Other Responses Upon Hearing of an Alzheimer’s Diagnosis

What are some other responses people have upon hearing someone they know has Alzheimer’s disease or another dementia? Actually, if the diagnosis is a form of dementia other than Alzheimer’s, there is usually a fair bit of education that has to occur. That conversation usually goes like this: “He has a form of dementia.” “Oh, he has Alzheimer’s?” “No, it’s actually Lewy body dementia” (for example). Long explanation then follows.

What about the non-response? You know, the friend, who upon hearing the diagnosis, just disappears? That’s really hard to take. Because they have disappeared, you really don’t know what they were thinking. Maybe they felt awkward and didn’t know how to interact anymore. Maybe it was just too painful for them to face it.

Personally, I have thought that if a close friend of mine develops Alzheimer’s disease today, I’m not sure I could be the friend that is immediately and totally supportive. It’s too close to home right now. I don’t want to experience it again with someone I hold dear. I know, with time, that I would come around, but it makes me better understand why some friends and family exhibit the “non-response.”

And then, there are the awkward responses: “Does she still know you?” “Can he still drive?” These people just don’t understand the course of the disease, and jump to classic concerns. A little education goes a long way here.

Sadness for the affected person is another very reasonable response, as well as sadness for the caregiver and their family. This was a common response from our patients upon hearing about Harvey’s diagnosis. Some were so genuinely grieved, that they cried for his loss. I found myself in the situation of having to console patients, in the midst of my own grief, as they grappled with theirs.

This was all the more difficult because I was the one sharing the news, one-on-one with individual patients, multiple times a day in the first year or so that we began to open up about Harvey’s diagnosis. Of course, it did feel amazing to hear, over and over, how much he had meant to them, and how sad they were for his sake, but it was exhausting too.

And maybe you’ve experienced this next scenario: You tell someone about a loved one’s Alzheimer’s diagnosis, and the listener then launches immediately into telling you all about their experience with Alzheimer’s disease in their family or friends. It’s as if they hijacked your sorrow right when you needed it most.

Not sharing the diagnosis brings its own set of issues. Friends and family are left wondering what is happening, especially if the response of the affected person and/or the caregiver is to isolate. Because of liability concerns, we could not share Harvey’s diagnosis with patients for a year. I later learned patients were imagining a host of explanations for his retirement: cancer, divorce, drug addiction.

Of course, the most common response is one of genuine concern and offers of help. It’s hard to know what to say to those offers right when they are given. A smile and “Thank for your concern” may be enough.  However, I do recommend having an arsenal of suggestions at the ready. People really do want to help, and if you give them a specific task, all the better.