Alzheimers care and treatments: Consult with Mayo Clinic?

This is the response from my wife's doctor about hepatic encephalopathy. "Hepatic encephalopathy occurs in people with liver disease - toxins build up and can mimic dementia. Not only does Diana not have liver disease, but she also has confirmed Alzheimer's pathology in the brain, which people with hepatic encephalopathy do not have."

Diana had her 6th infusion this past Wednesday and everything went well. She is adjusting to the infusions and has very little side effects from each one.

Interesting and encouraging. https://alzheimersweekly.com/leqembi-slowing-alzheimers-what-you-need-to-know/

Happy Thanksgiving to all who celebrate it.

Ken

Howdy! I see a new article on the Dementia Hub Blog makes me think of you and the conversation here. I am hopeful that today is a good day.

If you have not seen the blog post I will drop a link here. I am curious what thoughts you have.
- Mayo Clinic Balancing Staying Safe and Independent
https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/after-a-dementia-diagnosis-balancing-safety-and-independence/
I can say the information about driving and shifting individual prescriptions to pill packets are topics I have been finding a bit enlightening. I had accompanied my dad for an outpatient procedure and he needed to discontinue his blood pressure med. Also, an ER visit and the doctor asked him the last time he took a specific drug. I was not of any help. My dad had gotten used to the packets and forgot which pill was what. Fortunately, his pharmacist helped get through the situations. Then, they’ve been adding helpful information to the packaging as to when he takes what, also how to identify pills by markings, etc.

I am realizing driving is a topic that is best addressed before getting into a bad situation but what do you do when you are way past that?

Do you have thoughts to share, advice to offer, questions to ask? And, a bigger question…..it is a bright spot to my day to read your comments and I would like to know….how are you doing?

Mayo is the best, so I recommend taking your wife there. They have THE best memory doctors there. With ALZ, it’s very important to get the best help you can, as soon as you can since you can’t get memory back. Mayo has new treatments (FDA) that help stall the disease. Best of luck.

@proth1018 May I ask which Mayo Clinic you go to?

They have Memory offices in both Rochester, MN and Jacksonville, FL. I see they also have something on their Scottsdale, AZ campus.
My husband had a knee replacement at the Jacksonville Mayo Clinic last June and Mayo is first class all the way. The most professional staff, the cleanest hospital/medical center I've ever been to. Impressive.
Last year, Mayo Clinic published an updated book that is excellent. It's called "Mayo Clinic on Alzheimer's Disease and other Dementias, Revised and Updated: A guide for people with dementia and those who care for them." You might also find that helpful.
I wish you the best. I don't think you will be disappointed with Mayo. They do all the testing there, or you can do it where you live and get the results via a video call. I've found it important to know at what stage my brain is in (MRI and Pet Scan) and how big of a risk I have going forward. (blood test) Plus, they taught me what I can do every day to stay the healthiest I can so it doesn't get worse. There are no treatments once the disease progresses, but there are things we can do NOW to have more healthy years. It truly is worth the investment. My insurance paid for all the testing and doctor appts. All it cost me was a couple of nights in a hotel and gas to get there. Best of luck.
If you're closer to Cleveland, OH or Las Vegas, The Cleveland Clinic also have excellent Memory Disorder clinics that can give you the same type of care. I just can't emphasize how helpful it could be to both of you.
Or, google or ask AI for a list of the top doctors and hospital systems for Alz. care in your area, if that works better. I found out this week that Duke is now using FDA approved "infusion" treatments which could delay the progression of the disease. So, there's a lot going on - jump in and see if you can get your wife some help before it gets worse. God bless you both.

Mayo has a 3-week program, held several times a year at all Mayo campuses ( I think!) called HABIT that should be imperative for anyone with family members who have MCI! My husband is not a Mayo patient but was welcomed into the program and though he grumbled at first about having to do 50 hours of classes, he agrees it has been the best thing ever!
Sessions are both together with caregivers and separated into patient sessions and caregiver sessions. Excellent information on everything to expect, promising research, financial planning, nutrition, ways to maintain a semblance of independence and organization, and even a year's subscription to Brain HQ for brain games that help different functions of the brain. My husband is in the early stages of AD, has been taking Kisunla infusions for 6 months, and we utilize what we learned at HABIT constantly. In addition there's a monthly alumni "reunion" that I figured I'd have to drag him to, but lo and behold... he looks forward to it and catching up with his fellow patients and we both enjoy the information updates and mingling with folks going thru the same things!
And PS... Medicare apparently covers the whole thing except for about $650 that is worth every penny!

@proth1018
Thank you for taking the time to give me such a detailed response.
We live in Scottsdale and have been with Mayo for many years, and yes, we think they are the best.
My husband was diagnosed with MCI in 2012, and frankly, there wasn't a whole lot they could do, but support us. We have tried just about everything that was available at the time and it probabley did buy him some more time. By the time the new infusion drugs were being used, my husband's Alzheimer's was already too far along to qualify.
I do agree with thegobalnomad1 the HABIT program was great very much worth the time and money. We both learned a lot and really enjoyed not only the staff but the other couples. It was just so nice to be with other people who understood.

Great information about HABIT @theglobalnomad1, and 2nded by @trishaanderson. Must be valuable! I have read the program is 10 days. Has there been a change in the program or maybe, are the 10 days spread out over a 3-week timeframe?

@japlok, I don’t remember if this was something discussed when you and your wife went to Mayo MN for consultation? @tdrell, you had mentioned finding out more about the program. Did you ever pursue more about it? I think this is where our conversation left off:
- Discussing Mayo Clinic HABIT
https://connect.mayoclinic.org/comment/1408967/
What great information that the HABIT program is offered at each Mayo Clinic location and that non-Mayo members have experienced it as well. I have read that HABIT focuses on helping with skills to stay independent following a diagnosis of Mild Cognitive Impairment (MCI). Then as you mentioned @theglobalnomad1, you now have an alumni group for support.

How did you find out about this program, how would interested patients and/or caregivers pursue it? Do you know, is this program restricted to “recently diagnosed MCI”?

@jlharsh Ours was 50 hours spread over three weeks, but some of the dates were 2 weeks (10 days) Same program and material covered. Rhonda Monger was our contact here at Mayo Jacksonville, but I am sure you can Google Mayo H.A.B.I.T. program and find out everything. I think they just need something from your doctor that you have mild cognitive impairment. My husband doc just wrote him a referral. There were folks who had no diagnosis, and those who had AD, Lewy Body dementia, and vascular dementia. Though you don't have to have the tests to get into the HABIT program, from what we learned, EVERYBODY should get tested sooner rather than later. If you do have Alzheimer's, the Kisunla and Lequimbi infusions work better the earlier they are started, and if you are past a certain point you are no longer a candidate for the infusion. We have heard such positive results from those who have had and are having the infusions that we are grateful we started when we did!

@jlharsh The HABIT program we attended in 2017 at the Scottsdale campus was 2 weeks, with a 1/2-day reunion 6 months later.
Our doctor at Mayo had referred us 3 years earlier, but my husband refused to do it at that point.