Research shows carers’ experience can influence how well a person lives with dementia

Led by Dr Catherine Quinn from the University of Bradford, the paper published in the journal Aging and Mental Health shows that if carers feel highly stressed, lack confidence in their ability to provide care and experience social restrictions, the people they care for rate their quality of life, well-being and satisfaction with life less positively.

The research was conducted as part of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Using data from 1283 people with dementia and their carers, the research team sought to find out whether carers’ experiences of caring were related to the way in which people with dementia evaluated their own quality of life, well-being and satisfaction with life.

The IDEAL programme is led by Prof. Linda Clare at the University of Exeter in collaboration with the London School of Economics, the Research Institute for the Care of the Elderly (RICE), the universities of Bangor, Bradford, Brunel, Cardiff, Exeter, Kings College London, Sussex, Newcastle, and New South Wales in Australia, and the charities Innovations in Dementia and Alzheimer’s Society.

Professor Clare said: “Family carers in the UK provide 1.34 billion hours of unpaid care for people with dementia each year, yet practical support for care at home is often limited or lacking. This study emphasises just how important it is to support family carers. A relatively small investment in supporting a family carer benefits both the carer and the person with dementia, and can help to prevent institutionalisation and sustain care at home.”

Catherine from the Centre for Applied Dementia Studies at the University of Bradford said: “This research shows what a carer is experiencing is important, not just for his or her own well-being but also for the well-being of the person living with dementia. This helps us to understand what kind of support may be most helpful for family carers.”

“It is vital that carers are supported both emotionally and practically to reduce stress levels, feelings of social restrictions, and increase feelings of competence in their ability to provide care. This will both benefit carers and improve the potential for people with dementia to ‘live well’.”

This paper was prepared in collaboration with REACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter; King’s College London Institute of Psychiatry, Psychology and Neuroscience; and the Department of Clinical Sciences, College of Health and Life Sciences, Brunel University London.

Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, says: “We all know that the way we feel can sometimes affect the wellbeing of those around us, but this is the first time researchers have conclusively found that when a carer feels stressed and out of their depth, this can negatively impact the welfare of the person with dementia they are caring for.

 “We’re investing in improving the quality of people with dementia’s life, as they have the right to good care and carers deserve to feel valued and supported. Support services must be sure to prioritise carer wellbeing in order to retain the life-changing support they provide and deliver the level of care that people with dementia are entitled to.”

Professor Christina Victor, Vice Dean Research, College of Health and Life Sciences, Brunel University London said: “Our results show how supporting carers can create a virtuous circle by enhancing their competence, reducing stress and enhancing the ability of people with dementia to live well.”

IDEAL is the largest study of people living with dementia and their family members or friends in the UK. IDEAL is funded by the Economic and Social Research Council and the National Institute for Health Research. Since 2018 IDEAL has been extended as an Alzheimer’s Society Centre of Excellence at the University of Exeter making it possible to follow the experiences of the participants for several more years.

For more information, visit http://www.idealproject.org.uk  or follow @IDEALStudyTweet on Twitter.