Dementia Voices Report, Essex

Healthwatch Essex used qualitative data about the experience of living in Essex with dementia to inform their commissioning strategy for services from 2017. They also produced a useful report.

Image shows cover of the 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 and use what they learned about the experience of people with dementia, to inform decisions they were making about strategy and services for people affected by dementia in Essex. 

Preparation

Desktop research provided a starting point for this project, in particular, using the ‘Ideal Experience Journey Steps’ identified as part of design work for community dementia support services in Essex in 2015.

The project team decided to concentrated on two of the steps:

  • finding information at the first signs of dementia
  • living well in the early stages of 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 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. The project team followed the advice of the group and used those six questions. 

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 report highlighted lived experience, informing Essex County Council’s commissioning of Dementia Support Services.

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 the 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.

Useful Links

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