What works well for people from ethnic minority groups living with dementia: a review of their preferences, service needs and models of future practice
Why the research is needed
Three percent of people currently living with dementia In the UK are from ethnic minority backgrounds (Alzheimer’s Society 2022), with the figure expected to double by 2026 and South Asian communities experiencing the steepest increase. Alzheimer Society acknowledges that: “we still have a lot to learn about the full impact of dementia in black, Asian and minority ethnic communities and how best to offer appropriate support. Existing research to answer these questions is limited”. After producing an initial report of our systematic review findings, we will conduct focus groups and interviews with public members with South Asian and Black African/ Caribbean backgrounds to obtain their views on the current research findings. Their insights will be integrated into our systematic review’s discussion and future recommendations. This will enable us to increase our knowledge on ‘how best to offer appropriate support’ to people living with dementia from diverse ethnic backgrounds.
What is already known about the subject
Understanding and acceptance of dementia as a medical condition vary greatly between different ethnic groups in the UK. Cultural views on mental illness can influence individuals’ reluctance to seek support from health services when dementia symptoms begin to emerge. A number of research studies have shown a large number of people from ethnic minority backgrounds approach healthcare professionals at later stages of dementia. Most studies acknowledge more is needed to be done to enable diverse ethnic communities to feel encouraged to access dementia services.
Who we will be working with
The review team consists of senior researchers Prof Martin Orrell (Institute of Mental Health, Nottingham) and Dr Naaheed Mukadam (University College London), Research Assistants Thea Sobers and Abigail Lee, and PI Dr Orii McDermott (University of Nottingham). We are fortunate to be collaborating with colleagues from the Centre for Ethnic Health Research, Leicester.
How patients and the public are involved
The research team will produce a lay summary report of the initial findings from our review. This will be shared with public members with a) Black African/ Caribbean backgrounds, and b) South Asian backgrounds. We will conduct focus groups and interviews to obtain public members’ views and experiences. Their insights will be integrated into the review discussion and future recommendations.
What we will do
First, we will conduct a narrative synthesis systematic review of the studies that meet our inclusion criteria. Second, we will produce a lay summary of initial findings to share with public members and conduct focus groups and interviews to obtain their feedback. Third, we will integrate their feedback into our systematic review and prepare our review for publication.
What the benefits will be
A rigorous systematic review combined with public members’ insights will help us to increase our knowledge on how best to offer appropriate support to people with dementia from a wide range of ethnic backgrounds.
When the findings will be available
We plan to finalise our systematic review in summer 2023.
How we are planning for implementation
In addition to a peer reviewed publication, we plan to produce a lay summary report for public members. We will consult our public contributors during our review process whether translated summary reports will be useful.
Dr Orii McDermott, Senior Research Fellow, Orii.McDermott@nottingham.ac.uk.