Living with dementia magazine June 2010

By Caroline Graty

The Society in Hackney is working with local organisations to develop peer support networks for the borough's minority ethnic communities.

Hackney is one of the most culturally diverse boroughs in London. People from all over the world have made it their home, and more than 100 languages are spoken in the area.

This rich mix of cultures has created a challenge for Alzheimer's Society - how to encourage people in black and minority ethnic (BME) communities to use dementia services.

Julian Lloyd is the Society's locality manager for North East London. Julian says,

'There are some communities we have never been able to access, and we know they are under-represented interms of the numbers of people with dementia getting a diagnosis and support.'

Working closely with local health and social care service commissioners, Julian and his colleagues put together a proposal to the Department of Health. They received funding to establish culturally appropriate peer support networks for people with dementia and carers from different countries and cultures. The project is one of 40 pilot sites (known as demonstrator sites) set up following recommendations in the National Dementia Strategy for England.

Barriers to support

There are several reasons why people with dementia and carers from BME communities often don't receive the help they need. Some communities have no concept of dementia, or believe it is an inevitable part of ageing rather than a disease. Often dementia carries a stigma that deters people from seeking help. And for those who do seek help, language is often a barrier.

In addition, some communities have a strong tradition of looking after older people within extended families. Families will cope with the care of a relative with dementia, often only looking for support when a crisis occurs.

The project's peer support group facilitator Amy Claringbold is working hard to break down some of these barriers. Her approach is to build relationships with local organisations that already provide services within the different communities. Amy says,

'We bring the dementia expertise, they bring the language skills and knowledge of their individual community.'

Ways of working

The backing of key community figures is vital for the project's success. One example of this is within the Muslim community. Amy says,

'I was advised to write a script for the Imam to read out in the mosque, explaining that we wanted to hear from people with memory problems. With the Imam's blessing, it becomes more acceptable for people to come forward.'

Because many people within BME communities know little about dementia, much of Amy's initial work has focused on raising awareness of the illness through talks and workshops. As some languages don't have a word for dementia, or the words they do have carry very negative connotations, Amy is careful to talk about memory loss rather than dementia.

Although still in the early stages, the project is showing the value of tapping into existing networks and tailoring services so that they are sensitive to different cultures.

So far, so good

• The project has formed a Caribbean Memory Group in partnership with the Hackney Caribbean Elderly Organisation, which advised Amy about suitable activities. Amy says,

  'People love talking about the islands where they grew up, so we do a lot of reminiscence and memory exercises and quizzes with a Caribbean theme.'

• In partnership with the North London Muslim Community Centre, Amy is setting up a support group for Asian men. Single sex groups are appropriate for the cultural traditions of the community. In the longer term, Amy aims to establish another group for Asian women.
• Amy has been working with Hackney's Turkish and Kurdish community in partnership with the Alevi Cultural Centre. 'We are setting up a group for people who are worried about their memory to try to encourage them to access the memory clinic. We want to get people on the right track towards diagnosis, treatment and support.'
  
• Amy is beginning to build relationships with the Orthodox Jewish community, traditionally a very self-contained community, with a view to co-facilitating a group.