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Alzheimer's: A Turning Point?
episode • Dateline • Current Affairs • 28m
episode • Dateline • Current Affairs • 28m
Retired furniture maker David started developing Alzheimer's disease around eight years ago.
"I was working away, and all of a sudden, I suddenly couldn't remember what I was supposed to do next," he said.
"I thought, 'This is really weird', and I just forgot."
David is one of around 600,000 people in the United Kingdom with Alzheimer's, the most common form of dementia.
The 78-year-old has taken part in a clinical trial of a new Alzheimer's drug called Lecanemab, designed to reduce his mild symptoms.
His wife Cheryl said the study gave them a sense of purpose.
"It's given us hope to be doing something as opposed to nothing, which was the traditional way with Alzheimer's. Your GP would say, 'I'm afraid there's nothing we can do,'" she said.
"We felt that we were doing something."
Dr Emer MacSweeney runs the private company that led the UK arm of the Lecanemab trial, along with a second Alzheimer's drug called Donanemab.
She said its work could be life-changing for sufferers of the devastating disease.
Dr Emer MacSweeney is the medical director at Re:Cognition Health, which ran UK trials for two new Alzheimer's drugs. Source: BBC / Panorama
Lecanemab and Donanemab are also being trialled in Australia.
The 18-month-long trials in the UK showed the drugs slowed cognitive decline by around one-quarter to one-third.
Dr Cath Mummery from the Dementia Research Centre at University College London said it's a small but important outcome for participants.
"If you want to try and make that meaningful in terms of what a patient understands in clinic, then I would tell them that that gives you, over that 18-month period, about five months at a higher level of function," she said.
David took part in one of MacSweeney's trials, during which he received regular infusions of Alzheimer's drugs.
He has now been taking Lecanemab for three and a half years. And his wife said she has seen improvements in his behaviour.
"They're not saying this is a complete cure. Just giving individuals more time before they can't remember, you know, who their children are," she said.
"It's given me longer with David as my husband."
Clinicians are unsure of how long patients may need to take these new treatments, or how long-lasting any benefits may be.
David has taken part in a clinical trial of a new Alzheimer's drug run by MacSweeney's private company. Source: BBC / Panorama
How do the new drugs work?
Alzheimer's is a progressive and degenerative disease caused by the abnormal build-up of proteins in the brain.
One of these proteins is called amyloid, which forms clumps or plaques around neurons, the cells that transmit information and instructions throughout the body.
The damage builds over time, so it can be 20 years before symptoms like memory loss or confusion emerge.
Lecanemab and Donanemab are antibodies like those made by our body to attack viruses or bacteria and have been engineered to bind to amyloid and help immune cells clear it away.
But there can be fatal consequences, as the drugs can cause swelling or bleeding in the brain.
MacSweeney said this is a side effect called ARIA, which stands for amyloid-related imaging abnormalities.
"[A] ballpark 35 per cent of people taking this class of medication will develop ARIA, but only about 3.5 per cent of people will actually experience any symptoms," she said.
"A small group of people, about 0.6 per cent, can actually develop more serious side effects."
These complications caused three deaths among 853 people who were given Donanemab in the global trial.
Despite the potential for side effects, the two drugs completed the clinical trial phase and are now being considered for licensing in the UK.
Cath Mummery believes the trial's results are a positive sign. Source: BBC / Panorama
Preventing the disease using genetic testing
Mummery believed the results were positive and was optimistic the drugs could have an even greater effect on people in the early stages of Alzheimer's.
"What we hope is, if you give it when you've got less amyloid in the brain and you haven't got damage because you haven't got symptoms, then it might have a greater effect.
This could be particularly important for people genetically predisposed to Alzheimer's.
Familial Alzheimer's accounts for less than one in 100 cases of the disease, but in families who have the gene, there's a 50 per cent chance of children inheriting it.
Pete, 33, went to get tested for the faulty gene after his mother died aged 41 after developing Alzheimer's. His grandmother developed the condition in her 30s.
It was bad news; he carries the gene.
"If I'm lucky, my onset won't start until my mid-40s," he said.
The 33-year-old is taking part in a clinical trial that is due to last another three years.
He is one of 168 people worldwide with the faulty Alzheimer's gene who are taking part.
"If these drugs I'm on within this trial don't work, I will get Alzheimer's," he said.
Pete, 33, is a carrier of an 'Alzheimer's gene' and hopes the new drugs will prevent the development of the disease he inherited. Source: BBC / Panorama
Who is eligible for treatment?
Lecanemab is already licensed for use in the United States, where it costs around $40,000 per year.
If approved in the UK, it will then be for health authorities to determine whether the drugs represent value for money for its public healthcare provider, the National Health Service (NHS).
If the NHS does prescribe the new drugs, they will only be available to patients whose Alzheimer's is at an early stage, so speedy diagnosis will be crucial.
At least one in three dementia patients in the UK never get a formal diagnosis.
Blood tests to detect high levels of amyloid may be available within around five years, but for now, it can only be picked up by a PET scan — specialised brain imaging — or a spinal lumbar puncture.
Only 2 per cent of Alzheimer's patients in the UK ever get either of these gold standard tests.
