A blood test that reveals whether we are at risk of dementia is just around the corner
But it may take several years before a medicine to treat the disease is available. “We are in an ethically difficult time now,” researchers say.
You suddenly can't find the house key. You can't remember what you had for dinner yesterday. Or the name of your new colleague at work.
Most people who are getting older are likely to have more and more experiences like this.
It can be discomforting when your memory fails. It can cause people to worry that dementia is right around the corner.
A simple test
A simple blood test will now allow doctors to detect Alzheimer's disease at an early stage.
Even before symptoms appear, a protein called beta-amyloid can begin to be stored in the brain and form plaques.
Another protein, called the tau protein, changes. The net result is that brain cells are damaged and die, so that cognitive symptoms, such as failing memory, crop up.
These blood tests have been used in Sweden for large research projects. Researchers have shown that they can diagnose the disease many years before symptoms appear.
It is expected that this test will be available in Norway as a diagnostic tool in 2023.
An ethically difficult time
The fact that there have been major breakthroughs in diagnosis, while the development of drugs that can slow dementia lags far behind poses real ethical dilemmas.
“At the same time, it is important to focus on the correct diagnosis so that patients and their doctors can come up with coping measures, but this is really for people who have already developed symptoms,” said Karin Persson, a postdoctoral researcher at the Norwegian National Center for Ageing and Health who studies dementia.
There is currently no cure for dementia.
A new drug to treat Alzheimer's disease was approved in the United States last year. Great optimism surrounded the release. But now the European Medicines Agency has decided that it will not be approved in Europe.
Geir Selbæk also agrees that the time is coming where the possibility of early diagnosis and the lag in treatment will pose ethical dilemmas.
He is head of research and professor at the Norwegian National Centre for Ageing and Health and professor of geriatrics at the University of Oslo.
Selbæk thinks the situation is easier when it comes to people who have already developed dementia.
“There is much that can be done to make their lives easier, and to facilitate services for them and their relatives. So it’s good that we’re working on more precise diagnoses, provided that people want these tests,” he said.
Many years before we get treatment
Selbæk is more skeptical about letting a patient know that he or she risks developing this serious disease in five or ten years without having a treatment to offer.
“It may only be a year until we have a blood test that can identify people who will develop Alzheimer's. But it will probably be many years before there is a treatment that can help prevent the development of the disease,” he said.
He also says it can be ethically problematic to put people in such a situation.
Right to know
Patients in the Norwegian healthcare system have the right to know what is wrong with them or what the future holds, if doctors know this. This also applies to testing for diseases that are incurable or cannot be prevented.
It is, of course, much more problematic when it comes to a disease that will only become apparent in the future, and where there is no cure or preventive treatment.
Berge Solberg, a professor of medical ethics, was quoted saying this in Dagens Medisin, an online news website for Norwegian medical professionals.
Solberg draws parallels to the ethics and thinking around hereditary diseases. This debate came to a head in the 1990s, when tests allowed patients to know if they would get Huntington's disease. This is a hereditary illness in which parts of the brain become damaged over time, causing memory lapse, jerky movements, difficulty moving and eventually, death.
“At this time, for the first time in modern times, people started talking about the right not to know,” he said in the interview.
Few test themselves for Huntington's
One danger of testing for a disease you may get in the future is that you end up waiting to get sick rather than living your life while you are still healthy.
“Your whole life is transformed by the disease you will probably get,” Solberg said.
Huntington's disease also has some similarities with Alzheimer's, in that people with the disease experience more and more loss of physical and mental functions before they die from the disease.
There are currently no preventive medicines for Huntington's disease either.
But support for the Huntington's test is very low.
“People tend to be afraid to test themselves when there is no treatment,” Solberg told Dagens Medisin.
Translated by Nancy Bazilchuk