Concern for sister abruptly stopping Aricept

[Maggie]

Hi, Everyone,

I first stopped by the APOE4 website while reading Bredesen’s book in late 2017 and many times since. I have greatly appreciated the information the website provides and the people who have made this site a great place for support. I’m finally saying hello.

I first learned of my 3/4 status accidentally while reviewing my 2016 yearly blood tests and doing a little research online. Although at first I was offended for being given information that I had not requested, I had to let that go pretty quickly because I already knew that I had a genetic risk. My mother had AD; at least three of 12 siblings either had AD or a degree of dementia. I have come to appreciate that someone nudged me with the knowledge of my APOE4 risk.

The summer of 2017, my eldest sister of three was tested by a neurologist and diagnosed with mild dementia at 75, and since then, she has had an overall slight decline with short term memory and cognitive processing. Her medical records show that she started taking Aricept prior to being tested for dementia, which is strange to me, but her previous NP must have started her on the Aricept. Her current doctor suggested she stop taking the Aricept because of the lack of evidence of its efficacy. So her prescription was cancelled, and she stopped abruptly. Tomorrow it will be two weeks.

My reason for reaching out today is because I realized the doctor hadn’t informed my sister to taper off slowly. I’ve noticed in the conversations we’ve recently had over the phone that she seems more confused and flustered. I read in Bredesen’s book that it should be tapered off more slowly and why.

I’m assuming this latest decline is the consequence of not tapering off, and would appreciate if someone has experience or information that the sudden decline could be temporary. Also, if it’s worth it to put her back on the Aricept and then slowly taper her off it. And any other thoughts or suggestions.

I will come back at another time letting you know what I’ve been doing for myself with ReCODE. Today, I’m concerned for my sister.

Much appreciated!

[slacker]

The summer of 2017, my eldest sister of three was tested by a neurologist and diagnosed with mild dementia at 75, and since then, she has had an overall slight decline with short term memory and cognitive processing. Her medical records show that she started taking Aricept prior to being tested for dementia, which is strange to me, but her previous NP must have started her on the Aricept. Her current doctor suggested she stop taking the Aricept because of the lack of evidence of its efficacy. So her prescription was cancelled, and she stopped abruptly. Tomorrow it will be two weeks.

My reason for reaching out today is because I realized the doctor hadn’t informed my sister to taper off slowly. I’ve noticed in the conversations we’ve recently had over the phone that she seems more confused and flustered. I read in Bredesen’s book that it should be tapered off more slowly and why.

I’m assuming this latest decline is the consequence of not tapering off, and would appreciate if someone has experience or information that the sudden decline could be temporary. Also, if it’s worth it to put her back on the Aricept and then slowly taper her off it. And any other thoughts or suggestions.

Hi Maggie and welcome. You are a good sister!

If I were in your shoes, I would restart my sister on aricept, and then slowly taper, at least over 3 months. Any information on this technique working (or not) would be anecdotal, so why not try? The risk for harm is low. Unfortunately, no formula exists for an ideal taper. The medicine is not scored, but might be halved or quartered with a sharp knife. Good luck to you both!

[NF52]

Hi, Everyone,

I first stopped by the APOE4 website while reading Bredesen’s book in late 2017 and many times since. I have greatly appreciated the information the website provides and the people who have made this site a great place for support. I’m finally saying hello.

I first learned of my 3/4 status accidentally while reviewing my 2016 yearly blood tests and doing a little research online. Although at first I was offended for being given information that I had not requested, I had to let that go pretty quickly because I already knew that I had a genetic risk. My mother had AD; at least three of 12 siblings either had AD or a degree of dementia. I have come to appreciate that someone nudged me with the knowledge of my APOE4 risk.

The summer of 2017, my eldest sister of three was tested by a neurologist and diagnosed with mild dementia at 75, and since then, she has had an overall slight decline with short term memory and cognitive processing. Her medical records show that she started taking Aricept prior to being tested for dementia, which is strange to me, but her previous NP must have started her on the Aricept. Her current doctor suggested she stop taking the Aricept because of the lack of evidence of its efficacy. So her prescription was cancelled, and she stopped abruptly. Tomorrow it will be two weeks.

My reason for reaching out today is because I realized the doctor hadn’t informed my sister to taper off slowly. I’ve noticed in the conversations we’ve recently had over the phone that she seems more confused and flustered...

Welcome, Maggie,
As "slacker" said, you are indeed a good sister--and one willing to ask the right questions. Since I anticipate that your sister's new doctor may claim that the changes you see are "part of the disease process" and can't be caused by the abrupt ending of Aricept, I want you to be ready with a counter-factual argument for him: Since she showed no apparent ill effects from the Aricept, which is FDA-approved (and paid for by Medicare) then a reasonable hypothesis would be that she DOES benefit from it and that hypothesis can be tested by putting her back on it for 3 months and then doing another MMSE or MOCA test of her skills, as well as a daily living questionnaire and caregiver interview with you about her mood, activity level, etc. Any good researcher knows that just because a drug might not show statistical significance in slowing Alzheimer's, there are way too many methodology issues in most of those studies to say that it doesn't work for your sister. And studies continue to be done, with many focused on combining Aricept with other drugs or vitamins or treatments, based on the assumption that a complex disease requires "combination therapy." (The new doctor can find them on Clinical Trials.gov. if interested, and published results on Google Scholar.)

The good news that you shared about your sister is that at the age of 77, two years after her diagnosis, you see only a "slight decline" in her short-term memory and processing. Some researchers suspect that Alzheimer's that is diagnosed at age 75 or later may be qualitatively different than the disease seen in people ages 65-70, even though both are termed LOAD (Late-Onset Alzheimer's Disease). Here's the summary from a June 2018 paper by researchers in the U.S., U.K., and Netherlands.

We evaluated associations between age at presentation, age of onset, and symptom length with cognitive decline as measured using the Mini-Mental State Examination (MMSE) and Clinical Dementia Rating sum-of-boxes (CDR-SOB) in a large dataset of AD patients. Age at presentation was associated with post-presentation decline in MMSE (p < 0.001), with younger patients showing faster decline... Symptom length, rather than age, was the strongest predictor of MMSE and CDR-SOB at presentation, with increasing symptom length associated with worse outcomes. The evidence that younger AD patients have a more aggressive disease course implies that early diagnosis is essential.

[color=#00BF00]Disease Course Varies According to Age and Symptom Length in Alzheimer’s Disease[/color]

And here's a quote from 2017 using data from the well-respected, ongoing Alzheimer's Disease Neuroimaging Initiative (ADNI), with some key sections highlighted by me:

The course of AD appears different in older versus younger AD subjects. In the clinic, younger AD patients are more likely to have nonmemory cognitive symptoms such as difficulties in language processing, attention, and visuospatial abilities... In this large multisite study designed to mimic a clinical trial...Younger AD subjects showed faster whole-brain and hippocampal atrophy rates and greater volume loss in association cortices with predominantly posterior and posteromedial regions affected compared to older AD patients...In MCI and AD patients, atrophy rate reduced with age. These findings were apparent after WMH [white matter hyperintensity volume] and APOE e4 adjustment, suggesting that this difference is unlikely to be explained by small vessel disease or by APOE genotype...these differences in disease progression are likely to be driven by differences in age at onset in MCI and AD.

Patterns of progressive atrophy vary with age in Alzheimer's disease patients

Those results suggest that continuing to work on supporting your sister's brain health may pay off better at her age than it might for someone diagnosed at a younger age, in that it will slow the rate of decline. That might mean that she can also benefit from in-home supports longer, and from "work-arounds" such as lists, verbal and visual cues, phone reminders, additional time to process information etc. My own mother's gradual movement through the early stages was much like what you describe in your sister, and she died of congestive heart failure at 86 having lived at home for all but the last 10 weeks of her life and never moving beyond the "moderate" stage.

I look forward to hearing more about your own decisions and process in using your knowledge of your ApoE 3/4 status. As an experienced "lurker", you may have figured this site out perfectly! If not, check out the How-To Guide for tips to make the most of your time here.

[cflegal]

I have been on Aricept for roughly 15 months. In the first few months I had very vivid dreams which have now ceased. I have read that Aricept is not curative and I would probably do just as well without it. I have also been told the effectiveness lasts only about 3 months. I use a "ketoMIND" diet (see post). Your mother might have trouble on a low carb high fat diet. I do take and recommend Theracurmin (see post).

[Maggie]

Thank you Slacker for your suggestion and for responding so quickly; the prescription renewal is in the works. We'll get her back on Aricept, observe, and go from there.

NF52, thank you also for a speedy response and for the hopeful information on 75 and later diagnosed AD, the links to the study sources, and your empowering and uplifting thoughts.

cflegel, thank you for the heads up on the Mind diet and Theracumin. I read your posts, all 45. May I ask if you will continue taking Aricept and why?

I have been reading posts from each of you, will continue to lurk through your many past posts. I really appreciate your willingness to share your personal experience, your journey, and the research to back up your choices.

3/4

[SamNZ]

Dear Maggie, Thank you for joining our community, I am so glad that we have been able to help you a little. Your sister is very lucky to have you looking out for her, I would love to hear more about your journey on RECODE and how it is working for you, please remember to keep looking after yourself as you are looking after others. Welcome again, SamNZ