Why Caregivers Should Confront Rather Than Avoid a Dementia Diagnosis

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.

A far more adaptive way to deal with their fears, though, 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.

Consider the advantages

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 new urgency for them to live as fully as they can now. 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.

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 themselves 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.