Supporting older people from Black and Minority Ethnic Communities with dementia

1. Supporting older people from Black and Minority Ethnic Communitieswith dementia Maria Parsons London Centre for Dementia Care

2. Ethnicity in the UK • Estimated 8% of the UK population made up of people from BME groups • Population has younger age structure but change on the way as the 60- 64 age group is projected to increase by 15%+ to 2026 • Approximately 11% of BME community aged between 60 -74 is from South Asia, 15% from Africa and Caribbean and 3% from China • 45 % of the UK’s entire minority ethnic population lives in London.Other large BME communities in Manchester, Bradford, Leeds, Leicester, Birmingham and Liverpool

3. London’s diverse population • Between 2006 and 2026, London’s population projected to increase by 803,000 or 10.8% to 8.27 million people • By 2026, BME population will increase to make up 39% of the capital’s total population • White British population will decrease by 5,000 (0.1%). • Largest increases projected in ‘Other’ ethnic group (65.8 %), Chinese (45.9 %) & Pakistani (40.3 %) ethnic groups • Black Caribbean ethnic group projected to increase by 11.5 % - smallest proportional amount • 3 ethnic groups projected to account for over 55% of total population growth to 2026 - residual ‘Other’ (20.7%) Black African (18.5 per cent),and Indian (16.3%). • Boroughs with over 50% BME population by 2016: Harrow, Redbridge, Tower Hamlets, Hounslow, Croydon Ealing, Brent and Newham

4. London’s ethnic elders • Population aged 60 and over projected to increase by over 242,000 in the next 20 years, over 99.6 % of increase due to ageing of BME population • In 2006 London’s BME population aged over 60 was 18.1 per cent. • By 2026 this is projected to be 32.2 %. • Largest increases (16.8 per cent), projected in the 85-89 group although other age groups will experience substantial rises 65-69 (15.8 per cent) and 55-59 (15.6 per cent).

5. Dementia: ethnicity and culture • People with dementia are a heterogeneous group in terms of age, gender, socio economic background, ethnicity and cultural differences • How do these differences influence the manifestation of dementia? • What factors influence individual and family responses? • What assumptions are made about BME communities experience of ageing and dementia?

6. Dementia amongst BME groups • UK: 700,000 people with dementia • Projected to rise by 38% to 940,110 by 2021 & by 154% to 1,735,087 by 2051 • BME population younger age profile • An estimated 11,392 people from BME groups have dementia • 6.1% are under 65 (young onset dementia) compared to 2.2% for the White British population Dementia UK, 2007, Alzheimer’s Society

7. Ethnicity- health risks for dementia • Prevalence of dementia subtypes in particular BME groups linked to enhanced risk • Diabetes type 2 prevalence in the South Asian community six times higher than general population and five times greater in people of Black or African Caribbean origin • Untreated hypertension widely reported in South Asian Indian communities (MRC CFAS, 1996) • Increased obesity in some BME groups linked both to affluent and deprived lifestyles • Stress related to socio economic deprivation • Rates of Vascular dementia higher amongst older people from Africa and the Caribbean

8. Perceptions of dementia • No word for dementia in South Asian communities – nearest word = ‘madness’ dementia perceived as physical illness, ‘act of god’ or normal ageing • Stigmatised in many communities where it is seen as bringing shame to the family given its association with mental illness and person kept hidden e.g. study of UK Cypriots (Papadopoulus et al 2002) • Often mental health is presented somatically I.e. in terms of physical illness • Largely viewed as part of normal ageing and ‘normalised’ as far as possible.

9. Triple Jeopardy • Term used to draw attention to multiple experiences of discrimination • Age • Gender • Ethnicity • Mental Disorder/dementia • ‘Older’ people in BME groups may be chronologically not regarded as ‘old’ ( below State Pension Age) but experiences may mean they ‘present as old.’ Alison Norman, 1972

10. Socio-cultural context of dementia • Not all cultures view dementia as a disease (Downs,2000) • In many dementia is part of continuum of normal ageing • Disease model of dementia adopted in Europe and North America in last half century (Harding and Palfreyman,1997) • Challenged by biologists – plaques and tangles found in almost all people over 65 • Post modern views - Western society is ‘hyper-cognitive’ – assigns low status of those with memory problems (Post,1995) • Traditional societies value wisdom associated with old age and social structures reinforce position of elders

11. Growing old in a second homeland Memories of • Journeys • Settlement • Identity • Jobs and work • Family and Community • Customs • Music • Religion • Prejudice • Discrimination

12. Identity and memory • Life history very important • BUT for a large number of individuals and groups, past memories are negative and traumatic • Need to take this into account in reminiscence activities • Knowledge of events can help • Sensitivity needed to responses • May need more reassurance • Sometimes higher attachment needs Auschwitz and nearby Krakow, Poland

13. Values and attitudes to caring • Female kin provide vast majority of care in BME communities- seen as women’s responsibility rather than distinct or different carer’s role (Godfrey and Thompson, 2001) • Dilworth Anderson (2002) studies of African American’s suggest gendered nature of care • Greek Cypriots – intergenerational reciprocity and obligation • Chinese – care by extended family and community • BUT increasingly economic pressure has led to women (traditional carers) working outside the family home -older relatives with dementia can become more isolated

14. Barriers to seeking help (1) • Negative perception of dementia - stigma • Acceptance of condition • Level of education/literacy • Presentation - somatic illness • Professional/agency beliefs ‘ They look after their own’ • Language • Reliability of interpreters

15. Barriers (2) • Complexity of health and social care systems • Culturally biased diagnosis and assessment tools • Deficits in culturally appropriate home based services – e.g. domiciliary care, respite and sitting services • Residential care – regarded as unacceptable by some BME groups, especially as facilities are mixed sex.

16. How to improve dementia care ?

17. Mainstream or separate development? • Studies suggest that policies that promote equality and diversity and anti discriminatory legislation has not lead to increased use by of mainstream services by BME communities • Many examples of ‘separate development’ especially in housing with care • Increasingly commissioners in London are commissioning services from BME voluntary organisations and local community groups that cater for older people from specific BME groups.

18. Positive support for BME groups • Information in several key local languages and in different media • Funding for locally based low level services (often specifically for BME elders) • POPPS projects • Liaison work/posts to ‘build bridges’ • Some local councils are employing outreach workers to reach isolated individuals/families • Multi cultural projects in local communities • Interpreter services (local council, health trusts and Third Sector)

19. Research and resources • Care Services Improvement Partnership (CSIP)http://olderpeoplesmentalhealth.csip.org.uk/silo/files/bme-report.pdf and other productions • PRAIE research & publications ( including DVDs) • Race Equality Unit • Social Care Institute of Excellence • Grey literature and resources– produced by agencies e.g Alzheimer’s Concern Ealing • Research from bottom up • Need for more comprehensive projects • Commissioners need to know what works

20. National Dementia Strategy • Seems to be ‘colour blind’ • Opportunity to raise awareness of dementia in BME groups - and amongst staff - what would be most effective? • Early diagnosis and intervention – recognition of triple jeopardy hence how to address barriers for BME groups? • Quality of care – what are the key issues for BME groups using generic and specialist services?