Jabeer Butt remembers his mother, then in her 50s, cooking food in large saucepans in the family’s back garden for the hundreds of Indian relatives who came to his wedding: “She was such a strong woman,” he says. Nearing her end decades later she was no longer in control, unable because of the ravages of dementia to decide the time she got up, or the clothes she wore. Everything had been stripped away.
With tears in his eyes, Butt, now the deputy chief executive of the Race Equality Foundation, says: "It would be good to say that it brought people together, but it didn't. It caused arguments, 'You are not doing enough', that sort of thing.
“We need to understand the experiences of families,” he says, speaking at the publication of a report which warns of the crisis ahead for ethnic minorities in the UK – the Irish, the Indians, Pakistanis, Black Caribbeans – from dementia in coming decades.
However, the crisis is particularly acute for the Irish: nearly one-in-three are over 65 – compared with just 8 per cent of Indians; 14 per cent of Black Caribbeans; between just 2 and 4 per cent of Black Africans, who formed later waves of immigration. Equally, immigrants are no longer staying in one-time ghetto communities: Kilburn or Cricklewood for the Irish; or East London for South Asians.
Within a few years, a fifth of the UK’s foreign-born population will live in rural areas, predicts Omar Khan of the Runnymede Trust. “This will not just be something that Tower Hamlets [the East London borough that has the highest population of immigrants in the UK] has to deal with. It will be something that Shropshire has to do, too,” he says.
Again and again, cultural and social barriers worsen an already difficult situation: the Irish are often single, or have long-term illnesses, or both; while Indians, Pakistanis and Chinese are often ashamed, hiding away an afflicted relative. “My mother still refuses to accept that my father has dementia. She refuses to understand his condition and asks me the same questions about why he is behaving the way he is,” one Pakistani carer says. “There is no term for dementia in south Asian languages,” says an all-party House of Commons/ House of Lords report.
'Evil spell'
Dr Shafi Patoli, a coroner whose wife developed early-onset dementia, was questioned by members of his extended family when she began to go to doctors, arguing that he should "get his wife exorcised" instead. Among black Caribbeans, dementia is "too often" equated with mental illness, or worse: "I often hear in my community that somebody has done something to her like cast an evil spell," one black Caribbean care worker said.
Frequently, immigrants of all hues are diagnosed late: because they are reluctant to go to GPs, or are not treated properly when they do. Families who are often reluctant to consider putting parents into care-homes are left struggling to cope.
Once in care, cultural sensitivity – a maligned phrase, perhaps – becomes paramount, since many dementia sufferers lose command of English if it was learned as a second language, while accents also confuse.
Remembering a relative’s final years, one woman told researchers: “She was in tears every day. She was left in a rest-room all day. There was no one to talk to. All the staff and users were white. She felt like a cabbage. She had to conform to the food they served. She was not getting the food that she wanted. They didn’t have halal or vegetarian food, so she started losing weight. ”
