Alzheimer’s doctors
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Anonymous
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Any suggestions for clinicians or clinics for an 80-year old just diagnosed with early Alzheimer’s? The neurologist she saw was neither clear or supportive, just put her on a medication and told her she’d have to go somewhere else to explore antibody infusion because of microhemoraging.
We’re on the waitlist for UVA memory care- hoping for a second opinion and some advice on prognosis, planning, etc. Are there other options? |
Anonymous
| You should ask her primary care doctor for referral. |
Anonymous
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Honestly years into this and doctors have not been helpful. I wasted time taking days off to take my mother to the supposed best specialists, getting MRI, PET scans, researching medications, etc. They don't end up really explaining what you are up against.
What really helped was watching YouTube videos so you can see where you are headed. I found this person incredibly helpful. It is a woman who recorded her mother and her mother-in-law going through stages of dementia and discussed the different stages and how each person might cope differently but they share a level of impairment. https://www.youtube.com/@lifeunderdeborahspalm-thed8114 For example, this one is of not only what to expect but what to DO as a loved one in stages 1-3 https://www.youtube.com/watch?v=nHlsEoLz29k I learned so much more watching her videos than at any doctors visit even visits with a neurologist at a university hospital research institution. |
Anonymous
| Mom's neurologist in Md just had her draw a clock showing a certain time at each visit. |
Anonymous
| Same. Doctors have been of no help. I think best the course of action is finding techniques, routines, strategies to help the caregiver do the best they can, and to plan for what is to come. The disease will progress no matter what the caregivers do. I gave up on making appt with the neurologist. She would just tell me “that is the disease”, well, geez willickers! |
Anonymous
| Thank you all |
Anonymous
I'm sorry to hear of the diagnosis. My own experience is that the neurologists were fine for diagnosing, but did little for care and treatment. Part of that is that there is not much to do. The one question I would ask is whether she is eligible for Lequembi, which is the only real alzheimer's medicatin that has shown some promise, but also has a lot of risks. We did not pursue it because my mom was already mid stages at time of diagnosis. The other medications (namenda, aricept) can sometime provide small to moderate improvements, more in slowig the progression of the disease. But honestly, at this point there is not a lot you can do to change the diagnosis or care. What you can, and should do, is start preparing. Get all legal documents in order, start to consider what kind of additional care/help is feasible (in home, assisted livig/memory care). Get wills and such in order. I personally was able to get my mom to reflect on and fill out a "dementia directive" which is like an advanced directive but taking her stage of dementia into account when making medical decisions around care. I got all her financial information and became POA (only after she had been bilked out of a huge amount of money, sadly). Spend time with her now, even as they lose memory they remain emotionally connected and my mom still enjoyed outings, dinner out, music (though she stopped reading), flowers, etc. But also k now that every stage brings new, sad, revelations and just as you get used to one stage and try to adjust to it, the baseline shifts. prognosis is a tough one. Alzheimers tends to progress more slowly than vascular--my mom was dx' with alheimerz, but I am sure she had mixed demenetia, based on how her declines presented. She was diagnosed in the spring of 2023 and by that time she was probably stage 4, she was in assisted living from midd 2022 and managed to stay there fine until the fall of 2024 at which point i was looking into memory care. She had a sudden steep decline in December of 2024 and we had to move her asap to memory care for her safety. She died in November 2025, and was at a mid stage 6 by t hen, but a fall hastened her demise, which is also a blessing in disguise. She knew who I was until the end, but by mid stage 6 had lost nearly all personal history, short term memory and abiity to get dressed, bathe herself, etc. She was still ambulatory and eating, although finger foods, until she fell. She had started to lose language in early 2025, but it was word salad, and had really stopped talking very much by the time she fell. Again, this is one person's time line, and they vary tremendously. My only other piece of advice is that if you place her in memory care eventually (in home was not an option for us because my mom moved away from her house to live near us straight to assisted living), prioritize places with a very good ratio of staff to residents. how a facility looks, its 'fanciness' even the "activities"--none of that matters, what matters is ratio, training and longevity of staff and, if possible, choose a non profit, not a PE owned chain. |
Anonymous
| sorry PP here, I also meant to say that we worked with the geriatric psych at her memory care to find a combination of medications that eased my mom's anxiety while not drugging her completely. Many dementia patients experience significant anxiety (which can present in a host of behaviors) as they grasp (at some level) their deterioration. It is very scary to them. My mom sometimes asked me "what was happening to her." broke my heart. |
Anonymous
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Sorry you are dealing with this. The neurologist we used was Dr. Kalpana Hari Hall. She was fine. I agree that a geriatric psych may actually be more helpful. And take care of yourself too. It sucks.
https://www.neurologycenter.com/professional-staff/physicians/kalpana-hari-hall-md |
Anonymous
| Do you know if she has two copies of the APOE4 gene? |
Anonymous
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Our pcp consults geriatric memory care for us. She says the medications are really only effective for a short time, so it’s best to only use them when really needed- such as transitioning to nursing home, or if combative, etc.
There’s not much anyone can actually do. Just watch and wait. |
Anonymous
| Thank you all. One ApoE3 and one 4 |
Anonymous
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There's not much they can do
Put your energy into next-steps re: where they are going to live. Know their finances and have the legal power |
Anonymous
This. We wasted so much time on going to the best and break through research and it was all pretty useless. One of my parent's friends had success with the best doctor in NYC. So basically, the man ended up at the point where his body aged fasted than his brain deteriorated so it did not help his quality of life-it just prolonged his agony and awareness. Better to focus on the right setting for aging and declining and managing things. |
Anonymous
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Teepa Snow is an excellent resource for managing Alzheimer’s and related dementias.
https://teepasnow.com/ I have spent the last decade working with dementia patients and their families - I’m a lawyer and educator by training and experience but took leave to engage in family caregiving and then stayed on doing it as a professional. I would urge you to look into the recent research establishing the efficacy of a diet and lifestyle approach to slowing the progression of Alzheimer’s. If your loved one is someone who would be open to embracing a whole food plant based diet absent UPFs and refined carbs and sugar, and becoming active and eschewing smoking, alcohol etc. there is strong evidence this approach can slow progression and even improve symptoms in early stages of the disease. https://news.harvard.edu/gazette/story/2024/07/alzheimers-study-finds-diet-lifestyle-changes-yield-improvements/ Neurologist Dr. Sanjay Gupta did a CNN special on this research a couple of years ago that you can probably find online. Here’s a good free resource for families of patients with Alzheimer’s disease: https://www.aanhr.org/documents/resources/alzheimersplaybook.pdf |