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We aim to understand the experiences of people with early-stage dementia and those who care for people living with dementia

AIM

In this study we want to understand what matters to people living with dementia and carers of people with dementia. We will use this learning to provide a resource to support people with dementia, their families and carers. We will also create resources for service providers, policymakers and educators.

WHY IS THIS IMPORTANT?

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 provides this opportunity and can be visited anytime by people who are worried about their own or relatives’ memory problems and 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.

WHAT WE ARE DOING

We are interviewing family carers, from a range of backgrounds, who can tell us about their experiences of caring for a friend or relative living with dementia. We are also interviewing 30 people with early-stage dementia. We want to know the kinds of support people are receiving and the role the Covid-19 pandemic played in their support. We also would like ideas about how services and support can be improved.

HOW WILL THIS BENEFIT THE PUBLIC, SERVICE PROVIDERS, EDUCATORS AND POLICYMAKERS?

This research will be used to produce a resource on Socialcaretalk.org. This will form a record of people’s experiences of living with early-stage dementia and caring for a loved one with dementia.

The website will have extracts from people’s interviews, giving examples of the types of social care support people with dementia received and what did and did not work for them. People with dementia, their families and carers can find out what helped other people when they faced similar challenges. We will also use this information to develop resources to support 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.

FURTHER INFORMATION

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

Length of project: May 2022-February 2024

Funder: National Institute of Health and Care Research, School for Social Care Research, Three Schools Dementia Research Programme

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Technical summary

Our team