Engaging with people who live with dementia

People who live with dementia are a group often excluded from engagement. This guide describes an approach to gathering their views, including partnership working, co-production and engaging through community groups.
Older man smiling

We offered grants to local Healthwatch to produce a simple guide on how to replicate and adapt engagement approaches that have worked well for them. Thank you to Healthwatch Wiltshire, who produced this guide on how to engage with people who live with dementia.

What is dementia?

NHS England explains: Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning. There are many different causes of dementia, and many different types. For example, Alzheimer's disease is a type of dementia and, together with vascular dementia, makes up the majority of cases. Dementia symptoms may include problems with:

  • Memory loss
  • Thinking speed
  • Mental sharpness and quickness
  • Language, such as using words incorrectly, or trouble speaking
  • Understanding
  • Judgement
  • Mood
  • Movement
  • Difficulties doing daily activities

Why use this guide?

Here are some of the benefits of using the approach in this guide: 

  • Working with people who live with dementia to produce your project promotes equality and gives control to the people whose views you are looking to gather. 
  • Working together improves the design of your survey. You can find out if your questions will be understood, and how people may respond to them. Your survey will more accessible to your target group, and you will be able to gain greater insight into people’s experiences.
  • Engaging with people at community groups is a good way of enabling open discussions as people are in a familiar and safe environment and may feel happier to share their views.   


How to engage with people living with dementia