More people with Alzheimer’s are needed to join groundbreaking drug trials similar to the one that the TV presenter Fiona Phillips is taking part in, a professor close to the research has urged.
People with dementia who take part in clinical trials tend to have better outcomes regardless of whether the medication they are administered works, according to a professor in University College London’s dementia research centre, which is running the miridesap trial that Phillips is participating in.
“We are certainly firm believers that the way forward is to take part in research,” said Prof Jonathan Schott, a neurologist at UCL and Alzheimer’s Research UK’s chief medical officer.
“We need to diversify our approaches, we need more participants, more public awareness, earlier and better diagnosis, much more investment in research and new therapies if we’re going to catch up with cancer.”
As well as potentially gaining access to “extremely exciting studies from new treatments that have shown clinical benefits”, trial participants benefited from being in contact with experts in the field and helping to drive forward understanding of dementia, Schott said.
Schott noted that many drug trials failed, but added that there was a definite glimmer of hope of understanding Alzheimer’s, which was likely to revolutionise treatment in the coming years and decades.
Phillips, 62, who co-hosted the ITV programme GMTV for a decade from the late 1990s, revealed on Tuesday that she was diagnosed with Alzheimer’s disease after experiencing brain fog and anxiety. This is considered early onset as she is under 65.
An estimated 70,800 people in the UK have early onset Alzheimer’s, which can be difficult to diagnose as many associate the disease with older age, and the symptoms can be slightly different, for example behaviour or language-related rather than memory loss. It is often confused with more common midlife problems, such as the menopause or stress.
Phillips disclosed that she was undergoing trials for a new drug that scientists hope could slow or reverse the illness by removing a protein called SAP (serum amyloid P component) from the brain, which binds amyloid plaques. This means that amyloid plaques may break down faster and delay the progression of Alzheimer’s.
So far, 43 participants have taken part in the trial of the drug, which is in its third year of assessment and scientists are still researching side-effects and safety issues. Phillips does not know whether she is receiving the placebo or miridesap, but said she thought her condition could be stabilising.
Schott said miridesap was a “relatively early-stage and very novel treatment” and worked in a different way from other promising drugs such as lecanemab, but that it was important for researchers to develop bespoke treatments for patients, similar to cancer therapies.
He added that this would require far more funding for dementia research. It lags far behind cancer research, which receives about three times as much from the government. Last year, the former prime minister Boris Johnson announced a “dementia mission”, which included a promise to double funding. However, researchers say that no progress has been made since.
Osman Shabir, a researcher at the University of Sheffield, said early onset Alzheimer’s was usually diagnosed in people in their 40s and 50s, but in some rare cases could develop in people in their 20s and 30s. The youngest recorded case was of a 19-year-old boy in China.
Some of these cases were associated with faulty genes and genetic risk, though lifestyle factors including obesity and poor diet could contribute, he said.
He added that as stigma was reducing, people were becoming more aware of the symptoms and seeking diagnosis earlier. “If you get it early there is a better chance of stabilisation for at least a few more years and reducing the severity and progression of the disease,” he said.
But Sian Gregory, of the Alzheimer’s Society, said the NHS still lacked sufficient diagnostic tools, such as Pet scans and blood marker and spinal fluid testing, to provide timely, specific and accurate diagnoses. That could pose problems in the future. “That’s what you will need to access treatments which can slow down Alzheimer’s, if they become available in the UK.”
