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What not to say...
Posted: Monday, August 17, 2015 11:55 AM
Joined: 10/24/2014
Posts: 9


My husband was diagnosed with young onset last year at the age of 38. The last year has been a journey for us living with this disease.

I have had quite a few questions from people in the last year about young onset that I have been able to answer however the one thing that still gets me are the comments when people find out he has Younger-Onset ALZ.

Here are a few examples:

He doesn't look like he has Alzheimer's.

He doesn't look sick

Are you sure the doctors have it right?

Oh I forget things all the time are you sure its not age?

Do you remember when......

I will be writing a blog entry about this very subject of things "not to say" to someone who has been diagnosed with this disease to the patient as well as family.

What I would like to know if you would be kind to share some of the more ridiculous yet well meaning things that have been said to you when people found out you had younger onset.

I see how some comments by family or friends have hurt both my husband and our family. We would like to educate people about this. I think the one that bother's us the most, is "he doesn't look like he is sick", what does ALZ exactly look like?

I will also be posting this in the caregivers sight, as I am sure this happens to them as well.

Any insight would be helpful...



Jo C.
Posted: Monday, August 17, 2015 1:33 PM
Joined: 12/9/2011
Posts: 11244

If you Google this, you will find a lot of input as this is a popular topic and there are already extensive listings. You can also use the "Search" function here and find this topic with lists as it has been discussed on the Message Board multiple times.

One thing I really dislike is having others, whether friends, medical professionals, casual acquaintances or even strangers speaking about the person with dementia in front of them as if they are not there and especially when doing this, calling the person, "she or he or him or her." Never fails to astound me that people do this.


Posted: Monday, August 17, 2015 1:36 PM
Joined: 7/24/2015
Posts: 3020

There are youtube videos about "Stupid Things People Say To..." I am not sure if there is one for dementia, but if not...if you can compose a good list, maybe we can work up a video of it.

I like how when I finally gave my primary the report, she not only immediately underlines the "probable" part (the probable meaning probably caused by a medical condition, for a neurologist to sort out)...but then proceeds to ask me what my address is. It was so out of context that even though I know my address, I was completely blank....and very embarrassed.

She used to call my brain complaints "brain fog"...and I would reply, "oh how I wish it was just brain fog...because I would very much like to know where my clothes are each day."

Anyways. Welcome...and thanks for coming to this board. Not many caregivers make their way over here. My daughter thinks that is weird. But welcome. Many here would be happy to answer any questions you have.

Posted: Monday, August 17, 2015 9:14 PM
Joined: 12/5/2011
Posts: 795

Hi THodge2120,

Welcome to the YOUNG-ONSET BOARD.

I'm so sorry to hear about your husband. I'm sure you all having a difficult time.

As the others have posted lots of us have discussed the problems you and your hubby are having.

I have a few to add:

Oh, I do that too. I don't have AD.

I forget things too.

I don't understand why you can't drive. You look great.

Most people mean well but they don't know what they are talking about.

Their words hurt.

Hang in there! Education is the key!!!!!

Peace and hope,


Posted: Tuesday, August 18, 2015 8:22 AM
Joined: 9/12/2013
Posts: 3560

From my family

"Be happy!" leaves me speechless.

Not one sentence of condolence, and this after my Dad had ALZ. diabolical but I have been shunned by my family most of my life.

Being tested at doctor's office. "you remembered you fell." as if what?

as to lots of lists out there - those are mostly made up by people without dementia and old school thinking.

a list of what to say might be more revolutionary.

"I am so sorry. This is going to rough, but we are all in this together. We will love you through all of this. What a good daughter you are."

Mostly it is body language and tone of voice we hear, so might as well tell the truth with love.

"I know you're scared. I am too. We'll need to hug an awful lot from now on."

still waiting to hear that one.

Posted: Tuesday, August 18, 2015 10:21 AM
Joined: 7/24/2015
Posts: 3020

Towanda to the list of what to say! (I am all for a revolution).

* "we will handle whatever comes up in the future together."

* "you will not be alone."

* asking us questions intended to help you better understand what the individual is experiencing.

* true understanding.

Posted: Wednesday, August 19, 2015 5:51 PM
Joined: 9/12/2013
Posts: 3560

THodge -

maybe your husband would like to join the forum too?

Right now it is in a kind of blaze of glory with fresh ideas and big picture posting.

However, your topic on what not to say, written from your own experience of your husband being diagnosed so very young, is very important.

All the common irritants must be repeated in every story so that what is needed begins to sink in.

You and your husband are very welcome to post your thoughts and experiences here. Do not be overwhelmed by the bigger picture discussions. What you are sharing is crucial.

love to you both - please share again and again

Posted: Sunday, August 23, 2015 9:37 AM
Joined: 3/7/2012
Posts: 2563

There are several things people say that used to upset me. I've now learned a little 'trick' that has helped me. When someone says something that is ridiculous (looks fine, we all forget, etc) I simply ask if they would like to spend a day with us. Their look of shock and horror always makes me smile.

The one that upsets me worst of all is speaking to me as if DH wasn't right beside me. I find that so hurtful.