Supporting Black and minority ethnic people with dementia

Supporting black and minority ethnic communities

Jo Moriarty

King’s College London

Westminster Briefing: building dementia friendly communities 2

OutlineFocus on some messages from research that will help us achieve dementia friendly communities for everyone

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‘Everybody’s business’

Clichéd phrase but …Research evidence on

DemographicSocietal changes

These changes have implications for everyone

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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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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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Projected increase in numbers of BAME people with dementia

Series10

50000

100000

150000

200000

2013

2026

2051

25000

50000

172000

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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 communitiesProportionally larger rises in White Other,

Asian Pakistani, Asian Bangladeshi groups 21/11/2013


More dispersed

Historically, most people from black and minority ethnic groups clustered in urban areasLondonMidlandsNorth West

Wohland and colleagues (2010) show that there is a trend towards suburbanisation

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Economic activity

Historically, labour market participation differs by ethnic groupsHigher levels of unemployment or economic inactivity

(broader category)Nazroo and Kapadia (2013) show this is still broadly

trueBUT 79% of Indian women aged 25-49 economically

activeSlightly less than White British and Black Caribbean

women 21/11/2013


Other factors

Patterns of migration mean new and different communitiesSouth Americans in London (MacIlwaine et al, 2011)

Newer populations more clustered around London

Stereotyping about some communitiesHigh proportions of Chinese and Black Caribbean

people living on own, contrary to some perceptions

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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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http://www.scie.org.uk/




Barriers to asking for supportResearch 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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“

”

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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“

”

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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“

”

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

Research suggests that there are different cultural

expectations about caring and asking others for support. This can inhibit people from asking for support

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What helps or would help?Some suggestions about where we could make a difference

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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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Local efforts (1)

Alzheimer’s Society ‘Connecting Communities’ project 8 London boroughs Volunteers help raise

awareness Explain advantages

of early diagnosis21/11/2013


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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“

”

[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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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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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 groupsHow they can they contribute to dementia

challenge?21/11/2013


Disclaimer & thanks

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

21/11/2013

Healthcare

Supporting Black and minority ethnic people with dementia