Expert: Mary Gordon - 10/3/2007

Question
My mom is 76, her sister is in late stage Alzheimer's and her mother suffered from Alzheimer's before she died.  I'm afraid my mom has it too, but can't find out how to get a diagnosis.  My aunt was diagnosed 13 years ago and began taking Aricept (sp?) and did well on it for several years.  My mom's forgetfulness and confusion is getting worse and worse and she finally asked her doctor for an Alzheimer test.  The doctor asked her about 10 questions and she passed that, but that doesn't mean nothing is wrong.  What I'm wondering is, what other tests are out there that would allow my aunt to receive treatment for 7-8 years before she declined so horribly?  It took alot for my mom to finally have the courage to get tested, but I'd like her to get some treatment, if she needs it. Any suggestions?  Thank you.

Answer
Hi Kerry, if your mother herself has concerns, you are in a good position to help her.  What you are describing could be the early stages of Alzheimer's (the most likely explanation) but it could be a lot of other things.  

If your mother does not have powers of attorney for medical decisions, get her to sign one naming you, and to also give you written permission to speak to the doctor directly about her care. I'd give her family doctor one more chance to step up and do the more indepth diagnostics and referrals that will help her get a proper diagnosis. When the alarm bells are going off in your gut, I'd listen to them. You know her better than he does. You could try writing a letter to him outlining your concerns, and be specific about what you and other family members are alarmed about. Give him examples, and ask him to fully investigate and refer her to a specialist.  If a letter doesn't do it, you can try a face to face with him - or cut to the chase and find a better doctor. After all,  many doctors are poorly informed about dementias, and many are cavalier about this kind of thing in an older person. You know he'd be very alarmed if the same thing was happening to a younger person.

I am not sure what he did in his office - it may have been a form of this
http://www.patient.co.uk/showdoc/40000152/
You can try it at home with her to see for yourself. Our family doctor did a form of this on my mother in law that also involved drawing clock faces (i.e. he made a circle and asked her to put the numbers on the clock and then draw hands showing a particular time. It was a total shock to me, since she couldn't do it at all, nor could she copy little stick drawings of houses (or figures like in the link). At the time, if you had met my mother in law, you would have thought she was just fine, because she could carry on the most wonderful social conversations, and only people who really know her well would know she was anything but perfect.

Alzheimer's is only diagnosed by ruling out everything else it might be. Confusion and memory problems can stem from small strokes (so small the person may not show other signs of stroke), drug interactions or side effects, thyroid problems, pernicious anemia, depression - and a stack of other things.  So, the first step is to make sure your mother isn't suffering from some other problem that might affect her memory - especially if the "something" might be treatable.  A good assessment includes a full physical with assorted blood tests, some psychiatric evaluation to rule out depression, a review of history and medications, a neurological work up, usually including a CAT or other brain scan to rule out strokes, tumors etc. Usually a family doctor will refer the person to a psychiatrist with a geriatric specialty, or to a neurologist with expertise in dementias.  The fact he has not done so seems to me to be negligent and irresponsible given that Alzheimers is not only a progressive neurological disease, but one that is considered terminal.

A good assessment will also check out the extent of your mother's deficits.  Alzheimer's doesn't just affect memory. Because it affects the entire brain, reasoning, judgement and personality can be affected early in the disease. Things families notice first often include memory lapses, trouble with numbers or time, getting disoriented in familiar places (i.e. getting "turned around" on the way to the store), trouble thinking of words, asking the same question repeatedly,  getting upset easily or frustrated, changes in routine (i.e. they sometimes stop participating in things they previously loved), difficulty solving simple problems (i.e. not being able to figure out what to do when something goes wrong). It can be subtle, but I think you have very valid worries. Just based on what you are describing, your mother is likely quite a bit more impaired than you realize.

Clearly, something is really wrong - and both of you need to know exactly what is causing the symptoms you are seeing so you can figure out what you can do about it - and also make plans for what will happen next.  As you mentioned, there are medications that can slow down the disease in some people in the early stages, and others that improve mood, reduce anxiety, delusions etc. - but to get the right meds, you need to know what you are treating. You would never forgive yourself if her confusion was due to something treatable.

At the same time as you go after the doctor to get some action, you will also want to ensure legal things like powers of attorney, wills etc. are om order just in case, and start taking steps to understand and consolidate her finances to permit you or someone trusted to manage her affairs if this is what you fear it is.

What your doctor did was not a proper evaluation and screening. Hang in there. You will feel better when you start some action. My mother in law actually got sent for a full evaluation that was kind of like what they put kids with learning disabilities through, done by a psychometrist who worked for the psychiatrist.  My husband went with her, and he was totally, totally shocked at the results (i.e. despite her sounding so normal when you talked to her, she was very, very confused and impaired).

You are doing the right thing!!

Mary G