Campaigning and influencing by people with dementia in the UK

Waving placards and haranguing politicians is not something one would associate with people with dementia.

On first reading, the following joke might cause offence:

Chant on an Alzheimer’s protest march:

“What do we want?” - “God knows”

“When do we want it” - “Want what?”

But people with a dementia diagnosis are increasingly coming together in groups and activities aimed at influencing policy makers, the media, service providers, professionals, and the general public to raise awareness about dementia, challenge stigma and stereotypes, improve services that people with dementia use, and the communities where they live. And doing it with a sense of humour too – that joke came from the Scottish Dementia Working Group (SDWG), which is made up of over 100 members, all of whom have dementia, and has been a big influence over policies affecting people with dementia in Scotland.

Today sees the launch of a report and films from the Dementia Engagement & Empowerment Project (DEEP). It is the first UK wide project to map out, support, promote and celebrate groups of people with dementia doing this work – perhaps the first in the world. The SDWG is one of a small but growing number of groups around the country that also includes groups in Stockport, Brighton, Swindon, Torbay, Salford, and Rhyl. Some are quite small, locally based and informal, and involve social activities and peer support for their members, but all are active in trying to change policies, services and public opinion to benefit people with dementia. Much of the work is new and ground-breaking, like employing some with dementia to help develop services or working with local shops and services to help them become more ‘dementia-friendly’.

DEEP has been a collaboration between two charities, the Mental Health Foundation and the Alzheimer’s Society, and a community interest company, Innovations in Dementia, and funded by the JRF. All the organisations involved have been both excited and inspired by what different groups have been doing – with a national spotlight on dementia, increased rates of early diagnosis, and more people being vocal and assertive about what they want, it has felt like DEEP has had a privileged view of a new and important part of the ‘disability rights movement’ emerging.

Other disability groups have been doing this kind of work for decades but people with dementia are catching up quickly. Of course there are lots of challenges, like how to provide opportunities for people with more severe dementia to have a say, or people with dementia from other ‘seldom heard’ groups, but this is something that DEEP will begin addressing. Initially funded for a year, the project will now continue for a further three years thanks to the JRF, to help build the capacity of existing groups, support new groups and enable a network of groups to develop.

People with dementia might not be building the barricades quite yet but they are certainly becoming more organised at challenging obstacles put in their path that prevent them from getting the services they need and participating in society as equal citizens.

Have a look at the DEEP report and its appendix to find out more.