ARC West dementia research to be given a boost with three new post-doctoral researchers

NIHR ARC West has been awarded nearly £386k to host three new post-doctoral researchers focused on dementia. The new research fellows will focus on:

• Improving the economic evaluation of interventions to support people with dementia
• Developing a family intervention to support people who have received a dementia diagnosis
• Developing tools and interventions to enable reach and access to diverse communities including black and ethnic minority groups

The economic evaluation project is led by Dr Hugh McLeod. The ICECAP-O and ICECAP-SCM capability measures offer more holistic assessment of quality-of-life outcomes than the traditional narrower focus on health-related quality-of-life widely used in economic evaluation. These measures ask people to rate aspects of their quality-of-life which are viewed as most important, such as independence.

However, there are challenges to using this approach with people who have dementia. These include:

• Filling in questionnaires can be challenging for people with dementia, so more ‘dementia friendly’ data collection tools are needed
• People with mild to moderate dementia tend to rate their quality of life significantly higher than their carers would, and we have to rely on carers to provide ratings for people with severe dementia, so methods are needed for accounting for these issues
• How to incorporate outcomes for carers into economic evaluations

By investigating these issues, the new role will contribute to improving use of outcome measures in the economic evaluation of interventions for people with dementia.

Professor Richard Cheston will lead the project to develop a family intervention to support people who have received a dementia diagnosis. Comparatively few of the 200,000 people diagnosed each year with dementia are offered support to help them to adjust to the diagnosis. The Living Well with Dementia (or LivDem) course is an eight-week, group-based post-diagnosis intervention. It’s facilitated by non-psychologists and attended by between six and eight participants living with dementia. However, many potential participants would prefer to discuss these issues within their family rather than in a group.

The LivDem model could be adapted to be used with families (Families-LivDem). The project will include:

• Consultation with existing LivDem facilitators, family therapists and families living with dementia
• A preliminary study to co-produce Families-LivDem with families
• A pilot trial randomising participants to receive either Families-LivDem or usual care
• Developing an application for a full trial of Families-LivDem

Dr Jon Banks will supervise the third role, which is funded by the Alzheimer’s Society in collaboration with NIHR. The postholder will work with the other two research fellows to develop tools and interventions to enable their research to be inclusive. These tools will aim to enable reach and access to diverse communities including black and ethnic minority groups. As the Alzheimer’s Society note: “We still have a lot to learn about the full impact of dementia in BAME communities and how best to offer appropriate support” and “existing research to answer these questions is limited” (Alzheimer’s Society, 2022). The postholder will focus on three work programmes:

• Evaluating a Parkinson’s Disease hub supporting patients with dementia, including those from diverse communities
• Working closely with the health economics researcher, developing and adapting the ‘dementia friendly’ ICECAP measures to meet the needs of culturally diverse communities
• Developing and adapting LivDem so that it meets the needs of culturally diverse communities.

Professor John Macleod, Director of NIHR ARC West, said:

“I’m delighted ARC West can support the next generation of dementia researchers with these new roles. They are going to be part of a large cohort of ARC based researchers focused on dementia, as well as benefitting from the considerable expertise of the ARC West team they’ll be part of.”

The award is part of an £11.8 million fund for promising early career researchers to pursue dementia research, from the National Institute for Health and Care Research (NIHR) in collaboration with the Alzheimer’s Society. The 15 NIHR Applied Research Collaborations (ARCs) have received £7.5 million of that funding, to support up to three career development awards for early career researchers in dementia, to build strength in dementia-related applied health and care research.

The funding will support a cohort of post-doctoral health and care researchers toward independence, developing their skills to establish their own research projects, programmes and ultimately groups.

The three NIHR research schools – in primary care, public health and social care – have also had a share of the funding for a number of dementia career development awards to encourage new and developing dementia researchers to lead studies.

Professor Lucy Chappell, Chief Executive of the NIHR, said:

“We want to improve the lives of people with dementia, and those caring for them, through innovative research that tackles a range of challenges around this disease.

“This new funding taps into the up-and-coming talent in the NIHR ecosystem, supporting fledgling dementia researchers from a range of disciplines to become the chief investigators of the future and building a solid foundation for the next decades of dementia research.”