Many people with dementia living in the community are supported by unpaid family caregivers, saving the UK economy 11 billion pounds a year in health and social care costs (Alzheimer’s Society, 2014).

Although caring for a loved one is often accompanied by positive experiences, it can also be challenging at times. The wellbeing of carers is very important and this study aims to find out what factors influence this and how we can best support carer wellbeing. The findings from this study may lead to the development of new interventions (or matching of existing appropriate interventions) that could help carers maintain their wellbeing across the entire journey of dementia care.

Key Research Questions

To identify carer- and patient-level predictors of carer quality of life at different stages of dementia. To examine patterns of formal and informal service and support use among carers of people with mild, moderate, and severe dementia.

Research Design and Outputs

Participants will need to be unpaid carers of a person with dementia over the age of 18. Participants also need to have a first-degree relationship (parent, spouse/partner, sibling or adult child) with a person with dementia. One hundred and eighty participants will be invited to an assessment session. The session will take a maximum of 90 minutes and will be conducted in a setting most convenient for them individually (either in their own home, at the university, or NHS facilities). During the assessment session, participants will be asked to complete self-reported and interview-based questionnaires that assess knowledge of dementia, their own physical and mental health, quality of life, and attitudes towards themselves and caregiving roles. We will also assess the level of disability and behaviour symptoms of patients (those to whom care is being given) through carer interview. We will then analyse the data to see which factors are most strongly related to carer wellbeing at which stages of dementia.

The Research Team

Professor Eneida Mioshi (UEA) and Dr Naoko Kishita (UEA)