A survey of older Americans found that 79% want to know if they are in the early stages of Alzheimer’s, while 92% say they may or will definitely want to take a drug that slows the progression of the disease if diagnosed. The results may indicate a recent shift to testing and treatment for Alzheimer's. Westend61/Getty Images Closed subtitles
An older American wants to know if they are in the early stages of Alzheimer's and are happy to have blood tests to find out, a national survey shows.
Survey of 1,700 people over 45 years old, part Report Starting with the Alzheimer's Association, there has been an increasing interest in testing, diagnosis and treatment of fatal diseases.
More than 7 million people in the United States now live with Alzheimer's disease, the report said.
Among the main findings of the investigation:
- One in five respondents (79%) want to know that they have the disease before their symptoms start to interfere with their daily activities.
- 80% said they would ask for a doctor to be tested instead of waiting for the test.
- 91% said they would need to do a blood biomarker test or some other simple test if available. (Most respondents don't know that several blood tests on the market can indicate amyloid plaques in the brain, a hallmark of Alzheimer's disease.)
- 92% say that if they are diagnosed with Alzheimer's, they may or will definitely want to take a drug that can slow the progression of the disease. (Recently approved drugs, Lecanemab and Donanemab can do this for people at the earliest stages.)
-58% said they would take Alzheimer's medication even if it had a moderate or high risk of side effects.
- 83% say that if diagnosed, they will open to participate in a clinical trial of experimental treatment to slow or cure the disease.
- 81% expect that progress in Alzheimer's disease will be stopped over the next decade.
-44% said they were worried that insurance would not cover treatment if the tests indicated they had the disease.
The response shows that people are becoming increasingly afraid and proactive about the diagnosis of Alzheimer's. Elizabeth Edgerlya clinical psychologist who directs community programs for the Alzheimer's Association.
In the past, Edgerly said her clients would often say, “Oh my god, I don’t want to know” or “Why should I know?”
One of the reasons for the change is probably that it is easier to find out now.
Just a few years ago, it had a PET scan or spinal faucet to confirm the presence of sticky amyloid plaques in the brain. Now, simple blood tests usually provide the answer.
Another factor is providing medication for people at the early stages of Alzheimer's disease. This provides people with another reason to diagnose while they are still able to make their own decisions.
While the symptoms remain mild, Edgerly said: “They can articulate what they want in the future, but they can decide whether to try treatment.”
Dr. Nathaniel Chin, a senior doctor at the University of Wisconsin, said the arrival of drug treatments has made people live more optimistically.
“Even if it doesn’t stop the disease’s track, it tells people that we are progressing,” he said. “They want to know if it’s possible for them to do this treatment, maybe the next treatment or both.”
The findings reflect changes in public attitudes towards Alzheimer's, as he himself saw it in his own practice.
“I don’t think people are as scared as they used to,” he said. “I think there is a desire to know what’s going on in our bodies.”
However, many doctors remain skeptical about the benefits of testing. Chin said that is partly because they think existing drugs are just a small help.
“In this regard, some patients are ahead of the doctor,” he said. “They want that information and they will ask about it.”
Chin provides her patients with blood tests for patients with cognitive problems. He hopes testing becomes more common.
But that could bring some new challenges, he said. For example, many health professionals are not trained to consult someone who just learned they have Alzheimer's disease. A positive test result of a person’s medical record can endanger their work or health insurance.
“There are protections for people who learn genetic information, but so far, if you are not cognitively cognitively unaffected or healthy, there is no protection for those who are learning.”
He said more people are now finding it depends on groups including the Alzheimer's Association to promote these protections.