Medication for mother diagnosed with Alzheimer's?

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Medication for mother diagnosed with Alzheimer's?

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We are in the process of finishing up a neurological assessment for our mother. She has seen a neurologist, been evaluated by a neuropsychologist, and is going back to the neurologist for a follow-up in May. The neuropsychologist, however, met with my sister and me alone while our mother was completing tests, so she does not know of his diagnosis of "severe Alzheimer's." Mother is in assisted living and still does everything for herself except take her medications. The staff must administer those.

The initial visit with the neurologist was not very subtle (Mother was in the room, of course, and heard everything). She has been experiencing this cognitive decline for many years. It probably started as vascular dementia, due to heart issues. I don't want my mother to be upset by hearing that she has been diagnosed with Alzheimer's. Unless there is a medication that can effectively slow the decline, I'm not sure about the point of continuing with these doctors. I suppose we want some sort of connection if her Alzheimer's causes her to be violent in future and she has to take a medication for that? Have any of you had any success with a medication to slow the decline or address violent behavior? Mother is 95.

Alzheimer's & Dementia Medications Violent Behavior

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Although I hadn’t seen your post until now, I want you to know that I would have made the same choice as you’ve already made.

As long as she’s FUNCTIONING well, watchful waiting sounds like a reasonable course for her.

One suggestion- be sure to request a WRITTEN REPORT containing the tests that were administered by the two specialists who saw her, preferably including their prognosis and recommendation(s). Whether or not their comments seem accurate now, the document itself may be helpful to you as her caregivers as she progresses in her AL.

My feeling about formal testing is that it can be a good servant but a bad master.
The statement “severe Alzheimer’s” doesn’t mean much to a lay person not familiar with the characteristics of the condition, and since there were no recommendations for tools to address her particular behaviors (which seem to be reasonably capable for someone of 95), there isn’t much to compare her ongoing behavior changes to.

You mother is fortunate to have focused, diligent caregivers.

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Thank you so much for your answer. We do have a written report from the neuropsychologist who tested her, as well as the MRI and EEG reports, but we don't have one from the last neurologist's visit in May, 2021. I will request that and make sure I have everything else together. I appreciate your suggestion!

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There is no medication that is proven to improve alzheimer's INCLUDING the VERY expensive new ones that are approved last month by the FDA due to patient demand (all tests inconclusive on whether they help and they cost 1,000s of dollars per year--as much as 30,000--with no proof in that they help at all other than anecdotal. There are some meds that help symptoms if patient suffers from anxiety or agitation.
I am a believer in a person knowing what they have. They understand that something is "wrong" and it is very anxiety provoking to be lied to even if only by omission. My brother was aware of his dx of early Lewy's Dementia, able to talk about it, relieved he was informed and there were reasons for his hallucination, difficulty with swallow, lack of sense of smell and taste.
As far as the reason for doctors, perhaps you are right and at the age of 95 with this diagnosis the POA may want to consider palliative care now unless there are troubling symptoms that require medication. Discuss with your Mom's doctors. I am so sorry for this diagnosis.

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At this point, Mother would not remember her diagnosis, but in other ways she is still quite capable. I see the wisdom in your brother's decision, however. It sounds as though he was younger than my mother. Thank you for your reply!

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I am posting an update on the outcome of our visits to the neurologist, regarding my mother's dementia. I'll repeat that I appreciated all your answers and thought carefully about them as we worked through this. The neurologist sent Mother to a neuropsychologist, who diagnosed Alzheimer's. We then returned to the neurologist, who didn't meet with us again but had her nurse practitioner go over the results with us. Two medications were recommended, donepezil and memantine, both of which had negative side effects and were only about 30% to 50% effective. Mother's primary care physician also said that only 3 out of 10 of her patients benefited from these medications. Due to Mother's age (95) and these factors, we decided not to add these medications.

Thank you again for sharing your experiences and advice.

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In my opinion and experience, you can take all these specialists and toss them right out the window for all the good they do. Last time my mother was in the hospital, the neurologist insisted I set up a follow up appointment with her in her downtown office for my then 92 year old mother with dementia and bad neuropathy in her legs/feet. Neither of which, by the way, this neurologist could help her with. Mother does very poorly with medication in the first place, so Gabapentin is about all she can tolerate for nerve pain. On the last day of her hospital stay, the neurologist cornered me in the lobby. Did I make the follow up appointment yet, she wanted to know? I said no. What for? What are you going to DO for my mother, I asked her, point blank? She looked at me like I had 2 heads. She muttered something about the necessity of having a neurologist on the case but couldn't say why.

In Memory Care Assisted Living, my mother has a PCP who visits her weekly and write any prescription she needs. So far, nothing works. They all worsen her dementia to the point of incoherence and constant falling. Palliative care is the goal now, at 94+ years old, wheelchair bound, moderately advanced dementia and 70 falls under her belt. I want to leave the woman alone to live what's left of her life not being poked and prodded by "specialists" who, in reality, can't change a single thing about my mother's advanced old age and infirmity except to make it even more uncomfortable, expensive and anxiety ridden than it already is.

Oh, I'm sure there will be others to disagree with my feelings on this subject and that's fine. It's just MY opinion and experience after dealing with my mother for the past 10 years.

Wishing you the best of luck, however you choose to proceed

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Thank you so much. I am leaning that way, myself, but feel compelled to pursue all the avenues as much as I can so that I can feel sure I have done my best for my mom.

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In regards to your mom becoming “less capable when faced with any kind of "test.", could skew the test results. After the neuropsychologist conducted a battery of cognitive tests on my wife, he commented that she seemed to purposely be trying to give false answers. This seemed plausible to me because she was always attempting to downplay any medical conditions she might have had. We had to return for a follow up evaluation, which apparently was more accurate.

Some people become anxious when confronted with any kind of test, myself included. I doubt if I could pass a lie detector test.

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Thank you for your answer. I just don't know if this was what was happening or not.

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To throw a spanner in the works, is the diagnosis valid? I just had this conversation with friends. There are so many things that can be mistaken for dementia; there's a good write up at www.scie.org.uk/dementia/symptoms/diagnosis/what-else.asp.

Your mom does sound awfully PRESENT to have "severe" Alzheimer's...
It would be helpful to have a good consult with a neurologist and behavioral specialist (for your coping skills).

Be well.

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Thank you for your reply. Yes, we have an appointment in a few weeks to follow up with the neurologist. We aren't trying to deny her mental state (or its severity), but we are also confused. She's been tested for UTIs, also. Thank you for the link!

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It seems odd to me that your mom was diagnosed with “severe” AD, yet you say she can do everything by herself except her meds, and that she is still in AL instead of memory care. Severe AD would imply that she is NOT able to do everything by herself.

There are some meds approved for AD – Aricept, Exelon and Namenda – are used to slow both the symptoms and the progression of the disease. A person might recall more of what they did that day, they may appear more alert and engaged, or might be able to provide more short term memory details. Their benefits are temporary and neither can reverse any damage. Some individuals benefit from their use, others don't. My wife was on both Aricept and Namenda as prescribed by the neurologist, and showed no improvement. Both were discontinued. Meds for behavioral issues can be prescribed when and if your mother ever experiences any violent or psychiatric episodes.

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Thank you for that reply. We will see the neurologist for follow up in early May and I will ask about those drugs. We thought the neuropsychologist's diagnosis was odd, as well, but our mother does become less capable when faced with any kind of "test." We aren't trying to avoid the diagnosis, by the way, we just want to be more aware of where we are in the process. We also know that it cannot be "cured." There was talk at her AL about moving her to the memory care section, but her brief, odd behavior has stopped. Lockdown has been terrible for all our aged.

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What you need at this point, in my experience, is a good geriatric psychiatrist who can prescibe meds for the symtoms that often develop with demmentia--depression and anxiety chief among them.

I am sure this team is very experienced in delivering this sort of news to elderly and frail folks.

My mother's team spent so much time and effort describing the positives of the situation and practical implications (shouldn't live alone any longer) and praising her for her decision making (moving into an IL facility) and prescriptives for selfcare (Mediterranean diet, exercise) that I'm not sure she heard the actual diagnosis. And as with you, the neuropsych had already apprised us of the severity of my mother's cognitive decline.

Call the team and ask their advice about how they will deliver this news.

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Thank you for your answer. Regarding the neurologist we are preparing to follow up with: at the initial meeting with her, she asked Mother a few questions (what's the date, season, who is president, etc.) then, when Mother could not answer correctly, spoke past my mother as if she were not even present and talked to me about her memory loss. The nurse for this neurologist assures me that the neurologist has many years of experience dealing with people in my mother's situation and will know how to phrase things. Since she didn't use that experience in our first meeting, I have a bad feeling about this next visit. We are relying on the recommendation of my mother's primary care physician and neither my sister nor I have any other connections to try.

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You mention cognitive decline for "many years," plus cardiac disease: there is nothing to be gained from having her told she has "Alzheimer's." She can do nothing about that, if she is indeed diagnosed.

I don't know of any medications that have been proven very effective in the long run, in slowing the decline due to Alzheimer's. I would not continue with the neurological evaluations or trials of Alzheimer medications to "slow the decline." How long do you think she will live, realistically, beyond 95?

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Thank you for your reply. I feel very much as you have said---what is the good of continuing? However, I know that Alzheimer's patients may become violent as the disease progresses and I worry that we might have a hard time getting appropriate medication/intervention help to handle this if she is not an existing patient of someone. My mother has outlived all her older siblings, and only has two (younger ones) left. She got a new heart valve in 2017 and a new hip in 2018. She survived both those major operations. She could live to be 100 for all I know.

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Medication for mother diagnosed with Alzheimer's?

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