Thousands of south Asian people with dementia are being failed by outdated health and care services designed for white British patients, according to an alarming review that warns the UK is “woefully unprepared” to cope with a predicted sevenfold increase in cases.
People of south Asian heritage in the UK are more likely to develop the disease than the general population due to their higher risk of other illnesses, such as heart disease, stroke and diabetes, that increase the risk of dementia.
The number of them living with dementia is set to increase by 600% within the next three decades.
But the largest ever review of their standards of care, seen by the Guardian, has found they are less likely to get an early or “timely” diagnosis, less likely to access treatment, and less likely to receive support when diagnosed, because of a “totally inadequate” system set up decades ago for a predominantly white population.
Barriers to dementia diagnosis, care and support faced by south Asians are harming “all areas of their lives: mentally, physically, socially and financially”, with many suffering from isolation, anxiety, loneliness and depression as a result.
The devastating 55-page report, commissioned by Alzheimer’s Society, is due to be published in full this week.
The revelations follow a series of reports in the Guardian exposing the extent of health inequalities in the UK.
The health secretary, Sajid Javid, has made repeated public pledges to “level up health”. However, his promised white paper on health disparities, originally due in the spring, has yet to materialise.
“This research paints an alarming picture of the discriminatory repercussions of an outdated system designed for white British patients,” said Karan Jutlla, the author of the report and dementia lead at the University of Wolverhampton. “We are losing people in the system.”
Getting a dementia diagnosis in the first place is often more difficult for south Asians, her review says, because of a “lack of culturally appropriate diagnostic tools”. Because questions in some cognitive tests are about significant events in UK history, many first-generation south Asian immigrants have insufficient knowledge to complete the assessments.
Early diagnosis of dementia is vital, opening the door to treatment. It also helps patients plan while they are still able to make important decisions about care, finances and legal matters. But the review found south Asians “are less likely to access dementia diagnostic services in a timely way, compared to white British”.
When they do receive a diagnosis, a “lack of culturally appropriate service provision” means health and care staff often fail to take into account their faith, cultural norms or dietary requirements, the review says.
Studies highlighted in the review found that “significantly more people from the white British sample were recorded as using or being offered more than one form of community support” compared with south Asian people.
“There’s also a language barrier challenge,” said Jutlla. “English is not the first language for many older people within the south Asian community. Materials and support are largely provided only in English, leaving families to piecemeal translate leaflets and conversations with healthcare professionals.
“We also heard of care agencies muddling up south Asian languages and thinking they are interchangeable.”
Kate Lee, the chief executive officer of Alzheimer’s Society, said south Asian people were expected to see a 600% increase in dementia diagnosed by 2050 compared with 100% in the general UK population.
“Yet the system is woefully unprepared to deal with the increase with meaningful, personalised and culturally inclusive care,” Lee said. “Everyone deserves appropriate care when they face the immense challenges of dementia, but our current system is totally inadequate and it must change.”
Leading health figures told the Guardian changes were needed. “It’s unacceptable that in 2022, south Asian communities are having worse experiences with dementia simply because of prehistoric systems and support,” said Jabeer Butt, the chief executive of the Race Equality Foundation.
“Not only are south Asian people more likely to receive their dementia diagnosis at a later stage, limiting their access to treatment, but most cognitive tests used to diagnose dementia have been validated and tested in English, with a strong bias for western culture, language and education.”
Habib Naqvi, the director of the NHS Race and Health Observatory, said the increasingly ageing south Asian population meant “tailored and culturally sensitive healthcare” was more vital than ever.
Dr JS Bamrah, the national chair of the British Association of Physicians of Indian Origin, said that in many cases the lack of support meant “the burden of care is shouldered by families” and “quite often at a cost to their own mental health”. He called for a national taskforce to tackle dementia inequalities, “to give a voice to these silent sufferers, and ensure that no one gets left behind”.
Dr Mani Santhana Krishnan, the chair of the old age faculty at the Royal College of Psychiatrists, said there was an “urgent need” for translated health information for patients of all backgrounds.
“Being able to communicate with patients in their first language is crucial, especially for those with dementia and other mental illnesses,” he said. “Government investment in specialist healthcare workers, who have those language skills, is required to achieve that.”
A Department of Health and Social Care spokesperson said: “We want a society where every person with dementia receives high-quality, compassionate care, from diagnosis through to end of life, regardless of their background or ethnicity.
“We will set out bold action to reduce the gap in health outcomes between different communities in a white paper, and publish our ambitious 10-year strategy to tackle dementia – focusing on the specific health and care needs of people living with dementia and their carers.”
