How people living with Dementia can direct community projects

21st May 2015

Involving people with dementia in funding decisions has been a ground-breaking project, says Katherine Blaker in Dementia Awareness Week.

“Being on this panel has given me back my life, really,” says Eddy Flory. He was one member of JRF’s panel of people living with dementia, who over the last two years have been advising JRF’s awarding committee on community grants applications.

Ten people living with dementia, and their partners, carers or supporters have participated in these informal meetings over the past two years. Members of the group have told us about the personal impact this has had on them. Immediately after his diagnosis, Eddy found that people around him treated him differently. “I had to get Emily and Damian (supporters of the local dementia forum) to come and sort them out. I’m still me! Being a part of this panel and getting this recognition from these people at JRF, such a big company, well, it makes you feel you've made a difference".

This involvement of people with dementia in the decision-making for grants has come from JRF and JRHT’s aim to test out what it means to become a dementia-friendly organisation. JRF and JRHT have a number of different roles, and it has been challenging to think about how being dementia-friendly applies across all these diverse activities.

In its role as a funder, JRF allocated funds to support community projects involving people living with dementia in the city of York. At the outset, involving people living with dementia about what we funded seemed impossible. It was not a practice we could find evidence of elsewhere so we forged our own path.

The panel have helped us to award £132,771 to 31 projects. They have offered practical advice, telling us that “arts activities and music in the same room is too much!” And they have informed us about gaps in provision: “there are not enough things to do outside”. They've also become effective commentators on strategic oversight: “it’s all well and good giving money to small projects, but the system for diagnosis and support in York needs to change”.

This has been a shared journey of learning for everyone. I have learnt a lot about how living with dementia affects each individual in different ways. Together we have encouraged and supported local community organisations to think more creatively about how people living with dementia can actively direct their work.

Undoubtedly by working together we have achieved what JRF Trustee Dianne Willcocks described as ‘exemplary grant-making’. We hope others will be inspired to find their own ways of involving people with dementia in decision-making.

Read more about our work on dementia.