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World Alzheimer's Day: Carers reveal what it is like to care for a loved one with dementia

Published: Tue 20 Sep 2016

World Alzheimer's Day on 21 September offers the opportunity to acknowledge the huge and hidden contribution made by carers of people living with dementia. As part of a three-year study to develop ways of measuring the impact of caring on quality of life, carers from across Yorkshire have been sharing the reality of what it's like to look after a loved one with dementia.

The study, called DECIDE (Dementia Carers Instrument Development), is co-funded by the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). DECIDE aims to develop a new measure for assessing the quality of life of carers. Delivery of the work is supported in the region by the National Institute for Health Research Clinical Research Network.

Carers have been speaking in interviews about their experiences of caring for a loved one with dementia as part of this study, led by the University of Leeds, with collaboration from the University of Bradford.

One said: “I feel I’m attached on a piece of string to my husband and that string is getting shorter and shorter and shorter.”

Another said: “I realised that my wife was getting much worse; it felt like somebody who I'd known from the age of 24 had walked out of my life and been replaced by somebody who looked like her but was totally different.”

Another spoke of their feelings at the constant demands of care: “It’s awful, and I do feel angry and resentful that what was so joyful in my life has gone and I can’t get it back, and I’m never going to get it back, it’s going to get less and less and less, and I can’t feel easy about that. I can’t feel benign about it, I just feel angry and resentful.”

However, there are positive aspects of caring too, as another explains:

“I think you realise that there’s more to life than just running round working, you realise that you only have so long, you know, either in simply your life’s time or the quality that you’ve got, so yeah, I think you tend to focus on the stuff that matters….I think we’re probably closer than we were and we spend more time together than we used to as well.”

Whilst dementia is a progressive condition many people live well with dementia for many years. Caring for someone with the condition can be hugely stressful for carers but there is support available and many carers develop new friendships as a result of attending dementia cafés, for example, along with the person they care for.

Dr Penny Wright, of the School of Medicine at the University of Leeds, is leading the study. She said: “We hear often about how difficult it is for people living with dementia and rightly so – but what about carers’ quality of life? The interviews we’ve done bring this into sharp focus. We hope this research will lead to development of a new measure with potential impact in three areas: identification of carers most at need, to inform development and evaluation of services, and for possible use in heath economics.”

Professor Jan Oyebode, of the University of Bradford, is co-investigator on the study. She said: “These interviews highlight that dementia is a family affair, affecting all aspects of the lives of relatives as well as those who live with dementia. It is vital that services support carers and we hope our measure will provide a tool that promotes recognition of their needs.”

The interviews are just one strand of a multi-faceted project, which also has the Alzheimer’s Society, Dementia UK, Young Dementia and Carers UK as partners, along with Bradford District Care NHS Foundation Trust.

The project team, which includes academics from the universities of Cambridge, Birmingham, Bangor in north Wales and Exeter, is collaborating with Carers Leeds on the work.

Val Hewison of Carers Leeds said: “In my work I meet carers of people with dementia daily. I know for certain that no two caring situations are the same. Families cope the best way they can and want to do the very best for their loved one. Some families can rise to their caring role and the changes it brings to life, although there is no doubt it brings its stresses and feels like being on an emotional rollercoaster….and some families find it a real and sometimes an impossible challenge.

“I am proud of our Dementia Carer Support Team of workers who give carers time and space to talk about their caring role. To have that space to talk privately, away from immediate family members proves a life line to many. It’s often very difficult to admit you’re struggling when other family members see you as the ‘glue’ keeping their family together.”

Dr Catherine Moody, programme manager for neurodegeneration and stroke at the Medical Research Council, said: “Friends and family often play an invaluable role in caring for people with Alzheimer’s disease, and as the disease progresses, this can affect their own health and wellbeing. The MRC is committed to fighting dementia at all levels, and through this important study we are supporting research to improve the care received by people with dementia and those around them. The findings could have important implications for the way the quality of life of these dementia carers is measured, and should in turn improve the provision of vital help, advice and support services.”

For more information on dementia research in Yorkshire, go to www.joindementiaresearch.nihr.ac.uk

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