Supporting Black and minority ethnic people with dementia
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Presentation highlighting barriers to accessing dementia services for people from black and minority ethnic groups and how improvements can be made
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Supporting Black and minority ethnic people with dementia
- 1. Supporting black and minority ethnic communities Jo Moriarty King’s College London
- 2. Outline Focus on some messages from research that will help us achieve dementia friendly communities for everyone Westminster Briefing: building dementia friendly communities 21/11/2013 2
- 3. ‘Everybody’s business’ Clichéd phrase but … Research evidence on Demographic Societal changes These changes have implications for everyone Westminster Briefing: building dementia friendly communities 21/11/2013 3
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 4
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 5
- 6. Projected increase in numbers of BAME people with dementia 172000 200000 150000 50000 2051 100000 2026 50000 25000 2013 0 Westminster Briefing: building dementia friendly communities 21/11/2013 6
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 7
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 8
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 9
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 10
- 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! Westminster Briefing: building dementia friendly communities 21/11/2013 11
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 12
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 13
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 14
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 15
- 16. What helps or would help? Some suggestions about where we could make a difference Westminster Briefing: building dementia friendly communities 21/11/2013 16
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 17
- 18. Local efforts (1) Alzheimer’s Society ‘Connecting Communities’ project 8 London boroughs Volunteers help raise awareness Explain advantages of early diagnosis Westminster Briefing: building dementia friendly communities 21/11/2013 18
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 19
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 20
- 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’ Westminster Briefing: building dementia friendly communities 21/11/2013 21
- 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? Westminster Briefing: building dementia friendly communities 21/11/2013 22
- 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 Westminster Briefing: building dementia friendly communities 21/11/2013 23