Every morning, Willy Gilder wakes up with his heart racing. “I’m in a state of fear. I have terrible nightmares,” he says. Gilder, 68, was given a diagnosis of Alzheimer’s disease, the most common form of dementia, last April. His vivid dreams are either a symptom of the disease or a side effect of his medication — doctors are not quite sure which. But even in his waking hours Gilder is afraid — afraid of what is to come.
“I don’t know whether this time next year I will be substantially as I am now or whether I might have lost some important faculty,” the retired radio journalist says.
Not only is there is no cure for dementia; there is nothing that will slow its progression. It is also Britain’s fastest-growing disease. A million Britons have the condition, but that figure will have leapt to 1.6 million by 2050, and there is a growing sense more must be done.
The coronavirus has shown what science can achieve. In a letter published in The Sunday Times today, a group of renowned brain scientists call for ministers to bring the same urgency to curing dementia as they did to finding a Covid-19 vaccine. The signatories — including Professor Sir John Hardy of University College London, who in 1991 discovered the first genetic mutation linked to Alzheimer’s, and Professor Bart De Strooper, director of the UK Dementia Research Institute — are calling for the prime minister to convene “a dementia medicines task force”. It would work in a similar way to the UK Vaccine Taskforce, led by Dame Kate Bingham, which had the freedom to do deals directly with manufacturers, cutting red tape and bypassing Whitehall bureaucracy.
“The UK’s leadership on vaccines for Covid-19 has changed the course of the pandemic and saved thousands of lives, and this same approach could deliver the treatments we need for dementia,” says another signatory, Hilary Evans, chief executive of Alzheimer’s Research UK. The experts argue that trials must be sped up and promising treatments identified, and the task force must ensure that when cures are developed, they are rapidly adopted.
Advertisement
Our attitude towards dementia is a big part of the problem, De Strooper believes. Little will be achieved until the fatalism associated with the disease — the idea that it is just an inevitable part of old age — is swept away. “If we had the same urgency in dementia that we have in other fields — cancer, HIV and now Covid — we would have had success already,” he says.
But anger is replacing this fatalism. Dementia is a condition driven by distinct pathologies: Alzheimer’s, vascular and frontotemporal dementia, and a clutch of others. But if it is a disease, why not prioritise it and give it the same funding as cancer or heart disease? “I meet so many people now who say they won’t accept this,” De Strooper says. “That pressure is going to grow over the coming years.”
Despite the pressure, political interest comes and goes. At the last election Boris Johnson made a manifesto commitment to a “dementia moonshot”, doubling funding for research into the condition to £160 million annually. In fact, the budget has fallen: £83 million in 2018-19 is now £75 million a year for the next five years.
This is not, however, just about funding. The route so far has been a complicated one. Ten years ago this month, David Cameron challenged researchers to find a cure for dementia by 2025. At the time, many believed the target could be hit with time to spare. The pharmaceutical giant Eli Lilly was already in the final stages of trialling its drug solanezumab, which cleared the toxic amyloid plaques thought to be a key cause of Alzheimer’s. Biogen, Roche, AstraZeneca and Pfizer were snapping at its heels.
The race was fierce because the potential rewards were immense. Fifty million people are thought to have dementia globally. The first company to develop an effective treatment will cash in on a blockbuster drug.
Advertisement
But in November 2016 these colossal hopes were dashed. Trial results revealed patients on solanezumab showed the same rate of cognitive decline as those on a placebo. A string of similar high-profile failures followed. In 2018 Pfizer announced it was halting research into dementia. Doubts were cast on the very basis of the amyloid hypothesis.
Four years on, there is once more reason for hope. Dr Richard Oakley, associate director of research at the Alzheimer’s Society, believes the old approaches should not be discounted entirely.
Aducanumab, an amyloid treatment made by Biogen, was provisionally approved last year by the US Food and Drug Administration for treating mild Alzheimer’s, despite trials showing only a marginal improvement. European regulators refused to follow suit. Yet for Oakley the results show it is possible to clear amyloids from the brain with a drug of this type.
He believes a new generation of amyloid drugs — Roche’s gantenerumab, Eli Lilly’s donanemab and Eisai’s lecanemab — will show that it is possible to slow the course of Alzheimer’s. The first results are expected as soon as this autumn.
“That will boost interest and investment,” says Oakley. He pointed to Richard Nixon’s 1971 “war on cancer”. “It didn’t happen overnight. We need a groundswell of interest — people talking about it, wanting to work in it. We will get a cure.”
Advertisement
The amyloid failures also caused new areas of research to open up. The UK Dementia Research Institute, launched in 2017 with £290 million of government and charity funding, is exploring new treatment avenues, including gene therapy, DNA repair, and neuroinflammation and vascular therapies.
The Dementia Discovery Fund (DDF), a London-based venture capital fund launched in 2015 with £15 million of government money, has grown into a £250 million fund backed by Bill Gates and the American Association of Retired Persons. The fund — which was set up by none other than Kate Bingham — was designed to search out promising approaches and make sure they had the investment to be rapidly converted into treatments.
Dr David Reynolds, chief executive of AstronauTx, one of the start-ups funded by the DDF, says: “As we understand more about the science of these brain diseases, we have more different approaches going into trials.” His firm is investigating astrocytes — a type of cell that in a healthy person provides a support system for neurons in the brain, but that with Alzheimer’s attacks brain cells. His team is developing a drug that resets this process.
Around the country, innovators are working at pace. These cures may be too late for Gilder, but he is doing what he can to slow down the disease. “The best thing to do is to be as active as possible,” he says. “Keep active mentally, socially and physically. I want to live my life to the fullest. I want to paint every picture. I want to write the book I never got around to writing. I want to travel. Because I don’t know how long I’ve got.”
