During a large conference in Amsterdam this week, it was announced that the disease slows down by 60 percent in patients with early Alzheimer’s if they use the drug Donanemab.Image Getty Images
At the age of 56, Edith Block’s mother died of Alzheimer’s. Her grandmother, her grandmother’s brother and sister and her great-grandfather on grandmother’s side also died of the disease. Block had known one thing for a long time: Alzheimer’s disease runs in her family and the first symptoms appear around the age of fifty. “At that time we did not officially know that there is a genetic defect in the family. That was the first time I had it investigated,” she says.
The illness kept her busy. When Block was 42, she had herself examined and it turned out that she does indeed have a genetic defect. “I had really convinced myself that nothing would be wrong. After the diagnosis I knew: the same thing will happen to me. And my husband has to deal with that. That is very heavy.”
It became a motivation to look for solutions. In England, Block decided to participate in studies at the American Washington University into medication to treat Alzheimer’s. For over four years she flew to London every month for medication. It was the only way to keep hope and to mean something for other patients with Alzheimer’s.
Severe dementia
An estimated 200,000 people in the Netherlands have Alzheimer’s. The group with a genetic abnormality is quite rare; it concerns about 1 percent of patients. Until now, there was no treatment for this disease, which causes pathogenic proteins to be produced in the brain and leads to severe dementia.
But breakthroughs seem to be on the way. In America, a first drug (Lecanemab) has been approved to treat the disease. The agent helps to clear up the wrong proteins, thereby inhibiting the disease. “It’s not a panacea,” says Niels Prins, director of the Brain Research Center. “But we are at the beginning of a new era. It is the beginning of Alzheimer’s treatment.”
Worldwide, about 140 drugs are being investigated that can combat the disease. The European pharmaceutical watchdog EMA is now investigating whether Lecanemab may also enter the European market. There are disadvantages to the drug: it is expensive and can cause serious side effects.
The drug Donanemab shows similar results. During a large conference in Amsterdam this week, where thousands of Alzheimer’s researchers gather, it was announced that the disease slows down by 60 percent in patients with early Alzheimer’s if they use the drug. Almost half of the participants did not deteriorate at all during the first year. An application has now been submitted for admission of the drug to the US market.
Every 14 days to London
For patients like Block, the arrival of new drugs means renewed hope. “That is amazing. Now it is no longer 99.9 percent certain that I will die of Alzheimer’s. Maybe I can think about my retirement.”
The first drug for which she participated in research did not show good results. She has been using another drug for the past three years that seems to be working. Since the beginning of last year, Block even flies to London once every two weeks to get the medicines. “I don’t like flying anymore. But what should you do if you know you will get the disease? This research is my only foothold.”
Moreover, she receives a lot of help from the research center, she gets to know fellow sufferers and she can do something for all those people who will still get the disease.
Medicine cocktail
Researchers think a drug cocktail may be the best cure. More things go wrong in the head of Alzheimer’s patients. By addressing those mistakes, scientists hope to slow down the disease process. “Now it has been shown for the first time that you can do something about the disease by tackling one cause. That is a scientific breakthrough,” says Dinant Bekkenkamp of Alzheimer Nederland. “But whether tackling one cause is enough for patients remains to be seen.”
Developments to make better diagnoses are also going fast. Now patients with memory complaints have to undergo a puncture to release cerebrospinal fluid or do a PET scan. But scientists are working hard on blood tests. A study will start this week in Amsterdam UMC in which patients have their blood drawn, says researcher Charlotte Teunissen. “It is spectacular that we can make the diagnosis through the blood. A blood test is much more accessible, can be done anywhere, is less expensive and less stressful for a patient.”
No more death certificate
Block is pleased that Alzheimer’s research is gaining momentum. When she thinks back on the past ten years, she can’t believe what she’s hearing now. “So much has happened. My mother couldn’t do anything yet, just wait and see.”
She is also very relieved for the future of her son, now 14. “By the time he’s 50 and can develop symptoms, the situation will be completely different.” Her son has a 50 percent chance of having the genetic abnormality. “I have felt guilty that I may have given him that gene. It’s also one of the reasons why we don’t have more kids.”
For him and all those other patients to come, Block will continue to participate in treatment trials. “Alzheimer’s used to be a death sentence, not anymore.” Because Block is also doing well, even though she has now passed the age of 50, the year in which most of the family members developed the first symptoms of Alzheimer’s. “Yes, I sometimes forget things, but I see around me that this is also part of the age. So I feel a little more normal, no one knows how life goes. Me neither.”
Edith Block has a genetic defect in her family that causes Alzheimer’s disease to occur frequently.Image Marco Okhuizen
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2023-07-19 07:26:34
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