Buspar and Caregiver Anxiety!

brupt30 · May 16

My DH is participating in an annual memory evaluation study through the Alzheimer's Disease Research Center (ADRC). After a thorough evaluation, the team diagnosed him with Alzheimer's and had several useful recommendations about diet, exercise, etc. They also highly recommended that my DH stop taking Lorazepam and start taking Buspirone (Buspar) instead for his anxiety and depression. Our primary care doc then prescribed Buspar and DH has successfully transitioned to it.

The neurologist that DH has been seeing for 1-1/2 years had diagnosed him with "amnestic mild cognitive impairment" and has never spent more than 5 minutes with him in our quarterly visits after the initial 30 minute evaluation. We went to see him yesterday for the regularly scheduled visit and I shared with him the findings from the ADRC team. It became clear that he did not understand that the ADRC research does not supplant our regular medical team - they do not actually treat any of the patients; they just offer annual evaluations as part of their own research and give patients a high level summary of their findings. The doctor became very agitated and rude since apparently he felt that I was questioning his approach (which I suppose I was…). He exclaimed that Buspar will make my DH worse and also felt that the test methods that the ADRC described in their summary letter are no longer acceptable in practice. While I know that this guy gets very defensive sometimes, I was really shocked at his demeanor yesterday.

So..the appointment confirmed my gut feeling that we need to change neurologists. DH takes a lot of medications which are currently managed through our wonderful PCP, who is a gerontologist, but we will probably move to a neuro psych specialist in the near future.

This is a long venting post, but mostly I wanted to ask others if they know of any issues with Buspar. That is the most worrisome issue from the difficult meeting that shook my overall confidence as a caregiver.

If others are not familiar with the ADRC, The National Institute on Aging (NIA) funds over 35 federally designated Alzheimer's Disease Research Centers (ADRCs) across the U.S. I'm quite proud of my husband for participating and wanting to "give back" to this organization to try to find better treatments and possibly a cure some day! They make it very clear that they are not replacing a patient's own care team and are somewhat reluctant to share all of their own detailed data since it is purely for their own research purposes. However, members of the evaluation team are incredibly compassionate and the social worker offers their support for me to call and discuss issues on an ongoing basis. Their approach has really helped me and my family come to terms with some of the realities of the disease and work together to plan for the future.

Biggles · May 16

Everybody views this awful disease differently but I decided a couple of years ago, even though it won't help mankind, that my DH would not be used as a guinea pig for research. If nothing tangible was available then I would protect my DH and myself from many doctors and institutes that were feathering their own cause.

So sorry to be so blunt but protection, kindness and love are very high on my agenda for my beloved DH. I do wish you good luck.

brupt30 · May 16

https://alzconnected.org/discussion/comment/272512#Comment_272512

Yes, I totally understand and appreciate your honesty….I actually did initially have mixed feelings about DH participating, but found that he was really motivated to get involved since the program is offered through the university that he graduated from and he found some meaning in it.

Lethe · May 16

My DH is also participating in two research studies. I think as an academic himself this was a way to feel like he’s still contributing to something meaningful.

tucson anne · May 16

My husband has been in the ADRC study for more than 20 years. Originally he was not in the participants who had Alzheimers—his professional colleague roped him into it as, I assume, a control. When the colleague, who was a neurologist, agreed to see him as a patient because my DH was complaining of memory issues (around 2016), the doctor pointed to his scores on the battery of ADRC test to say there was nothing wrong with him. Only when his scores started to slip and he had issues with executive functioning as well as memory was he diagnosed with MCI. After a few more years of participating, we agreed that the testing had become too stressful and he ended his formal participation with the PET scans for amyloid and tau, getting a definitive diagnosis of Alzheimer's. He was glad to have contributed to the study data all those years, and it will end with a brain biopsy after death. There is a huge amount of data to be learned from the brains of the study participants. Without people to participate in studies, there will be no progress in Alzheimer's treatment. And lastly, one friend of mine, after her husband's diagnosis, decided to particpate in the study herself, now getting the yearly tests! Most major academic centers probably participate so sign yourself up! p.s. I haven't—not sure I want to know about my own declining abilities.)

persevere · May 16

I’m not familiar with the ADRC. I’m sure it’s a well respected organization but on the surface I’d want more concrete verification of the diagnosis than just participation in a study if I’m understanding you. My wife was diagnosed at the Mayo Clinic using a lumbar puncture as the main test. She was diagnosed in 2019 and is currently well into stage 7. We just recently started using busbar as recommended by hospice. I have to say it has helped. But she is on several medications and this is just one of them. But we are seeing a noticeable improvement. And we did try lorazepam at one point and it was not good.

harshedbuzz · May 16

@brupt30

I think it's a valuable thing you and your DH are doing by participating in the ADRC study. My mom participated in one that was designed to create a quick but more comprehensive screening (including some physical aspects) for docs and NPs to use in a PC setting; it was very informative. And if she could help going forward, why not?

Based on what you've written, I'd absolutely find a new neurologist. A full evaluation should include imaging studies, blood tests and cognitive testing that usually spans at least 3 appointments with the last being a chance to discuss the diagnosis and care plan. IME, once we had the firm diagnosis, the geripsych became more important to dad's care than neurology was.

I seriously side-eye the use of benzos for anything other than a temporary situational situation. This is especially true in older folks. They're more susceptible to side effects and can have a 50-80% higher risk of fracture from falls. Lorazepam can be addictive and also require higher doses to maintain efficacy over time.

Buspar is a safer option.

HB

Buspar and Caregiver Anxiety!

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