2. Outline
Focus on some messages from research that will help us achieve
dementia friendly communities for everyone
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3. ‘Everybody’s business’
Clichéd
phrase but …
Research
evidence on
Demographic
Societal
changes
These
changes have implications for
everyone
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4. All Party Parliamentary Group Inquiry
into experiences of BAME communities
Members drawn from both
Houses
All political parties
Spoke to a range of people
People with dementia &
families
Providers and practitioners
Policymakers
Researchers
Launched July 2013
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5. Report highlighted demographic
changes
We
know that risk of dementia increases with
age
Currently
BAME populations tend to be younger
than White British counterparts but gap is
narrowing
Commissioned
Runnymede Trust to apply
estimates of dementia prevalence to latest
figures from census
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6. Projected increase in numbers of
BAME people with dementia
172000
200000
150000
50000
2051
100000
2026
50000
25000
2013
0
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7. Population ageing
Estimated
seven fold increase in numbers
of BAME older people with dementia
compared with two fold increase in
population as a whole
Increases
vary within different communities
Proportionally
larger rises in White Other, Asian
Pakistani, Asian Bangladeshi groups
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8. More dispersed
Historically,
most people from black and
minority ethnic groups clustered in urban
areas
London
Midlands
North
West
Wohland
and colleagues (2010) show that
there is a trend towards suburbanisation
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9. Economic activity
Historically,
labour market participation
differs by ethnic groups
Higher
levels of unemployment or economic
inactivity (broader category)
Nazroo and Kapadia (2013) show this is still broadly
true
BUT 79% of Indian women aged 25-49 economically
active
Slightly less than White British and Black Caribbean
women
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10. Other factors
Patterns
of migration mean new and different
communities
South
Americans in London (MacIlwaine et al, 2011)
Newer
populations more clustered around
London
Stereotyping about some communities
High
proportions of Chinese and Black Caribbean
people living on own, contrary to some perceptions
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11. Briefing paper for Social Care Institute
for Excellence
Systematic searches of
UK literature
http://www.scie.org.u
k/
Lots
of other dementia
resources!
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12. Barriers to asking for support
Research suggests that black and minority people with dementia are more
likely to access services later and when their dementia is more advanced
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13. “
I think it would be nice if you know like . . .
obviously the family does suffer but you know
the outside people if they’d understand what it
actually was like because some people don’t
understand what dementia is especially in our
religion …
Mackenzie, 2006, p243
”
Research suggests that, on the whole, there are lower levels of
awareness of dementia among people from black and minority ethnic
groups. In some languages there is no word for dementia and the words used
instead may have negative connotations
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14. “
People find it hard; basically, they do not want the
public to know. There are a lot of concerns within our
religion and culture. Dementia: you know most people
think it is not a disease…. So it has a stigma attached to
it. People tend to hide away from facing the facts, that
there are real issues to be dealt with...
Kirit Nayee, APPG report
”
Stigma about dementia exists in all communities but it seems to be more
common in some than others. Raising awareness might help stigma
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15. “
I think, because of Eastern European culture,
everything’s kept within the family, to tell
people outside that family circle or close friends
is not a thing they do. Your private life is your
private life …There’s pride in it as well
Mackenzie, 2006, p239-240
”
expectations
Research suggests that there are different cultural
about
caring and asking others for support. This can inhibit people from asking for
support
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16. What helps or would help?
Some suggestions about where we could make a difference
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17. Awareness raising
Perception that publicity
about famous people with
dementia helps raise
awareness
Meera Syal has become a
‘dementia friend’
APPG suggested we need
an awareness campaign
Do we need different
approaches for different
communities
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18. Local efforts (1)
Alzheimer’s Society
‘Connecting
Communities’ project
8
London boroughs
Volunteers
help raise
awareness
Explain
advantages of
early diagnosis
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19. Local efforts (2)
Small project for Age UK on diverse and accessible
services
Interviewed
range of staff in different parts of country
Issue in rural areas was challenge of providing
culturally specific services
Role of ‘outreach’ workers – dementia identified as
important emerging issue
Activities ranged from door knocking, working with
established community groups, meetings with outside
speakers
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20. “
[BAME carers] role is not just to the
service user that they're looking after, it
also extends to other members of the
family. So [instead of a] structured carers
group….that's why we've had to put in the
drop-in session
(Worker22)
”
NIHR SSCR funded project on social care practice with carers – examples of
outreach workers working with different communities
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21. Training
Deliberately focused on
areas with
comparatively few BAME
people
Strong theme among
practitioners was how
unskilled they felt
Fear of ‘saying the wrong
thing’
Not ‘meeting needs’
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22. In summary!
Need
to think about where work on
dementia friendly communities needs to be
tailored
Already have a workforce working with
people from black and minority ethnic
groups
How
they can they contribute to dementia
challenge?
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23. SCWRU acknowledges funding from
the Department of Health Policy
Research Programme. The views
expressed here are those of the
authors and not the Department of
Health
Disclaimer & thanks
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