Caring for carers: Carer quality of life

From the Autumn 2018 issue of Care and cure magazine, read about Alzheimer's Society-funded research that provides a new way to understand the needs of carers and improve their quality of life.

Researchers with the Lived Experience group

Researchers with the Lived Experience group (Left to right: Yvonne Feeney, Thurstine Basset, Jay Kramer, Katherine Eastland, Ellen Jones, Dr Tom Page and Dr Stephanie Daley)

There are around 700,000 carers supporting people living with dementia in the UK.

Balancing their own needs alongside their caring role can be a challenge and carers may struggle to look after their own wellbeing. It may seem impossible to find the time, or selfish to try to.

Yet, when a carer looks after their own mental, emotional and physical wellbeing, they are in a better position to continue to be there for the person with dementia. It is essential that we find effective ways to support carers and help them to have a good quality of life.

Although there are ways to measure depression, anxiety ‘carer burden’ and the rewards of caring, there are few specific tools available to assess the quality of like of people who care for someone with dementia.

A team of researchers at Brighton and Sussex Medical School, led by Professor Sube Banerjee and Dr Stephanie Daley, set about developing a tool to measure quality of life in carers of people with dementia that could be used across a range of research trials and health and social care services. In developing the tool, they worked with researchers from the University of Kent, UCL, King’s College London, University of Southampton and London School of Economics.

They developed a tool called C-DEMQOL by working out what we didn’t know about carer quality of life. The team identified what factors are important for quality of life through interviews and focus groups with carers and a small selection of care professionals.

7 common themes that influenced carer’s quality of life

  1. The physical and emotional health of the carer.
  2. Feelings of responsibility and the physical and emotional demands put on the carer.
  3. Personal needs, such as a carer’s need for personal time and space.
  4. The carer’s relationship with the person with dementia.
  5. How the carer feels about their role, do they accept it and feel effective?
  6. The carer’s feelings about the future.
  7. Support for the carer from family community and health service.

The C-DEMQOL tool - a list of questions based on these themes - was tested in three stages with a total of 446 carers. They were interviewed and asked for feedback so that the tool could be improved at each stage.

Throughout the study, the researchers worked closedly with the Lived Experience Advisory Panel, all of whom have cared for people with dementia, stroke or long-term mental illness. They helped the research team make sure that the questionnaire truly reflected the concerns and experience of carers.

Dr Stephanie Daley says:

‘Without family carers the dementia care system in the UK would collapse. However, the role of family carer can be challenging, which can affect wellbeing and quality of life.’

The C-DEMQOL tool was developed because it is vital that we sustain and improve quality of life of carers of people living with dementia and will allow health and social care sectors to do just that.

Future researchers will be able to use this tool to better understand and measure the needs of carers and create a better quality of life for all those affected by dementia.

Research we have funded

You can read more about this research and all our funded projects on our research pages.

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