Talking with others in early stage dementia

I've diagnosed last fall and I'm still adjusting. No driving, weird dreams,a few nightmares

Hi, I was diagnosed in 2021 with amnestic mci then dementia . I am in the early stages of dementia and it’s moving slowly. Thank G-D!!!!!

I am on Aricept. I have been doing the neurocognitive testing yearly since that time.

Please let me know if I can answer any questions, if I remember!!

Welcome Nanette!!

Deborah

This is my first time on here. I was diagnosed with Vascular Dementia Three months ago.
I'm scared to death, confused, worried all day f the time, s cond guessing EVERYTHING, and I cry all of the time. The one thing I do know is I can't just sit here and watch my 🧬 fe go away. My precious memori s, my beautiful family.... I just don't know how to fight back. Or try to make the transition easier on my kids...
What do I do?

Welcome to this online support group, tlmead. It is scary to get a dementia diagnosis. You feel alone. But there are steps you can take to ease your journey. Being proactive can help. Please keep posting and communicating with the members.

Iris

Welcome avballester. You are on our online support group. I believe that peer support is vital for PWDs. The Alzheimer's Association provides free counseling from a Care Consultant, who can answer questions and give guidance. They are skilled in family dynamics.

Some local chapters offer a Memory Club, which is an in-person support group for PWD.

You might be directed towards a local therapist. But be certain of what you are asking of a therapist. Most of them are unaware of the nuances of a dementia diagnosis.

Please feel free to post often, and to keep us updated on how you are doing.

Iris

Any suggestions?

So yesterday I got my diagnosis of mild to moderate Alzheimers. (M72) with underlying conditions, HBP, high cholesterol, history of heart problems. The diagnosis was made upon the results of a PET scan, read by a highly acclaimed radiologist. My next step is to take the cognitive test, written and verbal, which I took 2 years ago. Based on those results I may have several more options.
My wife and adult children have been informed and are absorbing the news. They were all aware of my condition. I am taking Memantine and Donepezil which are both helping me. We are meeting with our estate attorney and financial advisor in September. I’m not going to become a financial or emotional burden to anyone. When I begin to lose my memories I will cease to be me, and will not continue on that journey. The only unknown is the fact that there’s no timeline for my progression of my loss of memory. Some I may go 10 years without getting demonstrably worse, others have the door shut on them within mere months. While I hope for the former I dread the latter.
I am hopeful that some of you that are experiencing this same situation will have some insight and help to guide me through this process. I have done all the testing over the past several years, and am recognizing this disease. I have open and honest with not only my family but also friends. My first thoughts are to begin hand written journal to document my experiences. Have any of you done that? If so, what are the positive and negatives. If not, why not? We, my wife and I have been slowly declutter Ing our house. We have been here 22 years and will remain until it becomes untenable. Anyway, I look forward to making new friends to share this with, god bless.

Hello-it is early and you definitely need to take time to mourn the loss of what you thought your life was going to be. Be gentle with yourself and feel your feelings. Then make sure that you do whatever you can to be as healthy as possible. The disease may be slowed with new healthy habits. Think about what you enjoy and can still do and love yourself by doing something that feeds your mind, body and soul. It has been a year and a half since my diagnosis of young onset Alzheimer’s. I have an amazing support group and that helps too. Sending hugs and good energy.

Can anyone recommend a workbook or planner for "getting your affairs in order," when you have young onset? I have no spouse so I need to get going on things before I decline more.

When I became the Executor for my Mom's estate, I purchased the book "The Executor's Handbook" by Hughes and Klein, 4th edition. This advice may sound backwards, but chapter 3 is titled "Strategies Before Death". The authors recommend preparing a "Letter of Instruction", which I had never heard of. The suggested topics for the Letter of Instruction include: Emergency information (people to notify, location of will, financial power of attorney, health care power of attorney, other emergency info), available money (checking / savings accounts, CDs), sources of current income (employment, pension, dividends, interest, annuity), pension / retirement accounts, securities (stocks, bonds, mutual funds), real estate, any business interests, vehicles / boats, home inventory / valuables, insurance (life, homeowner, medical, vehicle, disability, annuity), Money / Tax / Legal advisors, tax records (current year, past year), credit cards, what you owe (monthly bills, rent), what's owed you, burglar alarms, locked places / keys, hiding places, medical information, memorabilia / things (photos, letters, movies/videos), personal documents (birth certificate, passport, drivers license), personal information (employment history, education, significant relationships), your family, death plans, estate matters / will

What I have learned from Leqembi:

If you feel you might have Alzheimer’s do not wait for it, every day is important.

Find a good neurologist (or to start, could be a psychologist). This likely will be hard to do but reach out to local Alzheimer's groups, state associations etc. Then get on the phone. My Dr. said “we have a great psychologist, and she is only 13 months out” the day we heard that we got on the phone, and we got a good one in less than one month, that got me on the way to get Leqembi.

When our local hospital botched the required Lumbar Puncture and tried to bury it, we drove 635 miles to Mayo Clinic, Rochester MN. Best thing we ever did. Be very careful because the local medical community may not be able to give necessary care.

For anyone that has Medicare, I’d suggest getting a good health supplement also. Reason: Medicare pays for Leqembi (great!) but the required infusions are not covered. In my state (South Dakota USA), the cost for that is $1600 each month. BUT our supplement covers it 100% with only a $190 cost each month.

I have been on Leqembi for one year now and I can help with that as needed also.

Good News: Leqembi is testing an at home injection system (much cheaper, avoids most of the transfusion cost) intended for FDA approval and shows 14% more plaque removal.

If you have a question or concerns let me know.

We're looking into Leqembi for my DW. You said you were on your 15th infusion. What is the time period you have been on it? What side effects did you or are still having? I'm worried about the side effects and weighing if Leqembi is worth doing, The hospital where we would do the infusions has only 9 patients, and have been administrating for 6 months, Not much feedback from this so far.

If you enjoy reading semi-technical information, then you might be interested in this 2024 paper: "Initial Experience with Leqembi and Lessons Learned in 71 Patients at a Regional Medical Center".

The paper documents the results from the first 71 patients treated with Leqembi at the Norton Neuroscience Institute Memory Center in Louisville, KY.

First their screening process. They had 1249 new patients evaluated at their Memory Center over six months. 81 were excluded as they were not diagnosed with AD, MCI, memory loss, and/or dementia. Among the 1168 left, a whopping 1054 were excluded for a variety of reasons: Leqembi exclusion criteria (things like history of active cancer, severe psychiatric or depressive disorders, currently pregnant, unstable medical conditions, severe vascular dementia, more than 4 microhemorrhages per an MRI, stroke in the past 12 months, currently taking warfarin or vitamin K antagonists or direct oral anticoagulants or heparin or has acute thrombolytics or clotting disorders); moderate or severe dementia; patient refusal due to fear of potential risk of infusion complications such as ARIA, patient perception of risk factors of Leqembi versus its benefits, lived a long distance from infusion center, cost, burden of infusions every 2 weeks.

This left 114 people who underwent lumbar punctures to confirm AD biomarkers. 43 were then excluded due to negative cerebral spinal fluid biomarkers for AD or due to patient refusal to be treated.

Patients also had a PET scan, and a baseline pre-Leqembi MRI.

That left 71 people to be treated with Leqembi (again, out of the starting pool of 1249 people who came to the center).

The results presented in the paper are as follows:
The mean age of their first 71 patients was 72 years old, ranging from 49-90, 62% were female. 76% were referred to their Memory Center by their primary care provider. Many had other problems like hypertension (48%), high cholesterol (72%), diabetes (24%), and cardiovascular disease (31%). Regarding APOE4 gene type, 13% were homozygotes and 51% were heterozygous (I'm heterozygous), the rest didn't have the APOE4 gene. 86% were already on donepezil, 56% already on memantine. Of the 50 patients who made it to the 1st MRI following infusions, 24% had ARIA detected. Of the 12 with ARIA, 9 had no symptoms, 4 were APOE4 homozygotes and 6 were APOE4 heterozygotes.

37% had infusion reactions after their first infusion: headaches (12 patients) shaking / chills / rigors (11 patients). 88% of these 26 people with infusion reactions (23 people) reported the side effects either at the infusion center or within the first 24 hours post-infusion. One patient died shortly after the first Leqembi infusion of a myocardial infarction. They reported "It is uncertain whether or not this death was related to Leqembi treatment."

While they started with 71 patients at the first infusion, things progressed as follows:
- 67 patients (i.e. 4 dropped out after the 1st infusion), 12 had a headache, 11 had shaking / chills / rigors, 4 body aches, 3 were nauseous, there were 9 more side effects which 2 or less people reported
- 58 for the 3rd infusion, 2 had headaches, 5 others each had different reactions (such as shaking, nausea, vomiting)
- 50 for the 4th infusion, 2 people reported side effects including headaches, shaking, flu-like symptoms, dizziness, "getting lost" at night / confusion
- 41 for the 5th infusion, 2 people reported headaches, balance problems
- 31 for the 6th infusion, 2 people reported leg pain and dizziness
- 27 for the 7th infusion, 1 patient reported body aches
- 22 for the 8th infusion, nobody reported problems
- 20 for the 9th infusion, no problems
- 17 for the 10th infusion, no problems
- 12 for the 11th infusion, no problems
- 7 for the 12th infusion, no problems
- 2 for the 13th infusion, no problems
- 1 for the 14th infusion, no problems

It seems remarkable to me that they started with 71 people at the 1st infusion and ended up with 1 for the 14th infusion! They don't talk much in the paper about why so many folks dropped out.

Here is a link to the abstract for the paper at a U.S. gov't website. If you want to see the full paper, click on a link on the upper right labeled "Full Text Links"