Commentary: Revealing dementia diagnosis largely up to the person
Dear Carol: My mom was diagnosed with an early stage of dementia. Unfortunately, she thinks that there's still a strong stigma surrounding dementia and she doesn't want her friends to know about her diagnosis. I understand and respect her feelings, but when I asked her if she'd tell them if she had cancer, she said that she probably would. I tried to tell her that this shouldn't be any different. Since her best friends don't live close by, and she sounds like her normal self during most phone conversations as well as in her emails, there may be no rush. Still, while I don't want to go against Mom's wishes, I think that she could use their support, and they are the type of people who would be behind her 100 percent. There will likely come a time when they should know. When is that time? — CT.
Dear CT: You are concerned about your mom's connection with her friends and that's commendable. She will need their support more than ever as time goes on. I can see why you want them to understand what the problem is if she starts to act confused when talking with them or if they notice substantial memory issues, but I can also see your mom's view at this point. She may need more time to absorb her diagnosis before sharing it with her friends. I also understand your mom's fear of the stigma that surrounds any type of disease that affects the brain. Sadly, she's right, which is horrible on many levels but that discussion is for another time.
You didn't say what type of dementia your mom has so I'll assume that it's Alzheimer's disease, which is the most common type. My advice would likely be the same for other types of dementia except that some types, such as Lewy body dementia, can cause personality changes early on that are quite startling. In those cases, her friends may be more on board if they had an explanation quite soon.
For now, though, since your mom has expressly said that she doesn't want her friends to know, you need to honor this. As time goes on, she may realize that her friends will notice that something is wrong and it's only fair to them, and to her relationship with them, that she explain her diagnosis.
Support your mom and educate yourself on her disease. While your mom may need a little time to come to terms with her potential future, she has the gift of time to plan how she'd like her care to look as her dementia progresses. Plan together, and make certain that all of her legal documents are updated to reflect her wishes.
You may also want to make the point that since silence and shame just encourage this unfair stigma, if she is open about her diagnosis, at least to her closest friends, she will be doing her part to show to ease that stigma.