Families bear the brunt as dementia care costs reach £4.1 billion in London

New research show families shoulder 63% of all dementia care costs

A family group pose for the camera in a garden
Yvonne (far right) and Trevor Salmon (second from left) in happier times

This Dementia Action Week (13-19 May 2024) Alzheimer’s Society hapublished new research revealing the cost of dementia care in London has now reached a staggering £4.1 billion per year. This figure is set to rise to £9.4 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.

Trevor Salomon from Greater London, whose wife Yvonne was diagnosed with early-onset dementia at 57 in 2013, said: “Before my wife Yvonne’s first signs of dementia, she was a bookkeeper at a charity and was known and admired for her ability to turn her hand to just about anything. She was the life and soul of our family, a brilliant cook and attended to our flower beds with incredible and meticulous pride.

“In 2009 everything changed, suddenly she couldn’t remember things and kept repeating herself. This had a confusing and devastating impact, as we didn’t understand what was happening. In 2013 we received the crushing news that she had early-onset dementia – by this time her capabilities had deteriorated so much that we reversed roles and I realised also that I had become her carer.

“I did my best to support her, we attended groups like Singing for the Brain locally, but by 2019 it was clear that I was burning out. Yvonne needed 24/7 care, more than I could sustain. It was an incredibly difficult decision to have her cared for in a care home and not one we made lightly, but we did so as a family. Fortunately, Yvonne is very happy at the home where they provide brilliant 1:1 personalised care, which is not always the case but was a tremendous relief to all who love her.

“I know I am very lucky to have found Yvonne the right care. Many people are still struggling to get a diagnosis, like we did, which causes so many problems, because you do not understand why the person you love is changing. It really is time for people affected by dementia to be prioritised and for it to be much easier for people to get a diagnosis, so they can be supported much sooner. We waited far too long and the lack of clarity takes a lot out of everyone.”

Dementia is the UK’s biggest killer and almost one million people are living with the condition, yet 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.

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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 UK Government to increase access to early and accurate dementia diagnosis to help families avoid reaching costly, avoidable crisis point.

Marion Child, Alzheimer’s Society Head of Local Services for London, said: “One in three people born today will develop dementia. It’s the biggest health and social 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 never receive 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.”

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 or call their Dementia Support Line on 0333 150 3456.

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