Alzheimer's and Dementa Caregiving, Dementia Caregiver Stories

Telling People

Something big has happened. Who needs to know?

Things to know

How will sharing the diagnosis help or hurt my Loved One and family?

  • Will they face stigma or be vulnerable to scams?

  • How could friends support our Loved One if they knew?

  • How do I share the news with young kids?

  • How do I extract my Loved One from their job?

  • What words do I use? 

ISSUE

People take time to process and weigh the benefit and cost of sharing differently. Younger people (hey!) seem to be more pro-sharing. Who knew?  

Your Loved One may have professional or other obligations that require sharing the diagnosis earlier or otherwise excusing them from those obligations. 

TIMING

You do not have to tell everyone at the same time. You can even "test" telling someone, like a clergy member. 

If possible, talk to your Loved One to gauge their preferences and concerns.

You don't have to share everything with everyone but remember not everything is about your Loved One. You need support too.

AN APPROACH

How they did it

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MIA

Age: Mid-20s

Loved One: Mom, Mid-60s

Diagnosis: Early Onset

Years Since Diagnosis: 13

I hate to say it. I was embarrassed of her. It wasn't happening to my friends’ moms. I would never offer our house to hang out. My mom was just waiting there. She had become a kleptomaniac. If there was a new hat or jacket in the house she would take it.

 

My mom  in the end stages now so it's hard to remember what a terror she used to be. But in high school, my mom had to be admitted to the psychiatric ward. She was threatening to hurt us. She was under five feet but she ripped buttons off my dad's shirt. She’d rip the door off. I’d go to school and I couldn't talk about it with anyone. If my mom had cancer I could have said she was in the hospital.

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EMMA

Age: Mid-60s

Loved One: Husband, Early 60s

Diagnosis: Early Onset

Years Since Diagnosis: 6

I told everybody.  I think part of what hinders Alzheimer's families is that nobody wants anybody else to know. I went the complete opposite way. I wanted everybody to know. I wanted them to know that we're gonna get through this. But also to educate people because nobody knows what to do. I always said, “if you have any questions, I want you to hear from me because I'm going through it.” 

 

I'm fiercely independent. I have a hard time asking for help. A friend said to me, “people want to help you. So give them something they can do.” That was a really helpful comment.

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JENNIFER

Age: Early 60s

Loved One: Husband, Mid-60s

Diagnosis: Early Onset

Years Since Diagnosis: 1

We make no secret of the fact that my husband has Alzheimer’s. I think that is the biggest mistake people are making. It's not his fault. It's not his fault that he has a terminal illness. It's not his fault that so much is being taken away from him. 

 

If my husband did something odd or maybe socially unacceptable and I kept that a secret, I don't think that is right. Keeping it a secret does not educate people about a disease. At work now, everybody knows. So if I have to leave work because he has a meltdown, I go home. I make no secret out of that. What do you do?

How you can do it

Learn more about how other caregivers have processed and shared the diagnosis news

MORE SHARING STORIES

We are building a guide to help you navigate telling people. Have ideas on what you would find helpful? Let us know!

COMING SOON -

SHARING GUIDE