Online Testing for Dementia

Learn about the benefits and risks of online tests for dementia, and why it is crucial to involve your healthcare provider.

A concern of many older adults is memory loss, so it’s not surprising to see how many dementia-related resources are available on the internet. There is an endless amount of information online, not all of which is accurate, about memory disorders and dementia. Patients and caregivers can find informative videos, articles, book recommendations, referral suggestions, and lists of support groups.

Non-prescription medications and dietary supplements are advertised, too, and some of the hype about these products exploits the hopes and desperation that a family can experience when a beloved member’s memory appears to be failing. In addition, the internet provides many tools claimed to be useful self-tests for dementia.

A search for “online testing for Alzheimer's disease” produced millions of hits. These tests can offer web surfers convenience, affordability, and the privacy they may want as they explore a very distressing question. In this article, I will discuss some of the benefits and risks of such tests and how to use them in a way that is most safe and helpful.

Two Major Types of Self-Administered Tests

Warning Signs Questionnaires

Many of these are questionnaires that ask the user to rate himself or herself on the well-known warning signs of Alzheimer’s disease. These signs include such behaviors as forgetting recent events, missing appointments, repeating stories or questions, having trouble with calculations, experiencing more trouble with self-care activities, giving up interests or hobbies that had been enjoyable, and getting lost traveling to familiar places. A person with significant problems in these areas may be able to recognize his or her difficulties.

Often, though, these mental changes are accompanied by a growing lack of self-awareness. For that reason, these questionnaires are sometimes more accurate when filled out by someone other than the affected person. A partner, relative, or close friend may be able to provide a more accurate report. You may be concerned about the cognitive health of someone whom you know well enough to assess with one of these checklists. If so, I’d suggest using the list in the course of an honest and open discussion about your concerns. Go through the list together and see whether there is agreement about what you’ve noticed. If the warning signs are there, it’s time to bring these concerns to a health care provider who can help you take the next steps in evaluation and treatment.

My greatest concern about using one of these lists is that it can provoke inappropriate fear. Sleep deprivation, medication interactions, excessive alcohol use, certain infections, recent anesthesia, and many other factors can affect memory without indicating the presence of Alzheimer’s disease. If the warning signs on these lists are present, though, it’s time to seek professional advice.

Quizzes

The other type of online test requires you to take a quiz. You will perform tasks requiring memory, spatial skills, or problem-solving. One site, for example, uses an interactive format to present pictures in a grid. Later in that test, you will be asked to recall both the specific items pictured and their locations. In the quiet setting of a neuropsychologist’s office, this can be a revealing examination. At home, with all the usual distractions and interruptions that are likely to occur, doing your best on such a test might be a real challenge. Under inappropriate testing conditions, you could end up with a worse score than you deserve and that could be truly alarming! I am concerned about the test-taker, too, who tries to perform such a test without fully understanding the instructions. This, too, can result in a low score that doesn’t reflect one’s actual mental skills. A final concern about these online performance tests is that they require you to register your identity in order to get access to the test or score. Some of these websites then follow up your visit with a barrage of advertisements for services or dietary supplements of questionable value.

Avoiding Product Ad Sites

There are some tests that can be printed, self-administered, and then taken to your primary care clinician for scoring and discussion.1 Some tests are available online in research centers or neurologists’ offices, although many are the subject of ongoing research.  The Self-Administered Gerocognitive Examination (SAGE), is an example of a test that has been validated, is available free of charge, and is not linked with product advertising. The published evidence that I found, however, describes the value of its use as a community screening test that would presumably be administered by someone with training.2 

Before taking this test, you are asked to familiarize yourself with the conditions governing its use, which include these very sensible statements:

“The Instrument cannot substitute for medical advice, diagnosis or treatment by a trained medical professional. Diagnosis and treatment of human illness should be based collectively on medical history, including family medical history, and a physical examination along with a doctor's professional judgment and review of all test results… Physicians' judgment must remain central to the selection of diagnostic tests and therapy options of a specific patient's medical condition.” 1

Involve Your HealthCare Provider

The online tests should be used as a communication tool for review with your healthcare provider. You might want to take the test at home, when you will not be interrupted or distracted. Bring the completed test to your primary care clinician for scoring and discussion. That way, your clinician will be alerted to your worries, which otherwise might be given less attention. At the same time, you may be spared unnecessary distress by sharing your test performance with someone who will take into account all the other factors that can affect your score.

Scientists are beginning to look at other forms of cognitive testing besides questionnaires. Examples include home devices that might detect evidence of impaired cognition.  For now, however, as you are faced with many opportunities to test yourself on-line, how should you proceed? My suggestion is to print out one of the warning sign lists or to print and complete tests like the SAGE test, and to use these as a conversation-starter rather than a final diagnosis. In the privacy of a close relationship or with a trusted health care provider, it’s important to share your concerns about memory or other cognitive difficulties. Early diagnosis is beneficial because it may help preserve daily functioning for some time, allows families to plan for the future, and gives people opportunities to participate in clinical trials that are testing new treatments.