Quarter of unpaid carers of dementia patients in Wales ‘worse off financially’

More than a quarter of unpaid carers looking after loved ones with dementia have said they are worse off financially because of their responsibilities, according to a charity which is calling on the UK Government to do more to support them.

Alzheimer’s Society Cymru said carers are spending the equivalent of four working days a week providing essential practical and emotional support to those they look after and facing money struggles as a result.

Almost four out of five (78%) carers in Wales classed themselves as primary carers, taking on the majority of caring responsibilities for their loved one.

Its survey of 1,003 unpaid current and former carers of people with dementia found 28% said they are worse off from a financial perspective due to their caring responsibilities, while 16% said they are having to use savings.

Almost a quarter said they have had to cut back on luxuries (23%), or hobbies and leisure time (22%) to manage their finances.

Other findings showed that respondents feel they have lost friends (24%) or lack frequent social contact with others (27%) due to their caring responsibilities, and 26% said they feel they have lost their identity.

Almost half (47%) of those surveyed said they have had to juggle caring duties with working full-time, and almost a fifth (17%) said they have had to reduce their working hours.

Sustainable funding

Alzheimer’s Society said it is calling on the government “to take clear action to introduce a sustainable funding model, which pools the risk of care costs to provide people living with dementia with easy and timely access to personalised care”.

It said this must be supported by an “adequately resourced and trained social care workforce”, and there should be better recognition of unpaid carers, coupled with improved dementia-specific support and breaks.

Karen Gibbs, of Penarth, cares for her husband Nick, who has Posterior Cortical Atrophy (PCA), a rare, visual variant of Alzheimer’s disease.

It affects areas in the back of the brain responsible for spatial perception, complex visual processing, spelling and calculation.

Caring for Nick means Karen often can’t pursue her own interests, such as dancing, and has little time for a social life.

She said: “I accept it when I’m called out of dance classes to come home for Nick, but it’s disappointing and sad. I don’t want to leave but there’s no alternative.

“It’s not easy to go out. I hardly ever see my friends – I don’t get the opportunity to make arrangements to see them.

“When I do get that time I need some space for me, to get things done in the house. I don’t have a normal life with friends, but they are very supportive and understand completely that I don’t feel able to socialise in the normal way. It is isolating but it’s the only way I can cope.”

Tethered

The charity’s chief executive, Kate Lee, said: “There are so many family members and friends providing care around-the-clock to keep their loved ones tethered to the world.

“This vital care can be incredibly rewarding but comes at a cost – often coping with changes to behaviour and carrying out daily tasks many of us take for granted.”

A UK Government spokesperson said: “Unpaid carers play a vital role in the lives of their family and friends, which is why we have increased Carer’s Allowance and the earnings limit for people receiving it by nearly 40% since 2010.

“Many carers who are in work and receiving Carer’s Allowance will also be receiving Universal Credit – which includes a carer element worth more than £2,000 a year.”

Alzheimer’s Society Cymru is encouraging people to sign up to a Memory Walk, which sees thousands of people walk for, or in memory of, a loved one with dementia.

This year’s Memory Walk in Cardiff will take place at Bute Park on Sunday, September 17 from 11am.

Funds raised will go towards vital campaigning efforts and support services desperately needed by people who have been devastated by dementia, including carers.