Telling people you have dementia - any advice?

[HarrietD]

Do you have any tips for other people with dementia on telling people about your diagnosis?

It could be about telling family and friends that you have dementia, or perhaps an employer?

Or about letting people in public places know you need more time or consideration, for example through a badge, helpcard or sunflower lanyard?

We’d love to share your advice with readers of our magazine, Dementia together - please email magazine@alzheimers.org.uk before 4 March.

Thanks everyone

 

[maggie6445]

Do you have any tips for other people with dementia on telling people about your diagnosis?

It could be about telling family and friends that you have dementia, or perhaps an employer?

Or about letting people in public places know you need more time or consideration, for example through a badge, helpcard or sunflower lanyard?

We’d love to share your advice with readers of our magazine, Dementia together - please email magazine@alzheimers.org.uk before 4 March.

Thanks everyone

Hi ,my OH wears a badge that says, ' I have dementia,please be patient.'
He has a habit of talking to small children and used to show them his talking watch. I didn't want this misconstrued. He just finds small children amusing and would never harm them.
We have experienced nothing but kindness from parents and anyone else that has noticed it.

 

[HarrietD]

Thanks so much @maggie6445 for sharing - that badge sounds really helpful for public spaces. I'm so glad to hear you've experienced nothing but kindness from people who notice.

 

[Watson1]

Im a vermonter and we don't spend much time sugar coating things. little by little my friend and aquaintaces i tell of my alzheimer’s. a world of response ensue of course and a lot of education to those is needed. If i try to use a credit card i explain i have alzheimers and it will save the clerck a lot of time if the insert it themselves. this was after i tried to use one once. i never imagined i could turn the card around about 8 times and still not get it right . yea thats our world some days. Its ok im still me i i just happen to be alzheimer challenged some times more than others. be patient work with me here. talk with me yea il'l stumble some words. its ok its just alzheimers...

 

[DeeCee7]

Hi @Watson1 , that’s a great answer. You are indeed still you. We could all learn a lesson from you.

 

[HarrietD]

Thank you so much for sharing @Watson1 - I loved reading your comment. As @DeeCee7 rightly said, we can all learn from you.

 

[vas]

Do you have any tips for other people with dementia on telling people about your diagnosis?

It could be about telling family and friends that you have dementia, or perhaps an employer?

Or about letting people in public places know you need more time or consideration, for example through a badge, helpcard or sunflower lanyard?

We’d love to share your advice with readers of our magazine, Dementia together - please email magazine@alzheimers.org.uk before 4 March.

Thanks everyone

 

[vas]

Prevarication won't help. Tell them. Be prepared some will run into the sunset others will ignore it and yet others be helpful and supportive.

 

[HarrietD]

Thank you @vas for sharing this - brilliant tips. We're hoping that in future, with more awareness and information, we'll see more helpful and supportive reactions than the others you mention.

If anyone else has any advice to share, please feel free to add a comment below.

 

[David Joseph]

Hi everybody,
I have only been diagnosed at the end of July 2023, so I am still feeling my way ahead. The first thing I did was ask for my wife’s thoughts about disclosing the diagnosis. She advised that I hold off doing so, to choose the moment, when it seemed the right time to tell each individual. I think that was good advice, because everyone has a different personality and be in the right frame of mind emotionally to receive such info.
Anyway, the people who know me well, friends and relatives who have known me at least over the past decade, they would have witnessed my memory lapses and speech difficulties and stumbles at understanding what is being said by them, and would already have felt that something was going wrong with me however much I tried to cover it up. Many would have already known that I had heart problems, multiple sports-related and other kinds of head injuries, and that my mother had Alzheimer’s.
A stray thought —- the Internet and computers and smartphones are godsends.
Hope this helps someone,
David Joseph

 

[Phil & Julie]

Do you have any tips for other people with dementia on telling people about your diagnosis?

It could be about telling family and friends that you have dementia, or perhaps an employer?

Or about letting people in public places know you need more time or consideration, for example through a badge, helpcard or sunflower lanyard?

We’d love to share your advice with readers of our magazine, Dementia together - please email magazine@alzheimers.org.uk before 4 March.

Thanks everyone

The following is what my wife put on her Facebook page just recently.

I was diagnosed with Alzheimer’s disease on January 10th 2024. I have decided to tell everybody of my recent diagnosis of Alzheimer’s disease. I want to do this because I want to be open and honest with myself and other people about it. In return I would like people to be open and honest with me.

The response she got back from lots of people was amazing. People praised her for being open and honest. She doesn’t mind at all now about sharing with anyone that she has Alzheimer’s. I am her husband and I am really proud of what she has done.
I think that everyone should be encouraged to be open and honest about it. My wife thinks that while ever she can remain positive she will be able to do the things she likes to do..

 

[Mrs John]

Hi, my husband was formally diagnosed in 2021 though signs there a while before. He decided to tell everyone and has dealt with his declining memory, lack of understanding re:money etc. we talk openly about this horrid illness which has helped me to cope as well. But …. His driving licence has now been taken away and hes not dealing with it very well. We’ve had signs of aggression (not shown before) anger and sadness since. Today is a good day - hoping it lasts.

 

[LouiseK!]

Do you have any tips for other people with dementia on telling people about your diagnosis?

It could be about telling family and friends that you have dementia, or perhaps an employer?

Or about letting people in public places know you need more time or consideration, for example through a badge, helpcard or sunflower lanyard?

We’d love to share your advice with readers of our magazine, Dementia together - please email magazine@alzheimers.org.uk before 4 March.

Thanks everyone

 

[LouiseK!]

Hi Harriet

I bought a lanyard badge for my hubby from Amazon. He loves wearing it, I told him it looks like it's a work badge. He never forgets to wear it. It helps with the awkwardness when out and about and if he ever gets lost, it has my phone number on. I tell him hes a volunteer at the day centre so he feels like a staff member. Hope this helps

 

[vas]

You will certainly find out who your real friends are.Some people think you have immediately lost your witts and speak slowly with raised voices and speak to your partner instead of you. I now understand completely how non-English speaking people must feel when confronted with idiots who suppose this aids understanding. I have the urge to retaliate in kind.

 

[HarrietD]

This thread is now closed. Thanks so much again everyone - all really useful advice for someone who's wondering how to approach telling people about their diagnosis.