What advisers can do to help raise awareness of dementia

In June this year, US pharmaceutical company Eli Lilly announced the top-line results from its phase three trial of donanemab, an immunotherapy treatment designed for people in the early stages of Alzheimer’s disease.

The drug works by removing amyloid plaques from the brain with the aim of slowing the decline in people’s memory and cognitive functioning. The results suggest that the treatment could:

• Slow the rate of clinical progression of Alzheimer’s disease by 36 per cent.
• Reduce the decline of people’s ability to undertake daily activities by 40 per cent.
• Reduce the amount of amyloid in the brain – after 18 months, 72 per cent of people had normal levels of amyloid.

Alongside the announcement of another similar treatment (lecanemab) last year, this means that we could see two disease modifying treatments becoming available to people in the next three years.

It’s been 20 years since a treatment for Alzheimer’s disease has been approved in the UK and currently none of the available treatments slow the progression of the disease.

Critical juncture

We are at a critical point in the research journey for Alzheimer’s disease, where we now know enough about the underlying causes to start seeing real world benefits that could change lives for the better.

So many lives and hopes are pinned on disease modifying treatments becoming available on the NHS. In addition to regulatory approval, any treatment will need an early and accurate diagnosis for it to make a meaningful difference and give people the best quality of life possible.

The pandemic had a devastating effect on diagnosis rates, and systems are still overwhelmed by a backlog of tens of thousands.

Most of [the money raised] has so far come from the general insurance side of the business.

Dr Richard Oakley, associate director of research at Alzheimer’s Society, said: "We need decisions as quickly as possible from the regulators MHRA and NICE.

"But that’s not the end of the story - we can’t end up in a situation where there are new drugs being approved but people can’t get access to them early in their dementia journey when they work best – we need more accurate, earlier dementia diagnosis in the NHS.”

Breakthroughs like donanemab are only possible because of the decades of research that have come before. 

This treatment has been developed from the amyloid hypothesis, first posited by Professor Sir John Hardy in a research project funded by Alzheimer’s Society supporters like Insurance United Against Dementia (IUAD).

IUAD is an Alzheimer’s Society movement created and championed by the insurance industry and so far it’s raised an amazing £8mn, on its way to a target of £10mn.

Most of that has so far come from the general insurance side of the business. The money raised helps fund vital support services that Alzheimer’s Society runs, such as its brilliant Dementia Advisers, alongside crucial, world-class research.

Dementia is a devastating condition that strips away people’s memories and connections to the world. Alzheimer’s Society believes that 209,600 people will develop dementia this year - that’s one person every three minutes.

It’s about changes to our senses, our emotions, our communication.

These new drugs are just the first steps in ending the devastation caused by Alzheimer’s disease and other forms of dementia. Right now, we can only treat the symptoms, not the cause of Alzheimer’s disease.

But these are game-changing treatments, and things are only going to get better – there are currently 147 drugs in clinical trials and more than 100 of them aim to slow the progression of the disease.

Research is vitally important to the dementia landscape - providing more accurate diagnosis, helping to make care as good as it possibly can be, identifying drugs that can help to improve the daily symptoms for those living with dementia and helping identify risk factors which may help with prevention or early detection.

'What I wish people knew about dementia'

There are over 42,000 people under 65 with dementia in the UK (this is commonly known as young-onset dementia). 

Wendy Mitchell, who was diagnosed with young onset dementia at the age of 58, has written a book What I wish people knew about dementia.

In this, she speaks of how there are so many preconceptions to overcome.

To me, the idea that someone with dementia could write a book is one of them, but she has, and the book is warm, positive and inspiring, showing there are many different facets, from one who really knows.

Dementia, she makes clear, is not just about memory. It’s about changes to our senses, our emotions, our communication. It’s about our environment, inside and out.

We don’t have to wait for a miracle drug before making interventions that can improve someone’s life. I’d recommend this uplifting and practical book as a fantastic gateway – it’s almost a travel book.

Wendy herself says it’s for "those who are living with the disease, someone supporting a person with the disease, a professional working in the field, or just a curious individual who believes that empathy and inclusivity is better for all of us."

 It shouldn’t be hard to sign up to the latter.

As Wendy’s book makes clear, dementia is not automatically the end of life, but it can be the start of a very different one.

That said, for many, the disease has a devastating personal impact, but also far-reaching consequences for society as a whole – it currently costs the UK economy more than £34bn every year. 

Why should we care and what can we do?

The Insurance Day for Dementia is a chance for the insurance sector to unite for a day to raise awareness of, and funds for, dementia. 

Almost half of the 300,000 of us working in the UK insurance sector will be affected in our lifetime, either directly or through a loved one. Many advisers will see the effects on their clients and their families.

This year, the Insurance Day for Dementia is on Thursday November 30, and is aimed at raising funds for pioneering research but also, importantly, building awareness of dementia amongst clients and colleagues, in the context of a significant moment for dementia research.

If you think you might be able to be involved at all, there’s more detail on a dedicated microsite, which will be updated as the event evolves, providing key information and fundraising ideas in the coming months.

Or you can talk to me or Rose St Louis, protection director at Scottish Widows – we’re both on the IUAD board and both passionate supporters.

Free money from Zurich!

And, finally, if you needed any other incentive, Zurich Community Trust is matching pound for pound anything raised, up to a total of £100,000.

Peter Hamilton is head of market engagement at Zurich, and the government's Disability and Access Ambassador for the insurance sector.