Opinions please!

jjwelz

Hello,

I am 50 years old and both of my parents have been diagnosed with Alzheimer’s within the last 3 years (both of them are 77 years old). I also found out that I have the e4 gene (only one instance though). With this info, my PCP wants me to go to a neurologist.

Would you go at 50? What if they see some signs? Or is it better to get seen as early as possible? Thank you so much.

SusanB-dil

Just my opinion, but unless I thought I was having any symptoms, I would probably wait.

If I started seeing any signs, then maybe… because I understand there are some meds out now that can keep some symptoms at bay, even if only for a while. Also a maybe, because seeing a doc now could give you a baseline if needed later.

Quilting brings calm

there’s no proactive preventative treatment, so no. Unless 1) you have symptoms or 2) you going and getting a baseline would be comforting to you.

What i would suggest is doing the things like:

getting your hearing checked, and corrected if needed. Losing your hearing increases the risk for dementia due to isolation. Same with vision.
Eat nutritious healthy meals. Supposedly that reduces the risk too.
Exercise your body and your mind.

Are these really helpful? Who knows since people who practice healthy habits get dementia too. But it’s all we have.

H1235

Keep in mind that people with dementia often have anosognosia (an inability to recognize their own symptoms). You may notice other symptoms before anosognosia sets in, but can you really count on self awareness of your symptoms? A spouse may notice, but if you’re not cooperative (because you don’t see symptoms), you could be putting family in a difficult situation by being uncooperative. I would trust your pcp, it’s just a test. I honestly don’t understand why you wouldn’t. Would it be the inconvenience, the cost??? I know this is very early, but I think I would also start thinking how you can prepare(I’m a planner). Does it make sense to pay the extra for insurance that would cover Al and start now? Should something different be done with your finances knowing Alzheimer’s is a possibility? Could money be protected if you act now? I would want to make sure my spouse is going to be ok financially. I’m sure you already know Alzheimer’s is expensive. A meeting with a lawyer might be in order. Hope for the best plan for the worst. Just my opinion.

jjwelz

https://alzconnected.org/discussion/comment/238346#Comment_238346

thank you for the feedback. I guess the only reason I wouldn’t is because I’m trying to live my life. But you are right. I need to prepare.

eaglemom

First off I applaud you for seeking information. Information is knowledge and knowledge is what you need at this point in time. My absolute knee jerk reaction to reading your post was insurance. Try to keep whatever insurance you have. You've found out you have the gene - your PCP didn't order the test? Has the PCP given you any diagnosis? I would hope not - because you don't have one with just this one test.

I guess I would ask myself several questions prior to seeing a neurologist. #1. What will it serve? You'll get a baseline possibly. Depending on the neurologist they might scare you to death with fear or put your mind at ease - its a toss up. #2. Are you wanting more testing? #3. Are you wanting to explore medications? Personally I don't know if just having the gene will qualify you for medication. And, if you start medication so very early how long will that maintain you? (If the neurologist gives you cold hard facts, find a different neurologist.) Which beings me to #4. Insurance. I don't know if you need a 'formal' diagnosis to have some of the medications. If you do, then you won't be able to get other health insurance. (I'm not trying to frighten you, but rather give you the big picture, so to speak.)

My other thought is, think about it for awhile and see how you feel in 5 months (or some other number) and decide then. You don't have to make the appointment immediately, I wouldn't think. You are correct, you need to be living your best life now, not wait for 'something' to happen.

eagle

SDianeL

the only reason you might want to go to a Neurologist is to get a definitive diagnosis is if you need to apply for Social Security disability in the future. Otherwise I would wait.

jjwelz

https://alzconnected.org/discussion/comment/238355#Comment_238355

thank you so much for all of this insight. It truly helps. I appreciate how much you put into this post. Thank you.

Bridge4

My DW is double APOE4, and so is her older brother who is a doctor and does not have dementia. There is only about a 40% chance of getting Alzheimer’s based on genetics alone. However, there are many “triggers” (e.g. diet, alcohol, smoking, etc.) that can set off the gene expression. My wife’s brother is using his medical background to eliminate as many triggers as possible and has managed to remain healthy into his 70’s. They say knowledge is power, so you might want to get tested at a relatively young age and do everything you can from a behavioral modification standpoint to increase your odds of a successful outcome, or at least delay onset for as long as possible and hope for a cure by then.

LBC83

Interesting question. When I was diagnosed with AD over a year ago, I started doing a lot of independent research about AD. I ran across a paper by Dr. Adam Boxer titled "Accelerating Alzheimer's therapeutic development: The past and future of clinical trials." I excerpted a figure from the paper below, and included a link to the paper. Box A in the Figure shows the standard amyloid hypothesis, indicating that soluble amyloid begins appearing in the brains at detectable levels for those with AD at about 20 years prior to the detectable level of cognitive decline (what I'll call AD onset). About 15 years before AD onset, amyloid plaque and soluble tau are at detectable levels, with tau tangles detectable about 5 years before AD onset.

Box B shows Boxer's speculation on what might happen for those taking Kisunla or Leqembi. There is a reduction in some biomarkers, but minimal reduction in tau tangles and minimal reduction in cognitive decline. Box C shows the trial for which Boxer received funding: combining anti-amyloid drugs with anti-tau drugs. There is much better reduction in cognitive decline.

You may wish to pay attention to the ongoing AHEAD 3-45 study, illustrated in Box D. If I had been asked to be a reviewer of this paper, I would have recommended changing the cognitive decline curve in Box D to look similar to the curve for Block C. As illustrated in Box D, the cognitive decline curve is sloping upwards, which is a bad thing. It seems the point of the AHEAD 3-45 study is to show that anti-amyloid drugs, if taken early enough, may prevent severe cognitive decline in patients. This study is composed or two groups: The A3 group for those with early preclinical AD and intermediate amyloid levels, and the A45 group with preclinical AD. If this study shows Leqembi works as anticipated, then perhaps this could be one strategy for avoiding the cognitive decline now always associated with AD. Again, you might want to follow the results of this clinical trial on the web, as it could impact your situation.

You also might want to monitor research done in the development of vaccines against AD, as illustrated in Box E.

In today's world, it is cumbersome to assess your biomarkers as you must have PET scans and/or lumbar punctures. However, there are now blood tests that are available to the consumer for checking AD biomarkers. Early validation work has shown these tests to be reliable indicators of the AD biomarkers. The downside is that they have not yet been approved by the FDA, so the cost is not covered by insurance. Maybe in the next year or so, some of these blood tests will become FDA-approved. This could then become a tipping point in a dramatic transformation of the AD diagnosis process in the U.S. As you posted, today's process is often a referral from a primary care doctor to a neurologist for an AD diagnosis. In a webinar on the Alzheimer's Association website, a neurologist stated that there aren't enough neurologists in the U.S. to diagnose and treat the expected bow wave of AD patients in the next decade. The neurologist said that in AD cases with no complications (such as concurrent Parkinson's), it is perfectly fine for a GP to manage care for a patient with AD. The GP would need to ensure a detailed memory test validated cognitive decline, blood work and/or a lumbar puncture or PET scan confirmed the AD diagnosis, and genetic testing to determine the treatment risks. After consultation with the patient, the GP could then prescribe Leqembi or Kisunla (the 2 currently FDA-approved drugs for AD). Eisai, the Japanese manufacturer of Leqembi, has indicated in their corporate future plans that they are working to transform the U.S. diagnosis/treatment of AD from a neurologist-centric model to a GP-centric model.

I'm perhaps a poster child for the new era of AD diagnosis and treatment. At the Cleveland Clinic (where my treatment is monitored), over the past 15 months, I have had perhaps 8 meetings with my Nurse Practitioner (NP). It was my NP who conducted the first detailed memory test, my NP who arranged for my lab work to rule out other problems, the NP who reviewed with me the results of my second comprehensive memory test with a probable AD diagnosis, and the NP who reviewed the results of the lumbar puncture which confirmed AD. I only met with my neurologist once, shortly before starting on Leqembi. In this meeting, we spent most of our time discussing the clinical trial organized by Boxer. My Neurologist recommended that I contact Boxer about participating in the trial, which I did. Boxer indicated he did not have a firm start date, so I elected to start on Leqembi. And that was it for my meetings with a Neurologist.

Finally, I echo what others have posted about lifestyle changes to minimize the risk of AD. Quoting from one AD website: "Research has shown that people who take regular exercise may be up to 20% less likely to develop dementia than those who don't take regular exercise." Other studies have shown that the DASH Diet and the Mediterranean diet were positively correlated with improved cognitive function. I participate in two exercise classes each week, run a 5K on each of two other days a week, run a 10K once a week, and we follow what the materials provided by the Cleveland Clinic referred to as the MIND diet (Mediterranean-DASH Intervention for Neurodegenerative Delay diet). I also stay mentally active by volunteering as an IRS tax preparer for low-income individuals, sing in a community music group, serve as a church treasurer, etc.

https://www.cell.com/cell/pdf/S0092-8674(23)01077-2.pdf - Link to Boxer paper

midge333

Great advice above.
1. Achieve and maintain a healthy weight

2. Maintain a normal blood pressure

3. If you have type 2 diabetes, get rid of it (see #1, 6 and 7).

4. Don't smoke

5. Don't drink

6. Exercise daily

7. Eat a health diet.

8. Cultivate family and community relationships.

Chiere

https://alzconnected.org/discussion/comment/238459#Comment_238459

This is amazing info, thank you. My DH just retired from NASA, is brilliant, and has been faking out drs for half a decade. After 6 years of literally begging and crying in the GP’s and then the Neurologist’s office, because I knew, he finally got solid testing. Previously we were told “He’s fine. I see no signs of dementia.” All I had to add to my arguments and pleading were print outs from PubMed to hand over desks. While I feel validated (and of course, devastated,) that I have been proven correct, I also feel that we are two years behind the 8 ball. He could have been receiving Leqembi shortly after it first received FDA approval.

The short is, I agree with you 100%, and really appreciate the resources. Thank you again.

Chiere

I absolutely would go for testing. I have inherited one copy of the APOe4 mutation, and have already gone in for a baseline. This included the memory tests, the conversations with a neuropsychologist, all the annoying tests like stacking blocks and reeling off as many boy names then girl names as possible (if you want to be entertained as you do this use the same names both times because historically they were very interchangeable; Leslie, Lee, Meredith, Cecelia,… lol)

Here’s the reasons; there are new breakthroughs happening quicker and quicker that benefit early detection. While there isn’t a cure yet, and the side effects can be gnarly, the current treatments can slow the progression down. And our goal is to catch it as early as possible, badger our way into one of these treatments, and cross fingers that we can slow it enough that when a breakthrough that halts it is made it will be useful for us.

And you have to fight for even that baseline. It took 6 years of me pestering our GP to get referrals to a neurologist. My hubs is brilliant and masked well. But he finally got tested 18 months ago, and despite all my proof and protestations, was declared normal and everything was saved in his files as his baseline. And the only reason I was able to finally get tested (despite repeatedly telling anyone who would listen that I had one copy of the APOe4 mutation and was starting to forget words) was because when DH got his “normal” dx he said in the neurologist’s office “See, I told you it was you!” Hint; it was not. He just got his Amyloid PET test back showing more signs of amyloid plaques than a “normal” brain should have. But the neurologist then set me up for all the tests.

My official dx was “Normal, and weird. Also, smart.” And my increasing forgetfulness was attributed to a combo of my ADHD and Fibro fog. My daughter says I’ve always had memory issues. She’s correct, but it was things like while I couldn’t remember a person’s name I could remember their dog’s name. Or while I couldn’t multiply simple numbers I could take a 1956 Belair’s engine down to the cylinders and replace the rings, put it all back together complete with a properly timed chain and gapped plugs, without a manual. What’s going on now is worse.

Sorry, ADHD strikes again.

ANYway! It took 6 years to get either of us into a neurologist’s office. It’s taken another 18 months of my aggressive campaigning to get DH retested. Follow-upped? And dx’d as having mild cognitive decline. And currently we’re 3 months into clearing the way for him to start Leqembi or Kisunla therapy. This involves some minor surgery, being taken off a few contraindicative meds, and lots and lots and lots of arguing with the insurance company. Lots of arguing. It’s draining and I don’t have any extra mental energy to focus on myself until he’s set.

So, do it. Gird your loins for Battle. Print out every white paper you can off PubMed about the value of early detection and the new meds and therapies, and take that with you to every office visit. Be aggressive. Advocate for yourself. There’s new things coming down the line that will benefit you and the sooner you find out if you’ll even need them, the sooner you can take them, and the longer you’ll be able to maintain your brain’s health. Get that baseline at the very least. And start now asking for it. 8 years ago we were 55…

kingr2

https://alzconnected.org/discussion/72534/opinions-please

https://alzconnected.org/discussion/72534/opinions-please

The person that I am caring for was an avid scuba diver. (This has to do with living your best life.). He of course can no longer scuba.
I remember over the years, prior to any Alzheimer’s symptoms, he would wonder if he should money on vacations. He had plenty of money. He didn’t need to worry about finances. I used to encourage him to go on the trips that he wanted to. I told him we never know what life will bring us and when we can’t do the things that we want to. It was very difficult for him to accept when he was told he could no longer dive.
Life is such a fine balance.
If you won’t feel going for an opinion, then one and then enjoy each you possibly can.

I’m sorry about your parents. That must be so difficult for you. My heart goes out to you.