Jocelyne Asked August 2014
Doesn't Dementia cover a large scope of illnesses?
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The term is used as if it's one simple illness & meds seem prescribed that way as well. My mom was prescribed Namenda without my even knowing why. A simple questions and answer test cannot give an accurate diagnosis, and meds should not be prescribed as if Dementia is one illness. Do I have to ask more questions to reach a specific diagnosis other than simply "dementia"?
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One of the frustrations of caregivers is the lack of knowledge about dementia within the medical community. And those who think they know about dementia probably know something about Alzheimer's (AD). But treating everyone who has cognition problems as if they have AD is inappropriate and often counter-productive.
My husband had Lewy Body Dementia, so that is what I know most about. I know that it does NOT progress in the same pattern AD does. People always asked what stage he was in. LBD does not progress through identifiable stages. People said, "He's hallucinating? He must be near the end," or "It must be drug-related." No, hallucination come very early in LBD. From my caregiving support group I know of a situation where the ALF thought the loved one was faking it (presumably for attention) when he couldn't do or remember something he could do a few hours previously. No. Great fluctuations in cognition are a hallmark of LBD.
So it can be very helpful to understand that there are lots of kinds of dementia. It is critical (in my opinion) that facilities understand this and know that not all kinds have the same symptoms. This helps them know what to expect and how to deal with it. And do you know who often is the educator about these things? The family caregiver!
We worked with the Mayo Clinic for my husband's LBD. His doctor is one of the foremost researchers on that disease. It helped me immensely to help him to understand something about the disease. My husband's dementia symptoms started in his mid 70s. He had it 10 years.
My mother has dementia, beginning in her late 80s. I know it isn't LBD and I don't think it is AD. We are dealing with it one symptom at a time. As Maggie says, she is loopy. As long as she is being treated well and the care staff has reasonable expectations of her, I'm not sure it matters at this point what kind of loopy she is.
Since there's no cure, I have absolutely no interest in finding out what form of dementia mom has. What difference does it make? She's loopy.
The only thing I DO have an interest in is distinguishing being medication-induced loopy, UTI loopy, and chemistry-balance loopy. And that's rather easy when one is the primary caregiver, dispensing the meds, and with their loved one 24/7.
The ONLY medications I give mom for dementia are those meant to manage her symptoms. She doesn't need one more pill in her pillbox unless it's meant to make her life a little better.
Frankly? When your whole body is falling apart...when you've given up your home...when you've left your partner of 45 years because you've had to move into assisted living, in with a daughter, or a nursing home? A little loopy is a wonderful thing.
Didn't there used to be a saying something like, "Getting senile is God's way of protecting us from the ravages of old age?" I agree.
I have no interest in giving mom the likes of Namenda. Screw that. Read the side effects. IT MAKES THEM LOOPY. Which pharmacy company is raking in billions by THAT being knighted "latest and greatest"? They can keep it all. (The nursing home..when mom was in rehab..put her on Namenda. She nightmared, talked vehemently in her sleep, had problems sleeping, sounded like Linda Blair at 3 AM, and hallucinated. (Took one Google for me to discontinue THAT.) No more.
My advice to anyone caring for a loved one with dementia is to keep them safe and manage the myriad side effects that stem from it. Giving a particular name to it? Who the heck cares?
It's loopy.
In order to get a diagnosis more specific than "dementia" you may have to visit more than one specialist, or go to a center that specializes in the diagnosis and treatment of dementia. Sometimes a specific diagnosis has to wait until more symptoms appear. And in most cases, the diagnosis will be a "best guess" with confirmation only possible after death via autopsy. It is still worth having that best guess, in my opinion.
Some of the drugs developed for a specific kind of dementia are widely used for many kinds of dementia. Aricept, for example, is very much more effective for folks who have Lewy Body Dementia than those who have Alziemer's, although it was developed for Alzheimer's.
But even if you knew without any doubt what kind of dementia your mom has, you still wouldn't know if Amenda would work well for her. It was developed for Alzheimer's but it doesn't work for every patient with Alzheimer's. And it is effective for some people who have other kinds of dementia. So a knowledgeable doctor might prescribe it regardless of specific diagnosis, and see if it works.
Does that sound like a trial-and-error approach? Well, yup, that is the stage we are at in the evolution of treatment of this widespread but never simple class of illnesses. My husband did very well on the combination of drugs he took for ten years. The autopsy report confirmed his doctor's "best guess" diagnosis, stated it was a very severe case, and that he obviously responded well to the drugs. Why? The report flat-out states "we don't know." It is still a mystery why some people do very well with some drugs, and others do not. In my opinion, it is worth experimenting with drugs (under the guidance of a specialist) in hopes of finding some improvement.
I would say that your mother was prescribed Amenda because she has some type of dementia and that drug often helps with some of the common symptoms of dementia.