Today’s generation of elderly people could be the last to face the spectre of untreatable Alzheimer’s disease, according to the co-chair of the government’s new dementia mission.
Hilary Evans, the chief executive of Alzheimer’s Research UK, appointed by ministers last month, said the world was “on the cusp of a new dawn” for dementia treatments that meant devastating neurodegenerative illness would no longer be regarded as an inevitable part of old age.
However, she warned that an overhaul of NHS dementia care was required to ensure that patients could access the first effective Alzheimer’s drugs, which could be approved in the UK as soon as next year.
“This could be the last generation that doesn’t have access to drugs,” she said. “For those in their mid- to late 70s and 80s, it might be a bit late, by the time they’re symptomatic, for these drugs to be effective.
“I’m in my 40s [and] my generation really will be the generation that will benefit,” she added. “For people in their 60s, there will, I hope, be quite a shift from where we are now.”
Evans was appointed last month to co-chair the UK government’s national dementia initiative, which aims to draw lessons from the Covid vaccine taskforce to accelerate dementia research and comes with a commitment to double funding for dementia research to £160m a year by 2024–2025.
It follows breakthrough trial results last year, in which lecanemab, developed by Eisai and Biogen, was shown to be the first drug to slow cognitive decline in early-stage Alzheimer’s patients. The mission is co-chaired by Nadeem Sarwar, a senior leader at Eisai.
The lecanemab results have been met with a mixed response, with some experts emphasising that the modest benefits, equivalent to slowing decline by a few months, need to be balanced against its cost and the challenges in delivering it to large numbers of patients. There are also safety concerns; about a fifth of patients in the trial experienced side-effects including brain swelling or bleeding, and three deaths have been linked to the drug.
However, Evans compared the drug to the earliest cancer or HIV treatments, which often had relatively limited efficacy and severe side-effects, but paved the way for medicines that revolutionised outcomes for the next generation of patients.
“If you look at cancer or HIV first-in-kind treatments, I don’t think there’s ever been one that’s been a brilliant drug in itself,” she said. “It’s showing a concept works. Drugs that come in behind [lecanemab] are hopefully going to be better, have fewer side-effects, and that six-month efficacy turns into 12 months, turns into two years and starts to make a real impact,” she said.
“If you’re in your 70s and have another two years of better cognitive health, people will take that,” she added. “That’s a victory in itself.”
For those currently in their 40s, Evans predicts that diagnostic blood tests combined with AI insights from mobile phone data will mean that diagnosis will happen much earlier, and that drugs or vaccines designed to prevent neurodegenerative disease will become increasingly effective.
Evans contrasts this hopeful outlook with a prevailing sense of pessimism a decade ago, following years of false starts and failed trials. “There was no confidence that this was something that we could treat … and certainly ‘cure’ was a word that was slightly frowned upon by the community or challenged by scientists,” she said. “Now there is an understanding and acceptance that this isn’t an inevitable part of old age. It’s caused by a range of neurodegenerative diseases, Alzheimer’s being the most common.
“We’re at the foothills and we can see where we’re going. We’re starting to see what that cure could look like for the patient … and that’s what makes it really exciting.”
The question of NHS delivery lies outside Evans’ remit in her dementia mission role. But, speaking as leader of Alzheimer’s Research UK, she expressed concerns over the ability of the NHS to deliver the treatments that could be approved for clinical use by the UK regulator as soon as next year.
Lecanemab works by clearing toxic plaques in the brain, and early diagnosis is essential for the treatment to be effective. But the UK lags behind many other countries on diagnosis, and there has been a collapse in patient participation in clinical trials. Delivering a drug such as lecanemab beyond large university hospitals is another challenge and raises the prospect of widening health inequalities in old age.
“I think the NHS is probably waking up to the fact that these treatments are potentially going to land and how on earth the system is going to deliver them,” said Evans. “We don’t have the number of PET scanners, we don’t have the ability to deliver these drugs on a monthly intravenous basis. We need an overhaul of the way we treat people with dementia, from diagnosis onwards.”
“The worst thing that could happen is for the science to be delivering, but patients not getting the drugs,” she said. “The fury that would come from organisations like our own, patients and potential patients would be one best avoided. There’s an opportunity to get this right. It’s going to need investment and leadership.”
