A report has revealed South Asian people living with dementia 'are being failed' by a lack of culturally inclusive support after their diagnosis.

The study commissioned by dementia charity Alzheimer’s Society also said families are struggling to navigate an ‘outdated’ post-diagnostic care system ‘designed for the white British population’.

To mark World Alzheimer’s Month, author of the report, Dr Karan Jutlla, has been announced as a new Alzheimer’s Society ambassador and will support the charity in its work to reduce healthcare inequalities and improve dementia diagnosis and care in the South Asian community.

Dr Karan has been Dementia Lead for the University of Wolverhampton since 2019 and has devoted her research to exploring how the healthcare system can support people, particularly in the South Asian community, live well with dementia whatever their background or culture. 

Dr Karan Jutlla, Alzheimer’s Society ambassador and author of the report, said: “This research paints an alarming picture of an outdated system designed for the white British population, which is failing the South Asian community.

"We’ve heard how people faced delays in getting a diagnosis and accessing support due to a lack of culturally inclusive information and assessment tools. Furthermore, people from the South Asian community were offered no community support which isn’t true for the white British population.  

“There’s also a language barrier challenge. English is not the first language for many older people within the South Asian community, and there’s not even a direct translation or word for ‘dementia’. Materials and support are largely provided only in English, and we’ve heard about care agencies muddling up South Asian languages, leaving families feeling isolated, anxious about finding the right care, and depressed. Culturally aware services suited for different languages are desperately needed.”  

Asian Image:

Dr Karan’s report ‘Understanding experiences of post-diagnostic dementia support for the South Asian community in England’ recommends referring people to a dedicated ‘link worker’ who speaks their first language after diagnosis to help them navigate the health and care system.

It also suggests recruiting more specialist healthcare workers from the South Asian community and introducing culturally-specific dementia training for the wider healthcare workforce, alongside translating resources about dementia. 

Jas Ghag, 32, from Slough, took three months off work to care for her mother, Rajinder who was diagnosed with Lewy-body dementia in July 2021. She said:  “After mum’s diagnosis all the information we received was in English. Coming from a culture where there is no word for ‘dementia’, this was difficult to explain to her and the rest of the family.

"The whole process before and after diagnosis needs to be adapted to include those whose first language isn’t English.

“The lack of information on services made the family feel isolated. We were chasing what we needed, but there was nothing. There needs to be someone who sits down with the person and their family and explain about the diagnosis in their first language – this would have helped us massively.” 

People from South Asian communities are more likely to develop dementia than the general UK population as they are at higher risk of other illnesses, such as heart disease, stroke and diabetes, that increase the risk of dementia.

A growing South Asian population in the UK is also likely to lead to an increased need for dementia services, but Alzheimer’s Society say they are currently under-represented in dementia services1.

Simarpreet Kaur, 33, London, found care agencies didn’t understand the diversity within South Asian communities and struggled to find appropriate care for her 69-year-old mum .

She said:  “It was exhausting, I contacted about 30 care agencies in our local area for mum and found only one agency had a Punjabi speaking carer who was qualified to look after patients with dementia. Mum speaks English, but for her and others her age, they are going to feel more comfortable with someone who can relate culturally and understands their native tongue.

“A lot of care agencies did not understand that there is a difference between Punjabi, Gujarati and Hindi. Previously we’ve been sent a Gujarati speaking care worker who did not speak Punjabi but had an understanding which the care agency thought was good enough but how could mum communicate effectively with her? We keep hitting brick walls like this and are often left to manage all aspects of care ourselves.”  

The report also suggests more peer support and counselling should be available for carers and people living with dementia, while family members should be listened to and encouraged to advise carers to ensure that cultural needs are not only identified but also celebrated.  

Kate Lee, Alzheimer’s Society CEO, said: “People from South Asian communities, along with other ethnic minority populations, are expected to see a 600% increase in dementia diagnosed by 2050 compared to 100% in the general UK population and yet the system is woefully unprepared to deal with the increase with meaningful, personalised and culturally inclusive care. Everyone facing the immense challenges of dementia deserves appropriate care, but our current system is totally inadequate, and it must change.”  

A second report released by Alzheimer’s Society in July has also revealed the crisis in the lack of post-diagnostic support in the wider community. It found three in five people affected by dementia struggled with too little support over last year2 and one in five family carers had to admit their loved one with dementia to A&E due to a lack of support3.

The charity has called for a number of recommendations to improve post-diagnostic support in the wider community, such as a dementia support worker available in every area.

Alzheimer’s Society has also developed a symptoms checklist, endorsed by the Royal College of GPs, to help anyone worried about their memory communicate their symptoms to their GP and get an accurate diagnosis.

The charity has also developed a variety of information about diagnosis and support in Punjabi, available at alzheimers.org.uk/punjabi.