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A poll by the Alzheimer’s Society found that 74 per cent of carers in Greater London and Berkshire classed themselves as primary carers, meaning they take on the majority of caring responsibilities for their loved one.
Respondents spent an average of four working days (31.5 hours) a week providing essential practical and emotional support. Nearly four in ten (39 per cent) said they felt they had lost their identity.
Liz Trout, 70, from South Croydon, saw her own world shrink when her husband Eric was diagnosed with mixed dementia in 2016.
She said: “It used to be that Eric made all the decision but that changed after his diagnosis.
“It felt as though he was handing all of the responsibility over to me, and it was really full on. There wasn’t a single aspect of his life that I wasn’t involved in.
“I became his comfort blanket and that made it very difficult to leave him alone. I managed to get him into a day centre for three hours once a week to give myself a bit of respite, and when he saw he again he’d think I’d been gone for two weeks.”
Mr Trout sadly died in hospital, aged 90, after contracting Covid, but Ms Trout had kept her promise to care for him right up until the end.
She added: “He had asked me a long time ago to promise that I’d never put him in a care home, so I never did.
“But caring for a loved one with dementia is incredibly hard. I’d do so much for him and then he would look at me and say ‘remind me who you are.’
“I felt so desperate at times that I’d just sit in the kitchen and cry.”
Alzheimer’s Society surveyed 1,003 unpaid current and former carers of people with dementia from across the UK.
Nationally, more than a quarter (28 per cent) said they are worse off from a financial perspective due to their caring responsibilities, while 16 (per cent) said they are having to use savings.
Almost a quarter said they have had to cut back on luxuries (23 per cent), or hobbies and leisure time (22 per cent) to manage their finances.
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.
Actress Anne-Marie Duff, whose brother was diagnosed with dementia in his 40s, paid tribute to the charity’s work and described unpaid carers as “heroes”.
She said: “Alzheimer’s Society is a lifeline through some of the hardest and most frightening times and a voice to thousands of families who are living with dementia.
“I know first-hand the impact of caring for a loved one with dementia, after my brother Eddie was diagnosed with dementia in his early 40s. Unpaid carers exemplify what it means to be kind and compassionate – quite simply, unpaid carers are heroes.”
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 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 per cent 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.”