Dementia affects the entire family


I was very young when my grandfather suffered his first stroke and began his battle with vascular dementia. I grew up understanding that he was not like the other adults in my life. 

He would take me on long walks around the neighborhood, but it was never entirely clear who was supervising whom. He rarely had much to say, and when he did, it did not make sense. He communicated mostly through gestures, and sometimes unnerved my cousins and me with his uncertain temper.

With the benefit of age and experience, I appreciate now how frustrated he was, and what a herculean task my grandmother took on.

Medicine has made progress in the nearly 40 years since my grandfather’s death. We are better at preventing strokes and mitigating the aftereffects. We are better at distinguishing between the diseases that cause dementia. We have treatments for some of those causes, however disappointing those treatments are. We are better at addressing related challenges, such as sleep disruption and depression. We are better at guiding families as they struggle with difficult decisions, like when to stop driving.

Families struggle when they know Dad is not safe behind the wheel or at home, but Dad thinks everything is fine. One of the many things that dementia robs from people is the ability to grasp their condition. Some patients are skilled at hiding the extent of their impairment. Sometimes spouses fill in the gaps, so problems are less noticeable to the rest of the family. Patients can hide troubles from their doctors, too, so it is critically important that families and care teams maintain communication.

Just like many fully capable adults, dementia patients may fiercely resist the involvement of others in their business and many suffer for it. One of my patients hid her impairment until she was conned out of her entire savings. Another minimized his symptoms, until the family got a call from a stranger saying their father had gotten lost behind the wheel. Overruling the wishes of your adult parent can be difficult. But, when we recognize their vanishing judgement, intervening is the loving, and sometimes the lifesaving, thing to do.

Through much of my lifetime, I’ve watched my father worry about his own memory. This is a common concern for people who have seen a loved one struggle with dementia. I hope that someday, we will have more to offer, but there is no magic pill. For now, the best we can do is to give the same advice you hear from us on virtually every other topic: Eat a healthy diet. Get exercise. Keep your brain active. And welcome support from those who love you.

Debra Johnston, M.D., is part of The Prairie Doc team of physicians and currently practices family medicine in Brookings, South Dakota. For free and easy access to the entire Prairie Doc library, visit www.prairiedoc.org and follow Prairie Doc on Facebook featuring On Call with the Prairie Doc a medical Q&A show streaming on Facebook and broadcast on SDPB most Thursdays at 7 p.m. central.

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