NHS dementia care ‘was set up for white British people’

·3 min read
Human head with cloud of confusion - Paula Danialse/Moment
Human head with cloud of confusion - Paula Danialse/Moment

NHS dementia care is designed for white people and discriminates against south Asians, a report has found.

The Alzheimer's Society review, seen by The Guardian, found that people of south Asian heritage are less likely to access treatment and receive a “timely” diagnosis than white people.

Dementia care operates using a “totally inadequate” system that was set up decades ago for a mostly white British population, the 55-page report, due to be published this week, said.

“This research paints an alarming picture of the discriminatory repercussions of an outdated system designed for white British patients,”,Karan Jutlla, the report’s author and dementia lead at the University of Wolverhampton, said.

The review, which is due to be published later this week, said that south Asian people find it harder to get a dementia diagnosis under the British system owing to factors that include a lack of “culturally appropriate” diagnostic tools and service provision such as cognitive tests.

A lack of “culturally appropriate service provision” also impacts south Asian patients when they do eventually receive the diagnosis, the review said, for example with staff failing to take into account their dietary requirements.

Aspects of British history

The report found that first-generation south Asian immigrants might struggle with “outdated” cognitive assessment models that require adequate cultural knowledge, such as aspects of British history.

White British people were also found to have been offered “more than one form of community support” compared with south Asian people.

Ms Jutlla  said that south Asian sufferers – particularly older patients for whom is English is not the first language – might struggle with a language barrier when receiving materials and support.

She said that these “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.”

Ms Juttla said that south Asian patients were being lost in the system because of these issues.

Habib Naqvi, the director of the NHS Race and Health Observatory, said that the increasingly ageing south Asian population meant “tailored and culturally sensitive healthcare” was more important than ever.

The Department of Health and Social Care (DHSC) told The Guardian: “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.”

There have been warnings that too little is being done to ensure dementia cases are spotted in the UK, with research published last month finding that more than 300,000 people were living undiagnosed with the condition.

Analysis of official figures suggested that about four in 10 cases of conditions such as Alzheimer’s were not recorded, with a fall in diagnosis rates since the pandemic.

Set a target

Under David Cameron, the Government set a target for 67 per cent of people with conditions such as Alzheimer's to receive a diagnosis.

This was achieved until the pandemic, but now less than 60 per cent of cases are being detected, the data showed.

Researchers said analysis suggested 325,862 people living in England have dementia that has yet to be diagnosed.

The DHSC said: "We want a society where every person with dementia receives high-quality, compassionate care, from diagnosis through to end of life.

"Later this year, we will set out our plans on dementia for England for the next 10 years, which will focus on the specific health and care needs of people living with dementia and their carers - including diagnosis, risk reduction and prevention and research.

“Our Health Disparities white paper will set out bold action to reduce the gap in health outcomes between different places, so that people’s backgrounds do not dictate their prospects for a healthy life.”