20th Alzheimer Europe Conference 50

Abstracts

helped to promote informal standards in times when awareness towards the increasing prevalence of Alzheimer’s disease and other dementias increased in relevant medical disciplines (Geriatrics, Neurology, Neuropsychology, and Psychiatry). Over the last years the number of memory clinics increased in Austria, Germany, and Switzerland as in many other European Countries. Today, however, diagnostic and therapeutic algorithms seem to diversify, not always for the sake of the patients and proxies. Thus, in July 2009 the European Memory Clinics Association (EMCA) was founded to help organize dementia specialists working in memory clinics or being interested therein. EMCA aims to bundle the experience of discussions over the last 15 years and to develop standards that guarantee the quality of the assessments, advice, treatment and care provided for patients and proxies. It seeks to bridge experience and opinions developed in different medical disciplines (Psychiatry, Neuropsychology, Neurology, and Geriatrics), to promote quality standards, to ease the dialogue with patient organizations, but also to reinforce clinical-based research efforts and related networks. Having started in Austria, Germany, and Switzerland we hope that dementia specialists from memory clinics in other European countries will join this initiative. P9.3. Caring for the carer: Project “Life after care”

A. Efthymiou1, A. Vlachogianni1, M. Starr2, E. Kavanagh3, Dr. L. O’ Sullivan3, Dr. B. Leonardi4, L. Boccaletti5 1 Athens Association of Alzheimer’s Disease and Related Disorders, M. Mousourou 89, Athens, Greece, 11636, [email protected] 2 Carers UK, 20 Great Dover Street, London, SE 1 4LX, [email protected] 3 Care Alliance of Ireland, Coleraine House, Coleraine Street, Dublin 7, Ireland, [email protected] 4 Arco, www.arcopolis.it, [email protected] 5 Sofia societa cooperativa, via Lenin 55, 41012 Carpi, Italy, [email protected] Introduction: Life After Care is a project, funded by the European Programme “Grundtvig”, aimed to explore family carers' transition from caregiving to post-caregiving status and to support their (re) insertion into working or volunteering activities. The project, carried out by a partnership of British, Irish, Italian and Greek NGOs, has realised so far local field work activities and first results are now available. Method: 45 semi-structured interviews have been conducted in Italy and Greece exploring the post-caring experience in terms of attitudes, emotions, coping strategies and detecting skills developed within the caring experience which might be useful in the view of a job re-insertion. Results: The results show that the carers experience of transition from the caring to post- caring status depends on the coping strategies used during the caring period. Carers with positive feelings

towards their role have a better adaptation after the loss of their relative in comparison to those who have had negative attitude. Discussion: Psychoeducational programmes provide carers with coping strategies during care and consequently prepare them for an easier transition to the ex-caring role. Interviews have also shown that carers through caring experience develop a number of transversal competences (especially in the area of problem solving, initiative, empathy) that are worth being enlightened when looking for job reinsertion. P9.4. The savvy caregiver programme – An intervention on family members of Alzheimer patients

Luisa Bartorelli1,2, Silvia Ragni1,2, Stephanie Levi1, Franco Giubilei1,3 Alzheimer Uniti Onlus, Italy, [email protected] 2 Centro Alzheimer Fondazione Roma, Italy, [email protected] 3 Università di Roma “La Sapienza”, Italy, [email protected]

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Introduction: It is well known that giving support to familial care­ givers of people with dementia not only helps the caregivers but also has a favorable impact on the course of the disease and on the quality of life of the entire family nucleus. Alzheimer Uniti Onlus, together with other partners, has experimented with a psychoeducational approach to the caregivers that is effective, accessible and reproducible. Material and method: 74 patients (43 women), with a median age of 78.4 ±7.5 and a diagnosis of probable Alzheimer’s disease according to the NINCDS-ADRDA criteria, were recruited from five centres: the Alzheimer unit of the Fondazione Roma and Alzheimer units in four hospitals. The caregivers of 43 of the patients were included in the psycho-educational course, whereas the caregivers for the remaining 31 patients served as a control group, participating in their usual monthly support groups. The two groups of patients were of similar age (79.1 ±7.3 vs 77.4 ± 7.7) and education (8.8 ± 4.8 vs 9 ± 5). There were also no significant differences in age (57.3 ± 12.4 vs 59.4 ± 13.7) nor education (12.4 ± 3.4 vs 13.1 ± 3.5) between the two groups of caregivers. In general, there were more women in both groups of caregivers (81.4% vs 80.6%). The course took place in six weekly sessions of two hours each, with additional homework. The caregivers were given the Caregiver Manual; the trainers (a geriatrician, a neurologist and a psychologist in each of the five centres) were given the Trainer’s Manual. The caregivers completed a self-evaluation questionnaire before the start of the course (T0); an evaluator administered blind CES-D and NPI to the caregivers as well as the MMSE to the patients. Evaluations were repeated at the end of the course (T1) and after two months (T2). At T1 a questionnaire was also given out to evaluate the course. Results: As expected, no differences were observed in the MMSE of

Facing dementia together / Luxembourg 2010 Final programme

patients in the two groups. The total NPI was significantly reduced in the patients who had caregivers included in the psycho-educational programme (p