What part of Mom's care should I focus on if she has mild Alzheimer's?

A fellow caregiver asked...

I'm not sure what to do. I read the information about dementia and mild alzheimers and think it is making me more stressed. Right now, my Mom is living alone independently and seems to be doing fine overall. I worry that I'll miss knowing when she needs more care because she is alone. Some days she seems like she's really going downhill and other times she seems like her normal cheerful, got-it-all together self. I'm having a hard time talking with her about my concerns. I've gotten her to go to a specialist and they diagnosed mild/early alzheimers-but now I can't seem to talk with her about it. I'm not even sure what the purpose of talking to her about it is right now. Or what the purpose of going to a specialist is because my Mom won't continue to take any of the meds because they caused severe side effects. So, her primary treatment is the basic good diet, exercise and staying active. I guess my question is - what should I be focusing on at this point?

Expert Answer

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

First of all, relax. Nothing is going to change drastically anytime soon. I appreciate that you took your mother to a specialist and got a diagnosis and I appreciate that you're trying to prepare yourself for the repercussions of the diagnosis. Truth is no-one can predict exactly what will happen in the future or when your mother will need more help. Very few people are lucky enough to time this just right. In the meantime, it's good, but definitely not important for your mother to acknowledge her diagnosis. The main reason we recommend that people are evaluated and get a diagnosis as early as possible is to give them a chance to make decisions about their future care, establish POAs (Power of Attorney) and give them time to state their wishes for their healthcare and long-term care preferences. Other than that, it's not important that your mother acknowledges her condition.

Your mother's reaction to the medicine is not unusual. Some people benefit from the medications normally prescribed for people with Alzheimer's and related dementia; others cannot tolerate the side-effects. You also need to be aware that the effects of these medications may actually be minimal and short lived, even in people who can tolerate the side-effects. In your case you've chosen an excellent approach for your mother: a good "heart-health"diet, exercise, and staying engaged and active.

From your description your mother is doing well so far, living by herself. You say there are days when it feels like she's going downhill. It's not uncommon for people with Alzheimer's or a related dementia to get tired in the afternoon and they may exhibit increased confusion, memory-problems and sadness; this is commonly thought of as "sundown syndrome."If this is your mother's situation and you have any influence on her activities, you can help her by limiting to the mornings anything that requires concentration or decision-making. Afternoons should be easy and relaxed filled with fun, music and anything she considers joyful.

I assume from your letter that you're already very involved in your mother's daily life, so you'll know when to be more proactive. Eventually you'll have to make decisions for her on her healthcare and her finances. No-one else can tell you exactly when this will be and it depends on your mother's demeanor. It's often tough for a person to lose control over her finances, so you want to take over gradually to give her a chance to adjust. People with dementia are increasingly vulnerable to being conned, so you'll want to protect her valuables and main assets. As long as it's important for your mother's sense of independence to carry money, you can maintain an account for her pocket money while her main assets are safe in separate account.