Dear Perspectives 2.0,

Should I tell my friends I have dementia?

Jim, Person Living with Dementia

Only tell those you trust first. I think you have to process the diagnosis before telling other friends and family.  Then you can anticipate how to answer their questions and understand their reactions.

Perspective, Person Living with Dementia

Telling people about your disability is a personal and difficult event.  You may decide to tell some and not others depending on the social, employment or group participation. Most of the time, if I’m out, depending on the crowd, I may or may not say anything, because it may not mean anything if I’m only going to interact one time with that person. And there are other times that my wife will kind of cue me in to somebody that we go out more frequently with. She might say, you’re withdrawing back, you really have to tell this person what’s going on, because they’re looking at you confused. 

It also changes from moment to moment. In the morning, I might be good and more conversational about it. In the afternoon, I just may be knocked out, not willing to talk to anybody, and say, I’ve got Lewy body, and I just don’t have enough cognitive reserve. And explain to them what it is versus Alzheimer’s.

Perspective, Person Living with Dementia

Yes, definitely. It allows people to know more about you, and you are in a better circumstance to improve understanding about you and your situation. For example, I play pickleball a lot, 3 times a week. Two hours a session. I’m considered a good player, and most people want to play with me. The situation occurs in which I’ll meet someone for the first time today, and when I play the next time, which is 2 days from now, they’ll come and say, oh, let’s play again, and we had such a good time – we were good partners, we won a lot – and unfortunately, I won’t remember it. Having played with them, I won’t remember even meeting them. So, when I do meet someone for the first time, I explain to him, it’s most probable that when we meet again, whether it’s one or two days, I may not remember ever meeting you, or even playing pickleball with you. So, please don’t be insulted. And I would appreciate that if you do see me in the future, instead of waiting for me to say, “Hi, John, Hi Mary”, just come up and put out your hand and say, “Hi, my name is such and such. And you know what? Doing that has really improved my life. Because people are not surprised when I don’t recognize them.

Perspective, Person Living with Dementia

This is a difficult thing to grapple with, as people living with dementia often tell me they are worried people will see them differently. This is a valid concern, because of how people misunderstand dementia, but I would encourage you to think about what you hope will come out of sharing that you have dementia. What might be the benefits? 

It might be that your friend is grateful that you are sharing this so that they can support you. You might find that this person wants to be there for you, and you are giving them the chance to do that for you (you would probably do the same for them). 

It is very possible that your friend already suspects something is going on. They might be trying to piece it together, and they may or may not get it right. By telling them yourself, this empowers you to tell them what you want to tell them, on your terms, and with the language you want to use. 

You may need to educate your friend on what it means to have dementia. You might need to tell them that you are still you, just happen to live with a medical condition that affects your brain. 

On the other hand, if you tell your friend, and they don’t react positively, you can feel good that you tried to be honest. You can’t control their reaction, but you can decide moving forward what the friendship will look like. It also might take some time for that person to come to terms with what you have told them, and there is likely some part of them that is in awe of your courage and resilience.

Perspective of a professional supporting people living with dementia

Perspectives 2.0 is for informational purposes and is not medical advice.