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’.

Aims

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