Setting my expectations for symptom relief from medicines

Buggytoo

My DH is in early stage 6 Alzheimer's. He has been being treated by a new neurologist for the last six weeks to try to find a combination of prescription medicines that can alleviate his agitation, delusions, and angry outbursts. The doctor has several decades of experience treating people with dementia. So far the different combinations of anti-depressants and anti-psychotics aren't achieving any improvements. What is possible? How many combinations do we need to try? How long does this process take? Am I fooling myself to think my DH could be calm enough so that I can continue to care for him at home in relative peace? Or is that not achievable? I am beginning to fear my expectations are too high.

Crkddy

My DW is late stage. Her agitation was very bad a year ago. Hospice came in and started her on ativan. She continued to take zoloft and ambien with the ativan. Her overall demeanor improved and hospice discharged her after 9 months. Her demeanor is still good and I am currently taking care of her at home. Have since stopped the ambien. We tried all of the usual drugs, but the ativan provided the best results for her. Every case is different. She also is still on aricept and namenda.

wizmo

DW age 59 started having increasing agitation about 9 months ago entering stage 6. Already on venlafaxine antidepressant, seroquel was first option for anti anxiety, and it helped for a while but didn’t last - constant dosage increases every 6-8 weeks. It didn’t really solve the problem. As things got worse I just couldn’t meet her needs and went for placement in MC which lasted all of one day before they said psych ward was the only way to get full time supervision and quick adjustments to meds. They increased seroquel multiple times and added depakote, also starting low and increasing to find effective dosage. She is still there after 3 weeks but starting to stabilize. Pretty sure in our case I would not have been able to navigate these adjustments at home. Everyone is different. Keep in touch with your medical team frequently, there is usually a solution and can take time to get there.

M1

Hi Buggytoo, i agree that hospitalization may be your best option, have you discussed this with the neurologist?

Iris L.

Psychiatric medications must be titrated up slowly to find the right dosage. This can take several weeks. Inpatient care is a good idea.

Iris

harshedbuzz

I would suggest a geriatric psychiatrist over a neurologist for medication management. Neurologists are the experts in dementia, but gerispsychs are the specialists most familiar with how psychoactive medications impact the elderly and those with dementia. Dad's neurologist was willing to prescribe Seroquel, but his geripsychs created a cocktail of meds to relieve his anxiety with lower doses with fewer side effects.

If he's a risk to you or himself, that management might best be done in-patient.

These meds are typically prescribed in a low and slow manner to avoid side effects and paradoxical activation. This is complicated by the fact that the atypical antipsychotics can take quite some time to see the full effects. Generally, you might see drowsiness initially, some improvement around 3 weeks and a complete response by 6 weeks out. The SSRIs should show some improvement by 4-6 weeks but it could be a few months to see a full effect. Ideally, you want to trial one med at a time.

HB

housefinch

I’d get a geriatric psychiatrist involved now. That’s the best trained specialist to try to avoid hospitalization. You might not be able to, though.

jfkoc

ditto the geriatric pshchiatrist...

Buggytoo

Thank you all for your timely input. Last night the outburst and delusions were so out of control that I called 911 and my DH was taken to the hospital literally kicking and screaming in an ambulance. I said I couldn't take him home like this and he was admitted for a psych eval. So far the attention has been extremely thorough, attentive, and kind. I am hopeful we can find a new drug regimen that will ease his troubled mind.

harshedbuzz

Strong work on your part. I hope they are able to relieve his distress quickly.
HB

ImMaggieMae

Buggytoo, everyone is different, but in our case my DH is living at home in “relative peace” in late stage 6. He was diagnosed with FTD/Alz. He had never been aggressive, just highly agitated, awake for hours on end in the mid stages. A hospital psychiatrist/pharmacist set his medications during a week long stay after a trip to ER a few years ago. He was prescribed Risperidone which was like a wonder drug for him. He also takes Nemanda which seems to help. He takes Gabapentin for peripheral neuropathy in his legs which also makes him sleepy and keeps him asleep at night. We’ve since discovered that it can also often help with sundowning in small amounts.

When we were finally able to get into a neurologist after more than 8 months of waiting for an appointment, he concurred with the medications, after many tests, CT scans and pet scans. We have had occasional small increases to the Risperidone but it keeps him mostly calm other than sundowning agitation which sounds mild to me compared to some stories I read here. He is up and awake all day and sleeps soundly all night. He doesn’t have any hallucinations that I am aware of. He doesn’t talk a lot anymore and when he does, it’s whispering. He doesn’t usually initiate conversations but will usually answer questions. He needs to be watched 24/7 but I plan to keep him at home for the duration.

FTDCaregiver1

Buggytoo - DW has been battling agitation/FTD going on 7 years, 4 separate mental health stays with poor results. Reading the above, my advice, if you're doing home care, consider keeping him home (if its safe) but educate yourself on the proposed drugs, side effects/reactions before trial, chart it (I use an excel spreadsheet). You know your DH better than anyone, and once educated, you'll find the right questions to ask and note symptoms when they appear. The Geripsych suggestion is good advice, even better would be to use the same one moving forward if you assess they are good. Not going to give you the horror stories I experienced (paradoxical reactions, adverse reactions) all of which were not caught by the no less than 4 MH facilities and, at least in our experience, these stays were harsh on DW, my experience is they are not dementia friendly. Can't stress enough to educate yourself on the pharmacology of these drugs. When talking to my Geripsych now via tele-med, she's asking me on past drug histories, reactions. Wouldn't count on past providers sharing accurate information, especially across provider networks. We've gone through several classes of drugs battling anxiety over the years (yelling, hitting, hyperkinesis), many mentioned above by others. As of today, she's on a combination of Depakote, Buspar and most recently Rixulti, the last of which was scaled up to the correct dose, like Depakote, over time and has had good effect in arresting anxiety without noticeable side effects that I reported back. When she just can't sleep at night, we opted for Ambien, so I use it as a last resort and chart it as its addictive and she's paradoxial to Benzos such as Ativan. As others have stated, each person is different in terms of pharmacology affect so detailed work is necessary for each case, including a good set of educated eyes on observing their affect. Once you get a good Geripsych, keep them and advocate for regular visits, just to check in, exchange information, adjust medications. You should have a number to call if things go badly at home. This disease is dynamic, its hell catching up to it when changes occur, and they will, so it's best to have a good professional on hand who knows your DH's case history to quickly put out future fires. Finally, pharmacology is certainly a large part of arresting destructive behaviors but when coupled with good behavioral intervention by you and hopefully some caregivers will go a long way in managing symptoms safely perhaps through redirection and/or co-escalation. Good luck.