Dementia Voices Report, Essex

The purpose

Essex County Council commissioned Healthwatch Essex to speak to people with dementia. The purpose of the conversations was to find out what it's like to live with dementia in Essex.

The council wanted to understand their experiences and use these insights to inform decisions they were making about local strategy and services for people affected by dementia.

What happened

The project team worked with the Alzheimer’s Society Service User Representation Panel – an involvement group of people with dementia – to decide which questions would be best to ask people.

The two key areas of focus were: 1) Finding information at the first signs of dementia and 2) Living well in the early stages of dementia.

The group influenced the work, guiding them about six broad, open, questions they felt would be useful, rather than just five that the project team had intended.

Healthwatch Essex worked with Alzheimer’s Society, Essex Dementia Cares and the Peaceful Place Day Centre and spoke with five groups of people living with dementia. They asked each group the same questions. This enabled them to measure the experience by coding (or grouping) what people told them into emerging themes.

The results

The rich feedback provided insights to decision-makers about

• how to design and deliver services
• why current offers needed to change
• to require more consideration of what matters most to people with dementia as members of the community.

What changed for people with dementia

The report was used by commissioners and influenced a new Dementia Strategy for Essex.

Dementia Support Services were remodelled, to make the new ways of working put what matters to people with dementia, and their carers, at the heart of service design and delivery in Essex.

Dementia Voices report: listening to people with dementia about their lived experiences