Empowering people with dementia: we’ve started, now we plan to continue

Peter Ashley, person living with dementia and retired Group Technical Director talks about his life and experiences:

I have been living with dementia for 12 years. That word, “living,” is key as I value every single day of my life, and the Dementia Engagement and Empowerment Project (DEEP) has become an important part of this.

For too long, people with dementia and related disorders have not been at the heart of influencing services and policies and finally the DEEP project has given us the power to change this for the better.

Initially the concept of the project confused me and I felt we were working towards creating a country wide “Living with Dementia” group. However the real aim of DEEP, to establish a network of local and national independent groups that could work together to empower people with dementia, was something I was passionate about and keen to be a part of.

The project, led by the Mental Health Foundation with support from Innovations in Dementia and the Alzheimer’s Society, and funded by the Joseph Rowntree Foundation, began in 2011. As an Associate at Innovations in Dementia and having worked closely with all three organisations I became involved in the project at an early stage to offer my own perspective as a professional and as a person living with a diagnosis of dementia.

The initial challenge was to investigate the ways that people with dementia were engaged and discover the aims they had for the future. The Mental Health Foundation completed a survey to build a picture of groups or projects led by or actively involving people with dementia which sought to influence services and policies. It was apparent that there were some well-established groups, such as the Scottish Dementia Working Group, already in existence, while others had aspirations to establish themselves for many years but were lacking in the support and resources they needed to progress.

By building an accurate picture of initiatives for people with dementia across the UK, we were able to evaluate these and identify areas that needed further support. After launching the results at two national events this year and showcasing some of the most successful initiatives, the project moved on to think about how to develop a UK-wide network to enable people with dementia, their families and carers to share their experiences, ideas and resources, and support one another in their shared goal to improve policy and service delivery for people living with dementia.

To be at 18 months on with an in-depth report completed by the Joseph Rowntree Foundation summarising the DEEP project processes and findings and a film featuring people living with dementia’s experiences of dementia initiatives is truly inspiring. All of the hard work and commitment which has gone into the first stage of the DEEP project has just scratched at the surface, and the second phase seeks to delve much further, helping the groups to grow, become more influential, access further resources and further develop the idea of a network.