Jill Walton, Former Co-ordinator of Rare Dementia Support

Jill Walton

Jill Walton

Jill Walton led in the development of the first rare dementia-specific support group at the UCL Dementia Research Centre. Over 22 years, this has grown into a support network of 5 rare dementia groups and over 3000 members in London and around the UK in the form of the charity Rare Dementia Support (RDS). Previously to her role at RDS, she was a specialist nurse advisor.  

Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?

Since joining the UCL Dementia Research Centre for the first time in 1992, I have been involved in the provision of support to people affected by atypical diagnoses of dementia. 

What was your motivation for getting involved in the field of dementia? 

Firstly by C. S Lewis: “Friendship begins the moment you meet someone else and realise – what, you too? I thought I was the only one!”

More latterly by Alexine Crawford: “...telling our story and hearing the story…is of enormous importance, both for the teller and the hearer. Without a sense of history our view of the present and of ourselves is limited and handicapped. The telling and the hearing bring healing and growth”.

I’m motivated in practice by the diagnosis specific support needs of people affected by less typical diagnoses, and the implications associated with the lack of common ground within generic support platforms.

What would you say has been your greatest achievement or highlight?

A significant achievement has to be the very first support group meeting we facilitated for the carers and friends of people with FTD (or as we referred to it at the time, ‘Pick’s disease’). In 1995 there was no other group like it. That people came, that the value of the meeting was so clearly evident, and that a need was being met set the wheels in motion for future work and efforts which culminated ultimately in the formation and launch of RDS – in itself a meaningful achievement.

The event which we held in the House of Lords in 2015 marked a significant milestone in the mission to raise awareness of the less typical dementias, and sent a message to people affected by the diagnoses, that we represented: we were determined to give them a voice on platforms where it mattered.

What’s next?

Current plans include replicating the support group model and including faith-based elements to the provision on offer. I am excited to see the ways in which this additional aspect of support will add value to the model. Ultimately I would like to develop a template that could be rolled out by others to facilitate similar groups and indeed a model which might be applicable across faiths.

I have established a role in facilitating accessible church services for people within the local community affected by dementia, memory problems, or with additional other needs . As a means of reaching out to offer tangible support, these services are increasingly popular and well attended.

If you could change one thing now to improve the lives of people living with dementia, what would it be? 

If I could change one thing it would be to instil empathy in the approach to care and support needs.