THE FUTURE AGEING OF THE ETHNIC MINORITY POPULATION: ETHNICITY AND DEMENTIA: Jo Moriarty

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1 THE FUTURE AGEING OF THE ETHNIC MINORITY POPULATION: ETHNICITY AND DEMENTIA: Jo Moriarty

2 SUMMARY Why is this an important issue? Effect of changes in UK population Issues affecting people from minority ethnic groups and dementia Awareness Stigma Accessing services Culturally acceptable services Training and workforce development 2

3 BASED ON... Work in progress for Social Care Institute for Excellence Briefing based on gathering main messages from literature Not systematic review Literature retrieved using an agreed protocol 3

4 WORLD ALZHEIMER REPORT If dementia care were a country, it would be the world s 18th largest economy, ranking between Turkey and Indonesia. If it were a company, it would be the world s largest by annual revenue exceeding Wal-Mart (US$ 414 billion) and Exxon Mobil US$ 311 billion) Dementia cost in US $ billions in 2010 compared to company revenue 4

5 IN THEUK... Work for the Alzheimer s Research Trust (Luengo-Fernandez et al, 2010) concluded: Dementia costs the UK economy 23 billion per year That s twice the cost of cancer ( 12 billion per year) Three times the cost of heart disease ( 8 billion per year) and Four times the cost of stroke ( 5 billion) Caring for the 820,000 people with dementia costs the UK economy 27,647 per person per year - more than the UK median salary ( 24,700) However, much more is spent on research into cancer, heart disease and stroke 5

6 FOLLOWING ON FROM NAT... Age profile of the BME population in the UK means that the numbers of almost all BME communities is set to increase and they are likely to become more dispersed across all parts of the UK (Lievesley, 2010) Impact of world events upon migration to the United Kingdom (UK) has meant that there are now new communities such as Iraqis, Afghanis, and Somalis among the older UK population with whom practitioners must engage (Butt, 2005) 6

7 WHY ARE POPULATION CHANGES IMPORTANT? Dementia is age related condition Prevalence roughly doubles every five or so years after age of 65 (Ferri et al, 2005) In Europe <1% aged and 28.5 % aged 90 (Lobo et al, 2000) Prevalence rates of depression among BME older people are broadly similar to those for the White UK population (Shah et al., 2009) Number of BME people with dementia and/or depression will rise especially quickly as first generation migrants enter their 70s and 80s 7

8 IN ADDITION... Image: NHS library Hypertension and heart disease increase risks of developing vascular dementia Evidence that higher rates of vascular dementia exist among Black Caribbean (Adelman 2010; Richards et al, 2000) and Asian older people 8

9 INTER-RELATIONSHIP BETWEEN DIFFERENT FACTORS Stigma Levels of awareness Under representation Service preferences Workforce training and development 9

10 AWARENESS Research suggests lower levels of awareness among BME groups (Adamson, 1999, 2001; La Fontaine et al, 2007; Bowes and Wilkinson 2004; Turner et al, 2005; Purandare et al, 2007) More likely to see symptoms of dementia as normal ageing Impact is severe as means that people tend to present at later stages Fewer opportunities for early intervention Not having the chance to plan for future (advance directives, lasting power of attorney, advance directives Carers may be severely stressed 10

11 STIGMA Stigma is found in all cultures but way it is expressed varies between cultures (Mackenzie, 2006) Context is that public understanding of dementia has improved among White UK population In many South Asian languages there is no equivalent word for dementia Dangers of stereotyping but Stigma appears to be greater among BME communities (La Fontaine et al, 2007, St John, 2004; Seabrooke and Milne, 2004, Mackenzie 2006) Keeping face and concern about what others in the community may think are barriers to seeking help 11

12 ACCESSING SERVICES Consequences of seeing dementia as normal ageing may lead to assumptions that nothing can be done High levels of uncertainty about how to access services and whether they can help (La Fontaine, 2007) Impact of expectations about role of family in support ( traditional caregiver ideology, Lawrence et al, 2008) 12

13 CULTURALLY ACCEPTABLE SERVICES Value of taking a narrative approach (Jutlla and Moreland, 2009) Recognising different stories that individuals have Respite and day services popular (St John, 2004) Preference for communal services? Examples of culturally specific services Housing (Cox, 1998) Day care (St John, 2004) Home care (Snayde and Moriarty, 2009) Advocacy (Advocacy Plus, 2010) 13

14 TRAINING Dangers of cultural stereotyping (Jolley et al, 2009) Recognising that everyone is an individual Cultural competence What does competence look like? Need for staff to know basic words in community languages (for instance, drink, lavatory) (Jolley et al, 2009) Training for GPs repeatedly emphasised (passim!) Issue of culturally appropriate assessment tools (Jolley et al, 2009, St John 2004) 14

15 WORKFORCE DEVELOPMENT Role of link workers (Jolley et al, 2009) Recruiting a diverse group of staff especially those who are bilingual (St John, 2004) Specialist advocacy services 15

16 WAYS OF IMPROVING AWARENESS & UPTAKE Using neutral language ( memory problems, looking after ) (Forbat, 2003) Use of roadshows (Azam, 2007) DVDs and videos (St John, 2004) Creating links with local communities, for instance places of worship (St John, 2004), Mackenzie, 2006, Banerjee et al, 2007) But this may take time (Advocacy Plus, 2010) 16

17 CONCLUSION/DISCUSSION Small local studies high population density Let s move on moments influencing commissioning Recognising common and unique aspects 17

18 IMPACT OF FAMOUS PEOPLE? News that Ronald Reagan had dementia thought to have been very important in raising awareness Dominated by white people Sugar Ray Robinson rare example 18

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