Measuring Experience of People with Dementia as Users of Health & Care

Tuesday 18 December 2018

Introductory information for National Dementia Action Alliance members
The project

The Department of Health and Social Care has asked Alzheimer’s Society to produce a web-based “toolkit” (a guide filled with stories, tips and tools) to help health and care organisations improve by using feedback from people living with dementia. The resource also is to encourage organisations to see the links between the rights-based Dementia Statements and the health and care services in their planning, delivery and evaluation.

Why is it needed?

The need for the resource was identified through round table discussions by the Department of Health’s Meaningful Care Experience and Satisfaction Measures Task and Finish group - set up to deliver aspects of the health and care part of the Dementia Challenge 2020 – with around 100 commissioners, providers and people affected by dementia. Through the conversations, they found

  • Existing ways of gathering feedback, evaluating and improving services often do not work well for people living with dementia. Many people’s experiences go unheard, so opportunities to improve care, reduce hospital admissions, and enable people to live better with dementia are missed.
  • Organisations want to do better, but need help about ‘how’ to involve people living with dementia. 

The resource is intended to be a web-based resource that is clearly relevant, easy to use and apply in different settings across health and social care. People living with dementia, and carers, as well as people working in health and social care, are working together with Alzheimer’s Society to develop the resource.

How can I get involved?

We are looking for:

  • Examples of good practice to include across health and social care settings, and self-managed care in the community. This could be case studies or links to useful resources. We will need to gather the details for this during January.
  • People from health and social care commissioner, regulatory and provider bodies who might be interested in helping us test the resource content in the January – February period.

To find out more please complete our short online survey or contact Lindsey Ambrose in the Dementia Voice Team on email at or call 07703 716 745.