I had the privilege of chairing a Westminster Briefing conference last week on the government's dementia care policy. There were some fascinating presentations by organisations working on innovative projects in the sector.
But we had to wait until the end of the day to hear the voice of a person with dementia. The lovely Philly Hare interviewed Joy Watson (see film below) who spoke about the JRF DEEP project that is gathering pace and about her work with the Alzheimer's Society Dementia Friends project.
Originally, the Dementia Engagement & Empowerment Project (DEEP) was a one-year investigation aiming to highlight groups and projects involving people with dementia. I am a member of Dementia Action Alliance and first encountered DEEP a couple of years ago at one of their meetings, when a group of people living with dementia described becoming actively involved in groups to try to influence services and policies affecting them.
A good way for organisations wishing to engage with people with dementia better is to involve the people who really know and understand the challenges – the people living with it themselves. Yet the report found that there were only a small number of groups led by, or actively involving people with dementia to influence services and policies.
The project has tackled this head on, and has been developing since then. The work they now do includes national lobbying and meeting with government officials, local lobbying of services, media work, training and education, participating in advisory groups, awareness-raising and speaking at events. DEEP and the Dementia Action Alliance have promoted a 'Call to Action' around the language used to describe people with dementia which I would urge everyone working in the sector to acquaint themselves with and actively support.
And here's a film with Joy talking at and about a Dementia Friendly Communities session. As she said at the conference "after I got my diagnosis I spent two months lying on the sofa. Then I thought, I'd better get up and do something about it!"