This project led by South Yorkshire Collaborations in Leadership for Applied Health Research and Care (CLAHRC – SY) is exploring the ways that people with dementia can be better involved in service feedback, evaluation and planning.

Fundamental to informing the project has been the involvement of people living with dementia, some of who made a film about their experience of having dementia and the importance of keeping involved and ‘having a say’.

The “Voice of Dementia” film below shows people with dementia talking about their lives, their diagnosis and the importance of being listened to. The film begs the question – whey are these people marginalised when it comes to decisions about their lives, and what can we do to change this?

A City Wide Dementia Involvement Group (SHINDIG) is being piloted and evaluated as part of the project. This forum brings together between 20 and 30 people with dementia and their family carers to ‘have a say’ on topics such as experience of GP services and what helps people with dementia to live well.