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Dementia and end of life care for black, Asian and minority ethnic communities

Dementia is a growing issue and concern for societies across the world. The number
of people living with dementia worldwide currently stands at 35.6 million, and is
expected to double by 2030, and triple by 2050. Our ageing population means that
dementia will affect an increasing number of people over the coming decades and
represents one of the major health and social care challenges facing the United
Kingdom. Dementia is a progressive life limiting condition; many people who live with
dementia, will die from dementia. Given that dementia is associated with many
distressing symptoms that impact on patients and their families, palliative care lends
itself to caring them.

Key Messages

  • Dementia is recognised as a worldwide health priority. Our ageing
    population means that it will affect an increasing number of people over
    the coming decades. Many people who live with dementia die from
    dementia. According to the WHO, palliative care has two main aims: (i) to
    improve quality of life of patients and families and (ii) to prevent and relieve
    suffering. This is irrespective of disease group. Given that dementia is a
    progressive neurodegenerative, life-limiting disease, palliative care is highly
    appropriate for those who live with it, die with it, and their families.
  • The United Kingdom is now home to many people who categorise
    themselves as being from black, Asian and minority ethnic (BAME) groups.
    They represent one fifth of the total population. There are great variations
    in the concentrations of those from BAME groups in different geographical
    locations, the highest being in London.
  • Demographic ageing means increasing numbers of people from BAME
    communities are getting older. Predictions estimate that by 2026 In
    England and Wales there will be over 1.3 million people from BAME groups
    aged 65+, compared to over half a million in 2001; in 2026 almost half a
    million will be aged 70+ years.
  • Little is known about the relative prevalence of dementia among BAME
    groups, although there is a growing body of evidence that the Black African-
    Caribbean community in the UK has a higher prevalence of vascular
    dementia than other communities.
    Beyond evidence from United States, principally among African-Americans
    and Asian groups, little research has examined the palliative care needs of
    people of BAME groups who are dying with dementia, and their families.
    This research has identified that when compared to white patients, artificial
    nutrition and other life-sustaining treatments were more frequently
    requested by African American and Asian groups, whereas decisions to
    withhold treatment were less common.
  • This absence of UK-based research cannot continue. An epidemiological
    needs assessment must take place to quantify current and future needs of
    BAME groups with dementia at the end of life. Moreover, research must
    examine person-centered needs for palliative and end of life care among
    BAME communities, their knowledge and awareness of palliative care and
    its benefits, the training of health care professionals in cultural
    competence and skilled communication when working with people living
    with, and dying from dementia within different cultural groups, and the
    evaluation of services to identify good practice.
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Author(s): Dr Jonathan Koffman
Publisher: Race Equality Foundation
Publication date: June 2018