The unrecognized impact of Alzheimer’s disease

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Caring for someone with Alzheimer’s disease is not like caring for someone with the flu. You can’t leave them on the couch with a Lemsip while you go to work, and they won’t improve after a week or two.

Our supporter, Baroness Nicky Morgan, knows this all too well. Last week, she bravely shared her family’s experience with dementia in a Daily Telegraph article. 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 disease.

I watched her become solely responsible for all the major decisions in their lives, seemingly overnight. Its independence is over. Her future, and ours as a family, fell into the hands of a disease we knew very little about.

So-called informal caregivers, unpaid relatives who dedicate their lives to caring for people with chronic conditions like Alzheimer’s disease, are often underappreciated heroes. All relationships have their ups and downs, but we were acutely aware that caring for a spouse or parent living with Alzheimer’s disease poses a very unique challenge.

Each year, informal carers in the UK collectively spend 1.1 billion hours caring for their loved ones, and many of them have to give up their careers to do so. And beyond the huge psychological impact of being an informal carer, this informal care costs the UK economy a staggering £10.2 billion a year. That’s more than it cost to host the London 2012 Olympics.

Over the next five years, we expect to see several new drugs become available for Alzheimer’s disease. These drugs are likely to be expensive and will therefore need to be assessed by organizations such as the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to ensure effective use of NHS resources.

But there is a big problem on the horizon. As it stands, when these organizations assess whether a new Alzheimer’s drug is cost-effective for the NHS, they will not consider the impact of the disease on informal carers and the emotional and physics behind it.

We believe they should be and have worked hard to ensure this will not be a barrier to eligible patients accessing these medicines, assuming they are authorized in the UK.

Being a caregiver the physical and economic impact

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

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

Over time, my dad couldn’t express himself like he always had, so my mom had to learn new ways to understand and communicate with him, the man he talked to every day for more 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 to the financial, and things here can be very different from many other leading causes of death. This is because the costs are borne primarily by individuals and families, not the state. This is due to the high prevalence of the disease, almost a million people with dementia in the UK and, most importantly, the lack of treatments available compared to other conditions.

Estimates suggest that 90% of the costs associated with Alzheimer’s disease fall on informal and social care. But the lack of treatments for the disease means that the direct costs to the NHS, which amount to 1.7 billion, are far lower than those of other major illnesses such as cancer or heart disease.

Additionally, due to the demands of caregiving, only 18% of people who care for someone with Alzheimer’s disease have paid work.

Knowing all this, it is clear that any new treatment capable of slowing or stopping Alzheimer’s disease in its tracks would have considerable benefits for society and the economy, beyond its direct benefits for the person living with it. disease.

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

NICE and the SMC decide 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 currently available treatments.

This involves careful review of available data, complex mathematical modeling, and input from clinicians, manufacturers, and other experts. This includes the perspectives of patients and caregivers.

Although NICE has recognized the importance of considering the perspective of carers, its current approach focuses primarily on comparing direct costs and benefits with the NHS, and only considers certain social care costs. . This means that the enormous economic and physical costs of informal care are completely omitted from their assessment process.

There is another problem. Drugs currently available and approved to treat Alzheimer’s disease that only target the symptoms of the disease are relatively inexpensive and only given for a short time.

If new Alzheimer’s treatments like lecanemab and donanemab, which target the disease itself, were to be licensed in the UK, their introduction into the NHS would inevitably lead to increased NHS spending on the disease. of Alzheimer’s. This is because these drugs are more expensive to manufacture and will require investments in more complex diagnostic technologies that are not commonly used in dementia care today. When bodies like NICE compare these new costs to the much lower costs of current NHS treatments, they feared the new drugs would not be seen as good value for money.

There is another reason why newer Alzheimer’s drugs may be at a disadvantage. The long-term progressive nature of Alzheimer’s disease contrasts sharply with the relatively short duration of trials that have tested these new treatments. This means that the data reviewed by NICE will only cover a very short period of time in relation to the disease itself, and therefore does not lend itself to accurately demonstrating whether these treatments are good value for money. long-term. If these drugs show longer-term benefits than those measured in the trials, NICE will not be able to take them into account, which is particularly important in the later, moderate to severe stages of Alzheimer’s disease, which are associated with higher costs.

What change do we want to see?

As our Policy Officer, David Thomas, said on Radio 4s Today Program (listen at 54:17), NICE is a highly respected global organization, trusted by the public, clinicians and other stakeholders and we appreciate the enormity of the task. they have before them.

But we believe that the current NICE approval process is not suited to assess the full benefit of Alzheimer’s drugs for people and society, and we are concerned that this may pose a barrier for eligible patients. having regular access to these medicines if they are found to be safe and effective to use in the UK.

To ensure that informal care and caregiver perspective costs are included in the evaluation of new Alzheimer’s drugs, we call on NICE and SMC to:

Work with charities, people with dementia, their carers, clinicians, the NHS and industry to change their approach to assessing the value of an Alzheimer’s drug. Provide clear guidance on how they will consider caregiver quality of life in the assessment process, including how to measure it, and ensure this is reflected in how manufacturers conduct trials clinics – so that the 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 gather longer-term evidence and better understand how these drugs should be prescribed (i.e. how long should a person receive the drug).

If you would like more information on this topic, read our report on the value and affordability challenges that future treatments for Alzheimer’s disease may face, including valuable recommendations on relevant issues raised here. -above.

Through a concerted effort, we can ensure that promising treatments for Alzheimer’s disease are fully recognized for their impact on patients and caregivers, and that organizations like NICE and the SMC accurately consider all of their benefits for patients. people and society.

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