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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 awareness.

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 own".

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 care.

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 allowance.

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 him.

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.

References

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 654233.

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 helpful.
• 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 present.