Why won't my parents and their friends use the word Alzheimer's?

10 answers | Last updated: Dec 06, 2016
A fellow caregiver asked...

I know Alzheimer's can't be definitively diagnosed, but my mother surely has it. Yet she and my dad have never called her memory loss and confusion by that name, and none of their friends or my older relatives will use the word Alzheimer's either. Why does it have such a stigma for them?

Expert Answers

Lisa Snyder is a social worker at the University of California, San Diego, Shiley-Marcos Alzheimer's Disease Research Center

When many people hear the word Alzheimer's, they think of a very senile person. The word evokes a long-standing image of devastating dementia, despite the fact that people with early Alzheimer's can be quite functional and lead a meaningful and fulfilling life for many years. But people fear the idea of Alzheimer's -- the loss of independence, the loss of autonomy, and the thought of losing one's self.

It's like the word cancer was many years ago. It was frightening and somewhat taboo to talk about it. But this has changed dramatically, and there's a growing awareness that people can live with cancer and they can get treated. It's important that we put new faces and descriptions on Alzheimer's, too.

Fortunately, people are becoming increasingly public about their diagnosis of Alzheimer's and how they are living with it. Such stories give courage to those who are fearful of the disease and help to reduce the stigma.

Has your mother's doctor made the diagnosis of Alzheimer's? Sometimes, in an attempt to protect their patients, doctors contribute to the stigma by not discussing the condition openly.

It may help to soften the diagnosis in a manner appropriate to the stage your mom is in. For example, it's likely she has "mild Alzheimer's" or "early signs of Alzheimer's." Once you put the word on the table, some people may back away, but others will be relieved that they don't have to tiptoe around it anymore when it's clear something is going on.

Once your parents open up about the diagnosis, you can help them get in touch with the Alzheimer's Association, an Alzheimer's research center, or other organizations for support. You and they can meet people who are in the same boat, and that can be comforting and productive.

Community Answers

Laural answered...

Sometimes I think it's a matter of "if we don't say it out loud, then it won't be true," as if they could somehow cast the cloud of that diagnosis over themselves. I see the same thing happening with cancer diagnoses. To say it's name gives it power, if you will. Still, I think as time goes on and we all become far more educated about it all, we'll realize that we have power of the diagnosis and the name won't be such a wicked thing to say.

A fellow caregiver answered...

question: Isn't the diagnosis of Alzheimer's disease only confirmed on an autopsy? Our doctor is most careful about using labels, outside of MCI which has been confirmed by neuropsyche testing.

Jesscar answered...

I have realized that I too am very reluctant to use "that word" when speaking of my husband's "mild cognitive impairment", which I suspect is more than that by now. And I realized for myself exactly what is suggested above, that the very word has a kind of extra strong stigma which seems worse than mentioning "mild dementia". I'll wait for a diagnosis before mentioning Alzheimer's.

Oldfarmerf@aim.com answered...

We thought my sister in law had Alzheimers. I think she didn't. She kept having mini strokes that chipped away at her brain. I think it was vascular dementia. I have also heard that Alzheimers can only be diagnosed from an autopsy. The point is moot. What difference does it make? If one is losing memory, just call it that. Alzheimers is a scary word for many people. If it comforts your parents not to use the word, then so be it.

Frena answered...

people don't use the word alzheimer's because it is now a demonized medical condition, totally feared by most elders.

and also, actually, it is largely wrongly diagnosed. it's much more useful to use the word dementia, which is also much more acceptable to most people, because it;'s more accurate. all alzheimer's is dementia. but not all dementias are alzheimer's.

and actually, since there are NO markers to confirm alzheimer's, there is actually nothing to prove its presence. even those autopsies often raise more questions than give answers.

you have to remember that dr alzheimer was NOT interested in senile dementia and did NOT study it. he studied PRE-senile dementia, what we now call early-onset alzheimer's.

there are so many dementias (about 50 to 60) of old age, some specific and many non-specific. so it's okay to not call it alzheimer's. chances are very good it isn't.

as to parents not using the word, well maybe relatives are trying to force them to use the word alzheimer';s so as to prove to them they can't live their own lives. no-one likes that. wait till you're a bit older -- you won't like it either.

Trinity answered...

The comments before me pretty much said what I was going to say. More people need to be educated on the different dementias because not all dementias are Alzheimers.

Annevincent answered...

It makes me crazy and makes me want to pull my hair out when I read something like this!! I am caregiver for my mom who has Alzheimer's (78) and my dad who is 92. And...here is what I have to say........my mom has severe Alzheimer's and does not have a clue that she has anything.........just that she is sick.....but, back to what I have to say........In the scheme of things, does it really matter if they acknowledge what they have????????? The answer is NO!!!!!!!! I got news for anyone who is trying to make someone with Alzheimer's acknowledge that they have it....just give it a while and you will have much "bigger fish to fry" than worrying about whether they acknowledge their illness!! That's all that I have to say about that!!!

Kirti answered...

What's wrong with just calling it memory loss, anyway? Not everyone feels the same about it, and their feelings should be respected. What really matters is that the patient and their spouse receive proper care. In fact, elder caregivers of dementia patients are studied to suffer major health problems from becoming a caregiver when they are already elderly and more fragile. A holistic program like the 4 Pillars of Alzheimer's Prevention is what makes the most sense. They are all posted online at www.alzheimersprevention.org.

Glendaw answered...

My mother-in-law passed away several years ago from Alzhiemer's and my mother currently is in advanced stages of Alzhiemer's. My mother-in-law and father-in-law never mentioned to word Alzhieme's but my mother took comfort in knowing there was a name to the reason she was the way she was. Granted, now she is so advanced she has no clue there is anything worng but in the early stages she would get so upset at herself that it gave her comfort to tell her....it's okay Mom, you can't help it, it's the Alzheimer's.....

So it has to be an indiviual thing!What comforts one might scare someone else. Just follow their lead.