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Special Feature: Rare Dementia Support groups

Jill Walton describes Rare Dementia Support which provides information and organises meetings for people with 6 different forms of dementia, incl. FTD
Rare Dementia Support is the umbrella term that we use to reference support groups for people with rare diagnoses of dementia that are affiliated to the dementia research centre here at UCL. The very first support group that we set up really grew out of our time as nurses in the clinic, as then the Presenile Dementia Clinic, back in the early 1990s. Where with the doctors and psychologists, we were seeing people on a weekly basis who were being diagnosed with diseases that weren’t Alzheimer’s disease. And at that time, the only centre for support that we referred people to was the Alzheimer’s Disease Society, as it was then, which was great and did a great job as far as it was able to.
But it didn’t address the very different needs of people who were facing, for example, behaviour variant frontotemporal dementia as we now call it, or Pick’s disease as we then did. And so really the very first idea for the support group grew out of the simple notion that why, it seems such a shame, that the people who we are seeing this week couldn’t be teamed up with the people we saw last week in clinic who had a very similar set of symptoms and might just benefit from meeting each other. The very first dementia or Pick’s disease support group meeting happened, I think there were eight of us around a table. And I remember reading the minutes of that very first meeting.
And, A, we were surprised that people turned up. And, B, we were surprised how far people travelled to turn up. And that was a real measure for us of the need for such a group of people if people were prepared to travel all this way for what was actually quite a tenuous agenda, then it signified to us that there was a need that really needed to be met. There was a gap. And so that’s where the support group began, really, from very humble and simple origins.
So from that one meeting in London in the early 1990s, the Pick’s disease support group grew, changed its name in due course as our understanding of frontotemporal dementia developed, and obviously in later years, we now have five Rare Dementia Support Groups encompassing not just frontotemporal dementia but some of the other diagnoses. So the remit of the support groups is quite wide ranging. First and foremost, we want to provide access to expert and disease specific information about these rarer dementias. We want to be able to provide social opportunities for people affected by these diagnoses, to meet one another and others affected by similar diagnoses.
We also have a nurse coordinator who manages the groups and is available for each of the five disease specific support group members to make inquiries and have telephone access or email access to on a one-to-one basis. The third level really that the groups have a remit to sort of act on is to provide a stage upon which we can represent the views and needs to some degree of the members of our groups across a range of platforms which address more strategic and policy influencing change. Typically, people attend a support group meeting and are relieved to find that there are other people just like them. We have a quote, a C.S.
Lewis quote, which is our sort of our banner stand quote at the beginning of a support group meeting which reads, “Friendship begins the minute you meet somebody else and realise what you too, I thought I was the only one.” And that’s very much the message that we get as a feedback from people who’ve left the support group meetings and realised, hey, I’m not the only one. There are other people going through something similar and perhaps we can learn together and at least feel less isolated as a result. Across the country, there are a range of other networks. Often these are quite locally based.
But in terms of rare dementia support, the UCL Rare Dementia Support Networks are, I think, unique in terms of the support they provide for people with rare diagnoses of dementia.

Jill Walton describes the work of Rare Dementia Support which provides information and organises meetings for people with six less common dementia diagnoses, including frontotemporal dementia.

What are your thoughts on support group meetings? What aspects encourage you to attend such meetings, and what things could put people off?

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The Many Faces of Dementia

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