We need to recognise what Caring Costs. Despite unpaid carers saving the economy an approximate £132 billion per year, a lack of financial, emotional, and physical support means it often has a negative effect on their mental wellbeing, employment potential, and ultimately their finances.
Those caring for a loved one with advanced dementia face substantial inequalities when it comes to paying for care. When a person is living with advanced dementia, their illness has progressed to the point where they require assistance to walk, toilet & communicate. These are healthcare needs - a direct result of an untreatable brain disease. But advanced dementia is still classed as social care and those living with are paying £50.9m in care costs every year. These are costs that they wouldn’t have to pay if they lived with another life limiting or progressive condition. How is that fair?
We’re campaigning to ensure those with advanced dementia received free health and nursing care on a par with those other progressive and life-limiting illnesses. Find out more about “Fair Dementia Care” here. Elaine Deehan, carer and member of the National Dementia Carer Action Group (NDCAN), shares her experience of paying for care:
My mum Pat has been in the advanced stages of dementia since 2015. My family moved up from England to help care for her, however after three years of doing so her dementia progressed rapidly. Up until this point my mum had been going to a day-care centre and a nursing home for respite breaks as we had no other support, however these environments were finding my mums needs more difficult to manage.
Our requirement for more help became more evident when my brother-in-law died and I was unable to get any emergency carer support. My mum was taken into a residential home where she then remained for 10 months at a cost to her. In this 10-month period, she had to visit A&E 11 times because her care home couldn’t meet her healthcare needs. On her last visit to hospital, she was admitted for three weeks due to a fractured skull however still had to cover the costs of her place at the care home. On top of this are the costs to the state for my mum’s stay in hospital.
If my mum had access to the free healthcare on an equal basis as those with other progressive illnesses she would’ve had a better quality of life which would have saved the numerous crisis interventions, which were not only costly in the stress placed on her and her family, but financially to her and to the health and social care system.
The emotional impact of being a carer and watching someone you love deteriorate is hard enough without the added worries of how they are going to pay for care. "Since 2020, my mum has paid £4,510 each month for nursing home fees. The current system is broken and unfair. The cost of care for my mum’s healthcare needs could have been vastly reduced if there were better access to healthcare for my mum in the community.”
I know our family are not alone in this experience. People with dementia are treated unfairly compared to people living with other illnesses. I am asking for the Government to listen to the lived experiences of people with dementia, their families and carers, and for a fairer system for people with advanced dementia.