University's dementia expert announced as ambassador for Alzheimer’s Society

Dr Karan Jutlla has been the dementia lead for the university 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.

Her report commissioned by the Alzheimer's Society has revealed that South Asian people living with dementia in the UK and their families are being failed by a lack of culturally inclusive support after their diagnosis.

Families are struggling to navigate an ‘outdated’ post-diagnostic care system ‘designed for the white British population’, due to the absence of translated resources and South Asian language-speaking healthcare workers, as well as support services that don’t consider the cultural needs of South Asian communities.

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

Born a British Asian in the Sikh community, Dr Jutlla said: “I’m delighted to become an ambassador for the Alzheimer’s Society. Through my research, I know how crucial it is that support is available to everybody in a cultural, exclusive way.

“By becoming an ambassador, I aim to shine a spotlight on the challenges faced by those affected by dementia from South Asian communities, highlight the support available and champion the way to further change.

“Dementia does not discriminate, and I want to make sure that our healthcare system is able to provide support to people affected by dementia, despite their cultural backgrounds.”

Commenting on her research, Dr Jutlla added: “This research paints an alarming picture of an outdated system designed for the white British population, which is failing the South Asian community.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.”

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.

Alzheimer’s Society 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.

The charity 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.