Empathy helps ease Alzheimer’s tensions

It’s the disease aging adults fear most. And it’s a likely diagnosis for almost 50 percent of people over age 85. Even as I type the percentage, I want to double-check it yet again. Can it really be true? I get this uneasy feeling in my stomach.

Our generation’s reality is that huge numbers of people will be diagnosed with Alzheimer’s disease over the next several decades. It’s an epidemic. And something we should be paying more attention to for many reasons, but most importantly because the whole family gets sick. It can be an absolutely family-wrenching disease condition.

For the individual with the diagnosis, memories fade away. Some say they’re "ripped away." Incoming thoughts evaporate. It starts gradually and proceeds slowly, with the time from diagnosis to death eight to 20 years. It’s a disease that introduces personality changes and, ultimately, significant physical dependency. Loved ones turn into strangers.

You might have seen "The Forgetting," a public television broadcast that aired recently. It profiled several families trying to cope with Alzheimer’s. It’s a sobering documentary to watch, and it made me feel sad but also strangely energized.

The documentary prompted me to ask, "What works? Is there anything that makes this incurable disease easier to manage?" And, wondrously, there is.

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For example, increasing attention is now being focused on the importance of early diagnosis and the prompt initiation of medications that slow the progress of the disease. There’s an exciting new medication, Nemanda (memantine, HCI) that has a significant impact on moderate to severe forms of the disease. Antioxidant combinations of vitamins E and C are said to have positive, even preventive effects. Physicians know more about the disease than they did previously. And the critical role of trained caregivers is better understood, as is the importance of support groups for families.

And there’s something else. There’s empathy. This is a disease where the person with the diagnosis may not recognize loved ones but still seems to understand the underlying tone of a conversation. And if the tone is negative, the situation can get worse. In these circumstances, anger begets anger. Frustration in the caregiver means that the care receiver is more likely to exhibit frustration.

I am told that family tensions easily ignite because the person with the disease always believes he or she is right, and "right" can quickly turn into irrational righteousness. What often follows is a debate where an already difficult situation becomes impossible.

Another approach, perhaps? Consider this scenario. I’m leaving the house with my dear-to-me 87-year-old friend. He’s in mid-stage Alzheimer’s, and he says, "There’s a rooster on the roof."

I could respond with, "Come on, Fred, how many times do I have to say it, there’s no rooster on the roof!" Instead, I reach into my empathetic self, and say, "And he’s a damn good-looking rooster too, isn’t he?" We laugh … and feel better, both of us. Less lost.

Sharon Johnson is an assistant professor in family and community development at OSU Extension and a member of the Senior Advisory Council. Reach her at s.johnson@oregonstate.edu.