When and how is it appropriate to start talking with my sister about her dementia?

1 answer | Last updated: Sep 17, 2016
A fellow caregiver asked...

She is on Namenda, prescribed by her doctor. She has noticed her own struggles with remembering, and needs to write more and more down and then can't find where she wrote things down. She lives by herself. Every now and then she brings up her memory struggles during our visits, and I acknowledge that I, too, am noticing my own memory loss at times. I am wondering if we might go together to an upcoming public presentation by a specialist on memory loss issues. This might help us break the ice in communication, but it might also make her fearful (which she probably already is) and defensive.

Expert Answers

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

Dear Edward:

Thanks for your excellent question.

The short answer to your query about when to start discussing memory loss, especially in a case where you have a personal relationship with the patient, is immediately.

The best way to begin the conversation is to do so when you're both calm and relaxed and let her know that you're as concerned as she about her worries over her memory loss. The very fact that her doctor, hopefully a neurologist, has put her on Namenda speaks volumes about her memory loss problems.

Tell her you love her, and you know that you both want the best for each other. Let her know that you want her to trust you to take some steps together now, so you don't have to worry about what to do if and when things begin to decline or there's an emergency.

You're correct, this may make your sister fearful, but it will relieve her to know that you care and want to help her. The sooner you get involved in her memory loss issues "“ and for that matter, your own "“ the better chance you have of starting a program to enhance and sustain her current quality of life and plan for the time when she (and you) may need additional assistance or longer term care.

As her condition continues to decline over time, your sister's living alone may present an increasing number of challenges far beyond just her current need to write things down or forgetting where she left her notes to herself. She may forget to take her medicine(s) or take multiple doses, and she may not be eating well or properly caring for her personal hygiene.

One suggestion for her note taking is to hang up a white board and create a calendar. She can make her notes, indicate with a check mark if took her medicines every day, and the board will always be in the same place. You can visit and update or erase things once they are completed or have passed, and she can know that her To Do lists are secure.

Pay close attention to be certain that she updates and completes her daily items, as that may become one more thing she starts to forget. That will indicate to you that it's time to increase the level of daily attention needed for your sister.

Your comments seem to indicate that your sister has been diagnosed as being in the earlier stages of memory loss. Going to the upcoming public presentation on memory loss may be a good idea if you follow it up with an open discussion of your concerns for your sister's and your own memory challenges. Doing nothing, or accepting her (and your) denial of the problem will only put off some of the inevitable discussions and planning that are better faced while you're both able to do so rationally.

Be sure that you both have your advance directives completed, with secondary or possibly tertiary persons named as your personal representatives for your financial and health care surrogates and powers of attorney, as you may not be capable of taking on those roles for each other if you both have similar and ongoing memory issues.

I also suggest that you contact your local Alzheimer's Association to get as much information about memory loss, and possibly referrals for future involvement with a geriatric care manager or care providers should your needs change.

It's a good idea for longer range planning to have someone become involved with her/your daily lives "“ taking medicines, driving to doctors and other appointment, activities of daily living etc. "“ as the increased need for assistance with those aspects memory loss become more pronounced.

I commend you for taking a proactive role in this situation. Best of luck, and stay active and proactive in the months and years ahead.