A collective voice for Dementia

Waving placards and haranguing politicians is not usually associated with people with dementia. And on first glance, 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 the fact is that people with dementia are coming together in groups and organising activities aimed at influencing policy makers, the media, service providers, professionals, and the general public. They’re raising awareness about dementia, challenging stigma and stereotypes, improving services and improving the communities where they live. They’re doing it with a sense of humour, too. The joke above came from the Scottish Dementia Working Group (SDWG), made up of more 100 members, all of whom have dementia. The group has had a big influence on policies affecting people with dementia in Scotland.

Today sees the launch of a report and films from the Dementia Engagement & Empowerment Project (DEEP). It’s 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 trying to change policies, services and public opinion to benefit people with dementia. Much of the work is new and ground-breaking, like employing people 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 andthe Alzheimer’s Society, and a community-interest company, Innovations in Dementia, and was funded by the Joseph Rowntree Foundation. All the organisations involved have been excited and inspired by what different groups are doing. With a national spotlight on dementia, increased rates of early diagnosis, and more people being vocal and assertive about what they want, DEEP has had a privileged view of a new and important part of the ‘disability rights movement’.

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 including people with dementia from other ‘seldom heard’ groups, but this is something that DEEP will begin addressing. Initially funded for one year, the project will continue for a further three years thanks to 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 breaking the barricades quite yet, but they are becoming more organised in challenging obstacles that prevent them getting the services they need, and participating in society as equal citizens.

Have a look at the DEEP report, its appendix and the films.

Toby Williamson is Head of Development & Later Life, Mental Health Foundation