A harsh reminder: Ethnic minorities in Britain are more likely to be diagnosed with dementia
It was one in the morning when Mariam Khan noticed a smell of burning, shortly followed by the ear-piercing screech of the smoke alarm.
She dashed downstairs to find her mother Farkhanda standing in the kitchen, oblivious to the black smoke rising from the toaster.
“It was the middle of the night and she was making breakfast and couldn’t understand why I was in such a panic,” said Mariam, laughing softly, though her eyes betrayed the worry and tiredness of what has become everyday life for her as a carer for an elderly person with dementia.
"The social and cultural stigma around mental health within Muslim communities is often perceived as the main barrier towards dementia sufferers and their families seeking a medical diagnosis until they reach a point of crisis"
It was four years ago that Mariam, a mother of two from Glasgow, noticed a change in her mother’s behaviour. “She was becoming more erratic and forgetful.
"At first, I thought it was just old age, but then I realised it was more than that. Then one day, she asked me where my dad was as his tea was getting cold. My dad died ten years ago, but she didn’t realise. I started crying and she was saying go and call dad over and over. That’s when I knew something was wrong.”
Mariam’s mother is just one of a growing number of elderly people in the Muslim community suffering from dementia.
As the first generation of Muslim immigrants grows old in the UK, it is estimated that dementia rates in ethnic minorities will go up sevenfold in the next 30 years, compared to twofold in the white British community.
If current trends in dementia diagnosis continue, there will be around 170,000 people from ethnic backgrounds with dementia.
The steepest increase is expected to be in the South Asian community because of their higher risk of other illnesses, such as heart disease and diabetes, which are linked to dementia.
However, according to a new report by the Alzheimer’s Society, one of the UK’s leading dementia care charities, both the community and current health services are ill-equipped to cope with the growing surge in the number of dementia patients from ethnic minority backgrounds.
The charity warned that the current dementia care crisis is a ticking time bomb which will put additional strain on ailing health services and on families struggling to cope without support.
The social and cultural stigma around mental health within Muslim communities is often perceived as the main barrier to dementia sufferers and their families seeking a medical diagnosis until they reach a point of crisis.
"It’s easy to blame the community, but if you want the community to come forward, you have to be ready for them to arrive for services”
However, the report shows that current dementia care models are failing patients from ethnic backgrounds because of a lack of culturally sensitive services.
Often getting a dementia diagnosis in the first place is more difficult for patients from ethnic minority backgrounds because of the lack of culturally appropriate diagnostic tools.
Basic testing methods used in dementia diagnosis such as questions for testing a patient’s memory will often be Euro-centric and language barriers will not be taken into account.
“There is a lot of victim-blaming on the community which is unfair. The stigma may have been the case in the past, but the new generation is very different and very proactive,” said Dr Karan Jutlla, author of the report.
“However, there are no services which are culturally inclusive and give comfort to their parents, and staff don’t look like them or speak the same language or understand their basic needs. It’s easy to blame the community, but if you want the community to come forward, you have to be ready for them to arrive for services.”
While much has been made about the stigma around dementia in Muslim communities, in many Muslim families, it is not the point of diagnosis where the stigma lies, but in the aftercare.
Often families are left to bear the brunt of care themselves, due to social and cultural expectations around caring for elderly relatives and the majority of the care will predominantly fall on women.
"When people have grown up in a different country, in their minds, they are living in that past, so the present can be a frightening and unfamiliar place"
Often, these women will not have a choice in whether they want to be a carer but are forced to due to social expectations and family pressure. They are left balancing the needs of elderly family members and children and careers, which takes a physical and emotional toll.
This is exacerbated by the stigma around accessing external support such as carers and families who consider care homes will often be ostracised by the community.
“I always had a difficult relationship with my mother-in-law but because my husband is the eldest son, the burden of responsibility fell on us,” said Ameena Masud, a mother of three from Morden, who gave up her job to be a full-time carer.
“I feel like I have lost myself because our lives revolve around her care. I miss my job and friends and I am on edge all the time because I don’t know if she will break something or hurt herself or forget to go to the toilet and make a mess.
“We haven’t been out together as a family for five years now, not even to the supermarket and I can’t remember the last time any of us had a proper night of sleep. Once she locked herself in the loo and we had to call the fire brigade. It takes a huge toll on the whole family, including the children. My son had his GCSE exams and she went into his room at 2 am and switched on the light. My kids can’t have play dates because we don’t know how she will react and her hygiene problems," Ameena continues.
“My in-laws and the community are so judgemental. No matter what I do, in their eyes, it is never enough. Nobody cares that I am tired and lonely and my back hurts from carrying her. We don’t get any help from the rest of the family. They are free to live their lives while I feel like a prisoner facing a life sentence.”
However, it is not just in the community, but there is also sexism in the healthcare system towards female carers.
“There is most definitely pressure on the family to be carers. Patriarchy in our community, but also in services and how women are perceived. What women as carers are going through, around-the-clock care, and face isolation, anxiety and financial burden. Families are not trained so left to fend for themselves. Impact on carers, giving up work, loss of identity, behind closed doors,” Dr Jutla added.
The sexism in the healthcare system is something that Maliha Khan from Portsmouth said she has faced regularly when taking her mother-in-law to hospital appointments.
“There is definitely a shift in attitude towards me compared to my husband," she explains.
“He gets lots of sympathy and information on support services whereas I will get comments about what I am doing wrong like, why didn’t you bring her a change of clothes? when she soils her outfit, even though I did. I definitely feel like there is a lot more scrutiny and judgement from the nurses.”
The report highlights the need for more culturally sensitive services and calls for more research into the role of faith in dementia care.
“When people have grown up in a different country, in their minds, they are living in that past, so the present can be a frightening and unfamiliar place. Often dementia sufferers will revert back to their childhood languages and will not want to eat unfamiliar food," said Dr Jutla.
However, racial or cultural identity isn’t enough. Services also have to take into account the importance of the role of migration journeys in dementia care and need to use the maps of these past journeys to plan future dementia care, she added.
“We need to understand their migration history. For example, the needs of Muslim communities from Pakistan will be different to people from Iran or Tunisia. The Muslim community is not homogenised so where they come from in the world is crucial to their care.”
Ultimately, according to Dr Jutla, what is needed is a cultural shift in both the community but also in healthcare services
“It is all very well for the healthcare system to say we need to come forward, but when we do, they are not ready for us. The data is in your face. We need to make changes now before it is too late.”
Alia Waheed is a freelance journalist specialising in issues affecting Asian women in the UK and the Indian subcontinent.
Follow her on Twitter: @AliaWaheed