Elaine Deehan’s Mum, Pat, lived with the advanced stages of dementia for nearly ten years. As her former carer - and as a current member of the National Dementia Carer Action Group (NDCAN) – Elaine shares her family’s experience of having to pay for care:
“As for all families affected by dementia, Mum’s diagnosis had a big impact. I had settled in England with my family, but as the years passed and her condition gradually progressed, we decided it would be best to move closer to home so that we could help with her care. That was back in 2015, and for a few years, her routine was one of regular day-care centre visits, along with short-term nursing home respite, as we had no other support. But from 2018, Mum’s dementia progressed quite rapidly and soon, these environments began to find her needs more difficult to manage.
“As a family, we needed more support, but it became more and more difficult to source. Things reached a climax when my brother-in-law died, and we needed emergency care. Our only option was for Mum to go into a residential home – where she remained for the following 10 months. In that time, she had to make 11 visits to A&E due to emerging healthcare needs that the care home couldn’t meet. On one occasion, she had to be admitted for three weeks with a fractured skull. We wrongly assumed that her associated care would be free – but it wasn’t. While Mum was in the care of the NHS – which obviously bore its own cost to the taxpayer - she also had to continue paying for her place at the residential home.
“It is a fallacy that care for people who are living with dementia is free - it is not. Before she sadly passed away earlier this year, my Mum had to accept the cost burden for her own care. This was hard to understand given that so many of her needs were clearly health related. It’s difficult enough to watch your loved one deteriorate, without the added worry of how their care is going to be paid for. And the costs are not insignificant, they can wipe out a lifetime of savings in mere months. For example, it cost Mum £14,000 for three months in a nursing home alone, which doesn’t include any of the care she received either beforehand or afterwards. It's for this reason, and knowing what other families also face, I feel justified saying that the existing system is broken and unfair.
“Mum didn’t hope to spend the last years of her life in a care home, nobody does. Although we may wish for certain things for our futures – the path we eventually take can be very different, owing to the current care infrastructure. Our family learned that the hard way. Mum’s choice was taken away – once she reached the stage of needing an enhanced level of care, the only possibility was for her to enter a nursing home, at great expense. We had no other option, and I know our family is not alone in this experience. Families up and down the country have endured, or are facing, the same turmoil. That’s why I feel so passionately about my work with NDCAN. I was Mum’s voice as she became less able to fight for her own rights and I am committed to continuing this through persistent campaigning and awareness-raising work.
I strongly believe that public healthcare systems should offer equitable provision for everyone, irrespective of diagnosis. Whether someone has dementia or another progressive condition like cancer, there should be no differentiation in the financial liability for their care. Because Mum was living with advanced dementia, rather than any other terminal condition, she was faced with a bill because her needs were deemed to require a social care, rather than a medical response. I believe this is fundamentally wrong – people with advanced dementia can develop very complex health care needs. It’s a juxtaposition that must be addressed so that people in this situation are no longer disproportionately subjected to social care charges for undeniable health and nursing care needs. Where’s the equality?
Looking ahead, I will continue to use the NDCAN platform to ensure that people who are dealing with these systemic failures are listened to. I feel passionately that the struggles we faced as a family could have been avoided… being able to exercise your voice, and your choice over fair and equitable future care is so important and something I will carry on fighting for.
As an NDCAN committee member, I will take every opportunity to have my say – and I call for the recommendations of the newly published Long Term Care report not only to be heard, but to be acted upon.
