The overlooked impact of Alzheimer’s disease

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By Alena Gureva | Monday 12 June 2023

Caring for someone with Alzheimer’s disease isn’t like looking after someone with the flu. You can’t leave them on the sofa with a Lemsip while you go to work, and they won’t get better after a week or two.  

Our supporter, Baroness Nicky Morgan, knows this all too well. Last week, she bravely shared her family’s experience of dementia in an article in the Daily Telegraph. In particular,  she described the impact it had on her mother, who was forced to take on a “new identity” as a carer when her husband Peter (Nicky’s father) was diagnosed with Alzheimer’s.  

“I watched her become solely responsible for all their major life decisions, seemingly overnight. Gone was her independence. Her future, and ours as a family, plunged into the hands of a disease that we knew very little about.”

So-called ‘informal’ carers – unpaid loved ones who devote their lives to looking after people with chronic conditions like Alzheimer’s – are often-underappreciated heroes. All relationships have their ups and downs, but we’re acutely aware that caring for a spouse or parent living with Alzheimer’s poses a very unique challenge.  

Each year, the UK’s informal carers collectively spend 1.1bn hours looking after their loved ones, with many required to leave behind their career to do so. And beyond the enormous psychological impact of being an informal carer, this informal care costs the UK economy a staggering £10.2bn a year. That’s more than it cost to put on the 2012 London Olympic Games 

 

Man and woman sit on sofa, both gazing beyond the camera.

 

Over the next five years, we expect to see several new drugs become available for Alzheimer’s disease. These drugs will likely be costly, so will need to be assessed by organisations like The National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to ensure they’re an effective use of NHS resources.  

But there’s a big problem on the horizon. As things stand, when these organisations weigh up whether a new Alzheimer’s drug is cost effective for the NHS, they won’t be considering the disease’s impact on informal carers – and the emotional and physical impact that underpin it.  

We think they should be, and we’re working hard to ensure this won’t be a barrier to eligible patients having access to these drugs, assuming they’re licensed in the UK.  

Being a caregiver – the physical and economic impact

Diseases like Alzheimer’s are progressive, and gradually erode a person’s cognitive and physical abilities over a prolonged period – sometimes more than a decade. This includes changes in a person’s behaviour, such as increased aggression and anxiety.  

These changes can be difficult for caregivers to manage, and at times many people will feel frustrated and helpless. It can also be a struggle to communicate with a loved one, who may be confused or unable to understand what is happening. Reflecting on this, Baroness Morgan explained:

Over time, my father could no longer express himself in the way he always had, so my mother had to learn new ways to understand and communicate with him – the man she’d spoken to every day for over half a century.”

This can cause feelings of guilt and frustration, as caregivers feel they are not doing enough.  

But the impact of Alzheimer’s extends beyond the emotional into the financial, and here things can be very different from many other leading causes of death. That’s because costs are primarily picked up by individuals and families, not the state. This is driven by the high prevalence of the disease – nearly one million people are living with dementia in the UK – and, crucially, the lack of treatments available compared to other disease areas. 

Estimates suggest that 90% of the costs associated with Alzheimer’s fall on informal and social care. But the lack of treatments for the disease means that direct costs to the NHS, which stand at £1.7bn, are much lower than other leading conditions like cancer or heart disease.  

Also, because of the demands of caregiving, just 18% of people caring for someone with Alzheimer’s are in paid work.  

Knowing all of this, it’s clear that any new treatment that can slow or stop Alzheimer’s in its tracks would have far-ranging benefits for society and the economy, beyond its direct benefits to the person living with the disease. 

How do NICE and the SMC assess a drug’s cost-effectiveness, and are Alzheimer’s drugs at a disadvantage?

NICE and the SMC make decisions about which treatments are routinely available on the NHS, and they do this through a process called Health Technology Assessment (HTA), which compares the overall impact of a new treatment to the impact of the treatments currently available.  

Doing this involves careful scrutiny of available data, complex mathematical modelling, and also input from clinicians, manufacturers, and other experts. This includes perspectives from patients and caregivers.  

While NICE has acknowledged the importance of considering the caregiver perspective, its current approach mainly focuses on comparing direct costs and benefits to NHS, and only considers some social care costs. This means the enormous economic and physical costs of informal care are completely omitted from their assessment process.  

There’s a further problem. The drugs currently available and approved to treat Alzheimer’s – which only target the condition’s symptoms – are relatively inexpensive, and only given for a short period.  

Should new Alzheimer’s treatments like lecanemab and donanemab – which target the disease itself – be granted a licence in the UK, bringing them into the NHS will inevitably cause an increase in what NHS spend on Alzheimer’s disease. This is because these drugs are more expensive to manufacture and will require investment in more complex diagnostic technologies that aren’t routinely used in dementia care right now. When bodies like NICE compare these new costs to the much smaller NHS costs of current treatments, we’re worried the new drugs will not be deemed good value for money.  

There’s another reason why new Alzheimer’s drugs may be at a disadvantage. Alzheimer’s long-term, progressive nature stands in stark contrast to the relatively short duration of the trials that tested these new treatments. This means that the data which NICE reviews will only cover a very short time period relative to the disease itself, so does not lend itself to accurately demonstrating whether these treatments are good value for money in the long term. Should these drugs show even longer-term benefit than measured in the trials, NICE won’t be able to take this into account – and this is particularly important in the later, moderate to severe stages of Alzheimer’s which are associated with greater costs.  

What change do we want to see?

As our Head of Policy, David Thomas, said on Radio 4’s Today Programme (listen at 54:17), “NICE is a very well-respected global organisation”, trusted by the public, clinicians and other stakeholders and we appreciate the enormity of the task they have before them.  

But we do believe the current NICE approval process is not fit to assess the full benefit of Alzheimer’s drugs to people and society, and we’re concerned this will be a barrier to eligible patients having routine access to these drugs should they be deemed safe and effective for use in the UK. 

To make sure the costs of informal care and caregiver perspective are included in assessing new Alzheimer’s drugs, we’re calling for NICE and SMC to: 

  • Work with charities, people affected by dementia, their carers, clinicians, the NHS and industry to amend their approach to assessing the value of an Alzheimer’s drug. 
  • Provide clear guidance on how they will consider caregivers’ quality of life in the assessment process, including how to measure it, and ensure this is reflected in the way manufacturers run clinical trials – so appropriate data is collected.  
  • Be more flexible about how they review Alzheimer’s drugs, given the uncertainty of their long-term benefits, and work with the NHS to collect evidence in the longer term and build a better understanding of how these drugs should be prescribed (i.e. how long should a person receive the drug).  

If you’d like further information on this topic, read our report on the challenges of value and affordability that future treatments for Alzheimer’s disease may face, including valuable recommendations on the pertinent issues raised above.  

With a concerted effort, we can ensure that promising Alzheimer’s treatments are thoroughly recognised for their impact on both patients and caregivers, and that organisations like NICE and the SMC accurately consider their full benefits to people and society.  

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About the author

Alena Gureva

Policy Advisor