Developing a method to measure the quality of life in family carers of people with dementia

Lead Investigator: Professor Sube Banerjee 

Institution: University of Sussex

Grant type: Project Grant

Duration: 36 months

Amount: £304,831

Scientific Title: C-DEMQOL - Measurement of quality of life in family carers of people with dementia: development of a new instrument for evaluation

Why did we fund this project?

Comments from members of our Research Network:

'It is thorough, comprehensive and insightful .... It addresses a vitally important and often undervalued aspect of dementia care: the role of the family carer'

'This application shows a lively and welcome awareness of the burden on family carers'

'Assessing quality of life of carers is good, and this research could be very useful'

What do we already know?

There are an estimated 670,000 family carers of people with dementia, who provide £11 billion of unpaid care in the UK per year. The work of family carers is vital to support the growing numbers of people affected by dementia.

While for many there is personal satisfaction derived from caring, the experience can also have negative impacts: physically, psychologically and financially. Carers of people affected by dementia often have high levels of anxiety, stress and depression

The experience of caregivers will change over time as the condition of the person they care for progresses. It is important to be able to understand the overall effect that treatments and care have on an individual as well as their effect on specific symptoms throughout their experience. The measurement of quality of life (QoL) has been developed to enable this understanding. While there are good measures of specific symptoms such as carer burden and depression, there is currently no system that is designed to test the overall experience of carers of people with dementia.

What does this project involve?

The project aims to create a new evaluation of Quality of Life (QoL) in family carers of people with dementia. The team have already developed a tool called DEMQOL that can measure the quality of life of people affected by dementia. The new tool will be called C-DEMQOL and will focus on the experience of family carers. 

The researchers will develop a questionnaire to measure QoL by first reviewing the available literature and consulting with family carers, both individually and as part of focus groups. The resulting questionnaire will be tested on groups of carers to ensure the suitability and acceptability of the tool. They will then apply statistical tests to find the measures that will be most effective. 

The questionnaire will then be evaluated to assess its validity and reliability. It will be tested in studies that the team are currently involved in to determine whether it can successfully measure and assess the change in QoL over time. 

The project will make use of Patient and Public Involvement (PPI) to ensure that the voices of family carers are always at the forefront of the development of the tool.

How will this benefit people with dementia?

The final C-DEMQOL tool will be available online and free to use. It is aimed for use by researchers and clinicians working with people affected by dementia and their carers. The use of a single measure of QoL can help to ensure that this assessment is consistent across different research groups. 

Accurately being able to measure carer quality of life will allow researchers and clinicians to develop better strategies and interventions for people with dementia and their carers.