Fix Dementia Care

People affected by dementia typically spend £100,000 on their own care due to a system that is unfair, unsustainable and in need of an urgent overhaul. Help us make sure that people with dementia are able to access the care they deserve, when they need it.

'Mum wouldn’t survive more than 48 hours without nursing care. Why have we had to spend £160,000 to make sure that doesn’t happen?' – Philip

Philip’s experience of applying for dementia support for his mum, Sylvia, was far from easy. He and his sister found the process to be inefficient and opaque. It has been a process of constant confusion, delays and red tape. 

Since 2012, Philip and his family have spent around £160,000 on Sylvia’s care, including around £12,500 on care for her at home. All of Sylvia’s savings have been used up.

What is the problem with dementia care?

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 on average 15 per cent 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. It's time that people with dementia get the same treatment.

Many families experience stress and anguish fighting for the care they need. Even when care is accessed, there is no guarantee that it will be of good quality.

Demand action on dementia care

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How will we fix dementia care?

Urgent action and long-term investment is needed to Fix Dementia Care. We're calling on the Government to;

  1. End the Dementia Penalty and bring fairness into the system by investing in a new £2.4 billion Dementia Fund
  2. Ensure all health and social care workers are given the training and support they need to deliver high quality dementia care
  3. Provide everyone with dementia with a care navigator so they have access to the right support when they need it

We are campaigning to make sure that the voices of people affected by dementia are heard both inside and outside of parliament.

Your stories and support will fix this broken system once and for all. 

'I was so pleased to be given the opportunity by Alzheimer’s Society to take my experience of the broken support system endured by my mum and myself, directly to the MPs themselves – something I never thought I would be able to do – Sandra

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