Cultural barriers to dementia care

In the third in our series on dementia, Chris Bond talks to researcher Tim Dlamini who wants to raise awareness of the condition in Black and Minority Ethnic communities.

Tim Dlamini became involved in dementia research work after caring for his grandmother.
Tim Dlamini became involved in dementia research work after caring for his grandmother.

As part of the National Challenge to fight dementia, David Cameron said that by 2020 he wanted England to be “the best country in the world for dementia care and support”.

At its heart was an ambitious programme to improve health and care, create dementia friendly communities and boost dementia research.

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More than one million people have now trained to be Dementia Friends and over 400,000 NHS staff have been trained in supporting people with dementia.

There is concern about dementia levels in BME communities.

Not only that but research spending has doubled in a concerted effort to tackle what has recently overtaken heart disease as the leading cause of death in England and Wales.

There are now more than 850,000 people living with dementia in the UK, at least 25,000 of whom come from Black and Minority Ethnic (BME) communities.

Both figures are increasing but there are concerns that many of the people from BME groups who have dementia receive little or no support, or don’t get diagnosed until they are in the later stages of the disease.

Tim Dlamini is a researcher at the University of Huddersfield and is in the latter stages of a PhD project examining end-of-life care for people with dementia and in particular those from BME communities.

There is concern about dementia levels in BME communities.

Dlamini has conducted focus groups with elderly people in the early stages of the illness, and in-depth interviews with family members caring for a relative with dementia.

He has found that some minority ethnic groups are reluctant to take advantage of the support that is available. “Research has shown that there are differences in how dementia is viewed,” he says.

“In many BME communities, dementia is still seen as a natural part of ageing and not as an illness, so in many cases people do not access the services that are available. Families are left to struggle and try to cope with the situation as best they can.

“Most of the people who participated in the interviews spoke from a lived experience perspective and it appears there are some clear indications that many people dying from dementia may not be receiving personalised care at the end of their lives.

“With no cure for dementia as we stand and a projected increase of dementia in the UK and beyond due to ageing societies, it is very important that we focus on providing quality care that meet the needs of individuals with dementia and their families.”

Dlamini, who originally comes from South Africa, found the prevailing attitude among many BME families is still that they are the ones best equipped to care for relatives and that this leads to reluctance to deal with services that might be seen as culturally insensitive.

But this can have a negative impact on both patient and carer. “It can cause burn out and carer stress and this is when problems can arise. When the health of the carer at home is affected it means the home situation collapses.”

There have been initiatives in local communities to try and raise awareness and encourage people to access existing support services, but these sometimes have to contend with social and cultural barriers.

Dlamini says there is still a stigma around dementia in some communities and a lack of awareness. “If someone is from an African background their view of dementia is slightly different to someone from South Asia and there are some communities where the word ‘dementia’ does not exist, so that’s an issue because if it doesn’t have a name how can someone access the care that they need?”

Dlamini, who moved to the UK in 2002, has his own personal reasons that drive his work. He helped care for his grandmother Esther, who had dementia, and it was this experience that led him to work in dementia care.

“I tried to navigate the system to get quality care for my grandmother so I know that taking care of someone with dementia is a very difficult task.”

His grandmother was a big influence on him when he was younger. “She always stressed the importance of trying to be a good person. She used to say ‘always think about how other people experience you,’ and that for people to give you respect you had to earn it. That was her ethos.”

He admits it was hard to watch her deteriorate and change from the person he knew. “We started to see signs six or seven years earlier but those early signs were seen as normal, people would say, ‘she’s just an old lady, she’s forgetful.’ All those psychological and behavioural manifestations of dementia are often seen as stereotypical views of older people,” he says.

“It was very difficult to see her personality change from this very life-loving lady and to see her physical and mental health gradually crumble. She taught us the importance of being self-reliant and to have those words turned against her was difficult. At times she didn’t recognise family members and that was hard to deal with,” he says.

“Looking back, there were many older people in my community that could have had dementia but people didn’t know what it was.”

As someone who has seen the impact dementia can have, Tim is well aware of the importance of people getting the best possible care, irrespective of their background.

“Dementia does not recognise the boundaries of ethnicity or culture, it affects everybody. Many people who arrived in Britain in the 50s, 60s and 70s are now over the age of 65. We know that dementia is on the increase and we have seen quite a bit of research recently saying there are higher incidents of dementia among some BME communities than in other communities.”

This is backed up by an All-Party Parliamentary Group report on dementia published in 2013. Among its conclusions was that dementia was likely to be more prevalent among Asian and Black Caribbean communities due to high blood pressure, diabetes, stroke and heart disease, which are risk factors for dementia, and more common among these communities.

Dlamini, who has been in Huddersfield for the past six years, wants to see specially-targeted campaigns aimed at our growing BME communities.

“Attention should be turned to recognising that ethnic and cultural differences impact on people’s view of health and the uptake of valuable services,” he says.

He would like to see more tailored health care services rolled out to help those living with the condition. “Many Yorkshire cities are culturally diverse so instead of having one type of service delivered uniformly, we could have something targeted to the needs of different communities.

“Our older population is increasing and so is dementia and at national level and community level we need to make sure people are accessing the dementia services that are out there.”

Dementia impact on minorities

According to an All-Party Parliamentary Group report on dementia, published in 2013, it is estimated that there are more than 25,000 people from black, Asian and other minority ethnic groups in the UK living with dementia.

By 2026 it is thought the numbers will rise to around 50,000 people as the general population ages and it is believed the numbers will triple by 2051.

This is nearly a seven-fold increase in the past 40 years and compares to just a two-fold increase in the numbers of people with dementia across the whole UK population in the same time period.

The latest figures from the Alzheimer’s Society show that 62 per cent of all people with dementia in England have a diagnosis.