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Alzheimer Scotland is campaigning for fair dementia care for people with advanced dementia. This follows the launch of a report by the Fair Care Commission, which found that currently, people living with advanced dementia are facing £50.9M in care costs every year.

Joanna Boddy, member of the National Dementia Carers Action Group (NDCAN), shares her experience of paying for care:  

“Dementia is a terminal illness. Every family’s journey through dementia is an individual one but we all share the grief and sadness of gradually losing someone and much of what makes them the person they are. This is particularly so when someone is in the advanced stages of the disease with increasing physical and health needs; this can be a prolonged period and the current situation of paying for this care and the sums of money involved can seem very unjust.

“My own situation is that I was a carer for my mum who died in 2017 after a long struggle with dementia. As a result of how the illness impacted on her, she spent a prolonged period as an inpatient in NHS specialist dementia care.  As her illness progressed and her needs changed she was assessed to no longer require NHS inpatient care. Her dementia was advanced but it was felt she could be cared for in a care home.

“This did seem rather illogical, at the very point mum was seen to have advanced dementia, her needs were seen as social care rather than health care needs and as a result she became subject to social care charging policy. However, we did welcome the opportunity this gave her, and us, for her to be in a more homely setting and we were fortunate to find a local care home which had been designed specifically to meet the needs of people with dementia.  She was there for a little over 2 years and was very well cared for. She died there very peacefully as the result of the physical impact of the dementing process on her.

“My professional background was in social care and I had an understanding of the system, but even so I found the process of finding quality care to be difficult and stressful. However the biggest shock was the cost of such care to her. Mum was not a rich person, she was widowed at the age of 49 and worked all her life in the NHS. Her circumstances meant she was a self-funder and had to pay for her care. 

“There is a belief in Scotland amongst the general public that care is free but in fact the public contribution is only covers a part of the fee and the balance has to be met from the person’s own resources.  The amount per week paid by the state over the time mum was in the care home did not change, although her health needs increased during that time.

“Mum had complex health needs as the result of her dementia and required skilled care which was provided for her in the care home, but she paid for her care to the extent of about £70000 for the 27 months she was there.

“Mum was a great campaigner and I think she would have felt very strongly about the inequity of paying for health care because her diagnosis was dementia rather than some other long-term health condition. We were fortunate that mum’s financial situation meant that we could access care that was not available to everyone and were able to have some control over where she was cared for, which is not the case for everyone and this adds to the inequity of the current system.

“Everyone who is in the advanced stages of dementia should have access to quality care on an equal basis. I really so hope that that recommendations as set out in the Fair Dementia Care report are taken forward quickly so that we do not add to the stress by requiring people to pay for their health care.”

Read the report and find out more about how you can support the Fair Dementia Care Campaign.