Bangor University will be collaborating on the first major study of the value of support groups for people living with or caring for someone with a rare form of dementia.

The Bangor Institute of Health and Medical Research in the School of Health Sciences are the only university in Wales to be awarded funding as part of the ESRC-NIHR Dementia Research Initiative 2018.

This programme of work, led by partners at University College London, centres around people living with rare dementias, and will involve the first major study of the value of support groups for people living with or caring for someone with a rare form of dementia.

This is important because around a quarter of people with dementia have one of the less common forms (not typical Alzheimer’s disease or vascular dementia). These rare dementias are more common in young people (under 65 years old), who are often still having to manage work, childcare and a mortgage. Getting a diagnosis is often difficult and slow, and the services available following diagnosis often do not meet people’s needs. In particular, general support groups and dementia cafes often do not feel relevant as other people attending are often much older, are in a different situation and have different symptoms.

Bangor lead, Professor Gill Windle, director of DSDC Wales Research Centre says: “We are delighted to be collaborating on this research programme. It will it enable us to make a real difference to the lives of people living with dementia and those who care for them.”

The work will run for five years. It creates new jobs for early career researchers, a PhD studentship for the School of Psychology with Dr. Rebecca Sharp, and further PhD opportunities. Over the five years, Professor Windle’s team will develop and test a new way of measuring the resilience of people living with dementia. It is only very recent that people have begun to think about how about how people with dementia might achieve positive outcomes and resilience, but no measures exist for research and practice to utilise.

The importance of language and geography will also be considered throughout this work, and Professor Windle’s team will work with Dr. Mary Pat Sullivan, Nipissing University in rural Ontario, Canada. “Our initial investigations highlighted a notable absence of contemporary research and knowledge about the impact of dementia in rural Wales and Canada, so we will develop comparative studies, building on some of our excellent working relationships with people living with dementia to provide new insights,” commented Gill Windle.

Professor Rhiannon Tudor Edwards, Co-Director of the Centre for Health Economics and Medicines Evaluation (CHEME) leads the economic analysis. Building on her portfolio of dementia studies, her team will develop and test new approaches for the economic analysis, regarding the cost effectiveness of support groups.
She said: “Economic evaluation of services for people with dementia raise complex challenges for health economists who need to make sure we identify, measure and value all relevant costs and outcomes to the people living with dementia, families, who are often informal carers, and formal and third sector services. We are delighted to collaborate on this programme of research into improving services for people living with rare dementias, building on our track record in the area of dementia economics.”

Dr Zoe Hoare, Principal Statistician with North Wales Randomised Trials in Health (NWORTH CTU) will provide statistical expertise across the project, and lead the analysis of a feasibility RCT. She added: “NWORTH have expertise in evaluating complex interventions for dementia and are excited to be collaborating with this team supporting those with rare dementias.”