Diane Garfield, Strategic Advisor, Rare Dementia Support

Diane Garfield

Diane Garfield

After her mother Myrtle Ellis was diagnosed with Posterior Cortical Atrophy (PCA), Diane Garfield and her family became actively involved in raising money for PCA.  After raising more money than expected, Diane applied her professional and academic background to do something more innovative with the money and was instrumental in setting up the charity Rare Dementia Support (RDS). She continues to support RDS fundraising and sits on the Strategic Advisory Board.

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

After mum was diagnosed with Posterior Cortical Atrophy (PCA), my sister Susie started fundraising, and between the whole family we all used our networks to raise £11,500 for The National Brain Appeal.

As I wondered if there could be a more strategic way to allocate the funds, Susie spoke with Theresa Dauncey (CEO of The National Brain Appeal) suggesting we ask the UCL Dementia Research Centre: “If this money could be made available to you, what would you like to do with it?” The answer was a support group for families facing a diagnosis of PCA.

So we ring-fenced this funding and created the Myrtle Ellis Fund in honour of mum. It quickly expanded to fund three additional support groups.

After this experience, I decided to do an MSc in Charities Management, quickly using my learning to successfully secure a grant from Terry Pratchett’s Discworld Foundation for £24,000!

It became apparent to both The National Brain Appeal and Dementia Research Centre that a sensible approach would be to merge the long-standing Frontotemporal Dementia support fund with ours as so much of our awareness building was happening together anyway. So here we are with a single entity, Rare Dementia Support (RDS) and I’m delighted to have been asked to sit on its Strategic Advisory Committee.

I also co-founded a regional RDS group in Hertfordshire with Roberta McKee Jackson and try to arrange an international meet-up with the wider PCA community once a year. While we are UK-based we try our best to counsel our international counterparts and share learning.

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

As a result of Mum’s diagnosis, we were introduced to a drug study at the Dementia Research Centre. This was such a help to us as a family and the staff’s desire to connect others facing this same diagnosis, inspired us to do something meaningful in return.

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

The merging of the funds and the development of the new brand; it allows us to expand who and how we support people.

What’s next?

My focus is really on supporting the RDS fundraising because there is so much more we could do if we had the funding and therefore an expanded team. 

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

For me, the one thing is to have a truly effective and impactful support system for the people responsible for the care of people living with dementia.