Abstract

People with dementia want to enjoy life and do the things they like doing. It is not always easy for people to find the right information and support when they have just had a diagnosis. 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.

Aims

The study aims to understand what matters to people living with dementia and carers of people with dementia. This research will be used to produce a resource through which people with dementia, their families and carers can find out what helped other people when they faced similar challenges. This will be used to create a new section for a website called Socialcaretalk.org.

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.

The information on the site will also help people to prepare for conversations with family, GPs and other health and care professionals.

Methods
The research team will create around 25-30 summaries, illustrated with interview clips, of topics that matter most to the people we interview. The website will include hundreds of extracts from filmed or audio-recorded interviews with people with direct experience of dementia.