Dementia carers are facing a postcode lottery when it comes to quality of life, with families in some parts of England struggling significantly more than those elsewhere.
Caring for a loved one with dementia is forcing many people to give up friendships, hobbies and careers, according to deeply concerning figures. However, the emotional, physical and financial pressures are not shared equally, data from the Government’s Survey of Adult Carers in England shows.
Dementia carers in County Durham report the highest quality-of-life score, at 8.7 out of 12. By contrast, carers in Brent and Shropshire record scores of just 5.8. Across England, dementia carers have an average score of 7.1, below the 7.3 recorded for carers overall.
The Alzheimer’s Society praised unpaid carers for giving “extraordinary amounts of themselves” to support people they love, but warned that “far too many are paying the price with their own quality of life”.
The charity’s analysis indicates that financial hardship, providing more than 100 hours of care each week and loneliness have the greatest negative effect on carers’ wellbeing.
By contrast, carers’ quality of life improves when they are satisfied with the support available, included in discussions about care and able to find information easily.
The findings have been published as a major Daily Mail appeal seeks to raise millions of pounds for a pioneering support network for unpaid dementia carers.
Dementia Carers Together will provide six-week courses nationwide for relatives and friends supporting someone with dementia. Run in partnership with Alzheimer’s Society, the sessions will offer practical guidance on carers’ rights and available services. They will also connect attendees with others in similar circumstances while helping address the loneliness, exhaustion and overwhelming responsibilities that carers often experience.
Around 2.5 million people in the UK provide some form of care for someone with dementia, and four in five have reached crisis point at least once. Nearly four in ten carers—38.7 per cent—say they look after a person with dementia, making it the second most common caring responsibility after physical disability. The figure has risen from 35.1 per cent in 2016/17.
More than a third of dementia carers, or 38.1 per cent, provide at least 100 hours of care every week—the equivalent of more than 14 hours a day. Although 71 per cent are retired, 14.3 per cent are out of work because of their caring duties. Just 15.2 per cent have paid employment, compared with 19.1 per cent of carers overall.
Almost half of dementia carers, 49 per cent, say they feel lonely often or occasionally, while 19 per cent say they have no control over their daily lives.
Michelle Dyson, chief executive of Alzheimer’s Society, said: “These are people giving extraordinary amounts of themselves to care for someone they love, and far too many are paying the price with their own quality of life.
“Caring for someone with dementia can mean being on call around the clock, giving up time with friends, work and your own wellbeing. Whether you can manage those demands should never depend on where you happen to live.
“Yet the data shows that in areas where carers report a better quality of life, more are satisfied with the support they receive, feel included in care discussions and say information and advice are easier to access.
“Although these findings cannot identify every factor involved, they reinforce how essential it is for every family to receive the information and support it needs, wherever it lives.
Dementia carers face a postcode lottery over quality of life, with families in some areas under far greater pressure than others
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How can the government ensure dementia carers receive equal support, regardless of where they live?
“That is why our Dementia Carers Together service will provide practical advice and opportunities for carers to share experiences and learn from one another, online and in person, helping them feel better supported through the challenges of caring for someone with dementia.”
Councils conduct the Survey of Adult Carers in England every two years, with the Department of Health and Social Care publishing the results. It gathers views from unpaid carers known to their local authority to assess how caring affects their quality of life.
Among the five areas with the highest quality-of-life scores, 50 per cent of carers say they are very or extremely satisfied with the support they receive. That compares with 37 per cent in the five lowest-scoring areas. Carers in the highest-scoring areas are also more likely to feel involved in care discussions—76 per cent versus 65 per cent—and to say information and advice are easy to find, at 73 per cent compared with 58 per cent.
In the five areas with the lowest quality-of-life scores, 52 per cent of carers say caring has caused financial difficulties, compared with 38 per cent in the five highest-scoring areas. They are also more likely to provide at least 100 hours of care a week, at 43 per cent versus 26 per cent, and to experience loneliness often or occasionally, at 52 per cent compared with 36 per cent.
Alzheimer’s Society warned that the survey includes only carers known to their council. Those who are not in contact with social services could be among the people facing the greatest difficulties.
A government spokesman said: “Unpaid carers shoulder an enormous burden every day, and that falls especially hard on those looking after loved ones with dementia.
“We are determined to give these selfless individuals the support they deserve. That is why we are introducing a new action plan for unpaid carers, delivering the biggest increase in Carer’s Allowance since the 1970s and placing unpaid carers at the centre of the Prime Minister’s mission to transform social care in our country.”
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