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What Not to Say to Someone with Early Onset Dementia

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Updated January 31, 2013

If your best friend, sister-in-law or neighbor has just disclosed to you that she has early onset Alzheimer's or another kind of young dementia, what should you say? Actually, let's talk about what NOT to say.

"That's not true. Only old people get Alzheimer's."

The majority of people who develop Alzheimer's disease are over age 65, but approximately 200,000 people in the United States under 65 have early onset Alzheimer's, and some of them are in their thirties and forties. Unfortunately, younger onset dementia does happen.

"I knew it. I kind of thought you were forgetting a lot of things lately."

Perhaps you have noticed some of your friend's difficulties with her memory, but clearly this response would not be your best choice. If she asks if you've noticed any changes, you can be gently honest, but if you're not asked, don't share your opinion unsolicited.

"Well, at least you get to retire early."

Employment and dementia can become a difficult combination, but your friend may just now be trying to accept this new diagnosis. Assuming that he'll have to quit work right away is jumping ahead of where he may be emotionally. It is also insulting to think that this is the way he would want to retire. This is the time to talk about what he wants to talk about, not what you think could, or should, be the next step.

"It could be worse. At least you don't have cancer."

Not the best response, either. Yes, he could have cancer, but he has Alzheimer's instead, and it's not any easier than cancer. In fact, many would argue it's worse.

"Oh no! Who's going to raise your children and be there when they get married?"

Ouch. There are so many things wrong with this response, I'm not sure where to start. Do you think your friend doesn't know that she will likely miss out on important milestones and everyday life? If she brings these feelings and concerns up, listen to her and support her. If not, keep your thoughts to yourself.

"Do you have life insurance? If you do, at least you can provide for your kids' education."

Really. As the saying goes, "With friends like that, who needs enemies?" You may think you're being practical and looking out for the families' needs, but it comes across as if you're far too eager for your friend's demise. Don't go there.

"When will you move to the nursing home? I'm sure you don't want to burden your family."

If this option is discussed at some point down the road, that's for family members to carefully consider, not for you to suggest. And, suggesting that your friend is a burden to her family is just unacceptable.

"Do you think your husband should marry someone else after you're gone?"

You think I'm making this up, don't you? I guarantee you that this, or something right along these lines, has been said without thought for the feelings it provokes.

"Have you heard the one about the old lady with Alzheimer's?"

Not funny. Some people joke around when they're uncomfortable and don't know how to react, but this does not help your loved one. Step it up and be with him.

"I'm going out with the gang on Friday. I didn't think you'd want to join us, given the circumstances."

Don't assume she won't want to spend time with her friends. One of the more hurtful things after disclosing a diagnosis can be feelings of isolation and rejection from friends. Make every effort to provide reassurance of your commitment to the friendship by inviting her to regularly spend time with you.

"I'm so tired of being busy with work and the kids and life. I wish I could stay home from work like you do."

While you might feel busy and tired, she might be aching to feel productive and needed in these ways. Bite your tongue when you're tempted to complain to her about the busy pace of life or all of the different roles you have to play.

"You probably don't remember this, but..."

Don't make the assumption that he forgot something. This may or may not be the case, but the insult and patronizing tone rings loud and clear in that statement.

"I wonder if you wouldn't have developed dementia if you had done more crossword puzzles and taken more vitamins."

Don't ever blame someone for developing dementia. You're inferring that he could've prevented it and that it's his fault. Please don't go there.

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