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The Cost and Opportunity of Dementia Cannot be Ignored

James White, Head of National Influencing at Alzheimer’s Society, writes for Chamber on why the cost and opportunity of dementia means it cannot be ignored by the next Government.

James White, Head of National Influencing at Alzheimer’s Society, writes for Chamber on why the cost and opportunity of dementia means it cannot be ignored by the next Government.

James White headshot

James White

Head of National Influencing at Alzheimer’s Society

Dementia is the biggest health and social care challenge facing the UK. The evidence is compelling. 

It is the UK’s biggest killer and new research commissioned by Alzheimer’s Society reveals that it will cost £42bn this year. Dementia pervades every part of the system from primary care through to A&E, and of course, social care.   

The lion’s share of those costs (63%) is falling on people living with the condition and those closest to them. 

Despite this stark reality, tackling dementia is an opportunity for the next government to seize. Meet the challenge of dementia and in doing so create a health and social care system fit for the future whilst supporting people affected by dementia. 

The Economic Cost is Cause for Grave Concern 

It is estimated that almost 1 million people in the UK are living with dementia and this is forecast to balloon to 1.4million by 2040.  

By this time, if dementia continues to be under-prioritised, the cost of dementia will more than double to £90bn. 

This figure comes from research that Alzheimer’s Society commissioned from Carnall Farrar (CF), which has estimated current and future economic and healthcare costs of dementia in the UK.  The research was conducted using the records of 26,000 people dating back seven years and is one of the largest studies conducted on dementia in Europe. 

Ben Richardson, Co-founder and Managing Partner at CF, said: “CF calculates that the total cost of dementia in the UK will grow from £42 billion in 2024 to £90 billion in 2040. This is a seismic shift that will have significant implications for the operating and investment landscape across health and social care.  

“Having covered the UK’s social care market extensively for over 15 years I have grave concerns about our ability to respond to this.” 

Co-founder and Managing Partner at CF, Ben Richardson

The majority of the cost of dementia comes from unpaid care (50%) and social care (40%) with a heavy financial burden resting on unpaid carers – mostly people looking after their loved ones.  

Unpaid carers are struggling with around a third reporting that they spend 100 hours or more each week caring for a loved one and 16% had to give up work to care. 

It’s very worrying and the picture gets worse as time goes on. By 2040, the need for social care and unpaid care is set to increase by 43% as prevalence of dementia grows. 

This is unsustainable. We need to start thinking differently about dementia. 

People Living with Dementia Deserve Better 

Aside from the economic argument, people living with dementia and their carers deserve a better deal. 

A survey of over 3,400 people affected by dementia by Walnut Unlimited commissioned by Alzheimer’s Society showed people living with dementia and those caring for them do not feel supported. Nine in ten respondents (89%) said that people living with dementia need more support than they receive. 

The same survey found that for three in ten people the diagnosis process took longer than six months. This is far behind the guidelines for other conditions. 

At a human level, going without a diagnosis means living with an undiagnosed terminal condition without information, care, or support. 

This is where we start with prioritising dementia – with diagnosis. 

Meeting the Challenge Starts with Diagnosis 

Yet in England and Northern Ireland, only around two-thirds of people living with dementia have a diagnosis. In Wales it’s around half.  

A diagnosis means people have the information to understand their condition and can prepare for big changes in their lives. They can sort out finances and make decisions for their future. 

A diagnosis means they can take part in clinical trials, which are vital to secure the breakthroughs so desperately needed. 

The dementia diagnosis rate target across the UK to get two-thirds of people with dementia a diagnosis is nowhere near ambitious enough. For no other condition would it be acceptable for so many people to be in the dark about their diagnosis.    

The next Government must increase diagnosis rates and be ambitious enough to set new targets, accompanied by funded plans to deliver early, accurate diagnosis at scale. 

A Defining Year for Dementia 

This is a defining year for dementia, which makes it more important than ever before to act on diagnosis.  

This year the first ever drugs which appear to slow down Alzheimer’s disease could become available on the NHS. News of these breakthrough drugs have made headlines across the globe – and no wonder, as it’s a global challenge. Dementia affects approximately 55million people around the world. 

The sad fact is that in the UK we just aren’t ready to get these game-changing treatments to eligible patients. 

People need a diagnosis which is early as these drugs are most effective early on. They also need a diagnosis of Alzheimer’s disease confirmed by a specialist test. 

Only a small number of people get these specialist tests – around 2% of people in England and Wales who attend a memory clinic get one. It’s shocking but not surprising. The equivalent of just 1.4% of dementia healthcare costs are spent on diagnosis and treatments. 

Healthcare system preparedness is key, which requires investment in diagnostic tools and a trained workforce.  Plans must be published by healthcare systems across the UK as to how they plan to get these dementia drugs to those who could benefit. 

Early and accurate diagnosis can shift the dial. 

As the disease progresses, total costs increase significantly, rising from £29,000 per year for mild dementia to £81,000 for severe dementia.   

Early and accurate diagnosis of dementia is the opportunity the next government needs to take – for our economy, for our society and for individuals affected by dementia. 

Social Care Failing People with Dementia 

Whilst new treatments have led to real hope for the future, there will be hundreds of thousands of people who won’t be eligible for them. 

Every day at Alzheimer’s Society, we hear from people affected by dementia who say the social care system is not meeting their needs. 

Around 60% of people who receive care at home in the UK and 70% of residents in residential care in England are living with dementia. 

With 40% of the cost of dementia coming from social care we need a solution. 

We need a social care system set up to provide quality, personalised care delivered by a well-trained and supported workforce.  A long-term social care workforce strategy which requires dementia training for all staff supporting people living with dementia, is essential. 

A Priority for the Next Government 

Ahead of the General Election, Alzheimer’s Society is calling on all candidates to acknowledge the scale and urgency of the challenge – and commit to making dementia a priority. 

For the sake of our economy, our communities, and particularly those people living with this devastating condition, dementia must be prioritised by the next government. 

We are willing to work with you. We speak to people living with dementia every day, we understand the challenge of dementia, and we want to work with you. 

Contact us: change@alzheimers.org.uk 

Ends 

*Walnut Unlimited conducted a 15-minute online survey (10-12 key questions for those living with dementia excluding classification questions) between 6th February 2024 – 1st March 2024, commissioned by Alzheimer’s Society. The sample consisted of 3,476 adults aged 16+ across England, Wales and Northern Ireland and a working group of four people with lived experience of dementia were involved in the development of the questionnaire and research report. 

** The new research on economic impact was undertaken by CF (Carnall Farrar Ltd). Read the report here.

This is just one of the articles that features in Chamber UK’s pre-parliamentary edition of the journal. To access the online version subscribe here!

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