Soaring dementia care costs reach £2 billion in Wales – and families bear the brunt

Alzheimer’s Society is calling on the Welsh Government to make dementia a priority and urgently fix diagnosis as across the UK 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 (today, Monday 13 May) revealing the cost of dementia care in Wales has now reached a staggering £2 billion per year. This figure is set to rise to more than £4.5 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 50,000 people are living with the condition in Wales, yet an estimated one in two people with dementia in Wales 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 in the UK. 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 Welsh Government to increase access to early and accurate dementia diagnosis to help families avoid reaching costly, avoidable crisis point.

Laura Courtney, Alzheimer’s Society National Influencing Manager, 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.

“It is estimated that one in two people living with dementia in Wales 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.”

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. If you speak Welsh call the Welsh-speaking support line on 03300 947 400.