Unpaid dementia carers are experiencing a postcode lottery in quality of life, with families in some parts of England facing significantly greater challenges than those elsewhere.
Caring for a loved one with dementia is forcing many people to give up friendships, hobbies and employment, according to troubling new figures. However, the emotional, physical and financial pressures are not distributed evenly, data from the Government’s Survey of Adult Carers in England reveals.
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 a score of just 5.8. Across England, dementia carers have an average score of 7.1, below the 7.3 recorded among carers overall.
Alzheimer’s Society praised the unpaid carers who give “extraordinary amounts of themselves” to support people they love, but warned that too many are sacrificing their own wellbeing in the process.
The charity’s analysis indicates that financial hardship, providing at least 100 hours of care each week and experiencing loneliness have the strongest negative effect on carers’ quality of life.
By comparison, carers fare better when they are satisfied with the assistance available, included in decisions about care and able to find clear information and advice.
The findings have been released as a major Daily Mail appeal aims to raise millions of pounds for a pioneering support network designed to help unpaid dementia carers.
Dementia Carers Together will provide six-week courses across the country for relatives and friends supporting someone with the condition. Run in partnership with Alzheimer’s Society, the sessions will offer practical guidance on carers’ rights and the services they can access. They will also give attendees the chance to connect with others facing similar pressures, helping tackle the loneliness, fatigue and overwhelming responsibility that often accompany dementia care.
Around 2.5 million people in the UK provide some form of care for a person 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 someone with dementia, making it the second most common care category after physical disability and an increase from 35.1 per cent in 2016/17.
More than a third of dementia carers, or 38.1 per cent, provide 100 hours or more of care each week—the equivalent of over 14 hours a day. Although 71 per cent are retired, 14.3 per cent are out of work because of their caring responsibilities. Only 15.2 per cent hold paid jobs, compared with 19.1 per cent of carers overall.
Almost half, or 49 per cent, say they feel lonely either often or sometimes, 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, yet far too many are paying for it with their own quality of life.
“Supporting someone with dementia can mean being available around the clock, giving up time with friends, work and the chance to look after your own wellbeing. The ability to cope with these demands should not depend on where someone lives.
“The figures show 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 can access information and advice more easily.
“Although the results do not capture every factor involved, they demonstrate how essential it is for every family to receive the information and support it needs, wherever it is based.”
Dementia carers are facing a quality-of-life postcode lottery, with some regions placing far greater pressures on families than others (Stock photo)
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“That is why our Dementia Carers Together service will provide practical advice and opportunities for carers to exchange experiences and learn from one another, online and in person. We want them to feel better supported as they navigate the challenges of caring for someone with dementia.”
The Survey of Adult Carers in England is carried out by councils every two years, with its findings published by the Department of Health and Social Care. It gathers the views of unpaid carers known to local authorities 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 are very or extremely satisfied with the support they receive. That compares with 37 per cent in the five areas with the lowest scores. Carers in the higher-scoring areas are also more likely to feel included in care discussions—76 per cent compared with 65 per cent—and to say information and advice are easy to find, at 73 per cent versus 58 per cent.
In the five areas where quality of life is lowest, 52 per cent of carers say their responsibilities have 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 each week, at 43 per cent versus 26 per cent, and to experience loneliness often or sometimes, at 52 per cent compared with 36 per cent.
Alzheimer’s Society stressed that the survey includes only carers known to their council. Those who have no contact with social services may be among the people facing the greatest difficulties.
A Government spokesman said: “Unpaid carers carry an enormous burden every day, and that pressure is particularly intense for those looking after loved ones with dementia.
“We are committed to giving these selfless people the support they deserve. That includes delivering a new action plan for unpaid carers, introducing the biggest increase in Carer’s Allowance since the 1970s and placing unpaid carers at the centre of the Prime Minister’s plans to transform social care across the country.”
