People with dementia spend almost £15bn of their own money waiting for Government care reforms, Alzheimer’s Society reveals

New analysis published today (Tuesday 9 July) by Alzheimer’s Society reveals people living with dementia have had to spend almost £15bn of their own money on social care since Government reforms were first promised in March 2017. 

Alzheimer’s Society’s shocking analysis builds on a damning picture supported by a number of emerging reports including the new ADASS budget survey, and Healthwatch dementia care review report. All the evidence shows that, since the promise of the Green Paper on social care reform in March 2017, the dementia care crisis has reached absolute breaking point – and is financially punishing people with dementia, their families, and the NHS:

• People affected by dementia have spent almost £15bn (£14.47) of their own money on social care since March 2017, compared to less than £10bn (£9.3) by Government
• Since March 2017 people with dementia have spent more than 1 million unnecessary days stuck in hospital beds, despite being well enough to go home, at a cost to the NHS of over £340 million 

In the two year period, the total number of people over 65 diagnosed with dementia has increased by 33,000 in England, adding significantly to all those struggling to get the dementia care they need. Alzheimer’s Society has organised a photo exhibition of 12 families in Parliament today exposing the appalling reality so many families affected by dementia across the country face. Including stories of a woman who has had to askpassers-by to come into her house to help her lift her husband off the floor, and a woman who couldn’t leave hospital because she still didn’t have a care assessment after a year of waiting, the exhibition reveals the awful circumstances people find themselves in due to the failing system. One person attending today is Phillip Scott, whose photograph is featured with his mother Sylvia. Philip Scott, 59 from London, said: “When my Mum was diagnosed with dementia at 82 she received little support from health professionals and my sister and I did not receive any guidance on what was to come. 

“After social services moved her into a care home it was only paid for by the local authority for the first six weeks. After that my Mum had to become self-funding for her care. After all of my Mum’s savings were used up; we had to use the proceeds from the sale of her home. It took three attempts before we managed to get Continuing Health Care funding for her. The whole process of having to argue again and again why my mum needed support was really harrowing. Even now, they have come back several times to reassess her, and we are afraid that the funding will be taken away. In total we have spent around £160,000 on my Mums care.”

People with dementia are faced with higher costs for their care, costing an average 15% more than standard social care. Typically, people with dementia spend £100,000 on their care, yet if you develop cancer or heart disease your care is covered by the NHS. The inequity and injustice of people battling to get quality care, and get it at a fair price, on top of battling the devastating effects of dementia, can’t go on.

Jeremy Hughes, CEO of Alzheimer’s Society, said: “This shocking sum of money spent by people with dementia over the last two years trying to get access to the care and support they desperately need is utterly unacceptable. And the amount and quality of care they’re getting for it – those who can afford it - just isn’t good enough. The results are people with dementia and their families falling victim to this dreadfully broken system. 

“Like the families in our exhibition, hundreds of thousands of people affected by dementia in this country are facing financial punishment, just because they happened to develop dementia and not some other disease. The evidence of the gross inequity continues to pile up, and yet still the Government does nothing.

“We need an immediate cash injection through a dedicated Dementia Fund, while the Government works out a long term solution to finally end this crisis in care. With diagnosis rates of dementia at an all-time high, action can’t come soon enough.”

Alzheimer’s Society is calling for urgent investment in a dedicated £2.4bn Dementia Fund to end the dementia penalty people face when paying for care. The Dementia Fund would sit within the NHS - Alzheimer’s Society recommends that the money for the fund should come from the so far £3.5bn unallocated funding for community care attached to the NHS Long-Term Plan. The Fund would cover the additional social care costs people with dementia are asked to pay because of the complexity of their health condition.

Since the announcement of the social care Green Paper in March 2017, there have been six delays to its release. The document is promised to lay out a long term funding solution for the social care crisis, but there is still no sign of when it is due to be published.

- Ends -

Notes to editors:

• People affected by dementia have spent almost £15bn (14.47) of their own money on social care since March 2017 compared to less than £10bn (9.3) by government

• o   Wittenberg, R., Knapp, M., Hu, B., Comasâ€Herrera, A., King, D., Rehill, A., ... & Kingston, A. (2019). The Costs of Dementia in England. International Journal of Geriatric Psychiatry.

   

• People with dementia have spent more than 1,000,000 unnecessary days in hospital beds because of a delayed transfer of care since March 2017, at a cost to the NHS of over £340 million

• o   Alzheimer’s Society analysis of NHS Digital Data on Delayed Transfers of Care utilising a previous Alzheimer’s Society investigation (Fix Dementia Care: Hospitals, 2016) which showed that 24.4% of people over the age of 65 who experienced delayed transfers of care have dementia. Costings derived from NHS unit cost of excess bed days.

• The number of people over 65 with a diagnosis of dementia in England has gone up by 33,874, taking the total to 470,000 and creating additional demand for the care system every day. 

• o   Derived from NHS Digital published Recorded Dementia Diagnoses demonstrating the number of people over 65 years of age recorded with a diagnosis of dementia was 436,360 in March 2017 and increased to 470,234 in May 2019.

• What the Dementia Fund is and who benefits 
  • •   Alzheimer’s Society is calling for a £2.4bn Dementia Fund in the upcoming Comprehensive Spending Review to end the dementia penalty and bring fairness into the system, while improving quality. 
  • •   The Dementia Fund would level the playing field by covering the additional social care costs people with dementia face because of the complexity of their health condition.
  • •   The Dementia Fund is designed to enable people with dementia to access support from the point of diagnosis onwards and will be an essential part of maintaining the independence of people with dementia in the community.
  • •   The Dementia Fund would benefit the NHS in the long term, meaning fewer people with dementia are forced to go to A&E at crisis point, and better support in place to enable them to leave hospital as soon as they are well enough.
  • •   The Dementia Fund should sit within the NHS and bridge the divide between health and social care by making public funding available for dementia care. The money for the fund needs to come from the so far unallocated funding for community care attached to the NHS long-term plan.
• Alzheimer's Society is the UK's leading dementia charity. We provide information and support, fund research, campaign to improve care and create lasting change for people affected by dementia in England, Wales and Northern Ireland.
• Dementia devastates lives. Alzheimer’s Society research shows that 850,000 people in the UK have a form of dementia. By 2021, one million people will be living with the condition. This will soar to two million by 2051.
• Dementia deaths are rising year on year and 225,000 will develop dementia this year - that’s one every three minutes. 
• Dementia costs the UK economy over £26 billion per year. This is the equivalent of more than £30,000 per person with dementia. 
• Alzheimer’s Society funds research into the cause, care, cure and prevention of all types of dementia and has committed to spend at least £150 million on research over the next decade. This includes a £50 million investment in the UK's first dedicated Dementia Research Institute.