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Why Caregivers Should Confront Rather Than Avoid a Dementia Diagnosis

Don’t let fear of the unknown prevent you from taking the steps to help your loved one

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Jon Feingersh Photography Inc / Getty Images

“Bob has seemed more confused recently,” his wife, Sandra, my 77-year-old psychotherapy client, tells me. “There are days he can’t seem to remember anything.”

She had expressed similar worries several times in recent months, and we had speculated what his forgetfulness might mean. Today I ask her gently, “Have you given any more thought to having his thinking skills tested?”

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She frowns slightly and says, “I know I should, but it would crush him if he were diagnosed with Alzheimer’s dementia.”

It would hurt them both, I am sure. She is afraid the diagnosis would make him give up on himself. Even the thought of asking him to undergo a neurological or neuropsychological evaluation triggers her guilty feelings. Her instinct is to protect Bob, not confront him. She knows she is protecting herself, too, from what would be devastating news and an upturning of their lives. Yet she still worries.

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Spouses and adult children have always struggled to know what to do in these situations. Should they seek an assessment and hope that their concerns about a relative’s memory lapses are groundless or that the lapses are due to some correctable cause — for instance, a medication interaction or hormone imbalance? The risk, of course, is receiving the hard blow of a dementia diagnosis. Or should they avoid noticing increasingly frequent “senior moments”? That would risk ignoring a brewing family crisis.

In my experience, family members, such as Sandra, most often choose avoidance, at least early on, saying, “Why should I make my relative get diagnostic testing for a condition for which there are no good treatments?” But since 2021, two new drugs, Aduhelm and Leqembi, have become available to potentially slow the progression of mild to moderate Alzheimer’s dementia. Though evidence suggests they are only modestly helpful — and studies assessing their effectiveness are ongoing — the drugs herald a dawning age of more effective treatments for the disease when it is addressed in its early stages. Putting off diagnostic testing — thereby delaying the start of treatment — could reduce their ultimate benefit.

Why should family caregivers confront head-on the signs of a loved one’s possible dementia? Here are some ideas:

Fight fear with information

Some family members avoid not just diagnostic testing but even learning anything about the condition. It is as if they believe, to reverse an old aphorism, “out of mind, out of sight” — that is, if they don’t allow themselves to think about dementia, then they won’t see a loved one’s cognitive decline.

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A far more adaptive way to deal with their fears would be arming themselves with information. For instance, Sandra could tell if Bob’s tendencies to lose his keys and forget simple words are a normal part of aging or a problem if she can muster the courage to look at articles and books that help distinguish the two. If Bob were diagnosed with dementia, she could find out what to expect by reading about the disease and learning about its typical course.

Live life now

Although some family members see only disadvantages in pursuing a dementia diagnosis, there are distinct advantages, too. By learning that dementia of Alzheimer’s and other types generally progresses slowly over years, Sandra and others can consider the benefits of available medications and taking preparatory steps for what may come. She might realize a diagnosis doesn’t end Bob’s life or their life as a couple but adds urgency for them to live as fully as they can. That cross-country car trip they’ve dreamed of taking for the past decade? Maybe now’s the time to make those happy memories. Attending the grandkids’ soccer games and school band concerts? They take on new importance. The advance directives and last will and testaments their adult children have been pushing them to fill out? Perhaps they should stop procrastinating.

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Other advantages

The few drugs available to help manage some of the symptoms of Alzheimer's — for example, Aricept and Namenda — work best when taken in the disease’s early stages. Delaying a diagnosis and starting treatments later decreases the likelihood they will be of any benefit. It is commonly assumed that caregivers who early on confront the diagnosis, educate themselves about dementia’s symptoms and treatments, and revise their expectations for the future will be better prepared psychologically for their relative’s decline and cope better.

Countering stigma

Compounding some family members’ fears of a dementia workup are feelings of shame about the diagnosis, as if it would reveal a loved one’s moral failings rather than a disease that is most strongly associated with aging. Or if they don’t hold such stigmatizing views, they may be rightly concerned that others do and that the diagnosis will cause friends and other family members to stay away as if the affected person were contagious or radioactive.

It is never easy to counter stigma in any form, but family members can reflect on the effects of their own, even subtly negative attitudes. Sandra might ask herself, “Will I really stand in the way of getting Bob a diagnosis and possible treatment because of my fears and discomfort?” In all likelihood, she will move forward, hopefully sooner rather than later.

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