Early onset Alzheimer’s

My husband has early-onset dementia. He is now 53. Do you know of any resources for someone like him? Most of the information that I can get is for people over 65 with more advanced dementia. Neither one of us is ready to deal with that. I work full time, and he cannot tolerate being at home by himself all day. Right now I take him to his brother’s, but all they do is sit around all day there! Please help!

Dear Kathleen,
Unfortunately, there are few resources for persons with early-onset dementia. You are definitely on the right track in being concerned that he has nothing to do! Does your husband seem content with the situation at his brother’s house? I am glad you both realize that he shouldn’t be home all day.

If I were you I would look for a senior day center. Even though the people there are mostly older, the staff is usually well-trained in dementia care, and knows appropriate ways to interact with him to maintain his dignity. Very often, early onset and early diagnosis (less advanced) patients enroll in these centers as volunteers, and can actually assist with much of the programming. The center may need a lot of help moving things around, pushing wheelchairs, etc., and he can truly be of assistance – which will make him feel needed.

I know a young man (in his 50’s) who did just that. The staff put him in charge of an exercise program, and with a minimal amount of support he actually ran the exercise program for the other patients in the center. The center used a video of the exercises as he stood in front and lead the group. Everyone was much more engaged and able to participate when they had a live person showing them how. As time went on, and his disease progressed, going to the center was a comfortable and developed routine – and he just segued into the program.

Resources for early-onset patients are starting to be more common in some places, and even if there’s nothing in your area, you might be able to pique some interest based on your husband’s need by talking to some local nursing facilities.

Denial of the fittest

My mother is eighty-five. Does it really matter if she is just a little bit confused? She functions perfectly well on her own at her house. Why should I throw a monkey wrench into her life by taking her to the doctor, only to find out that something is wrong with her? Besides, I read that they can only really tell if someone has Alzheimer’s disease by doing an autopsy.
Doubting Susan

Dear Susan,
It is true that one can only identify Alzheimer’s with a brain biopsy, which is most often done at autopsy. However, the real reason to take her to the Doctor is so s/he can do the tests that are necessary to see if your mother needs any kind of treatment. Why is that important? Because the medications we have today work best with early detection.

I know from experience that it is extremely difficult to make decisions on behalf of someone else. Often it is just easier to ignore the little things and hope it will go away. Your dilemma is so common that I have created a set of ten absolutes exclusively for caregiver decision-making. Absolute One is: Never Assume, Instead Examine. This means one thing and one thing only: first make certain her house is in order, medically and financially – I’m talking about insurance, powers of attorney, wills, trusts and other ways to protect her. Before you do anything, talk to an attorney specializing in elder law in your state. They usually have a free first consultation, so you have absolutely nothing to lose. Next, make that doctor’s appointment and accompany her to the office!

If she truly is just a little confused and it’s still safe for her to live alone, you will have your opinion verified. If she needs medication and assistance to be safe, then you can get guidance. The anticipatory guilt you are feeling now about ruining her life is tiny compared to the guilt you would feel if something happened to her, m or if you discover too late that she was afflicted by something easily treatable.