Hello,

I'm a first time poster here, although I've done extensive reading on the message boards and the rest of the site. I really apologize for the length of this post but the situation has suddenly become quite severe and Mom has tons of medical problems you should know about. I'll give the background first and then ask the 3 critical questions.

I’m 51 and for the past 3 years my 75-year-old mother and 77-year-old dad have lived with my husband and me. Mom has been diagnosed with Alzheimer's by her psychotherapist. Her PCP seems to feel there may be some indication as well, though the lowest she's ever scored on the MMSE is 25 (and she's taken many of them). Mom's psychiatrist disagrees about Alzheimer's and feels her problems are more likely related to depression. (She is bipolar and has been in a severe depression with agoraphobia since my younger sister died 10 years ago at age 35.) She also has lupus, and her rheumatologist feels this could account for some of her symptoms. Then there are the 22 medications she's on (and they're constantly being reviewed and discontinued whenever possible) for diabetes, high blood pressure, high cholesterol, Raynaud's disease, lupus, depression and bipolar disorder.

My husband and I believe Mom does have Alzheimer's; I've see her symptoms being consistent with Stage 3 for about 2 years now. 4 weeks ago, Mom was put on 5mg Aricept. About 10 days later she started to become suspicious (almost paranoid), hostile (with episodes of sudden and extreme rage that are totally irrational), and started to have rapid mood swings (not at all like her bipolar episodes).

The things I've seen since she started the Aricept seem to fall under Stage 6 symptoms...but she's missing many of the other symptoms and never progressed through Stages 4 and 5. I told her PCP what has been going on and his response was to increase the Aricept to 10mg and will most likely add Namenda in about a month. I've always monitored Mom's meds very closely and she's had unusual reactions to quite a few. I can't help but feel that her sudden changes may well be related to the Aricept, but I don't know whether to go with my gut instinct or choose one of her providers' opinions (maybe by picking names out of a hat!) and follow that.

This is horrible for Mom and all the rest of us and I'm starting to lose it myself. Trying to coordinate all these doctors, research meds myself, watch for possible interactions or other negative effects is just too much! I go to most of Mom & Dad's health care appointments with them since neither of them can remember what to tell the doctors or what the doctors tell them. Since I keep so much on top of things, their providers assume I’m in the medical field; but I'm not in it at all...except to make sure the providers aren't stepping on each other's toes and missing critical pieces!

BTW - You should also know that both Mom and Dad refuse to accept that she could have Alzheimer's and become belligerent when it's even suggested.

THE QUESTIONS:

1) Has anybody else seen Aricept cause changes like I've described? Should I go with my gut and take her off it to see what happens?

2) Can Alzheimer’s progress suddenly from one stage to another while skipping several stages in between?

3) Should Mom be seeing someone specific to try and deal with this? I thought maybe a geriatric psychiatrist, but couldn't find one who would treat patients who weren't institutionalized.


Thank you so much for any advice or for relating similar situations...

Terry

Hello Terry,

It certainly sounds as though your mother has been through quite a lot of trouble regarding her health. I am very impressed with the level of attention you have given to hers and your father's care. Working with multiple doctors, specialists, and medications can become overwhelming. You are performing a crucial role in coordinating the different parts of your mother's care.

First of all, let me say that I have not heard of such a dramatic change in mood and behavior resulting from Aricept. The following is some general information about the drug - much of which you may already have read in your research about it.

Aricept is in a class of drugs called cholinesterase inhibitors. It will not stop or cure the disease. About half of the people who take it experience some benefit. Individuals who respond to the drug may show moderate improvement in cognition, general function, or behavior.

There is no known way to predict whether any individual person will experience a beneficial response or side effect.

Most frequent side effects include diarrhea, nausea, vomiting, insomnia, fatigue, and loss of appetite.

The side effects are mild in most cases and usually last from one to three weeks, declining with continued use of the drug.

Generally, the initial dose is 5 mg a day (usually given at night).
after four to six weeks, if it is well tolerated, the dose is often increased to the therapeutic goal of 10 mg a day.

About the stages of the disease, they don't always happen in a completely predictable order or within predictable time periods. That said however, when you notice a sudden and dramatic change in functioning, it is very possible that something has triggered it (change in environment, a health condition, injury, or medical intervention). It is important to look into anything that may have triggered the changes (possibly the Aricept, though such symptoms are not typical side effects). Once that has been done and any possible adjustments have been made, if the new level of functioning or the new symptoms persist, it may simply be another stage of the disease.

Last, you asked who your mother could see about these symptoms and about the possibility of Alzheimer's. I would recommend that you find a neurologist for her. The neurologist may decide to involve a geriatric psychiatrist as well, but for the most part, neurologists are the doctors that primarily diagnose Alzheimer's disease.

I really hope that your mother's symptoms lessen and that you can find some answers to all of your questions about what it going on with her. I'd encourage you to call our helpline as well if you would like to talk further about any of this.

Sincerely,

Please forgive me for intruding. I came across something which I have only seen in one other place.

First, do you have a Neurologist who has examined Mother? Not all dementias are Alzheimers. I found Neurology to be the greatest help in diagnostics.

My mother's dementia turned out to be frontotemporal dementia. When I began searching and reading on the AFTD site, there was a bit of documentation which discussed the possibility that Aricept frequently caused increased agitation and negative behaviors for some FTD patients.

Later, doing further reading, I found this mentioned in another professional document - I am sorry that I do not remember which site that was on.

Again, I am not an Alzheimer's professional, so I cannot speak with that authority. I wish you the best with your mother.

I suppose that if your physician is agreeable, taking a 60 day break from Aricept could be a possiblity to ascertain if this brings any improvement.

Hello,

I read Johanna's post and thought to attach a sheet on AD and other Dementias. If you need referrals for neurologists, feel free to call the helpline 1-800-272-3900.

Hello Martha T and Johanna,

Thank you both for your replies. It really does help to know that others understand the difficult situations in which we find ourselves, as caregivers of loved ones with dementia.

Martha, the information you provided about Aricept and your explanation of the progression of Alzheimer's Disease - or other forms of dementia - were very helpful. I've been trying to find a possible trigger for Mom's sudden changes and still can't come up with anything except the medication change. But it makes sense that while what I'm seeing may not be specific side effects of Aricept, the addition of any medication could be a trigger for change.

Johanna, you are in no way intruding and the information on frontotemporal dementia and Aricept gives me another avenue to explore. I've already started doing some research and it bears further investigation.

I've taken the advice both of you gave - that a neurologist would be best qualified to find an accurate diagnosis for the cause of Mom's dementia - and have contacted the local Alzheimer's Association chapter for a referral.

Thank you again for helping me through my feelings of being overwhelmed. I expect to be a regular on the Caregivers forum, hopefully providing support for others while sharing my family's story.

Terry M.

Dear Terry:

We welcome you and are very happy to have you join this forum of friends. I often find it quite helpful.

Thank you Martha T. for your reading referral. Until I got to the FTD site, I thought that FTD occurred only in younger patients and had a very rapid progression.

Much to my surprise, though FTD most often strikes younger people, it can occur even up into the 80's. The form of FTD called Pick's Disease has more of a steady progression; but there are many reasons for FTD. Little did I know. Also, for some folks, depending on the cause of the changes in the frontal and temporal lobes, the progression can be slower. No two patients are the same.

Terry, what I have found since I've been dealing with this for my mother, is that I have become very much, a knowledge based person. I read, read, read on every credible site I can. I do believe Google will either name me "User of the Year", or begin charging me rent!

Perhaps, initially, what I wanted was an exact diagnosis to explain all the dreadful dynamics being exhibited by my mother. Knowing that she has FTD as well as dementia induced psychosis, (there's something else I was not knowledgable about), was helpful. But, as I've said on another thread; dementia is like trying to nail Jell-o to the wall; nothing stays. So, now I try to remember, "it is what it is". Somehow, sometimes, (not always), this helps me maintain perspective during the more difficult times.

I wish you the very best. You are on the right track in getting mother to a Neurologist.

Let us know how things are going for you.