Donanemab: Alzheimer’s drug patients celebrate their independence day
“I’ve got my independence back.” That is the impact a new Alzheimer’s drug has had on Lori Weiss, 65, who has regained the ability to drive and her love of reading since taking part in a landmark trial.
The drug, donanemab, has been hailed as a potential turning point in the fight against Alzheimer’s disease, which accounts for between 60 and 70 per cent of all dementia cases worldwide.
Trial results showed the drug slowed mental decline by up to 60 per cent and by an average of 35 per cent, giving some people an extra year without their disease progressing. The drug targets Alzheimer’s, which is caused by a build-up of amyloid plaques in the brain, rather than other forms of dementia such as frontotemporal, vascular or Lewy body.
Donanemab’s manufacturer, the US pharmaceutical giant Eli Lilly and Company, published the final results of the trial at an Alzheimer’s conference on Monday.
Like her mother and grandfather, and like several aunts and uncles and one cousin, Weiss, from Portland, Oregon, has had Alzheimer’s diagnosed, leaving her certain it runs in the family.
She worked in engineering before becoming a high-school maths, business and engineering teacher. She noticed in 2019 that she was struggling to remember how to use spreadsheets and was finding it difficult to answer her pupils’ questions and mark their work. This led to a diagnosis of mild cognitive impairment in 2020 at the age of 62. About two years later a scan revealed a build-up of amyloid in her brain, leading to a diagnosis of Alzheimer’s.
“The biggest impact for me was not being able to work,” she said. “My husband is quite a few years younger and I had no intention of retiring before him. All of a sudden not being able to work was very depressing.”
Jacky Keeffe, with her carer Ifan Meredith, also took part in the trial
Jacky Keeffe, with her carer Ifan Meredith, also took part in the trial
NOT KNOWN
A friend saw Weiss’s neurologist on local television talking about a new drug and Weiss signed up for a safety trial. Unlike participants in other trials, who are not told whether they are on the drug or a placebo, Weiss knows she was on donanemab from January last year until recently.
“The big impact was getting my sense of direction back,” she said. “Before I took the drug, I’d get to an intersection and wouldn’t recognise where I was and I had to stop driving. Now I can drive anywhere and can pick up my friends and take them to Alzheimer’s painting class and we have a blast and I can get them home safely. I’ve got my independence back.
“My memory is much better also. I just notice it in everyday life and my husband probably notices it even more. And I can read again.
“Before I couldn’t read and remember what I was reading. It’s also being able to make plans and do things with friends and take care of my dog.”
Weiss said her younger sister-in-law had “full-blown Alzheimer’s and is in a care facility” and added: “When I go to visit, I think, ‘That could be me, wandering the halls of a care facility, but I’m not.’ ”
She said it was reassuring for her sons, aged 28 and 30, who have watched so many older family members succumb to the disease, to know there could be “exciting” treatments available in future.
Jacky Keeffe, 85, who lives in north London, is a Bafta award-winning film and TV producer who worked on series including Pie in the Sky and was married to the screenwriter Barrie Keeffe. She had Alzheimer’s diagnosed in 2020.
“I couldn’t remember simple things,” she said. “It felt like absent-mindedness on day-to-day things. I’d say, ‘Oh it’s my age, don’t worry.’ I was cross with myself, more than anything.”
Her friend and carer, Ifan Meredith, 48, said other people noticed she would offer guests a cup of tea several times, forgetting she had already asked.
As some trial participants were switched between the drug and a placebo, Keeffe does not know how long she has spent on donanemab during the trial at a Re:Cognition Health clinic: it could be 21 months or three months.
“The results [from] the trial are very exciting and encouraging,” she said. “It’s difficult to understand [the effect of the drug] as I don’t know how much I have lost. I was intrigued [to take part], as I thought it would be quite nice to be able to remember things.”
She said it “would be wonderful” if the drug enabled her to retain more memories of her two university-age grandchildren, and said: “It’s great to be able to participate and to help other people really, as it is a terrible disease.” Meredith said he felt the treatment had “helped Jacky to plateau” in the progression of her disease.