UCL Queen Square Institute of Neurology


Dementia 2020 Engagement Panel: phase 2 now open

27 September 2018

Share your dementia experience with the Department of Health and Social Care.

Dementia 2020

This article has been reproduced from the Join Dementia Research website.

The Department of Health and Social Care want a better understanding of the experiences and needs of people living with dementia, in order to shape better policies. That’s why they have commissioned Opinion Research Services (ORS) to find out more on their behalf.

Phase 1 began in February, and ORS have now opened phase 2. This new phase is a questionnaire on day-to-day life with dementia, for those with a diagnosis or their carers to complete.

The overall project is spread across two years and aims to collect data on many different aspects of experiences of dementia in England.

The information gathered will be discussed with key partners, such as NHS England and Alzheimer’s Society, and will be used to shape a better policy in order to better deliver the commitments of the Dementia 2020 Implementation Plan.

How do you participate?

You can get involved by visiting the Dementia 2020 Engagement Project online hub.

Here you can either complete the questionnaire online or request for a postal questionnaire to be sent out to you. You will also find a summary report from the first phase of the project.

Alternatively you can obtain a paper questionnaire by phoning 0800 311 2126.

Stay involved

When you fill in the questionnaire you will also be given the opportunity to sign up to the 2020 Engagement Panel.

This will allow ORS to contact you directly about the third phase of the research, which is expected to begin in Winter 2018. Membership of the panel is entirely voluntary and you can withdraw at any time without the need to give any reason.

A unique occasion to have your say

Dr Claire Thomas, Project Manager, says: “ORS have been commissioned to establish a Dementia 2020 Citizens’ Engagement Panel, the aim being to build on wider engagement to ensure full delivery of commitments in the Dementia 2020 Challenge. It’s really important we hear from as many people as possible so that we can be confident we are really reflecting on the lived experiences of people with dementia across England.”