What is it like for people who care for someone living with dementia?

This post was written by Dr Barbora Silarova (Research Associate at PSSRU, University of Kent), Aakta Patel (Research Adviser, representing Patient and Public Involvement), Della Ogunleye (Research Adviser, representing Patient and Public Involvement), and Dr Stacey Rand (Senior Research Fellow, PSSRU, University of Kent)

What do we know about people living with dementia and people who support them?

There are currently around 885,000 people living with dementia in the UK [1], of whom 500,000 are women and around 25,000 are from Black, Asian and minority ethnic (BAME) communities [2]. Supporting the people living with dementia in the UK, are around 700,000 spouses, family members and friends (often referred to as ‘carers’)[3]. Between 60 and 70% of carers are women [4].

For families and friends who care for someone with dementia, community-based social care services may allow carers to continue in paid employment and to have time for hobbies, friendships and to stay healthy. Some services, like carer support groups, may also help carers feel more supported and connected with others in a similar situation.

Talking to carers, we know that supporting someone with dementia is rewarding and frustrating at the same time, often challenging, especially when juggling different responsibilities, and people worry about the present and the future simultaneously.

To understand what the needs of people who support someone with dementia are, and how the social community-based services may improve their quality of life we need a tool to measure this. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that might be affected by social care services (for example, feeling supported, having control over everyday life).