Understanding experiences of dementia

• Research type

  Research Study

• Full title

  Understanding and using experiences of dementia to develop a Socialcaretalk section for public, policy, educators and service providers

• IRAS ID

  315893

• Contact name

  Lyndsay Lindley

• Contact email

  lyndsay.lindley@york.ac.uk

• Sponsor organisation

  University of York

• Duration of Study in the UK

  1 years, 10 months, days

• Research summary

  Background: In this study we want to understand what matters to people living with dementia and carers of people with dementia. While information and advice from support groups and other services may be available, people are sometimes reluctant to use these services. People often find it helpful to listen to the stories of people who have been through similar experiences.

  Socialcaretalk.org can be visited anytime by people who are worried about their own or relatives’ memory problems and the many associated practical issues. The information on the site will also help people to prepare for conversations with family, GPs and other health and care professionals. The website will also include resources, based on the research, for health and care workers, and the people who train them. This will help staff to understand what matters to people living with dementia and their carers.

  Aims:
  To find out more about people’s experiences of dementia or caring for someone with dementia
  To create a new section on a website with text and film clips about the experiences on Socialcaretalk.org

  What we will do:
  1. We will look at interviews from previous research project with people with dementia and family carers. This information will tell us what we need to ask people in the interviews.
  2. We will talk to up to 30 family carers, who can tell us about their experiences caring for a friend or relative living with dementia.
  3. We will talk to up to 30 people with early-stage dementia to explore their expereinces of living with dementia. We will audio and/or video-record all the interviews.
  4. We will write summaries of the key topics from the interviews and prepare them, using video/audio clips, for Socialcaretalk.org.
  5. We will ask people in meetings to look at the new section and tell us what they think about it.

• REC name

  Social Care REC

• REC reference

  22/IEC08/0023

• Date of REC Opinion

  25 Oct 2022

• REC opinion

  Further Information Favourable Opinion