What it is like to be a spousal carer – perspectives from 2 women from Ireland and the United Kingdom of Great Britain and Northern Ireland

"My caring role isn't so much task-driven. Kevin can do all the things like brushing his teeth, getting dressed, everything like that. It's Kevin's spatial awareness that's mixed up so there are lots of little dangers that he needs me to look out for and support him with."

Helena, from Kanturk, Ireland, is married to Kevin (60), who was diagnosed with Lewy body dementia, a degenerative disease of the brain that affects behaviour, cognition, movement and the regulation of automatic bodily functions, 7 years ago.

"I now have to do all the driving because he doesn't have the spatial awareness to drive safely," she says. "He also gets tired quickly when doing physical tasks, such as mowing the lawn or chopping wood for the fire, so I often have to end up doing that, too."

Nearly 1 in 5 adults in the European region is actively engaged in providing care to a family member, friend, or neighbour. Most of this care is provided by women, like Helena, who are aged between 45 and 64.

Valli, from Oxford, United Kingdom of Great Britain and Northern Ireland, has also seen her life change dramatically, too, since her husband, Des (67), also started showing signs of Lewy body disease.

"Des used to do all our accounts, pay the household bills and do the financial planning, but now he can't," says Valli. "I have to manage Des' appointments and make sure he takes medication when he should, as well as do all our travel planning. A lot of things have transferred into my inbox. I have had to take control."

The disease can also cause some quite disturbing psychotic episodes, as Helena relates. "Kevin often gets visual hallucinations where he sees people that aren't there, nasty phantom smells, which he describes as being like rotting flesh, and he regularly has horrific nightmares. I'm there to comfort him in those difficult moments."

The United Nations have declared 29 October 2023 as the first International Day of Care and Support, highlighting the need to invest in the care economy and to create gender-responsive, disability-inclusive and age-sensitive care and support systems, with a view to recognizing, reducing, valuing and redistributing unpaid care and domestic work and support.

Coming to terms with their new lives

Not surprisingly, it has taken several years for both couples to adjust to the fundamental change in their circumstances, as Valli explains. "It took a long time for Des to accept the diagnosis. For the first 2 years or even more, I helped him to come to grips with the fact that he actually had dementia, that it was a reality, and that it's not like a broken leg that will get fixed. It's here to stay."

And for Des, that support has been crucial. "Valli is my wife, my best friend and my inspiration," Des explains. "She's kept me on the road. Yes, I'm the person who got the diagnosis, but Valli has the energy and the intellectual power to get us through the hardest moments."

"Our greatest strength is that we've managed to stay positive and robust and that's largely due to Valli's strength of being able to give a boost to daily life that I wouldn't have without her."

Getting information and support

The change in her husband's health led Valli to find out as much as she could about Lewy body dementia, as well as the external support they could call upon if needed.

"I'm a very pragmatic person, so when Des got his diagnosis, the first thing I did was to go online and research what it meant, both in the immediate future and in the long-term, so that we would know what to expect," says Valli.

Meeting other people with dementia and clinicians working in the field has also helped both her and Des understand the disease better. "Our GP referred us to the UK Young Dementia Network, so we attended many of their meetings to get a sense of how dementia was affecting different people at different stages of the disease and how they were able to manage that," adds Valli. "We also attend meetings of the University College London (UCL) Rare Dementia Support group - with separate meetings for those with the disease and their carers - which we've both found really helpful at a practical, emotional and scientific level."

For both couples, having a supportive circle of friends and family has definitely made their dementia journey easier.

Positive journey partners

Valli admits, however, that she is not keen on the label, carer, preferring to look at their situation as a changing journey in which both her and Des are accompanying passengers as part of the ride.

"At the beginning, it was all about finding out about the disease, coming to terms with it, getting the financial support and attending doctor's appointments to manage Des' physical health," says Valli. "Now, it's about adjusting to the change in his symptoms and researching and getting the things that will help him with those, whether that's new medication or assistive technology, for example."

She thinks it is crucial to focus on Des' abilities, not disabilities, and stresses the need to maintain his agency - his ability to think and do things for himself - for as long as possible.

"It's very easy for people who are experiencing dementia to find their lives are shrinking and they don't do as much or don't go out as much anymore," says Valli. "But while Des is still able to manage a wide range of tasks and situations, he can still be a very active citizen."

Campaigning for better understanding and support

Both couples are now actively involved in raising awareness of Lewy body dementia and its impact on carers, both in their countries and internationally.

Over the last 6 years, Kevin has written 2 books on his experience of the disease and given numerous media interviews for Irish television, radio and press. He is Chair of the Irish Dementia Working Group, Vice-Chair of the European Working Group of People with Dementia and co-founder of Lewy body Ireland.

"I keep myself deliberately busy," Kevin says, "because there will come a day when I won't be able to do such things. Obviously, I want to delay that day for as long as possible."

Helena is Chair of the Dementia Carers Campaign Network in Ireland, which is focused on eliminating cultural stigma around the disease.

"Although things are improving, many people, particularly in rural areas, are ashamed of dementia and don't come forward for support," she says. "There are also some groups, such as travelers, who are not being reached. We want to change that."

Des and Valli, meanwhile, have capitalized on their skills as teachers and educationalists to communicate about the changes in their lives because of dementia.

"We've translated the things we were doing in our pre-dementia lives into things relevant to our present state," says Valli. "And by that, I mean giving presentations and talks, and meeting others from across Europe with experience of the disease at events such as Walking the Talk for Dementia [an annual walking event and symposium in Spain bringing together health-care professionals, advocates, policy-makers, researchers and people living with dementia and their carers from over 20 countries]."

WHO/Europe support to informal carers

WHO/Europe, in partnership with the European Commission, is working to raise awareness of the detrimental health and well-being effects of intensive or prolonged caregiving and to improve access to training for caregivers. One way WHO/Europe is doing this is through the development of an interactive, open-access course to help informal caregivers access information, knowledge and skills required for the delivery of care and to support their own self-care and well-being.

WHO/Europe also works closely with countries to share learning on innovative interventions to protect informal caregivers, promote a more equitable distribution of care tasks, and improve coordination and cooperation between professional care workers and informal caregivers.

Throughout all these activities, WHO/Europe tries to ensure that informal caregivers and care receivers are engaged in the co-development and co-production of relevant materials and policies.

Here are some additional facts about informal carers in the Europe.

• As many as 1 in 10 children and young adults, aged 18 to 29, are also carers in the European Union.
• 1 in 10 adult carers in the European Union has been forced to give up work or reduce their working hours to provide care for a family member.
• Providing informal care over prolonged periods of time and at a high intensity can have detrimental and lasting impacts on carers' health and well-being; mental health problems among informal carers are reported as being 20% higher than among non-carers in Europe.
• The economic value of time spent on informal care in Europe amounts to 3.6% of GDP - more than public expenditure on formal long-term care services for most countries in the European Union.

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