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We need to talk about dementia

Tim Baverstock, Head of Local Systems Influencing | Alzheimer’s Society

8 min read Partner content

Our health and that of those we love are, without question, some of the most precious things in life. 

But when symptoms of dementia begin to show, it can be difficult for the person showing signs of the condition and those around them, to take steps towards getting a diagnosis.

We recently asked a group of supporters what advice they would give to someone worried about getting a diagnosis.

One person told us: “Get your diagnosis as soon as possible. It will make things easier for you and your loved ones. Don’t feel shame or embarrassment and get all the help you can from various agencies to make your life easier.”

For many people though, dementia can be hard to talk about.

New research carried out by Walnut Unlimited* for Alzheimer’s Society and released during Dementia Action Week echoes this sentiment. Walnut Unlimited interviewed 3,476 people who either had dementia or were close to someone who had dementia.

Fear of getting a diagnosis and apprehension about speaking to a professional prevented many people from seeking help. And almost one in five were worried about what friends and family would say if they were diagnosed with dementia.

Attitudes to dementia and diagnosis are not the only barrier. For three in ten people the diagnosis process took longer than six months. This rises to four in ten in Wales. Aside from the worry that a drawn-out process brings, it’s hardly an advert for coming forward in the first place is it?

Benefits of a diagnosis 

But is a diagnosis helpful when there is no cure? Our Local Systems Influencing team does hear the argument from some clinicians that it is not.

But of those people surveyed by Walnut Unlimited only 1% saw no benefit to getting a diagnosis: for seven in ten it meant being able to access the right care and support. It is surely a basic right to know what is causing changes in our lives and what the future may hold.

This is just the start.

There is strong evidence about the value of an early diagnosis. It also means people can make plans for their future care and may be able to access treatments which can help them manage their symptoms. Within our supporter group many people told us an early diagnosis meant they could make financial plans and legal ones too.

One of our supporters told us: “Get a diagnosis as soon as possible – it may not be dementia, but the sooner you know, the sooner you can access help and support (and maybe medication to slow down the process). It also gives you time to plan ahead and ensure you have a will and Power of Attorney in place.” 

Furthermore, an early diagnosis can mean access to a clinical trial. Clinical trials can mean more support and give people the chance to take positive action. Not to mention the huge contribution that clinical trials make to our understanding of dementia, which will help people with dementia in the future.

But let’s take this further.

Can you imagine being told you have cancer but not being told exactly which one? In dementia this is par for the course, with many people not told which terminal brain condition they have. Dementia is an umbrella term for many different diseases of the brain – and therefore dementia can affect different people in a variety of ways depending on which type of dementia they have. Not knowing what is going to happen and how you are going to change can bring additional fear and uncertainty.

As well as an early diagnosis, people need a diagnosis that is accurate. 

Later this year, the first ever drugs which appear to slow down Alzheimer’s disease may become available on the NHS. To get these drugs you need a diagnosis early on and you need a specialist test to confirm that you have Alzheimer’s disease. Currently only around 2% of people in memory clinics in England and Wales get that test.

Despite the clear benefits of an early and accurate diagnosis, new research from Carnall Farrar** commissioned by Alzheimer’s Society reveals that the equivalent of just 1.4% of healthcare spending goes on dementia diagnosis and dementia-specific treatments for managing symptoms. 

The same research shows that in the UK, dementia costs an eye-watering £42bn every year. It is forecast to skyrocket to £90bn by 2040 if we carry on failing to properly prioritise dementia.

We need to stop putting our heads in the sand. How can you effectively arrange and plan people’s health and care needs when you don't know who or how many there are?

We need early and accurate diagnosis. People deserve early and accurate diagnosis.

Revolutionising diagnosis

At the Alzheimer’s Society Annual Conference we heard from two world-class research teams hoping to revolutionise dementia diagnosis.

These teams will work to gather the information needed to show that blood tests for dementia can work in NHS settings.

Vanessa Raymont is an academic old age psychiatrist  at the University of Oxford who has been working in dementia research for 25 years. She leads one of the research teams.

Vanessa said: “Too many people do not get an accurate memory disorder diagnosis, sometimes because of sitting on waiting lists and sometimes because knowing the cause of a memory disorder can be challenging with the current biomarkers we have, such as brain imaging. 

"Getting a precise and timely diagnosis is key, so that people can address risks factors that may cause their memory disorder to progress, as well as for getting access to new treatments. Our Blood Biomarker Project, READ-OUT, will assess the potential benefit of blood biomarkers in a range of memory disorders, and so I hope it will enable appropriate diagnosis to be more accessible for more people across the UK.”

The first step: diagnosis

Less than two-thirds of people living with dementia in England, Wales and Northern Ireland get a diagnosis. Part of the problem is a lack of ambition – the current target for diagnosis in England is 66.7%. NHS England is on track to meet that target this year. When they do, we need to see the setting of new, more ambitious targets so that everyone living with dementia can access an early, accurate diagnosis, including information on type of dementia, if they want it. This week, the Labour Party has pledged to increase that target should they be in government post election, recognising the inequity for those undiagnosed. It’s a hugely positive move and a step towards prioritising dementia in the future. We must hold them to this pledge but also ensure that it is accompanied by a reimagination and investment in Social Care, and a Social Care offer that has the right skills and capacity to support people living with dementia and their carers.

Alongside this, we need investment in the diagnostic pathway, including in workforce and imaging infrastructure. This will reduce delays and increase the number of people who are able to access treatments when available. We must also prepare for a future where blood tests can be used for dementia.

Backed up by evidence

The evidence from our supporters, from Walnut Unlimited and from Carnall Farrar* adds strong weight to what we at Alzheimer’s Society have been saying for a long time.

The sheer scale of the challenge we face with dementia means action is necessary and that anything we can do to reduce the impact of the condition should be prioritised by decision-makers. In that context, investing in early and accurate dementia diagnosis is a clear way forward. Over the next few months we will bring further evidence and solutions that will show that improvements can be made. Crucially those solutions will be difficult to ignore, bringing benefit to people but also leading to a more sustainable health and care system.

Without action, costs will increase, the health and social care system will become further overwhelmed and sadly people affected by dementia will continue shouldering the burden. That is not a world that any of us would want for ourselves or the people we love and it is not a world that we should accept for a moment longer.

#DementiaActionWeek #policychange #dementia

*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 research comes from CF (Carnall Farrar Ltd) who analysed 26,000 health records over seven years combined with modelling to develop an accurate estimate of the cost of dementia.

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