Deception about Dementia: Why Early Detection can be Dangerous

Two recent pieces alerted me again to the misleading information that is often disseminated about dementia detection and treatment, sometimes by doctors themselves, more often in the press. Dementia is a horrible disease with no known cause or cure. Very few of Medicare’s resources are devoted to helping demented people and their families in ways that are sensible and effective, from exercise programs, to daycare centers, to custodial help. However, Medicare will be pay for any number of tests, specialist visits, and drugs, none of which have ever been demonstrated to improve the plight of those with dementia, but which cost the taxpayer money and resources better utilized elsewhere, and which in the end often make people sicker and more impaired than had they simply been left alone.

In the Washington Post this week an article by Fredrick Kunkle reviewed a new FDA approved device called Cognivue that helps “detect subtle lapses in the brain’s perceptual ability that may signal the early stages of mental decline caused by dementia.” The value of such a test is that “early detection can lead to earlier intervention to slow or arrest the disease….” The test takes 10 minutes to perform in a primary care doctor’s office, and patients can leave the office knowing whether they may have dementia. But the crucial word is “may,” and the crucial question is: how accurate is this test? I put that question to the article’s author, Mr. Kunkle, who kindly sent me the FDA review paper. In the document Cognivue was compared to another memory test, that itself has not been proven to be valid in assessing dementia and which does not relay how many false positives are picked up. I also emailed the Cognivue company with the same question, but received no response. To me this is a crucial question, and yet one of the nation’s predominant newspapers not only did not ask it, but also essentially provided information that was at best misleading. Frankly, unless a long term (a decade or more) study is conducted that measures people’s test results and then assesses over time how many of those people develop dementia, we cannot know the accuracy of Cognivue.

Why is accuracy so important, and what is the basic problem with a test like Cognivue? Let’s say that the test has 90% accuracy in correctly assessing who is at risk for the development of dementia. That means that 10% of people who take the test and are told that they may have dementia will never get it. That is a huge number of people who are falsely told they are going to get a devastating and life altering disease, information that may send them into a depression and cause them to alter their lives without reason for doing so, to pursue testing and doctor referrals unnecessarily, even to medicate themselves for no reason. The number of false positives may even be higher than that; the fact we do not know is very disturbing. We also do not know how many false negatives there are: people told they are normal who ultimately will get the disease. How could the FDA approve a product, and the Washington Post blindly present its merits, without knowing that information?

Further, the statement that early detection can lead to effective intervention is absolutely false. There is no treatment for dementia. Although many doctors with whom I have worked, especially neurologists who purport to be dementia experts, flood my patients with drugs that allegedly improve dementia, and convince my patients and their families that such drugs are necessary and effective, the evidence is clearly to the contrary. Dementia drugs have no impact on the progression of dementia. At best they improve symptoms in a minimal number of patients (9% more than those that take placebo, which itself improves symptoms in 30% of people, meaning that 91/100 people who take these drugs derive no benefit at all over taking a placebo pill) based solely on an improved score in a standardized 40 question memory test, but the drugs in most studies do not improve symptoms in a way that caregivers can actually notice or that makes any meaningful difference in their lives. This tiny improvement lasts 3-6 months, after which people who take the drugs do similarly to those who take placebo, and after a year every study stops, meaning to most of us that by then the drug effect completely wears off or may even be worse than placebo. There is no advantage to taking high doses of these medicines, or taking them in combination, but many of the neurologists and psychiatrists with whom I work prescribe them in combination, at high dosage, and for more than a year, despite clear scientific evidence that does not support such an approach. This is the early intervention to which the article refers, and it is not effective.

Not only is such intervention not effective, it is potentially harmful. A recent article studying dementia drugs found that 10% more people who take them compared to those who take placebo lose at least 10 pounds of weight. A large number of people who take these drugs also get nausea, diarrhea, and a loss of appetite, while a smaller number of people develop complete heart block and hip fracture in higher numbers than those taking placebo. Again, this is the ramification of early intervention: no clinical benefit, but the potential to actually make someone sicker. So not only does a test like Cognivue potentially falsely tell healthy people that they may have dementia, but it also identifies another group of people who actually may develop dementia somewhere down the road without having any way to change that reality. Why would someone want to know they have dementia in its earliest stage when there is nothing they can do about it? Wouldn’t ignorance be bliss in this circumstance? Very often, such people, after they learn about their probable diagnosis, leap from test to test, doctor to doctor, expert to expert, drug to drug, having their lives consumed by a futile search to cure the incurable, sometimes destroying their lives in the process and only making themselves anxious and probably more mentally impaired, even as they grapple with the side effects of the “miraculous” medicines that some “expert” doctor has convinced them is necessary and effective.

There are effective treatments for memory loss, none of which Medicare will pay for, and few of which any doctors of self-proclaimed experts will prescribe. But these are treatments that all elderly people should be following anyway. They include exercising, socializing, eating a good diet, challenging the brain, and keeping stress levels down. Taking the Cognivue test does not help curb the development or progression of dementia; in fact, it probably only escalates stress and thus worsens memory, especially people who are falsely told they are likely to become demented. It is time we realize that dementia has no easy treatment, that early detection does nothing to help people, that the disease is different in every individual, that drugs and experts likely only make matters worse, and that we need to live in a healthy way if we want to stay well and not worry about what may lie ahead when there is nothing we can do to alter that reality. It is difficult for people to live with such uncertainty, but as of 2015, despite what journalists and pharmaceutical companies and some doctors will tell you, that is all we have, and to try to treat something for which there is no treatment will likely just make you worse.