Sandra at home surrounded by paperwork

Sandra’s story: ‘In just two months, nearly all of Mum’s savings had been spent on her dementia care’

When Sandra’s mum’s application for NHS Continuing Healthcare was turned down, she had to use her life savings to fund her own care. Read their story, and why we need a Dementia Fund to fix this unfair system.

Sandra got in touch with Alzheimer’s Society in March this year because her mum, Jean, had been turned down for NHS Continuing Healthcare funding.

Jean, who was diagnosed with Alzheimer’s disease in 2016, had been in hospital after a fall. While there it was decided that she needed around-the-clock, specialist care in a nursing home. She was losing weight, becoming very weak and had to be given fluids through an IV.

The system of support for people with dementia is unfair, unsustainable and needs an urgent overhaul. Its stories like Sandra’s that demonstrate the pressing need for action.

Sandra’s story

‘My mum, Jean, went into hospital after a fall at home in January this year.

‘It became clear to me that Mum needed a higher level of care, and she wouldn’t be able to go home. 

‘I applied for NHS Continuing Healthcare funding, but it was denied, even though at that point she had lost her ability to swallow.

‘Mum was discharged to a nursing home, recommended by social services on 5 March. It costs £1,200 a week. Her care is being paid for through her pension and savings.’

Left in limbo

In just two months (March – April 2019) Jean’s life savings are almost gone. At the time of writing, £10,000 has been spent on her care, with her money being spent at an overwhelming pace, and social services due to step in in a matter of days. 

For weeks, Sandra has been trying to find out how much social services will contribute to Jean’s care, once she can no longer afford to pay from her savings. The process has been fraught with difficulty, and Sandra still doesn’t have clarity. She has also been asked by the nursing home to sign a form committing her to paying top-up fees – if she doesn’t, Jean may be forced to leave. 

Left in limbo, Sandra doesn’t know how much she’ll have to pay, where she’ll find the money and whether her mum will be able to stay in the nursing home where she is recently settled. 

‘In just two months nearly all of Mum’s savings have gone. I’ve been asked to sign a form that commits me to paying the top-up fees when the money runs out. I don’t know where I’ll find the money.

‘I really don’t want to move my mum, as the care home is good, and she’s settled there.’

Sandra standing with crossed arms

Sandra's mum is paying for her own care out of her savings, but the money is almost gone

Healthcare lottery

Sandra’s experience is much too common, yet social care reform is at a standstill. The Government’s Green Paper on the issue was recently delayed for the fifth time in just over two years.

For too many families, the situation is desperate. Good care is hard to come by and often eye-wateringly expensive. Over the past two decades, the average cost of a nursing home place has almost doubled and is now nearing £1,000 a week.

People with dementia are at the mercy of a health lottery, forced to spend all their savings on care unlike those with other diseases whose treatment is paid for by the NHS. 

We need urgent action 

Families and carers of people with dementia can’t wait any longer. 

Alzheimer’s Society is putting forward new proposals for a Dementia Fund in this year’s budget. The Fund is designed to shore up the system and give people with dementia greater access to affordable, specialist care. 

The Dementia Fund would provide urgent funding, giving families a financial buffer that means fewer people will spend all their savings on care. People with dementia should be able to access care based on their diagnosis, rather than their finances. 

Why should Jean and Sandra have to struggle without the financial support they need? Help us to make sure people with dementia and their families get the help they need.

Will you support the Dementia Fund?

Stand with us by emailing your MP and demand the Government takes urgent action through a dedicated Dementia Fund.

Email your MP
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53 comments

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My parents worked hard all their lives to make sure they could leave us something . These care homes are greedy and why is it if you pay private it's almost £1000 per but the council only gets charged half of that if they are paying. I call that discrimination and a bloody insult to hard working people.

I find myself in a similar position - I am paying £16000.00 a month for my husband for 24hour 1;1 care . He has dementia with Lewy body and is deteriorating rapidly. This has gone on for 6 months and I have had to be persistent to get to the second assessment stage. The whole process is shrouded in mystery and I am at a loss as to what will happen when the money runs out. I feel that we have been very misled during our lifetime - we always thought that the NHS would be there for us . Peter happily paid his high rate taxes all of his working life in the expectation that himself and others would be supported at end of life times. This cruel illness and lack of support have robbed him of his dignity at the end of his life - shame on the government.

I can't understand why this issue hasn't been referred to the court of human rights, frankly. It is a clear case of discrimination; if you have cancer or MS, for example, you are cared for by the NHS for free and maybe and hospice care is also free. If you are unlucky enough to have dementia - a terminal illness - you are abandoned by the NHS. It's disgraceful.

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