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I was told that it really doesn't matter if it's vascular or Alzheimer. Doctors in my town seem to avoid labeling, and so does my husband. I prefer knowing more about what to expect. Planning for the possible future would be helpful to me, and for medicines I would think. 3 years ago she had brain scans, and did not show signs of typical late stage alzheimers, but did show age related narrowing of veins to or in the brain. She was given Aricept anyway, and an antidepressant. I've read about both, but feel confused.

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Teepa Snow's videos are wonderful, agree w those who are recommending them.

@HelperMom, I hope your dad's care team figures out how to help him soon. It can be really hard to pinpoint just why someone becomes more aggressive or confused, and a move often makes things a little worse in the short term because it's stressful for someone with dementia. I will say that generally Aricept seems most likely to cause side-effects when people first start taking it, but quite possible it's not doing much for your father now and who knows, maybe it is contributing to his difficulties now. I think it's wise to try to not change too many things at once, and then just keep going with the trial-and-error, as you are doing.

Of course love, social connections, and exercise tend to help just about everyone, but often a little more of something seems needed...
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As Countrymouse said, Teepa Snow has an excellent series on YouTube regarding Dementia in all it's forms. I found each very valuable and informative. Lewibody in particular and for example freezes or locks up a body for a short time and then passes moments later and the patient can then function.
If you watch all the seminars you may be able to recognize the symptoms of your loved one and know more without relying on a reluctant doctor. Educating yourself is of the utmost importance. You know your loved one better than anyone else.
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Maybe that's a Freudian autocorrect, quiltin!
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I watched that 20/20 show too, very interesting! Seems to de-bunk a lot of conventional health info about aging, and ALZ. The only thing about the study is that I believe it was limited to a very select group of seniors in an exclusive retirement facility in a nice warm climate. Lol, things are going to be better there anyhow!
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Sorry about the auto correct....not mess but meds
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There was a very interesting program on 20/20. It was about the oldest old. They tract a huge group for years. When all was said and done, some people exhibited signs of Alzheimer's and some didn't. And when they checked their brains after death some of the Alzheimer's patients had no plaque or tangles in their brains and some of the folks who were completely lucid did. All these folks were over 90 and the results completely floored everyone doing the study. With my mom I just accepted her Alzheimer's diagnosis and felt free to adjust her mess as I saw fit based on her side effects. I did not take her for most tests simply because I felt like it was a waste of resources. Such as a bone scan at 90. Really??? I wasn't going to put her on more mess so why know.
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A diagnosis can be helpful in cases of diminished mental/memory capacity in order to qualify for community programs. For example, Mom had to have a documented dementia diagnosis for us to take part in the local Sheriff's Office tracking device service. Also, the dementia and Mom's age/condition is what got her accepted into a hospice program which is a big help at this stage.
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Thank you Dr Kernisan -- the other interesting thing to weigh is that some drugs like Aricept can have a side effect of causing agitation and aggression. We are currently awaiting word from the head of nursing at our Dad's ALF (just moved in and wanted to keep him on the same meds for the first few weeks to evaluate how the change in scenery would effect his condition). His cognition is much worse now in the last few months and his doctors have suggested taking off Aricept because the difficulties with cognition, combined with agitation/aggression (which yes could just be from the Alzheimer's itself), has made for a pretty volatile stew. (And they basically said he's at a point now were the Aricept isn't helping that much anyway.) We are a bit worried because we've heard discontinuing Aricept can cause a steep decline in functioning. But he has had trouble staying consistent with taking it, so he's probably been through several of those steep-decline episodes when he'd skip it for several days. (Getting meds on time and in the right amounts was a big driving force behind getting him into ALF!)
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Labels often seem to give the labeler an illusion of power over a disease, especially if they can't really treat it. Oh, throw a few drugs at it that mess up the metabolism and worse. But that is not healing. Rather than worrying about labels, I'd focus on nutrition, lowering the carbs (sugars and starches) and increasing the natural fats. Look up the Low Carb High Fat diet. Also consider chiropracty and acupuncture, if you can afford it.
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I think it's important. But, until diagnosing differing dementias with pinpointing tests are developed well enough to confirm the type, I don't see that happening. We just treat the symptoms now. I work with a few organizations who are making progress in their research & racing to find a cure before 2025, when the "baby-boomers" come into play with many of these.
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hi GrannieAnnie,
Esp in older adults (aged 80+), mixed dementia seems to be pretty common. I do think that some of my patients seem more vascular to me, and some feel more like Alzheimer's. Sometimes neuropsych testing seems to help everyone sort things out, but often I find it doesn't end up changing management very much.

In terms of what to expect, there's a lot of variability among individuals, both in terms of what's challenging for the patient, what kind of difficult behaviors come up, how quickly people decline. In general, geriatricians try medications and interventions as needed in order to manage a certain problem, like depression or agitation. For improving cognition, Aricept seems to work for some people but not do much for most.

I guess what I am saying is that there seems to be no way to help people know exactly what to expect. You can expect eventual decline and certain types of problems are common. To help every individual person with dementia be the best they can be, one needs to focus on the individual and usually do some trial-and-error to figure out what works for that person and his/her family.

Good luck, it's a long challenging road to travel.
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It's a maze. I found it difficult at first to accept that my dad had 'full-on' dementia. One minute he seemed logical and totally ok, next he is in his own world. When he entered the AL, they put him on Zoxadon and Alzam and now he is very placid and subdues. I found that hard to accept. He was less than his normal self. No diagnoses, just a neither here not there. I came to terms with it eventually. Hope you find what' you're looking for, if possible.
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Oncehated.... you sure described my husbands final months with diagnosed Alzheimer's. The weight loss, difficulty eating, bowels, etc. He was in ALF dementia unit for a total of 5.5 months. Hospice came in for my Man for 3 months before he passed. Autopsy says "Parkinson's with features of Alzheimer's dementia". I think I am more confused now!! Dementia... but two different kinds?
Comments on this post are all good ones. Enjoyed reading them.
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Ferris, I meant right now taking him off meds.
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Ferris1, do you really think is advisable to take a patient off meds. I am fight now taking my husband off Namenda because it is so expensive. He is also on Aricept and i wonder if it would be good to the him off that too. They are the only drugs he takes. Otherwise he is healthy. But t 9 years into the disease he struggles with every single part of activities of living. He can walk just fine!
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All great feedback and experiences. I'd like to share that having my parents testing was incredibly helpful to me. After the 2 hour neuropyschological testing, the doctor sat with me and my parents and explained where they had gaps. It helped me understand how each parent's issues were different (mom vascular initially but then diagnosed as multi-infarct and dad was diagnosed with Alzheimer's). Some come with additional complications so I would recommend you get the testing done, if only for your own education.
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There are only guesses in this dementia world and you had better resign yourself to not knowing. Meds for dementia do not cure the disease, only placate the symptoms. Try taking her off Aricept and see an improvement, or not. You are going to be kept in the dark, just like everyone else.
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Geriatric doctors are aware that hospice can be harder to get for Alzheimer patients. We were told by the hospice coordinator that if DDMIL had Alzheimer's she would not have qualified for hospice. Vascular dementia tends to have a shorter lifespan and can present very differently when death is very, very close. Our coordinater - 2013- said it had become much more difficult for Alzheimer patients to qualify for hospice. Seems like it could be possible that doctors are being cautious about getting someone classified incorrectly too early? When DDMIL's brain scans were done she was 6 1/2 years into her vascular dementia. She died in a typical presentation of vascular dementia death 18 months later. Her digestive system started failing first. Pounds just fell off of her. Her bowels stopped working, she had impaction after impaction. Her throat and esophagus failed the last 3 months. You used to hear about Alzheimer patients who lasted for years on hospice.
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AFIK there is no definitive diagnosis short of autopsy BUT there are ways to give important evaluations of best guesses...Some causes of dementia are
treatable and even reversible. source: Mayo Clinic

You really need to know correct dementia diagnosisAlzheimer's
disease and dementia, there is a distinct difference, other
dementias: Vascular dementia, Parkinson'sdisease, dementia with Lewy
Bodies and Frontotemporaldementia. Some causes of dementia are
treatable and evenreversible. source: Mayo Clinic
tinyurl/qdgj9g Carers need to know correct diagnosis.
--------------
Dementia Definition By Mayo Clinic staff
Dementia isn't a specific disease. Instead, dementia describes a
group of symptoms affecting intellectual and social abilities
severely enough to interfere with daily functioning. Many causes of
dementia symptoms exist. Alzheimer's disease is the most common cause
of a progressive dementia.

Beware of Brain Dead Doctors !!
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It's not so much unimportant, as really difficult. For example, my mother has vascular dementia but her older age psychiatrist also suspects Alzheimer's involvement. See also Teepa Snow's excellent presentations on the already vast number of known dementias, with more on the way. I have a feeling we will in future find that most dementias are multi-factorial.

I love that the doctors tell you they prefer to avoid labelling. Sounds much more professional than "search me, haven't a clue!"

So that leaves why it matters to know; and the answer to that is, of course, because it could affect the treatment of disease and alleviation of symptoms. If you have a suspicion - have you? - that your mother's doctor is prescribing for the sake of it, and the medications don't seem to help, continue to ask for reviews and don't be afraid to insist on knowing what the point of any treatment is. A repeat scan might be helpful, too, allowing for 'before' and 'after' comparison.

I hugely sympathise. I find it very difficult that there is no reliable map in this territory.
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