“Balancing hope with reality” – what the Alzheimer’s breakthrough really means

This week has seen headlines heralding a major turning point in the treatment and progression of Alzheimer’s dominating the news agenda, bringing a sliver of hope to millions of families across the UK who are affected by this cruel disease. 

The breakthrough involves a new drug called donanemab, which has been shown in clinical trials to slow mental decline caused by Alzheimer’s by 36%.

News of this new drug, and a similar new drug, lecanemab, which has just been licensed in the US, is arguably the first time in years that real progress has been made in the fight against Alzheimer’s, with countless other drugs promising so much but never delivering tangible results. 

“Alzheimer’s is relentless, so to have some hope means a lot,” says Paul Lindsay, 49, of the clinical findings from the donanemab trials. Paul is from Nottingham and has been helping to care for his dad, Richard, who has Alzheimer’s, for the past six years.  

“It’s too late for Dad and too late for us as a family, but we were just so delighted by this news – it’s incredible,” says Paul. “The goal is to finish dementia for good, and for this to be the last generation that gets it.” 

It’s a common theme among those affected by dementia whom we spoke to for reaction to the findings. Denis Brewer, 73, has suffered two strokes and was diagnosed with mixed dementia two years ago. He and his partner Stephen, 64, moved to Norfolk for a country life after they retired, but Denis’s health has since gone downhill. 

Stephen says: “We’re at the beginning of our journey with dementia. When I read about the new drug, I could see it wouldn’t mean anything for Denis, but it could change everything for people who haven’t yet been diagnosed. And that would be wonderful.” 

While the “watershed” donanemab breakthrough may not necessarily come in time to make a difference for people already living with the disease, it’s a welcome spur that proves the need for ongoing research – something that takes time, money and volunteers.  

This is something that former diplomat Patrick Davies appreciates. In 2018, Patrick swapped his high-flying career at the British Embassy in Washington for life back in the UK, where he now helps care for his dad, who has Alzheimer’s. He has since raised almost £40,000 for Alzheimer’s Research UK by walking the length of the UK and crossing the Pyrenees, and is thrilled to see scientific research finally coming to fruition.  

“Alzheimer’s has always struggled to get the coverage and funding that other conditions get,” says Patrick. “It’s partly because many people assume, wrongly, that it’s just something you get when you’re old – that it’s part of ageing.  

“But it’s a disease. It’s not an inevitable part of getting old and this breakthrough gets it back into people’s consciousness – and most importantly gives a bit of hope, which is something we haven’t had with Alzheimer’s for so long. 

“Even after a diagnosis, all the medical profession can do is mitigate some of the symptoms and support you. But now they’re saying: ‘Hold on, this might be treatable and, ultimately, may be curable.’ That really is a good thing.” 

Patrick believes that this shift in public perception could be game-changing, and stop people from assuming an Alzheimer’s diagnosis means entering an irreversible downward spiral. 

“At the moment, people’s mindset changes at diagnosis as they know there is no cure. There is that feeling of: ‘You might as well sit in front of the telly now.’ But these new drugs will change that. You’ve got to stay upbeat and you’ve got to try to make the life of somebody with Alzheimer’s as fulfilling as it can be, and keep challenging and stretching them.” 

Tim Beanland, Head of Knowledge at Alzheimer’s Society, says: “It’s the first time in 20 years that we’ve had a new drug like [donanemab] and we’re talking about it in terms of this being the beginning of the end of Alzheimer’s. It shows, in principle, that we can slow down the disease in a way that we’ve not been able to before.” 

Many have become used to treading a fine line between hope and reality that a “miracle cure” for Alzheimer’s can be found – something that all families come to learn, according to Beanland. 

“When news breaks, we get a lot of calls [at Alzheimer’s Society] from people, very excited, asking: ‘When is this going to be available?’ And we have to always temper that excitement,” says Beanland. 

He adds that the very earliest this drug could reach the NHS would be 2025, following sign-off from both the MHRA (Medicines and Healthcare products Regulatory Agency) and NICE (National Institute for Health and Care Excellence).  

“In addition, this drug would only be for people in the early stages of Alzheimer’s and to get it, you’d need to have a PET scan of the brain. There are very few of these scanners across the country (only around 60-70) and the drug is administered via a drip in the arm – so a lot needs to happen in terms of getting the NHS ready.” 

If you are living with dementia, or are a carer for someone with the condition, Beanland highlights that you can still make a difference by getting actively involved in research. 

You can do so by registering with Join Dementia Research, or contacting the Alzheimer’s Society Dementia support line on 0333 150 3456.  

“The drugs we’re getting excited about now are based on research that people took part in over the past few years,” he says. “Not only does it bring a sense of putting something in for the future, but patients also find it stimulating and are really well looked after by the researchers, on top of the normal care they receive.” 

Saga Exceptional’s Phillipa Cherryson has first-hand knowledge of the situation, as her mum, Margaret, was diagnosed with Alzheimer’s earlier this year. She has since been invited to take part in a drug trial.  

“That letter [inviting her for a trial] has given her hope,” says Phillipa. “She’s excited by it, but realistic, too.  

“It’s a bit of a lottery, it might not change anything or even adversely affect your health, but you might also strike the jackpot, as happened with many people in the donanemab trials – it’s given them their lives back. 

“Taking part in the test means she could regain some control of her own destiny and it might, just might, buy her more time to carry on being her, carry on being the amazing woman she has always been and the mum I love so much.”  

This sense of hope extends to Phillipa and the role dementia might play in her own future. “These new drugs allow relatives to acknowledge the elephant in the room: that we might one day get Alzheimer’s,” she says.  

“Now, even if we do, these drugs and the ones that follow them, might allow us to live with the disease and continue leading fulfilling and independent lives.” 

For those who won’t see the benefits of this new drug, Beanland says there is much you can do to continue leading a happy life with dementia.  

“Yes, there are going to be tough times. But with the right support, it’s very possible,” he says. 

“I would encourage people to contact our support line, find out what help is available to them locally, and get advice on staying active. Dementia affects everything – from driving to finance and relationships and memory – but there is information and support for people. Perhaps that’s a dementia advisor who can come out and advise you on benefits you’re entitled to, or a ‘Singing for the Brain’ group in your community. 

“We say to people: if you stay active physically, mentally and socially, you’ve got a much better chance of coping with dementia day-to-day.” 

That’s certainly what Denis Brewer is trying to do, even though he’s no longer able to drive and finds getting around increasingly difficult. He says: “I still manage to swim three times a week, and I go to a local group on Fridays where we play board games, chat and have a laugh together. It really means a lot to me – it’s the day I look forward to the most.”