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Soaring dementia care costs reach £42 billion in UK – and families bear the brunt

Paul and Sandy Kemp

Alzheimer’s Society

5 min read Partner content

Alzheimer’s Society is calling on the Government to make dementia a priority and urgently fix diagnosis as just 1.4% of dementia healthcare costs are spent on diagnosis and treatment, with families shouldering 63% of the costs

This Dementia Action Week (13-19 May 2024) Alzheimer’s Society has published new research revealing the cost of dementia in the UK has now reached a staggering £42 billion per year. This figure is set to rise to £90 billion by 2040 unless urgent action is taken.

The charity commissioned one of the largest UK studies on the economic impact of dementia. The research was undertaken by CF (Carnall Farrar Ltd) using the records of 26,000 people, dating back seven years. It revealed that people living with dementia and their families are shouldering 63% of all dementia costs and that as the disease progresses, total costs increase significantly, rising from £29,000 per year for mild dementia to £81,000 for severe dementia. 

Dementia is the UK’s biggest killer and almost one million people are living with the condition, yet it is estimated that a third of people affected have not received a diagnosis. Despite the evidence of benefits of an early and accurate dementia diagnosis, spending on diagnosis makes up less than 1.4% of the total health care expenditure. The majority of costs come from social care (40%) and unpaid care (50%). The charity says the lack of an early diagnosis means that families are left to pick up the pieces and results in catastrophic costs further down the line.

The charity reports that an ageing population means the number of the UK population with dementia will increase by 43% by 2040, with the biggest increases (51%) in Northern Ireland and London (53%) and that urgent action is needed.

The study revealed that, in line with increasing numbers of people living with dementia, the need for unpaid care often provided by loved ones or friends will grow significantly by 2040 with 43% more people expected to require unpaid care. This is a major concern when already a third of unpaid carers spend more than 100 hours caring per week, and 16% had to give up work to care.

Further research by Walnut Unlimited also found that only 1% of people affected by dementia didn’t see the benefit of a diagnosis. The charity says a timely and accurate diagnosis gives people with dementia access to the vital care, support and treatment they need. However, lack of awareness, fragmented health and social care systems and workforce issues remain barriers to diagnosis.

Alzheimer’s Society is calling on the Government to increase access to early and accurate dementia diagnosis to help families avoid reaching costly, avoidable crisis point.

Kate Lee, Alzheimer’s Society CEO, said: “One in three people born today will develop dementia. It’s the biggest health and care issue of our time, yet it isn’t the priority it should be amongst decision-makers. We wouldn’t accept this for any other terminal disease, we shouldn’t accept this for dementia.

“One in three people with dementia do not have a diagnosis. They are facing dementia alone without access the vital care, support, and treatments. If we don’t address diagnosis, we have no hope of addressing the major dementia challenges we face and reducing the cost to the health service and wider economy.

“Dementia’s devastating impact is colossal – on the lives of those it affects, on the healthcare system and on the economy. Now is the time to prioritise dementia, and that starts with getting more people diagnosed.”

Paul Kemp (57), from Kent, whose wife, Sandy (55), lives with early-onset dementia, said: “Sandy was so kind and gentle. Her smile lit up the room wherever she went but dementia has stripped that away. She can barely talk and can’t comprehend the world around her anymore. She’s increasingly aggressive and agitated and is regressing quickly - I feel so helpless and isolated.  

“Sandy’s diagnosis journey was not easy either. We first spotted dementia symptoms in 2018 and at first the doctors thought it was depression but we knew this wasn’t right and challenged their assumptions. It wasn’t until July 2020 that a formal diagnosis of Alzheimer’s was given. Two years felt like an agonising lifetime to wait when we knew something wasn’t right. If an early and accurate diagnosis was given, we could have accessed the right support, but we’ve been robbed of that precious time. 

“I’ve had to give up work to become a full-time carer for Sandy and my mother, and sell personal items to pay for care and buy essentials. I feel that no-one in government understands the financial pressures carers face, especially when trying to claim for benefits is like screaming into the wind – no one’s listening. 

“If it wasn’t for Alzheimer’s Society, I’m not sure where I’d be. Their support, advice and resources have helped guide me, they’ve listened when no-one else would and made even the darkest days seem brighter, and for that I will be forever grateful”.  

Vicky McClure MBE, actor and Alzheimer's Society Ambassador, said: “More needs to be done now to support people in getting a dementia diagnosis. Dementia can absolutely devastate families in so many ways but receiving an early diagnosis can be a lifeline for people to access the vital treatment and care they desperately need.

“People showing signs of dementia, those now living with the condition and the people that love and care for them are being forgotten - it has become the UK's forgotten crisis despite dementia being the UK's biggest killer.

“I've seen first-hand the challenges families face before and after a diagnosis and having supported Alzheimer's Society to push for change for many years, it breaks my heart that we're stuck in the same place with hundreds of thousands of people still undiagnosed.”

If you’re worried about yourself, or someone close to you, then check your symptoms today using Alzheimer’s Society’s symptom checklist. Visit alzheimers.org.uk or call their Dementia Support Line on 0333 150 3456.

To learn more about the findings in this article, please email public.affairs@alzheimers.org.uk.

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