Anyone have experience treating vascular dementia with Donepezil?

OESPUPS2

Whew - finally found my way back to this board and figured out how to start a post.

My wife was just diagnosed with severe angiopathy, vascular dementia. This explains so much of what has been happening with her (memory loss, confusion, mobility degradation, hallucinations, incontinence, slurring her words especially in the morning, etc...). Finally saw a neurologist, after a long wait, and he would like her to have a PET MRI, and MRA's of the brain and neck, and said that this was to rule out other degenerative processes. And then pending the test results, starting her on Donepezil. Does anyone have experience with this medication? Going for the tests, enduring the tests, will be a hardship for her.

My wife showed signs perhaps 6 years ago, but it was after a severe fall last November that she went downhill quickly. She no longer reads or plays the piano. Her mobility has declined so much that she uses a walker indoors, I take her to medical appointments in a wheelchair, and she can barely stand long enough to brush her teeth. I had thought her mobility issues were due to severe osteoarthritis in the knees, but that is only a part of it. Totally incontinent now, and she uses the Purewick external catheter almost exclusively. She has been diagnosed with an autoimmune skin disease (Boulles Pemphigoid) after breaking out in blisters all over her legs, and elsewhere... She has lost over 40 lbs since last December, and it is a struggle to get her to eat and be hydrated. She has been miserable, and of course does not understand what is happening with her body.

She has been in the ER 3 times in the last month and a half, hospitalized once for a blood infection. Multiple UTIs.

I am really running very low as I get very little sleep (3 hours last night) - I need to help her with bathrooming, putting on lotion for her itching, and who can sleep when she is very loudly vocal with hallucinations most of the night. I really don't know how to sustain this...

We have been snowbirds and I am hoping that we can travel south late next month - we have an internal medicine doctor there who is compassionate and will take care of us. Hoping that she can get us set up with palliative/hospice care once we get there. Praying that my wife stays stable long enough to go on the journey.

It is so freaking hard! Any suggestions, advice, shared experiences would be greatly appreciated!

housefinch

Gosh, that sounds very challenging. I may be insufficiently informed about all the medical issues. I am wondering how someone with her medical situation would travel on a regular flight. Do you have a doctor where you currently live? I am wondering if you should remain there and get your local PCP’s opinion on a hospice/palliative care consult now. I hope you are able to get some support and answers. @M1 @Marta might also have suggestions

OESPUPS2

Thank you housefinch! I am fretting about the benefit of this medication versus the distress the tests will cause her. Unfortunately I have not been able to get palliative care where we are now, we do not have a primary care doctor here. The southern doctor would order it for here, but I can't even find an agency that has the capacity for in home palliative care. I'd like to start with palliative rather than hospice care. We would not fly - a friend will drive us in a minivan. This is stressful too - but I know that she will get great care once there.

This is the most challenging thing I've ever had to go through, for sure. Neither of us has family, but we do have a few friends down south...

Thank you, and be well!

Marta

Yes. Donepezil is used in VD and can significantly improve cognition for a time.

If you’re thinking about palliative care, you would NOT be doing the extensive testing that you mentioned.

Given the frequent ER visits, I strongly advise you to get a local PCP as your DW is likely to have more medical urgencies before you can get her down south. I can’t imagine she would do well on a multi day van ride.

Can you get some in-home help so you can sleep? You’re likely to crash in the next few weeks.

How old is your DW?

I’m so sorry for what has happened.

OESPUPS2

Thank you so much Marta! I am thinking if the benefits outweigh the stress of the tests, and the potential side effects, we should proceed, and may not need the palliative care. I am 68 years old, my DW is 83.

The stress of making this decision is also keeping me from sleep - and yes, I'll need some in home help soon.

We have no family, and no friends here who can help (they all work long hours). Down south I'll have a caring doctor 5 minutes away, and friends who can take care of our pets should DW need to be hospitalized... Also to visit and give us both some social interaction. But of course, if DW has a new medical emergency and is not stable, we'll not make the trip.

Thank you again!

Iris L.

Consider consultation with a registered dietician regarding a diet and nutritional supplements for a person with recent severe weight loss and autoimmune condition. For example, Boost and Ensure offer high protein drinks, but they usually must be ordered, not found in local markets.

Iris

housefinch

@Jo C. might have insight too. I was concerned after reading your post that you could be facing a medical crisis en route trying to drive to your winter home with your wife. I was worried she could need medical transportation to get there. Of course, I don’t know the details. I hope you find some useful advice here. I’m sorry you and your wife are facing this.

M1

The downside of donepezil (that's the generic for Aricept) is that it has lots of GI side effects that may outweigh any benefits. If she's as advanced as you say, I wouldn't hold out hope that it will do much. You can always try, with a low threshold to back off. I personally think your idea of palliative care is probably more appropriate, and the advanced testing may also be way too late. Unfortunately the neurologists don't have a whole lot to offer here. Sounds like the best plan would be to get her to where you plan to stay and if that's south, so be it---days of going back and forth are probably behind you as that will be disruptive to her.

Pat6177

My DH has mixed dementia - Alzheimer’s and vascular. He was diagnosed by a neuropsychologist who administered the battery of tests. And he had had a CAT scan of the brain within a year of the testing and that report was used. There was no PET scan or MRI. He was probably stage 4 when he was diagnosed. He’s stage 5 now. Once diagnosed, his PCP ordered the Donepezil.

My understanding is that Donepezil is for the earlier stages and Memantine is for the moderate stages. Both are to slow the progression, they are not a cure. Drs never like to stop the meds since some PWDs will have a drop in function. The Donepezil caused dreams that my DH described as “vivid” and “surreal “. Not scary but “disturbing”. The dementia dr he started seeing suggested that he take the Donepezil in the am. This has helped enough to allow him to continue with the Donepezil. I can’t say I saw any improvement with the Donepezil. I think there was some improvement with the memantine but it’s hard to tell.

You might want to go to drugs.com and look at the side effects of Donepezil. The dreams are a common side effect and I wonder if that would make the hallucinations worse? As M1 said, there are a lot of stomach issues and weight loss. With your DW’s recent weight loss, I’m surprised the neurologist is willing to order the Donepezil.

Keep in mind that dementia is a progressive, terminal disease. There is no cure. What other degenerative diseases would the neurologist be looking for and are there treatments? Just my opinion, but I would think long and hard about putting your DW through the tests. Drs always like more data and tests especially since that reduces the risk of being accused of any malpractice.

Again, just my opinion. Your DW needs meds for the hallucinations and difficulties sleeping more than Donepezil.

if you are committed to going south, don’t wait. Go as soon as possible. If you can afford it, bring along an experienced dementia care aid or perhaps even an RN. Or medical transport. How many days travel will it be? Have you checked where hospitals are on the route you’ll be taking? Go ahead and make an appt with your PCP down south so that you can get things started ASAP. I’m not sure why you prefer to start with palliative care. Though I have not been through having a LO in hospice, from what I have read here, significant weight loss may qualify your DW for hospice care. And my understanding is that Medicare will pay for hospice care but they will not pay for palliative care. As Marta indicated, if your DW is on either palliative care or hospice care, they won’t be doing all those diagnostic tests.

Where is your permanent home? If it’s not down south, then your DW might be disoriented by the trip and then being in a strange place. This may make her dementia symptoms worse. Just going for a dr appt now will upset my DH and cause his symptoms to be worse.

You are in the middle of some major decisions and I can understand that they would be causing you to lose sleep. Maybe you could talk on the phone with the PCP down south for some advice on whether to head south or find a pcp where you are.

sorry to have gone on so long. Please post again and let us know how things are going.

OESPUPS2

Thank you all for sharing your experience and insight. That did help. It is hard for me to be rational right now - but today I am thinking that there is no hope for improvement, the prognosis is poor, and DW is miserable. It is selfish of me to think that she can make a long journey, and it may be time to sign up for at home hospice care (I've tried for palliative care in NY and there just aren't the resources available)... DW has some good days, and many bad ones, and I was just being hopeful about the trip, as I'd rather her be in hospice care there than here, but, the journey would be so hard on her, and there is that possibility that something could happen on the road.

The insurance approved the PET scan, but I think that I will reschedule the scan so I have more time to digest and think about this.

Thank you all again...