Further discussion with DH Mild Cognitive Impairment

justbreathe2

A few weeks ago, I posted my DH was showing jealousy, anger, shadowy me, some sexual remarks. Within that time I wrote a note to Neurologist asking him what to do. My DH is on Donepezil 5 mg. We don’t see neurologist again until Feb. 1st and he has been no help whatsoever. I thought he would call me to discuss, but yesterday I get this note from him “Increase the Donepezil to 10 mg daily. These behaviors are expected. If DH becomes paranoid or behavior changes then I would have to get opinion from psychiatrist through are PCP. “

My DH behavior lasted 4 days and now he has been back to his normal self…caring, he can take care of his self, daily chores, but his memory is bad and repetition. Still likes to bring me coffee each a.m. and is helpful. I know these behaviors may come and go but I am so afraid that I may do or not do the right things for him.

My DH has not been diagnosed yet the doctor speaks as if he is. I have done my reading on this medication and I need more discussion with him. There are side affects and that I don’t want to worry about.

Been having one of my down days. It is so frustrating and hurtful I cannot get more help.

Do any of you have any experience with using Donepezil? Thanks for your any thoughts.

Marta

What you are experiencing is par for the course. The best place to get information regarding MCI/dementia is right here - collectively the people on this site have had experience with just about any issue that might come up.

Every medication has side effects. You are doing the right thing by educating yourself. As with any med, the benefits should be weighed against the risks.

if you have further questions about donepezil, please post here, or go to the top of the page, hit the search 🔍 button, and type in donepezil.

housefinch

These behaviors sound like those of someone who has already progressed from MCI into dementia, I’m sorry to say. I am saying that so maybe you can cautiously prepare yourself mentally for that possibility at your next appointment. Of course, no one here can say that for sure. However, those behaviors are pretty standard for dementia unless they find something was a medical cause that temporarily impaired him.

Marta

Tagging on to what Housefinch said: donepezil is approved for mild, moderate, and severe Alzheimer’s. By prescribing this medication for your husband, the neurologist has let the cat out of the bag: your DH is beyond MCI. Many physicians delay giving the dementia diagnosis, for a whole list of reasons. One example- once the diagnosis of dementia is in the chart there are legal and financial repercussions. If he drives and causes harm, a known diagnosis of dementia could cause an insurer to disclaim. Long term care insurance would likely be extremely expensive.

You should probably proceed as if the dementia diagnosis already exists. If you need that in writing, perhaps for disability claims, you should press the neurologist.

Joydean

My dh has been on donepezil for over 4 years. It did help in the beginning but I can’t tell that it does anything now. But I was grateful for the time it did. The benefits outweigh the side effects. Best of luck to you and your dh.

justbreathe2

Thank you for your comments.

My question is about increasing the dosage from 5 to 10 mg that doctor suggestion. What I read .5 mg is for mild to moderate Alz and .10 mg for moderate to severe Alz and should be under doctor’s care when change or stopping this drug. He is not diagnosed, but think he could be EO or mild stage. Since the doctor is not giving me the help I need, I do not feel good about increasing without some direction from the doctor.

M1

Justbreathe, the donepezil (generic for Aricept) is unlikely to have any effect on the problem behaviors you described. Even without a diagnosis, sounds like this neurologist is signaling to you that he's not going to be much help. I would talk to your primary care doctor about getting a referral to a geriatric psychiatrist. He is likely going to need antianxiety and potentially antipsychotic medications for the behaviors.

Jgirl57

Just breathe 2; My HWD/Alz did much better when he increased to the 10 dosage. He was started on the donepazil while we were waiting for other tests to be completed but the neuro originally gave the mention of MCI. He now has the diagnosis of Alzheimer’s after the lumbar puncture was completed . He did not do well on the Namenda and remains on the donepazil and also Zoloft for anxiety/depression . It is very hard to be around the mood changes.

Denise1847

My DH has been on Donepezil for 5 years without side effects. Frankly, we have had more help from our PCP than any specialist.

Caro_Lynne

I second what M1 said, get him to a geriatric psychiatrist. They will be able to prescribe and adjust needed medication according to behaviors. I would have never thought of taking him to geri psyche if it were not for reading the many posts in this group.

storycrafter

I won't go into our story, but M1's advice is spot on according to our experience.

I'll mention that my husband had a reaction of strong nausea to the larger dose of donezepil, but does okay at a lower dose. The low dose helps a little.

I believe it's the antipsychotic meds helping my dh the most at this time. It was originally prescribed by our family doctor to tide dh over for a couple weeks until we could get in to see the psychiatrist. The psychiatrist was most helpful in getting dh's meds adjusted correctly for his situation.

In my experience, it's often difficult to get the dementia diagnosis in its early phases. For varied reasons it's often a very tough one for anyone, including professionals, to actually Name. (Unfortunately this can make it much more difficult for the caregiver and PWD in important ways.)

Be persistent until you find the support and treatment needed. We'll help cheer you on as you put one foot in front of the other. It's worth the effort and you have my best wishes. Let us know how it goes.

Quilting brings calm

My mom is technically diagnosed with MCI. She scores high on the MMSE 10 minute test so I can’t get the nurse practitioner at the memory clinic to say she’s mild dementia - but I’m sure she is. She started on the 5 mg Donepezil about 18 months ago. The NP moved her up to 10 mg in May this year. Unfortunately Mom had bowel issues at 10 Mg and we had to drop the dosage back down. I can tell a decline cognitively as a result of dropping the dosage back down. The NP feels 10 mg is the therapeutic dosage but that 5 mg is better than none.

Ed1937

Any medication can have side effects, but donepezil is a very common medication. If it was a medication that had a strong history of bad side effects, I doubt it would be used so much. If it makes you feel any better, much of the information you received above came from doctors or other members of the medical community. Yes, side effects are possible, but the pros outweigh the cons until proven otherwise.

JC5

“referral to a geriatric psychiatrist”

I’ve been taking my DH to the neurologist for the past 3 years. I too feel I’m in the dark. Never thought about taking him to a geriatric psychiatrist. Do they work with the neurologist in prescribing medication, recommending care options etc. ? His neurologist does that 2 minute test - tell me the 3 words, draw a clock, what day month is it, touch your nose then mine back and forth. See you in 4 months! What does a geriatric psychologist do? Interested

jfkoc

Ditto to M1.

You need a team with the best possible players that work with you!

And good for you for being such an attentive advocate.

sandwichone123

I hear you saying that your spouse is not diagnosed, but I suggest you get a copy of the medical record. You may be surprised by what is written that you have not been informed of.

SDianeL

https://alzconnected.org/discussion/comment/186214#Comment_186214

My DH was diagnosed 2 years ago at the VA by a Neurologist who looked at the CT Scan & a Neuro Psychologist who did the 3 hour eval. The Neurologist prescribed Risperidone low dose at night and when it didn't help much, she referred him to a Geriatric Psychiatrist who she said could better manage anti psychotic medications. The Geriatric Psychiatrist is wonderful. She responds quickly, answers questions and adjusts medication as needed. She added Risperidone in the AM which seems to have helped & he's sleeping better. When he became depressed, she added Mirtazapine which was a nightmare. She quickly responded and took him off of it. She said if he continues to be depressed she will try something else. Of all the doctors, his PCP and the Geri Psyche docs have been the best.

SDianeL

something that will help you get them to a diagnosis: Request a referral to a Neuro Psychologist for the 3 hour eval. Make a list of his behaviors. All of them. Be specific. The list of behaviors I sent his doctors caused them to change my DH's diagnosis. He can't have an MRI so they weren't sure what type. They said Dementia probably Vascular but after I sent the list of behaviors they looked at the CT Scan again and changed it to Alzheimer's-Posterior Cortical Atrophy which a rare form of ALZ that affects visual perception. Had I not kept a list of his behaviors I wouldn't know how to deal with his vision issues. Once you make the list of his behaviors, demand an eval and diagnosis. That's what I did. Keep us posted. Here's a handout that someone else posted here that I use as a checklist to communicate with his caregivers. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Caro_Lynne

JC5, in my LO's case, the geriatric psychiatrist was the one to get him on correct meds for mode, agitation, and generally my being able to deal with his behaviors. He sees him monthly, assesses him and we go over what meds are working and if needed, adjusts them. He has been a sanity saver!

My experience with his neurologist was pretty much the same as yours; he would ask him questions; see you in six months. He served his purpose in getting MRI and initially started him on meds. I am so thankful I found a great geri psyche.

In my case the geri psyche and neurologist do not work together on meds. I mean I update the neurologist via patient portal but he has not input on meds. I hope this helps and highly suggest you find a geri psyche.

Iris L.

QBC, why do you want the NP to say your mom has early dementia? She is on meds and you already know what to do. You already know that doctors are reluctant to say the word "Alzheimer's ". Is there something you are waiting for, such as activating a springing POA?

Iris

Despondent

Dear just breathe 2, My DH was diagnosed with MCI almost 3 yrs ago by a short verbal, written test given by our PCP. I requested this because I had recognized symptoms for at least 2 years prior. My father and grandmother both had ALZ. The PCP said I will not prescribe meds because they don't work. OK. A year passes my DH is getting worse so I start looking for a neurologist. My insurance doesn't require referrals but every neurologist I called wanted one. So I contacted PCP. He wouldn't give referral w/o seeing DH. He prescribes Donepezil at 5 mg. to be increased to 10mg., one wk. later with disclaimer as we are leaving that these drugs don't work. Well to my utter amazement I start noticing improvement in about 3 days. I increase it to 10mg. in a week per PCP's orders. Within a few days, my DH starts complaining of a severe stomach ache and headache. These are common side effects and most people stop drug because of this. We went to an Urgent Care because of it being a Holiday weekend. Dr does thorough work-up but finds no cause of complaints. I purposefully did not mention drug increase to Dr. because I do not want a diagnosis based on a "could be". I decided to reduce dosage to 5mg for DH and notified PCP of my decision and reason. I later find out that the increase in Donepezil should not have been done any sooner than a month not a week. My DH holds steady for 6 mos. until we see Neurologist. He orders Contrast Cat Scan and blood work. He starts my husband on Memantine 10mg twice daily. This does help for about 9 mos. but my DH's memory starts to fade. I know these drugs work for a limited time and am discouraged, but this is the disease. We have appt. with neurologist 3 mos. later. I mention memory failure and he decides to increase Donepezil to 10 mg with the assumption that with all this time, previous side effects would not manifest. They didn't. As happened initially, I notice memory improvement in a few days. I am delighted. About 3 weeks later, we have an argument. He leaves the house but he usually goes to garage or shed where he has a lot of tools. A short time later, neighbor calls and tells me she sees my husband leaving town walking on a busy road. She talked to him. He seemed flustered. She offered a ride but he declined. I thank them and head out to pick up my husband. He is outside town, having crossed a relatively busy 4 lane. I see him on the other side but must wait for traffic light. He sees me and takes off in a direction to get away from me. This game plays out once more before I call 911 for assistance. He has disappeared. I believed he crossed into someone's back yard. Police arrive and I explain situation. Officer had seen my husband but than he didn't, so he leaves and finds my husband. My husband walked back home with me following. Boy, did I ramble. I emailed neurologist. Get return email telling me to contact PCP or psychiatrist. Did both. PCP is returning emails as I am writing them and arranges an appt next day. I see a psychiatrist for medication management. I have been on controlled substances for several years. I email him. Yes, he will see DH but I must make an appt for a work-up. That is in 2 days. He and his staff spend more time with my DH then neurologist in 3 visits total. Psychiatrist explains that behavioral issues are developing with time but memory loss prevents these being acted out. So DH went back to 5mg. Donepezil. Memory starts to fade but so does the psychotic behavior. He later said he was going to commit suicide by running out in front of a truck. Psychiatrist is not a geriatric psych. But I cancelled next appt. with neurologist who was of no help. Psych sees husband every 3 mos. with the condition that I should contact him if something develops and he will see him sooner. Get the right Dr. and support staff. Someone who cares. These drugs can be great or not.

justbreathe2

https://alzconnected.org/discussion/66806/further-discussion-with-dh-mild-cognitive-impairment

Thank you all! Since I was not getting much help from our Neurologist, I sent my DH primary care doctor a note about increasing the dosage Donepezil to 10 mg and inquiring about a geriatric psychiatrist. He said to increase the dosage until we see him in December. If my DH is still struggling he will refer me to geriatric psychiatrist at the December appointment.

So my DH is on Day 3 of the increased Donepezil. He was in good mood this a.m. but looks tired, confused at times.

I expect it will take maybe several weeks until I see, if any, improvements or changes in my DH?