Fix Dementia Care

The system of support for people living with dementia is unfair, unsustainable and needs an urgent overhaul. Help us make sure that people with dementia are able to access the care they deserve, when they need it.

How is dementia care broken?

Over the past two decades, the average cost of a nursing home place has almost doubled and is now nearing £1,000 a week. The typical cost of dementia care is £100,000.

At Alzheimer’s Society, we regularly hear from people who have spent all of their life savings on care. Due to the complexity of the condition, the cost of dementia care is up to15% more expensive than other types of social care – we call this the ‘Dementia Penalty’.

The NHS is committed to the principle of access based on clinical need, not an individual’s ability to pay, and it’s time that people with dementia are treated the same.

That’s why we are calling for a £2.4 billion Dementia Fund in the 2019 budget to end the Dementia Penalty, bringing fairness into the system and improving quality of care.

Demand action on dementia care

Show your support for the dementia fund by signing your name to our letter to the next PM.

Sign now

Sandra’s story

‘My mum, Jean, was diagnosed with Alzheimer’s in 2016. In January 2019, Mum went into hospital after a fall at home. 

‘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.

Sandra at home surrounded by paperwork

‘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.

‘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.’

What we’re calling for

  1. Improve dementia care by investing in a new £2.4 billion Dementia Fund in the 2019 budget.
  2. Publish the Green Paper on Social Care with proposals for long term funding reform that shares the cost of dementia care more fairly across society.
  3. Address the Dementia Penalty to ensure that the costs associated with a health condition like dementia are covered by the NHS. 

Will your MP support the Dementia Fund?

Thanks to our campaigners, 5,000 people emailed their MP asking them to support the Dementia Fund, which is a great result! MPs now have the fund firmly on their radar, and 97 MPs, from a range of parties, have already shown their support.

We want to build on this success, and we are now planning a photo exhibition in parliament that reveals the crisis going on behind closed doors. We have been photographing people affected by dementia who are battling with a social care system that simply isn’t fit for purpose. 

At the exhibition, entitled ‘Dementia Care: The Crisis Behind Closed Doors’, MPs will also have the opportunity to meet some of the people in the photographs, such as Sandra. We want as many MPs as possible to hear about their experiences with social care.

Alzheimer’s Society commissioned the Social Market Foundation (SMF) to produce an independent report examining how a Dementia Fund could work. For more information you can read the report here.

Support the dementia fund

Help make the Dementia Fund a reality by signing a public letter to the future Prime Minister.

Sign now
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