£15bn of dementia patient money spent on social care

New Alzheimer’s Society analysis has revealed that people living with dementia have had to spend almost £15 billion of their own money on social care since government reforms were first promised in March 2017.

The findings builds on several damning findings related to dementia care and lack of funding, and 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.

The near £15 billion figure that people affected by demential have had to spend on social care since March 2017 compares to less than £9.3 billion by the government. The Alzheimer’s Society also finds that, since March 2017, people with dementia have spent more than one million unnecessary days stuck in hospital beds, despite being well enough to go home, at a cost to the NHS of over £340 million.

The total number of people over 65 diagnosed with dementia has increased by 33,000 in England in the last two years alone, significantly adding to all those struggling to get the dementia care they need.

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.

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.”

Ian Hudspeth, chairman of the Local Government Association’s Community Wellbeing Board, said: "Councils are committed to improving the lives and wellbeing of people with dementia and their families, to ensure their care is personalised and fits around the way they want to live their lives. However, with adult social care facing a £3.6 billion funding gap by 2025, councils are having to make incredibly difficult decisions within tightening budgets and cannot be expected to continue relying on one-off funding injections to keep services going. What we need is certainty for both the immediate and long-term.

“That is why the government needs to commit to meeting our deadline, before the party conferences start, to finally publish its much-delayed and long-awaited green paper outlining what the future funding options and possible solutions to this crisis are.

“Local government stands ready to host cross-party talks to kick-start this process and make sure we get the answers and certainty we need, so that people can continue to receive essential care and support. The upcoming Spending Review and much-delayed government green paper needs to provide the long-term sustainable funding solution which adult social care, including those with dementia, urgently needs.”