Evidence
Alert

Working may improve quality of life for carers of people with dementia

Those who care for people with dementia are likely to report a better quality of life if they also work outside the home. This may be linked to higher self-esteem.

A study included almost 1,300 people caring for relatives with dementia. It found that carers with jobs outside the home were likely to be younger and caring for a parent or relative rather than a spouse.

After taking account of age, the researchers found that working carers reported better quality of life (in terms of mobility, pain, anxiety and other aspects of health) than non-working carers. But working carers did not necessarily have better well-being (state of mind).

Overall, the study found advantages to supporting carers to remain in paid work outside of the home.

What’s the issue?

In the UK, an estimated 270,000 people care for someone with dementia while also working outside the home. It is not clear how working outside the home affects their quality of life or well-being, as previous studies have found conflicting results. This study aimed to explore their experiences and compare them to carers who do not work outside the home.

What’s new?

Researchers received questionnaires from 1,283 people who cared for someone with dementia. They analysed responses from 215 carers who worked outside the home and 973 carers with no additional working role.

The well-being questionnaire asked carers how strongly they agreed/disagreed to statements such as ‘I have felt cheerful and in good spirits’ and ‘I have felt calm and relaxed’ in the past two weeks.  The quality of life questionnaire asked carers about health-related issues such as mobility, self-care, usual activities, pain or discomfort and anxiety or depression. Carers were also asked how they felt about their caring responsibilities.

The results were adjusted to take account of the carer’s relationship with the person with dementia, and severity of dementia.

People who worked outside the home scored somewhat higher for quality of life. Working status alone accounted for about 2% of the differences in quality of life scores.

Those who worked outside the home felt better about themselves and more positive about their caring role. However, they felt less confident about their competence as carers. The researchers suggested they could benefit from extra education and training as carers.

Carers who did not work outside the home felt more competent in carrying out the caring work. But they were also reported higher levels of stress and were less able to have social interests and activities outside of caring.

For all carers, whether they worked outside the home or not, higher quality of life was linked to:

  • higher self-esteem
  • reduced stress
  • better social support
  • having a positive view of the value of their caring role.

Why is this important?

The study shows that individual characteristics such as a carer’s self-esteem have a big impact on their quality of life. This is in addition to whether or not they work outside the home. Social support was important in helping carers cope with their role.

The finding that people who work outside the home report higher quality of life suggests it is important to support working carers, for example through flexible working hours.

What’s next?

The study does not confirm whether working outside the home led to better quality of life. It could be the other way round. People with better quality of life may be more likely to be able to work outside the home.

Despite this, the researchers say the findings point to “relatively inexpensive interventions” that could improve carer’s quality of life and wellbeing. These include:

  • supported work opportunities for carers
  • education for working carers to improve their skills and confidence in caring     .

The research is part of the IDEAL (Improving the experience of Dementia and Enhancing Active Life) Programme, a UK national longitudinal study about living with dementia.

You may be interested to read

The full paper: Clarke R, and others. Quality of Life and Well-being of Carers of People With Dementia: Are There Differences Between Working and Nonworking Carers? Results From the IDEAL Program. Journal of Applied Gerontology 2020;733464820917861

The IDEAL website hosts regular newsletters and information about their dementia research

The DETERMIND website looks at inequality in provision of services to people with dementia and their carers

Funding

The research was funded by the NIHR, the Economic and Social Research Council (UK), and the Alzheimer’s Society.

Commentaries

Study author

At the outset, we anticipated that work would provide a buffer for carers, and perhaps that this would have made a larger difference.  Valuing both oneself, and the importance of caring, was important to the well-being of carers. The clear implication is that psychological and social support systems can promote carer morale and health.

Progress is being made in provision of family-supportive work environments for carers, but these improvements are not found in all organisations. Our detailed examination of factors affecting carer well-being argues for strengthening of policy in these areas. Equally, working carers reported lower carer competence. Educational input is needed to support better skills and confidence.

Jennifer Rusted, Professor of Experimental Psychology, School of Psychology, Sussex University

Staff nurse

Government policy associated with flexible working and improved support and rights for carers would help more carers who are combining their caring and working roles. In this study, working was associated with improved quality of life of carers. Therefore, improving carers’ ability to combine working with caring by policy change or education would be beneficial.

Improved public awareness would make it more likely that employers would facilitate carers within their organisation. Carers themselves would benefit from improved public perception and feeling that they are valued within the community.

Social care guidelines already acknowledge the benefits of unpaid carers. Research that highlights the needs of the carers themselves and the importance of their mental and physical health is of benefit to society as a whole, as well as to the carers themselves.

Nurse at a Private Care Home. Name and address supplied

Conflicts of Interest

None declared.