Do local assisted living offer monthly alzheimers support meetings? I attended with a friend for about a year, we went to a couple facilities, and you will learn a lot about your mother’s options, and helpful to get glimpse into other resident’s relatives who attend. Extremely helpful.
@SouthJerseyChessMom - I can’t imagine a physician not checking a urine and a white blood cell count to rule out infection. Why would you assume otherwise! I have 2 parents with dementia. I see no reason for a neurological consult for either. There are no useful treatments. The primary care physician is in a better position to wean her off the anxiety and pain medications while monitoring for side-effects of the medications. Of course I do the monitoring as well. You don’t need a neurologist to tell another physician that anti-anxiety medications such as benzodiazepines should not be used for patients with dementia.
Full disclosure, I am a primary care Nurse Practitioner and would certainly check for B12 (not covered btw with Medicare), chemistry panel, urine, white and red blood cell count, thyroid, and Vitamin D (also not typically covered). Sometimes I get an MRI if sudden onset or I suspect vascular causes. I wean off benzos, pain meds, anti-cholinergics and dc statins (cholesterol meds) and patient is usually left with just blood pressure medications. More often than not (patients under the age of 80 always) I refer to neurology without any change in treatment plan or additional testing. Probably not a good use of resources.
The point may be to confirm what has been tested. And learn about the meds she’s currently on, side effects and interactions. This may not be so much about changing the course of actual dementia/Alzheimers as double checking whether or not that’s what it is and those meds are indicated. Or some other course of action.
An we know many docs do react in a knee-jerk sort of way.
The neuro my mother was referred to did an in-depth review of her medical history, in particular the past year, ran all the tests, and did the diagnosis. Since her PCP was paper and parcel of the hospitalizations, meds, and so on, it was very helpful to have the impartial outsider make the call.
He diagnosed dementia, but not altzheimers. Prescribed meds (which had to be changed), talked her and the family through the paperwork of medical intervention or not and progression and what she wants to do with her (coherent) time remaining. It brought us peace of mind. When the time comes, he will guide us through the reduction of the meds she’s on (BP, anxiety, depression, reflux, OTC) to ensure the stuff isn’t doing more harm than good. He’s also head of in-patient palliative care at the hospital, so understands end of life concerns.
It is the right choice for us.
This is purely anecdotal, but my grandmother’s PCP (who did focus on the elderly) decided she needed early Rx intervention. The meds caused what I believe were triggers to her end of life ailments. In hospital, they did a further level of tests and determined she was experiencing “age related senility,” a somewhat normal part of aging, not dementia or Alzheimers. She was taken off those meds, but a cycle had begun. It was only much later that I made the connection.
Now sure, we have to weigh benefits and risks. And we don’t always know, with certainty, what’s up. But with a new diagnosis, I now think I would do the double checking.
@gtalum your parents are very lucky to have you as an advocate for them.
At the conference I attended a John’s Hopkins psychiatrist ( director of a facility) emphasized the detrimental effects of benzodiazepines and anti psychotics.
I got the impression he encounters them prescribed often.
You sound like a very thorough medically trained professional
But, I would want an expert Deaing with whatever medical condition my mom has.
Dementia is a constantly changing journey and I would want neurologist involved.
Interesting that you encourage discontinuing statins. May I ask you do you find a difference between the lipophic vs hydrophilic side effects ? I recently read an article about the lipophic statins more likely crossing the blood brain barrier. I’m curious about these widely prescribed drugs- had I listened to my nurse practioner I would still be taking Crestor ( took for two months) until cardiologist said my risk was so low he discontinued right away. I was glad I requested a specialist.
In no way am I suggesting you are like my nurse practioner - in fact you sound very professional.
Just another reason why I would go to specialist.
I’m not saying not to double check, but if you are not at the visit, you can’t just call and say “do more tests” when possibly all the tests have been done.
A couple years ago my mom needed an MRI, follow up from her benign brain tumor in 1994-
Family practitioner said an open MRI was ok- she presented the results to her neurologist who said test was worthless for imaging purposes she needed. Oh well, she opted not to go through that test again.
@SouthJerseyChessMom We often change between lipophilic and hydrophilic drugs based on tolerability (mostly muscle pain). Sometimes someone is sensitive to one and not the other. But, both have anecdotal reports of cognitive deficits. I discontinue them 1) due to the anecdotal reports of cognitive impairment and 2) they are largely unnecessary for an 80 plus year old individual. They are good at preventing cardiovascular events “down the road,” not when you are 80. Avoiding polypharmacy when there are cognitive deficits are so important. It was the first medication I asked my mom’s gerontologist to take her off of. She brightened up a lot 2 weeks later. It’s hard for my parents to remember to take meds and if they had lots of medications, it would require a person monitoring which puts a lot of stress on the elder and the caregiver. I use something called the ASCVD calculator when I recommend a statin. It’s standard of care and prevents the knee jerk “cholesterol is high you must take a statin” without considering risk factors.
@GTalum thanks for that overview, again, your parents are lucky to have you assisting them!
Thanks everyone. She is 69. Regarding how long she’s been having memory issues, it’s probably a couple of years since we started noticing issues, but doc thought stress and other circumstances likely contributed. Last year she got below 100 pounds, and had some other issues, so we became very worried. But now other things have become more stable, so we can focus more on her memory. Turns out he is sending her to a neurologist and having some other tests performed.
GTalum, can you elaborate on the ASCVD calculator for statins?
Here’s a link to the calculator.
@1214mom. , the referral and work up sound appropriate. There are a lot of factors here and she is relatively young.
@1214mom certainly with your mom’s young age, she should see a neurologist.
Thanks. She will be seeing a neurologist soon. I am considering flying to be with her during the appointment, but it kind of depends on other things going on in life.
Recently I had a doctors appointment I really needed H to be there to help decide things. I put my cell speaker phone on with the doctor who agreed to do so and we discussed my case. It really was pretty good.
@1214mom you probably are listed on your mom’s insurance as an authorized medical representative, but if not, I would encourage you to do this. It’s an easy process. This allows you to set up online accounts to view her lab results, and to speak to drs on her behalf.
@1214mom - It is also good to be sure Dr/s have list of all current medications, with dosages to review. A call ahead of the appointment can also help with preparing the Dr with current concerns and questions if any are awkward for you to bring up in front of your mother (would also help if you are not able to go). Additionally, have health care proxy forms or release of information forms on file at all Dr’s offices and any hospitals where she is treated or seen as others have mentioned. Does your mother display poor judgment as well as memory loss? Does anyone know for sure what meds she is taking consistently now? The list you posted is quite extensive and contains many drugs that may impact her cognition individually, as well as have possible interactions between them. It may be a function of seeing multiple docs who over time who have each addressed the presenting complaint of the visit, but not necessarily had access to her full health history and accurate accounting of her medication. It also may be that this is the best regimen possible for her. A neurologist should be of help and geriatric psychopharmacology expertise could also come into play with that list. Older people may process many medications differently than younger people. My mother, who had no dementia, could not tolerate many pain or neuro active meds without confusion and finding the right ones made a huge difference.
Once you are clearer as to her neuro status and current baseline of functioning, it will help you decide where she is best served. I understand why you would consider moving her to be near you; at some point as it will matter more to her to have a close and reliable family member than to stay where she has been living. It will also make your life more manageable and reduce crisis moments, especially as the status of her BIL/SIL could impact her, too. Twelve years ago, I moved my parents from their home 3 hours from us (area where they had lived forever), to be near to DH and I as caregivers. In my observation, everyone is starting fresh in a new environment (in their case, initially assisted living at a continuing care community, then increase in care level for surviving spouse), and community connections in their home town dwindled as others health failed also. My mother was newly diagnosed with a terminal illness 6 weeks after they moved here. I was happy for the 16 months we were able to share and how I could readily help with support and logistics. Did not expect father with dementia to live until almost 92, and I continue to tend his needs. He is now in skilled nursing memory care. YMMV.
All the best. Sorting out the best way forward can take time and patience. You are asking good questions and she is lucky to have your help.
I am curious how to go about finding a geriatric pharmacologist. If I google that specialty in my parents’ county, I don’t get any hits. It’s not listed as a specialty on the healthgrades website. I must be doing something wrong.