Title: The impact of multicomponent support groups for those living with rare dementias
Funder: Economic and Social Research Council

Abstract: Research evidence and theory - Generate a theoretical model of - and the world's first evidence base demonstrating the critical role and significant added value of - multicomponent support groups in providing continuous, sustainable and appropriate support for people affected by rare dementias throughout and beyond the course of their dementia. - Develop a theoretically-informed understanding of support group membership, social connectedness, coping skills and understanding of a given diagnostic condition. - Demonstrate the feasibility of improving access to such support through innovative online services. - Demonstrate that multicomponent support groups provide a valuable, continuous and cost-effective means of support which can be adopted in different locations and with different dementia communities. - Generate new research tools (e.g. dementia-relevant resilience outcome measure) and methodologies (e.g. computational event-based modelling of care needs in the different rare dementias). Involvement and Capacity building - Create opportunities for young researchers to develop independent research leadership skills and to experience a research programme in which people with dementia and carers are authentically involved at all stages of the research process and beyond. - Train, equip and enable interested support group members to establish, lead and evaluate new regional and international support group initiatives. Education, engagement and communication - Create and use free, accessible platforms for sharing research outcomes such as user-led social media networks (e.g. condition-specific Facebook group) and official support group sites. - Collaborative write, translate and disseminate condition-specific information and resources with/through national dementia organisations. - Continue to create and develop high-quality video-based online training resources, including but not limited to profession-specific CPD resources. - Collaborate on creative, engaging approaches to raising awareness of rare dementias (e.g. through the arts). Service delivery - Embed the research programme within a new Rare Dementia Support Centre demonstrator site. - Initiate, launch, equip and facilitate new theoretically-informed regional, national and international support groups and networks.

Lay abstract: We will carry out the first major study of the value of support groups for people living with or caring for someone with a rare form of dementia. We will be looking at the benefits of meeting other people living with a similar condition, and sharing practical and emotional support. We will do this with the help of over 1000 members of the Rare Dementia Support network (www.raredementiasupport.org) by: (a) Conducting telephone-based interviews with support group members across the UK and Canada (b) Understanding how different types of support group help different people with different dementias at different times in their journey with dementia (c) Developing new ways for capturing whether support groups are effective (d) Following new members of our support group network over 2-4 years to see what works, what doesn't, what types of information and support are helpful, and when is that help needed (e) Testing out a new online video-based support forum designed with, by and for people caring for someone with a rare dementia called frontotemporal dementia (FTD) (f) Determining how cost-effective different types of support group are compared with other kinds of service (g) Training up healthcare professionals and researchers to recognise the needs of people with rare dementias, and to learn what benefits this training may have for their work with people with more common dementias 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 once you do 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. Support groups involving both professionals and people living with dementia may be an important part of delivering on the PM's Dementia Challenge 2020 objective of 'Every person diagnosed with dementia having meaningful care following their diagnosis, which supports them and those around them'.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL