Dementia carers' postcode lottery: How looking after loved ones hits families' quality of life

Dementia carers are facing a quality-of-life postcode lottery – with those in some parts of the country struggling far more than others.

Looking after a loved one with the disease is robbing people of their friends, hobbies and career, heartbreaking figures reveal. But the immense emotional, physical and financial toll is not being spread equally, the Government's Survey of Adult Carers in England shows.

While dementia carers living in County Durham are coping best, with a quality-of-life score of 8.7 out of 12, those in Brent and Shropshire score just 5.8. Overall, dementia carers fare worse than other carers, with an average score of 7.1 versus 7.3.

Alzheimer's Society praised the unpaid heroes for giving 'extraordinary amounts of themselves' to care for someone they love, but warned 'far too many are paying the price with their own quality of life'.

Analysis of the figures by the charity suggests the factors that have the most negative impact on carers' quality of life are financial difficulty, providing more than 100 hours of care a week and feeling lonely.

The factors that have the most positive impact are being satisfied with support, being involved in discussions about care and information being easy to find.

The findings come as a major Daily Mail appeal is seeking to raise millions for a pioneering support network for unpaid dementia carers.

Dementia Carers Together will deliver nationwide six-week courses for friends and relatives of those living with the disease. Delivered in partnership with Alzheimer's Society, the sessions will give carers vital support and information about their rights and the services available. They will allow attendees to meet others in a similar situation and help to address the loneliness, exhaustion and overwhelming responsibilities many face.

Some 2.5million people in the UK provide some form of care for those with dementia, and four out of five have reached crisis point at least once. Almost four in ten carers (38.7 per cent) say they care for someone with dementia, second only to physical disability and up from 35.1 per cent in 2016/17.

More than a third (38.1 per cent) of dementia carers provide 100 hours or more care every week, the equivalent of more than 14 hours a day. While 71 per cent of dementia carers are retired, 14.3 per cent are not working because of their caring responsibilities. Only 15.2 per cent are in paid employment, compared with 19.1 per cent of carers overall.

Half (49 per cent) of dementia carers say they feel lonely often or some of the time and 19 per cent say they have no control of their daily life. 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 day and night, sacrificing time with friends, work and your own wellbeing. Whether you can cope with those demands should never depend on where you happen to live.

'But this data shows that in areas where carers report a better quality of life, more carers are also satisfied with the support they receive, feel involved in discussions about care and find information and advice easier to access.

'While these findings cannot tell us all the factors involved, they underline just how vital it is that every family can access the information and support they need, wherever they live.

Dementia carers are facing a quality-of-life postcode lottery – with those in some parts of the country struggling far more than others (Stock photo)

'That is why our Dementia Carers Together service will offer practical advice and opportunities for carers to share experiences and learn from others, both online and in person, helping them feel better supported through the challenges of caring for someone with dementia.'

The survey of adult carers in England is conducted by councils every two years, with the results published by the Department of Health and Social Care. It seeks the opinions of unpaid carers known to their local authority, to understand the impact of caring on their quality of life.

In the five areas with the highest quality of life, 50 per cent of carers are very or extremely satisfied with their support, compared with 37 per cent in the five lowest. More carers in these areas also feel involved in discussions about care (76 per cent compared with 65 per cent) and more find information and advice easy to find (73 per cent and 58 per cent).

In the five areas with the lowest quality of life, 52 per cent of carers say caring has caused them financial difficulty, compared with 38 per cent in the five highest. More carers in these areas also provide 100 or more hours of care a week (43 per cent compared with 26 per cent) and more feel lonely often or some of the time (52 per cent and 36 per cent).

Alzheimer's Society cautions that the survey covers only carers known to their council and those not in touch with social services may well be the ones struggling the most.

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 those selfless individuals the support they deserve, which is why we are implementing a new action plan for unpaid carers, making the

biggest increase in the Carer's Allowance since the 1970s, and putting the needs of unpaid carers at the heart of the Prime Minister's mission to transform social care in our country.'

Dementia Carers Together

Dementia Carers Together is raising money to fund new courses across the UK to give tens of thousands of struggling unpaid dementia carers vital emotional and practical support. 

For further information, visit dailymail.com/dementia

How you can donate

Online: Click here.

By Text: To donate £10, text CARER to 70115. To donate £20, text LOVE to 70115. To donate £30, text HEART to 70115. Texts will cost your donation amount plus your network charge.

By phone: Call 0300 1234577. Standard charges may apply.

By cheque: Send cheques made payable to Mail Force Charity to:

Dementia Carers Together, 42 Phoenix Court, Hawkins Road, Colchester CO2 8JY

READ MORE: 

• As the Mail launches landmark campaign for dementia carers, TV news veteran and sufferer Alastair Stewart says: 'I'm at the point where I wonder if life is worth living... I only exist because of Sal' 
• SARAH VINE: It was a blessed relief when my dementia stricken father finally died
• Help us back UK's dementia carers: Daily Mail launches major appeal to fund vital new support network
• All you need to know about the Mail's Dementia Carers Together appeal 
• 'The despair in her eyes was unbelievable': In heartbreaking detail, a husband recounts how his wife's Alzheimer's diagnosis devastated both of their lives