New major review to tackle barriers in dementia care

Long standing barriers that prevent Black, Asian and ethnic minority communities from accessing timely NHS dementia care and support will be examined as part of a new major review.

It comes amid growing data borne out over decades which highlight historic, serious inequality gaps that diverse communities experience around delayed dementia diagnosis, reduced access to dementia services, lower use of anti-dementia medications, cultural and language barriers and higher mortality rates following a dementia diagnosis.

In the UK there are approximately 30,000 people with dementia from Black, Asian and ethnic minority communities. The Alzheimer’s Society predict this will rise to over 170,000 by 2051.

The NHS Race And Health Observatory will be working with The Strategy Unit, a specialist internal consultancy team within NHS Midlands and Lancashire Commissioning Support Unit, to deliver this project, together with People Street, a community-led research organisation, and the NHS Health Economics Unit.

Around 10, experienced, diverse community researchers who have lived or cared for people and family members with dementia have been engaged across England to undertake outreach with research sprints, surveys, care plan reviews and interviews.

The 12-month collaboration will review the existence of tailored, culturally adapted approaches, support, information sources and other methods or  barriers preventing patients, their families and carers from accessing referrals, carers, timely diagnosis and navigating access to care and medical treatment.

As well as identifying and learning from cultural adaptations in dementia care already in place, the Strategy Unit will develop case studies of good practice.

At today’s annual Confed Expo conference, the Observatory will lead a session exploring co-production, anti-racism and community driven approaches to address health inequalities.

Prof Habib Naqvi, Chief Executive NHS Race and Health Observatory, said:

“This action-based project will provide vital insights to help address the persistent inequalities in dementia care. By examining diagnostic delays and identifying avoidable biases in the care pathway, we can better understand where communities are being disadvantaged. The lived experience and expertise of community researchers will be essential to strengthening the reach, relevance and impact of this critically important work. We must close the gaps in evidence and practice if we are to improve outcomes for ethnic minority communities.”

There are multiple, complex reasons why ethnic health inequalities in dementia care  exist. This review will explore differences in access, experiences and across the following areas:

• Cultural differences in how dementia is assessed and understood
• Culturally appropriate dementia services and care
• Experiences of racism and discrimination within the NHS
• Stigma, religious belief, ethnic and cultural backgrounds.
• Identification of the groups more at risk of dementia underdiagnosis.
• Language barriers – including dementia patients resorting to mother tongues as the condition worsens; myths as some languages do not have a word for dementia.

Soumo Ghosh, Community Research & Impact Lead, People Street, said:

“Caring was such a lonely experience. There’s so much to juggle; family pressures, impossible decisions that carry so much weight, and the feeling that I was never really doing enough. You’re taking care of someone you love, someone so important to you, and all of that love drives everything. But it doesn’t make it easier. I gave up my job. I moved back home. And still I was wracked with shame and guilt.

“The moment my parents started slipping back into their home language and I saw how health professionals treated them differently because of it. The shame of having to use a care home when all I wanted was to take care of this person the way they once took care of me. All of that is part of it too and nobody talks about it. When it’s over, as sad as it is, it’s also a massive relief. And the thought of having to revisit it – to talk about it and try to explain it to people who just can’t understand – felt impossible. All of that lives inside you, often for years, with nowhere to go.”

Jane Greenstock, Senior Consultant, The Strategy Unit, said:

“Navigating dementia is complex and often distressing for individuals and the people who support them. In a society that is ethnically, culturally and religiously diverse, what helps someone to live well with dementia may look very different across communities. This review goes beyond describing long‑standing inequalities. It will identify the barriers that delay or limit access to support, while also learning from the culturally adapted approaches that are already helping some people to receive better care.

“What makes this work particularly powerful is the way it brings together funders, community researchers and NHS partners, combining lived experience with analytical expertise to build a clearer picture of what effective, culturally responsive dementia care may look like in practice for different people and communities.”

A final report in 2027 will incorporate an academic, literature review, assessment of  cultural adaptions, interviews with health and social care professionals including care home managers, day centre dementia staff, volunteers and those who support people with dementia. Authors will review case study example of best practice in practice and highlight areas where initiatives are needed to strengthen and improve. Quantitative analysis will be provided by the Health Economics Unit. Counselling provision is on offer to community researchers as they manage caring responsibilities alongside this programme of research.

This project has been a chance to “speak about it safely for the first time”, according to Soumo: “To begin to process it. To share with others what each of us went through, and what each of us had to carry. But even more than that the thought that this could actually be part of making a change. Making a difference, so that in future the journey could be a little kinder. It feels like a privilege to be part of it.”