Transcript Document

Societal attitudes towards
Alzheimer’s and dementia
• What is Alzheimer’s Disease
International?
• Societal attitudes
• Stigma report 2012
• Solutions and Agenda for the future
About Alzheimer’s
Disease International (ADI)
• Established 1984
• The umbrella
organisation of
Alzheimer associations
around the world
• 79 member
associations
Aims to help establish and strengthen Alzheimer
associations throughout the world, and to raise global
awareness about Alzheimer's disease and all other
causes of dementia
ADI Annual International
Conference
• Multidisciplinary event
• Opportunity to share and
gather new information
about research, policy
and dementia care
• Healthcare professionals,
people with dementia,
carers and Alzheimer
association staff and
volunteers
www.alz.co.uk/ADI-conference
2012: London
2013: Taipei
2014: San Juan, Puerto Rico
2015: Perth, Australia
World Alzheimer’s Month
September is World Alzheimer’s Month
21 September is World Alzheimer’s Day
• 2013: A Journey of Caring
• 70 countries participating
• World Alzheimer Report
on journey of care
• Probably 2000 activities
• 2014 Prevention and risk
reduction
• WAD is on a Sunday
www.alz.co.uk/world-alzheimers-month
Alzheimer University
• Training programme
for Alzheimer
associations
• Appropriate and
reliable information for
developing
organisational capacity
• Annual programme for
emerging associations
• Special programmes
on advocacy and
fundraising
Involvement of
People with Dementia
• Involvement in
conference, Alzheimer
University and in
advocacy work
• Stories featured
regularly in
newsletter, Global
Perspective
• Specific position for
person with dementia
on Elected Board
created in 2010
Societal attitudes to dementia
• Different stages in different parts of the world and even
within countries
• Not much research on this topic
• Alzheimer Society UK has done some research with
focus groups, including ethnic minorities
• People feel uncomfortable and hope it will not hurt their
family (avoidance)
• However they feel sympathy for people with dementia
and their families
• ADI did a worldwide survey in 2012 for Stigma report
World Alzheimer Report
Overcoming the stigma of dementia
• Launched 21 September 2012
• Results of international survey
of people with dementia and
carers
• 2,500 responses including 150
people with dementia from 60
countries
• Examples of stigma-reducing
programmes worldwide
• 10 Recommendations
www.alz.co.uk/worldreport
What did we learn from
people with dementia
1. Other people (friends, neighbours, etc.) must
initiate maintaining the relationship
2. Include people with dementia in conversations; ask
the person what is helpful for him/her to be
successful
3. Some people with dementia would like to be asked
about their condition
4. Accommodate to the new level of abilities of the
person
5. They think education and awareness are key to
overcoming stigma
What did we learn from
family caregivers
1. Social exclusion happens to caregivers too
2. Caregivers also feel marginalized
3. There is a tremendous lack of understanding of
what it is like caring for someone with dementia
4. A lot is expected of carers from family, community
and society as a whole with little support available
5. They think education and awareness are key to
overcoming stigma
Stages of Acceptance
Ignoring the
problem
Some awareness
First media
reporting
First caregiver
support
Building
dementia
infrastructure:
Alzheimer
association
Professional
meetings
Training of
caregivers
Advocacy efforts
More established
association
Publication of
data
Developing
professional
guidelines
Policies and
Alzheimer plans
or strategies
Standards of
dementia care
Legal framework
Public health
perspective
Normalisation
Acceptance of
dementia as a
disability
Ignorance
István Kappéter, who has Lewy Body dementia,
Budapest, Hungary:
The best known Hungarian dementia specialist advised (in
a TV program made by the Hungarian Academy of
Sciences) everyone who notices memory problems in
themselves or their loved-ones to keep it quiet, not to tell
anyone, so they don’t become socially stigmatized.
(Quote in World Alzheimer Report 2011)
Building infrastructure
• Alzheimer association activities
• Professional meetings for neurologists,
psychiatrists, geriatricians etc
• Public meetings
• Training of caregivers
• Publications, helpline
• Support of local WHO office, Ministry of Health
Advocacy efforts
•
•
•
•
•
•
Publication of data
Professional guidelines
More established Alzheimer association
Lobby towards Ministry of Health, Parliament
More dedicated brochures, publications
NGOs working together
Policy Agenda
• Policy helps to change attitude (UK)
• Every country should have a national
Alzheimer’s/dementia plan
• Good examples from Australia, Korea, France,
England, Norway etc
• Key issues: raising awareness, early diagnosis,
better caregiver support, care services, workforce
education, research agenda
• Legal framework
• Public health perspective
Main barrier: how the
disease is framed
• Research from Belgium (King Baudoin Foundation)
on how the disease is framed in public and media
• Frames are often very negative: the disease steals
your selfhood; is a mysterious thief
• Science should bring the solution
• People with dementia and caregivers sometimes
use ‘counterframes’: I am more than my illness
• Fundraising dilemma: strong language appeals
better to raise funds
Further information
www.alz.co.uk
[email protected]