Dignified ageing for people with dementia and their carers

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Dignified ageing for people with dementia and
their carers

• Stockholm 15 September 2009
• Jean Georges, Executive Director

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Overview

• Alzheimer Europe
• Current challenges
• Care and dignity
• The law and dignity
• Ethical issues and dignity

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Alzheimer Europe
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Alzheimer Europe

• 34 member organisations in 30 European countries

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AE Mission

• Promoting the dignity, respect and
  self-determination of the person with dementia
  and his/her family throughout the course of the
  disease
• Changing perceptions, policy and practice in
  order to improve the access by people with
  dementia and their carers to treatment options
  and care services

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Current challenges
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Early diagnosis
 Inequalities in dementia care across Europe
An Agenda for change  in International Journal
of Clinical Practice, March 2005, Volume 59,
Supplement 146
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Disclosure of diagnosis
Alzheimer Europe (2006) Who cares? The state of
dementia care in Europe
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Impact on carers
Alzheimer Europe (2006) Who cares? The state of
dementia care in Europe
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Availability of services
Alzheimer Europe (2006) Who cares? The state of
dementia care in Europe
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Care and dignity
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European Collaboration on Dementia (EuroCoDe)

• Prevalence
• Prevention
• Diagnosis and treatment
• Psycho-social interventions
• Cost of dementia
• Social support systems

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EuroCoDe findings

• Fragmentation of care and support provision
  (rural/urban, private/public/voluntary)
• Difficult system navigation for people with
  dementia and their carers
• Sustainability of services

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EuroCoDe recommendations

• Individualised needs assessment and case
  management
• Services and support aimed at maintaining
  autonomy and dignity
• Respect for wishes and individuality of each
  person
• Consultation of and information to people with
  dementia
• Development of palliative care for people with
  dementia

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EuroCoDe - Best practices

• Alzheimer Cafés (Netherlands)
• Alternative living arrangements
  Wohngemeinschaften (Germany)
• Home based respite care (France)
• Outreach programmes for rural areas Memory
  clinic bus (Norway)

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The law and dignity
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Lawnet

• Inventory of national legislation with regard to
• Consent and health care decision making
• Proxy decision making mechanisms
• Restrictions of freedom
• Update of reports

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Lawnet findings

• Variations between countries
• Incapacity and guardianship systems outdated in
  some countries
• Influence of Council of Europe on
• Restriction of freedom and coercive measures
• Consent and treatment
• Consent and research

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Lawnet recommendations

• Disclosure of diagnosis
• Advance directives and appointment of guardian
• Incapacity should not be an all or nothing
  concept
• Non-voluntary placement for treatment should
  involve a formal process
• Personal advocates for persons under restrictions
  of freedom
• Guidelines on the use of coercive measures (last
  resort)

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Ethical issues and dignity
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Current situation

• Ethical challenges in every day life for family
  carers, professional caregivers and health
  professionals
• Cultural and religious differences in ethical
  answers
• Possible differences between nationalities and
  professions

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Aim of project

• Development of a European Dementia Ethics Network
• Reference library for ethical positions and
  recommendations
• Promotion of dialogue on ethical questions and
  where possible development of consensual
  positions or recommendations
• Support for carers and health care professionals
  faced with ethical questions

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Structure of Network

• Dementia Ethics Secretariat
• Ethics Advisory Board
• National Ethics Correspondents

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Secretariat

• Collection of relevant positions and documents
• Literature search on priority areas
• Update and maintain website

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Ethics Advisory Board

• Multinational and multidisciplinary
• Provision of information on interesting
  literature and ethical positions
• Determination of priority areas for network

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National Correspondents

• Up-to-date list of national experts maintained by
  network secretariat
• Participation and contribution to ethical
  reflexions

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Acknowledgements

• German Ministry of Health
• European Commission

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For more informationwww.alzheimer-europe.orgwww.
dementia-in-europe.eu