Dementia’s cultural challenge

There are few more reliable gauges of how a society is ageing
than the incidence of dementia. According to the Alzheimer’s
Society, one in 20 over-65s now has the condition; among over-80s
the figure is one in five.

And as demographics change there will be a notable increase in the
number of people from ethnic minorities developing dementia. Many
of these people and their carers will need professional support
from statutory services.

At present little is known about how people from diverse ethnic
backgrounds manage looking after a family member with the
condition. Research has tended to focus on people from
white-British backgrounds, or has not addressed questions of
ethnicity. This has hindered opportunities to develop insights into
how family members from ethnic minorities manage difficulties and
how they negotiate access to services. The Department of Health has
drawn attention to this and has pressed for services to learn from
the experiences of black elders.1

Research, funded by the School of Health and Social Welfare at the
Open University, has focused on people from south Asian or
African-Caribbean backgrounds. Finding people from ethnic
minorities to talk in depth about their experiences was difficult.
To an extent, the difficulties for researchers meeting these people
mimic the barriers that ethnic minority carers and cared-for people
come up against in accessing statutory services.2

By studying carers’ personal accounts and their responses to
fictional situations it has been possible to identify what they
perceive as helpful or unhelpful in their interactions with health
and social services. Members of 14 families spoke about a variety
of difficulties, among them concerns around language and cultural

The case of Mrs H, who used to care for her mother-in-law,
illustrates the pivotal role that social services had in supporting
her 15 years ago. Both women were of Bangladeshi background. Her
mother-in-law spoke only Bengali. Services had only
English-speaking staff.

Mrs H recalls the multiple and complex problems during this time.
She says she received no support or understanding from neighbours,
and that none of her family lived near or wanted to help. “Once
they find that there’s a problem I think they also keep a
distance,” she says. That lack of family support challenges the
oft-held assumption that ethnic minority families “look after their

Input from her social worker became the cornerstone of her support
in caring. Respite was offered but, because none of the staff spoke
Bengali, her mother-in-law was isolated and did not want to go. “I
let it go a couple of times and then I said, no, this is not right
for her, so I just stopped sending her,” said Mrs H.

Despite these reservations over service provision, for the main
part she was satisfied with the help she received. She saw social
services as an essential force in managing difficulties in dementia

The contemporary account of caring from Mrs C also highlights
difficulties in relating to social services.

Mrs C cares for her brother, Sidney. Both are of Jamaican
background and speak English. Mrs C has been her brother’s carer
for many years, and throughout that time has had a lot of contact
with social services, GPs and the Alzheimer’s Society.

Her contact with social services had not been satisfactory, and she
felt let down by them. A catalogue of disputes included: staff not
having a general understanding of the impact of dementia on family
members; continuing clashes over finding an appropriate care home;
and a lack of assistance in applying for attendance

She felt that the social worker was not interested in helping,
which was underpinned by a belief that “the social worker, as I
say, they don’t like Jamaicans”.

She made stark comparisons between the Alzheimer’s Society and
social services: “The woman from the Alzheimer’s Society really
helped me a lot with advice and told me what it was all about, but
I got no help from the social services or anybody else.”

Recently, and with the help of the Alzheimer’s Society, but not
social services, Mrs C found a residential care home that would
meet Sidney’s needs for safe accommodation. She also noted that the
staff seemed more culturally aware, and would respond appropriately
to her brother’s needs. She is now trying to gain a place for

For both women, help from social services was seen as crucial, but
it has to be the right help at the right time. Receiving help that
is mindful of cultural and ethnic diversity is essential. This
means working with staff who are guided more by humanist principles
than cultural stereotypes, who have appropriate language skills,
and who are aware of how it feels to be caring for a relative who
is confused and forgetful.

With prompting from various pieces of research and DoH documents,
it is now up to social services departments to tune into the needs
of carers and cared-for people in order to develop culturally
appropriate services. 

Liz Forbat is research fellow, Centre for Research on
Families and Relationships, Edinburgh University, and Suresh Nar is
a community psychiatric nurse.


1 Department of Health,
They Look After Their Own Don’t They? Inspection of Community
Care Services for Black and Ethnic Minority Older People
London, DoH/Social Services Inspectorate, 1998

2 L Forbat, “Concepts and understandings of dementia by
gatekeepers and minority ethnic service users”, British Journal
of Health Psychology
, 8(3) pp645-655, 2003

3 Department of Health, Carers’
(Recognition and Services) Act 1995, The Stationery Office

Background Reading

For a copy of the full research report contact The Research Office,
SHSW, The Open University, Milton Keynes MK7 6AA. Tel: 01908

Pointers for services

Throughout the interviews, several key messages for statutory
services emerged:

  • Being listened to and understood were crucial for these carers.
    This distinguishes useful from inappropriate contact with services.
    Staff who took time to ask questions and hear complex and long
    stories of how the family were coping were seen as the most
  • Blame culture and risk management made carers wary of telling
    social services when they were experiencing difficulties. Mrs H and
    many other interviewees were keen to emphasise the importance of
    working with staff who were aware of how dementia affected the
    carer too. Looking after someone who is confused and disoriented is
    difficult for both carer and cared-for. In particular carers wished
    for staff to be mindful that many difficulties, such as falls and
    shouting, are associated with the symptoms of the illness.
  • Services need to be aware of the carer’s often isolated
    position and offer them assessments under the Carer’s Act 1995.3
    Carers often gained little help from their families. This was a
    result of a combination of factors – sometimes from not wishing to
    feel that they had coerced relatives into also becoming a carer
    because family members seemed to “disappear” when extra support was
    needed or because they were living too far away. This highlights
    the need to continue challenging the myth that families from ethnic
    minorities wish to “look after their own”.
  • It was crucial that staff thought about the impact of ethnicity
    and culture on services that were provided. Having staff with
    appropriate language skills is only part of the battle; more needs
    to be done to ensure that staff’s own stereotypes do not interfere
    with offering assistance to members of minority communities.
  • Finally, carers said that being kept informed and valued were
    high priorities. Practitioners who returned phone calls and
    responded to requests for help were considered the most affable –
    even if such contact was to say that little could be done at

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