The impact of multicomponent support groups for those living with rare dementias

Lead Research Organisation: University College London
Department Name: Institute of Neurology


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 ( 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'.

Planned Impact

Individuals and groups who will benefit from this research (and how) include:
- People at risk of, living with and/or caring for someone with a rare, atypical or young onset dementia.
- Dementia advisors, social workers, healthcare staff, occupational therapists, psychologists, nurses, psychiatrists, neurologists, eye health specialists and many other professionals working with people affected by a rare dementia.
- Dementia charities and support organisations with limited specialist knowledge of how best to support people affected by a rare dementia.
- PLWD, carers and professionals outside the UK interested in setting up or developing support services for people with a rare dementia.
- Residential and care home staff and managers caring for people in the advanced stages of a rare dementia.
- Palliative care staff working with people with a rare dementia at the end of their lives.
- Services for people with all dementias as non-memory symptoms and challenges may emerge in many individuals with common dementias as their condition progresses.
- Students, trainee professionals and family and friends of people with any dementia wanting to understand more about different dementias.
- Policymakers, commissioners and service providers trying to understand and provide for the needs of all people with dementia.
- Health economists and academics trying to understand the value and contribution of peer support and peer-to-peer learning, in combination with or independent from professional support services.

The ways in which the above individuals and groups will benefit from this research include:
Improved understanding of the long-term care and support needs in each specific condition, including the typical timing and order of these care events, e.g.
- People affected by rare dementias being helped to adjust, anticipate and plan for the future.
- Service providers planning for future needs.
- Dementia charities and support organisations being able to provide more appropriate, tailored information and advice.
- Residential, care home and palliative staff being able to tailor care and have increased confidence in their ability to meet the particular needs of people with rarer dementias.
Improved understanding of the mechanisms and processes by which support group can be of benefit, e.g.
- Helping more people to find and decide to access services that may be right for them.
- Providing policymakers, commissioners and service providers with the evidence required to facilitate decision making about service provision in their area.
Improving access to group support through innovative online services, e.g.
- PLWD and carers in other countries, those living in remote locations or those for whom circumstances make face-to-face meeting infeasible.
- For healthcare professionals to have high-quality services to signpost people to.
Improving awareness that multicomponent support groups provide a valuable, continuous and cost-effective means of support which can be adopted in different settings, e.g.
- Initiating support groups for communities of people with dementias for which there have been no opportunities to meet others in a similar situation.
Improving the research tools and methods available for capturing the impact of multicomponent support groups.

What will be done to ensure that they have the opportunity to benefit from this activity?
- Ensuring continued ease of access (including self-referral) and openness to everyone (PLWD and carers; people at different stages of dementia).
- Increased provision of non-London based support, including through partnerships with national and international support providers.
- Provision of new online support groups to enable access from anywhere.
- Translation of rare dementia condition-specific information and website resources iinto different languages.
- Provision of high-quality, easily accessible online information and training resources.


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