The impact of dementia on the UK African Caribbean Community
David Truswell is the Chair of the Dementia Alliance for Culture and Ethnicity
Introduction
About two thirds of those living with Dementia in the UK are living with Alzheimer’s disease with roughly a further 20% living with vascular dementia. It has been estimated that there are over 25,000 people from Black, Asian and minority ethnic communities living with Dementia in the UK[1]. However, this estimate is based on the assumption that the prevalence of dementia in these communities is the same as that for the White UK indigenous population. There is increasing evidence that the African-Caribbean population in the UK is at higher risk of vascular dementia than the indigenous White population[2]. There is also evidence that the early onset vascular type of dementia is more prevalent in African-Caribbean population[3]. Because of the migration history of the African-Caribbean community to the UK this population is demographically the oldest of those communities defined as ‘Black’ in the UK national Census categories. Researchers have proposed that the raised risk of vascular dementia is linked to the higher risk of hypertension and other lifetime health risks that increase the risk of stroke in this population[4]. Vascular dementia can often be a result of a stroke and develops within 3 months in nearly 25% of all cases of stroke. It has been estimated that by 2051 the number of people living with dementia in Black, Asian and minority ethnic communities will have risen 7-fold compared within estimated doubling in the number in indigenous White population over the same period[5]. What Is rarely understood is that the demographically older minority ethnic communities, the Irish, the South Asian Indian and the African-Caribbean, will bear the brunt of this increase since they have the proportionately largest numbers of older people of all the Census minority ethnic categories[6].
While the clinical evidence base for the increased prevalence of vascular dementia in the African-Caribbean population is steadily gaining acknowledgement, less well understood are the implications this has for policy, service planning and support and the social and cultural consequences for the communities involved. The UK African-Caribbean community is not an homogenous culture. Island identities are an important reference point for many of African-Caribbean descent whether first generation migrants born in the Caribbean or second or third generation migrants who identify their roots with particular islands. Generational distinctions also come into play as many first-generation migrants locate their social and support networks within their local church congregation or African- Caribbean social clubs while the second and third generation offspring often have developed their social and support networks beyond this.
Policy consequences
National dementia strategy and policy guidance in the UK has to date been careful to include a recognition of the needs of people from Black, Asian and minority ethnic backgrounds in planning dementia support and services[7]. This has included recognising the importance of addressing the cultural limitations of some diagnostic tools such as the MMSE (Mini Mental State Examination)[8]. As with many aspects of health and social care policy, implementation of the policy recommendations in regional and local service planning and provision has been fragmented. Ethnicity recording at the primary care level is very variable across England and Wales and key local strategic health needs documents rarely disaggregate their dementia estimates for the older population by census ethnicity.
Service planning and support consequences
Health planners often fail to take account of the fact that the while as a whole when population ages are consolidated the Black, Asian and minority ethnic communities collectively may be on average younger than the indigenous White UK population, the history of migration has led to some significantly different age-related demographic distinctions between these communities. There are also differential risks between communities. While people of African-Caribbean descent are widely distributed across the UK there are a number of locations at a regional level, for example London and Birmingham have significantly African-Caribbean populations, or at a local level; Nottingham, Bristol, Liverpool, and Reading, where the numbers of older African-Caribbean people living with dementia is of sufficient critical mass to warrant a much higher level of dementia planning prioritisation than would currently appear to be the case. In the absence of more stratified population based dementia planning African-Caribbean people living with dementia are more likely to experience an insufficient service response and their family and social networks be less well equipped and less enabled to support them.
Health issues that involve significantly higher risk for the African- Caribbean Community, for example sickle cell (thalassemia) and testicular cancer in men, have a history in the UK of requiring concerted campaigns of health activism over many years to reach a level of broad mainstream practitioner recognition and routine consideration in services. The numbers involved for the African-Caribbean community talking into account the increased risk of early dementia onset in the under-65s and the increased prevalence in those over 65 should be more of a cause for concern for health and social care planning and public health education. Vascular dementia risks can be reduced by lifestyle changes and also better stroke management.
Research consequences
Alzheimer’s research funding is dominated by the pre-occupation with a pharmacological cure for the disease. This leaves much of the work being done with social and psychological approaches focusing on quality of life and quality of care lacking large scale research funding, despite participant testimony from small scale projects indicating significant benefits from these latter approaches. The approaches can be as diverse as structured reminiscence, music, dance, pet therapy, environmental modifications and having children visit care homes.
Both brain research and clinical trials in the pharmacological approach to dementia have very low numbers of people from Black, Asian and minority ethnic communities participating in the research. This means that issues such as adverse side-affects or failures of efficacy in medication due to ethnicity factors remain largely unknown. The tendency for mainstream reports to generalise about dementia research does not help to clarify the fact that the causes of Alzheimer’s disease and vascular dementia are very different.
People of African-Caribbean heritage should be more proactively encouraged to participate in dementia research, especially vascular dementia research as the increased prevalence of this form of dementia in this population could potentially shed fruitful light on management and treatment of this very common form of dementia across all ethnicities. It would also help to build a much better evidence base for the provision of resources targeted at the African-Caribbean community by service planners
Social and cultural consequences
The post-war period in the UK saw a significant surge in African-Caribbean migration to the UK of working age migrants at a time when the average lifespan in the Caribbean was 51.9 years[9]. Personal testimony from migrants of that era indicates that it was very rare that one saw an elderly person with the kind of behavioural problems they would now identify as dementia and such people were socially ostracised. Migration has an impact on cultural expectations of care giving as working age first generation migrants move from what is likely to have been a rural community background with multiple generation households and close relatives living within a short travel distance to family relationships that are dispersed globally and lifestyles that are complex to maintain with multiple commitments. Family carers often struggle to fulfil a sense of obligation when supporting the person living with dementia, unable to share the task with other family members that are too distant and also faced with the multiple other demands of contemporary living.
Dementia is a complex and bewildering illness for both the person living with the condition and the carer, often compounded in its complexity by the fact that an older person living with dementia may have multiple other health issues. Carers, particularly if they are the spouse, may themselves also be older and have their own multiple health issues.
For first-generation migrant African-Caribbean’s in the UK the experience of migration and of coping with the lifetime impact of discrimination reinforces a cultural expectation of endurance and resilience in the face of hardship that makes individuals reluctant to seek help for health problems. This is reinforced in the case of having a mental health problem, which is a common view taken of dementia, by both the potential social stigma of having a mental illness and a concern with being discriminated against by the health and social care service providers. In a culture that highly prizes being ‘strong-minded’ the impact of dementia is devastating and understandably many would wish to avoid recognising the onset in themselves or others. The cultural narrative on asking for help with signs of possible dementia has to shift. One reason for this is that there are other psychological signs that can appear in later life, including memory problems, depression, poor concentration and confused states that can be mistaken for dementia that may be more treatable or managed but remain untreated due to the anxiety that they are signs of dementia and the prospective patient is afraid this will be confirmed.
What help does the African- Caribbean community need with managing to live well with dementia?
While the mainstream media’s increasing discussion of dementia has helped to open up discussion of dementia within the African-Caribbean community, the general picture in the rare research that has been done is people living with dementia from the African-Caribbean community tend to seek help later in the development of the illness and there is almost a folk belief that ‘Black people don’t get dementia so much’[10]. More health education material targeting the African-Caribbean community is essential to encourage people from the community to seek help with the early signs of dementia and a better appreciation of the complex health and social support needs of those living with dementia. It must be recognised that caring for and supporting someone living with dementia means an investment the education and training of family carers to take on this role, rather than the current expectation that it is somehow something carers are able to do ‘naturally’.
Service planners need to recognise that the African-Caribbean community is a ‘high risk’ group for the development of vascular dementia and ensure this enhanced risk is factored into health education and prevention programmes, ethnicity monitoring of flows through referral for diagnosis and diagnosis itself, practitioner training and support for carers. At the detailed level of support for the dementia pathways this must include active steps for case-finding when patient flows show demographic under-representation, facilitating culturally appropriate personal support in a dialogue with the person living with dementia or their representative and enabling a spiritually satisfying transition towards end-of-life care. Where there is an established critical number of people from an African-Caribbean living with dementia and their carers within a locality it would be more effective to establish specialist roles, for example dementia navigators, to support social and health service access rather than leave clinicians simply to learn by experience with every case and the person living with dementia and their family carer(s) placed in the position of acting as the sole cultural teacher for clinician.
[1] House of Commons All-Party Parliamentary Group on Dementia Dementia does not discriminate July 2013 HM Government
[2] Adelman, S, Blanchard, M & Livingston, G, (2009a) A systematic review of the prevalence and covariates of dementia or relative cognitive impairment in the older African-Caribbean population in Britain, International Journal of Geriatric Psychiatry, 24, pp.657–665
[3] Stevens T., Leavey G. and Livingston G. Dementia and hypertension in African/Caribbean elders Age and Ageing 2004; 33: 193–198
[4] Tuerk R, Sauer J. Dementia in a Black and minority ethnic population: characteristics of presentation to an inner London memory service. BJPsych Bulletin. 2015;39(4):162-166. doi:10.1192/pb.bp.114.047753.
[5] ibid
[6] Truswell D. Black and minority ethnic communities and dementia: Where are we now? Better Health Briefing no. 30 November 2013 Race Equality Foundation
[7] Department of Health (2009) Living well with dementia: A National Dementia Strategy Department of Health
[8] Dementia Policy Team Prime Minister’s Challenge on Dementia 2020 Implementation Plan Annex 2: Roadmaps to 2020 Delivery March 2016 Department of Health
[9] Saad P. Demographic Trends in Latin America and the Caribbean paper presented at Workshop on Demographic Change and Social Policy organized by the World Bank and held at its Washington, D.C. headquarters, July 14–15, 2009
[10] Berwald S, Roche M, Adelman S, Mukadam N, Livingston G (2016) Black African and Caribbean British Communities’ Perceptions of Memory Problems: “We Don’t Do Dementia.”. PLoS ONE 11(4): e0151878. doi:10.1371/journal. pone.0151878
