After EEG and MRI - Questions for Doctor

Iris L.

I think that Concerned Sister is getting it, because she is seeing impairments with her own eyes. The problem is that she is hindered by having to explain to the rest of the family who are not seeing with their own eyes. Often members will post about the pushback that they get from their own family members or friends who will say that the LO "seems fine to them". CS, you're on the right track stay on it, and don't allow yourself to be swayed off the track.

One of our members, Crushed, wrote a very thought-provoking post which has been lost, unfortunately. He said: with a diagnosis of dementia, the family instantly becomes POOR. This is because dementia is the most expensive disease, with few resources. People need to understand this quickly, so they can get their ducks in a row, so to speak.

As to the MRI, it's basically worthless as to diagnosing Alzheimer's Disease, but people tend to put a great deal of stock into it. It is more for searching for alternative causes, such as tumor or evidence of stroke. IMO, extensive neurocognitive testing is very important in the diagnosis of a dementia. The MMSE and other such tests are not diagnostic, but are screening tests to point to the need for further testing.

CS, I think you are doing a great job of learning. Do you think SIL will be up to the job of taking the reins?

Iris

harshedbuzz

@Iris L. I know what push-back is like firsthand. My mother fought me on getting dad evaluated for the better part of a decade until his limitations as an advocate for her in an emergency nearly killed her. Even after his diagnosis, she often deferred to his version of reality for a whole host of reasons-- she didn't want to accept the limitations on her ability to do whatever she wanted and because dad was so unpleasant when restricted in any way. In many respects, dad was a relative piece-of-cake compared to mom.

@concerned_sister A neuro-psych evaluation isn't the same as a neuro-cognitive one-- they do overlap a bit, but the neuro-psych is more focused on behavioral health compared to a neuro-cog which focuses on neuro-cognitive skills-- social cognition, language, learning and memory, executive function and perceptual-motor skills.

What Is Neurocognitive Function and How Is It Tested? (verywellhealth.com)

MMSE is a quick screening test which serves to alert a professional that an evaluation is in order.

You could ask the neurologist to refer him for testing. Including it is part of the gold standard that jfkoc referred to. I was unable to make this happen for my dad as mom was making the decisions and the neurologist told her "I wouldn't put my dad through such a thing". I kind of side-eyed that. I have a son with high functioning autism and dyslexia-- he's done neuro-cognitive testing a number of times as well as neuropsych testing. DS rolled with it-- much of the testing is a little like solving puzzles.

Your situation is complicated in that you can only advise which can be frustrating at times. Not only does your sibling group need to present a united front in terms of support, but you're also going to have to defer to his wife. I get a sense you feel she may not be comfortable doing so or isn't up to the task. Is the language barrier considerable or more of a situation where she's normally fluent but nuance and medical/legal jargon are the actual challenge? Does she come from a culture in which a husband's rights are such that she's not comfortable taking steps to take over as sole decision-maker in the household? Does she have the skillset she'll need to take over all that your brother used to handle?

HB

Phoenix1966

Just want to add that many CELAs offer the first appointment free, so please call around(if you live in an area with more than one CELA available) and make the appointment asap. I would recommend doing that without a general consensus/ agreement with the group.

In my case, when I went to make the appointment, the only opening my lawyer had was a month or more out. I asked her, since I was working from home at the time, if her office could reach out to me if there was a last-minute cancellation. That got me in within two weeks.

Iris is right in remembering Crushed’s post(he was a lawyer) where he said that once you have that dementia diagnosis you are now poorer than you ever thought you’d be.

Your DB and his wife are lucky you are advocating for him and reaching out to gather as much information as you can. I know a lot of what we’re tossing your way is scary and we’re repeating ourselves a bunch, but that’s the collective experience talking. We’re kind of the opposite of the sign urging you to walk and not run.

concerned_sister

https://alzconnected.org/discussion/comment/203356#Comment_203356

I'll take a "show me" attitude with SIL. I am concerned with the cultural learning of being defferential. Speaking with DB yesterday, talking about POA and the set up that his wife, myself and youngest brother will have POA, but we agree a sibling will only act when asked by wife, and I am the first go to. And I made clear to him (yes, oximoron, can't reason with a broken reasoner) that his wife is the one who will live with the consequences of any decisions and she needs to be assertive. In his eyes, she is up to it. I am hopeful that the advice I got about checking with the Los Angeles association for someone of her native language and culture can set the expectations.

housefinch

@concerned_sister please know your brother is so lucky to have a sister so eager to learn and understand. Please never think I’m judging or criticizing you in any way!!! I am incredibly impressed by your commitment to your brother and his wife—-every family situation has its challenges, and I don’t envy your sister in law. Sending you hugs, comfort, and strength as you see how everything unfolds.

M1

Agree. We're not trying to be critical, at all, just trying to get you where you need to be with all possible speed. At some point, sadly, in terms of decision-making you're just going to have to take your dear brother out of the equation. Very hard to do--you remember who he was and are still trying your best to find and connect with the remnants of that person. We all do. But for decision-making, it just doesn't fly.

concerned_sister

HB,

You raise a lot of good questions?

"I get a sense you feel she may not be comfortable doing so or isn't up to the task. Is the language barrier considerable or more of a situation where she's normally fluent but nuance and medical/legal jargon are the actual challenge?"

At this point I can't pass judgment on her skills in regard to finances and investing. No data to judge by. The lanuage fluency is both. And I'll own part of that, as in not learning the accent. Example from last week, she was talking about them visiting my older brother in another state. I kept hearing something similar to they didn't want to go in the laney season, and then she spelling it with an R. So there are things like that in everyday conversation, but I think it's also the medical/legal jargon. (a) This can show itself in her taking in the information, and (b) it can show itself in her ability to have her questions understood.

"Does she come from a culture in which a husband's rights are such that she's not comfortable taking steps to take over as sole decision-maker in the household? Does she have the skillset she'll need to take over all that your brother used to handle?" She is a smart woman, college educated, and held a management position in her native country. But let's face it, investing and other aspects of a family's finances doesn't come naturally to everyone. There are complex questions ahead. So without the cultural issue, taking over would be a challenge. But the added layer of being defferential I fear will make being assertive feel unnatural. That, and accepting these are things her husband is no longer capable of. This seems to something she is hesitant to accept. Yes, she sees the deficits, and brought her observations to our attention. But there are times she has asked each of us sibling words to the affect, "He's gonna get better, right?" This concerns me. I have told her the MRI will tell us if it's something like a tumor that can be addressed, but the odds are this is a dementia that will continue to get worse.

concerned_sister

Phoenix,

Thanks for your input. There was only one name for our area on the list for CELA. We've asked a retired lawyer in the extended family, and the name we got was who he used to refer folks to. I went to that office a week ago and got some business cards. I asked if the did the first consult free, and the answer was no. We were given the rate. Regarding his family becoming poorer, that makes getting this done right especially important. There are important decisions to be made now that will impact their future.

Pay off the mortgage? Does this make sense with a two story home?

Plan on using IRA money for the above? For supplementing income if going on disability? Hoarde every penny for future costs? Spend down to qualify for Medi-cal in the later stages when he can't be left alone.

It's so important to get this right.

"...and we’re repeating ourselves a bunch..." Small ancedote: My oldest grandson came to live with me about a year ago. He's a young adult. There were a couple of periods in his childhood when his family lived under my roof. There was something I was telling him recently, and I added something to the affect, "I know you've heard this before." But his response came out as the highest compliment: You were always consistent. He appreciated that. In this situation here and now, I appreciate that the advice I'm getting is consistent, and often it bears repeating. This group is the experts I cite when advising my siblings on the path forward.

concerned_sister

https://alzconnected.org/discussion/comment/203390#Comment_203390

Housefinch, thank you. No worries, I'm not thin skinned. I, like the folks advising me, I wish we could go faster.

Researching this stuff is in line with my skillset from my career, as well as my favorite hobby. I also believe in the adage, "the more you know, the less you worry". I know for dementia, the light at the end of the tunnel is a train coming at you. (Sorry for the borrowed humor.) The best I can do is to help them prepare for it, and support them where I can. I am two years older than DB, but I've been retired about 10 years. Life has treated me well. I've had the time to do the research, and I'm available to go to appointments etc. When saying goodby this weekend DB thanked me for all the help, and said something to the affect he expects to be seeing more of me. At some level there is acceptance that his life is changing.

concerned_sister

https://alzconnected.org/discussion/comment/203391#Comment_203391

M1,

Thanks for the words of encouragement. The 'push' that comes from here gives me the backing to take in to conversations with the others. It's all good.

concerned_sister

Again, I just want to say thank you to all who have invested their time in providing me advice and guidance. It's truely appreciated.

harshedbuzz

@concerned_sister

Thanks for the clarification on your SIL's background.

TBH, my very Yankee-born mom was not dissimilar in her struggles around accepting that's dad's changes were profound, permanent and required her to assume new and uncomfortable responsibilities. She, too, is college-educated and at times out-earned dad over the years. In her case this was complicated by the power imbalance in the marriage; dad was domineering and had chosen a life partner who would not challenge that. Much of her reluctance to become the sole decision maker in the household was about maintaining a facade that nothing had changed and not upsetting dad who'd become more volatile in the early stages of dementia.

It sounds like your brother is already fairly impaired given the breakfast mix-up and him being the former IT go-to person who now can't manage a log-in. Your family might already be surprised by how easily it would be to use work-arounds to meet goals. And it will only get easier with time sadly.

My mom was the last to come on board and it cost her dearly. During that time when I was certain dad had dementia, but mom was pushing back on an evaluation, dad day-traded away $360K from their nest eggs. There's no do-over for that-- it's money long gone. I discovered this after we got a POA to do a deep dive into his account. He also had almost all their funds invested in REITs at a time when they were limping along and the market was doing well to say nothing of the 5 individual security suites he had on auto-renew.

HB

concerned_sister

Hi HB,

Your story of your dad losing $360K stuck with me. My DB is not of the temperment to do day trading, but the specifics of the story are not important - it's managing the risk that is important. I can imagine my brother's version of this could be seeing something he wants on Amazon and buying it. And buying it. And buying it... I can see him so easily doing this. Like showing me his list of siblings names and DOBs, and within a few minutes showing it to me again. Short term memory issues. I can imagine the memory of wanting something, but not remembering he already bought it.

Yes, the power dynamic in DB's household is going to have to change by necessity. Brother is ok with it now, and is encouraging it...but as he gets worse, and can't see his deficits, that can become very uncomfortable for both of them.

Yes, I see my brother as very impaired. But he operates in a range (in my perceptions). Sometimes he just dips below the range of normal, other times, like when he sent me an email he wanted to send to a former employer, it's just plastered out there for all to see. Repetition. Can't hold a thought. Can't find his words. I can't understand youngest brother not wanting to be adamant about him behind the wheel. This other character that wrote that email can come out at any moment. Oldest brother is encouraging me to contact DMV. Ask the what if's, if the Dr doesn't inititate removal of driving privledges. Can I take my copy of the office visit notes showing he's mild to moderate and ask that he be tested? Do I have to set up an appointment for the mild dementia testing?

jfkoc

Diagnosis;

https://www.medicalnewstoday.com/articles/how-is-dementia-diagnosed#diagnosing-dementia

concerned_sister

Thank you. We're taking steps forward. I have an appt next week where I will speak to a financial consultant (at the request of DB). DB has a need to move money around to address a tax debt. I'll gather info on taking it from his IRA vs taxable account.

With DB's agreement, I've set up the appointment with the CELA for the following week. I've mentioned we need to arm ourselves with information of Soc Sec or other retirement funds. Debts. Insurance options. Ask about SSDI. Ask about long term care.

I've tried to ease DB in to this conversation. I've told him we need a plan if he's strong as a horse for another 10 years. With his wife's plan to work another 8 years or so for her pension, they need a plan if DB declines 7 years out…what if he can not be home alone 3 years out. They need to look at these contingencies and start planning based on what we might hear from the neurologist.

Disappointingly, we still have not heard from the neurologist, and I think DB and his wife need to hear his diagnosis and prognosis from such an authority figure. DB stated today that since he's out of the pressure from his tax situation, and no longer supporting clients, just going to his day job is less pressure and he's doing better. I think it's just as likely he's doing worse therefore can not recognize he's doing worse. But we're moving forward.

Iris L.

Regarding: moving money around to address a tax debt. If there will be any consideration of applying for Medicaid in the future, be aware of the five year lookback. Discuss this with the financial consultant. Medicaid is not only for low income people, but there is long term Medicaid for middle income people.

Iris

concerned_sister

Thank you. I've learned so much from you and others. I had that in mind yesterday. We moved a few things within the account, but I wouldn't move anything outside the account 'til i spoke to someone smart on the issue.

concerned_sister

Tomorrow is the first appointment since the MRI and EEG tests. For anyone else in a similar place, here are a list of questions from a 2021 AARP article:

KEY QUESTIONS TO ASK YOUR DOCTOR:

1. What type of dementia do I have?
   
2. What’s the difference between Alzheimer’s disease and dementia?
   
3. What caused my dementia?
   
4. What is the likely course of decline? How long do I have?
   
5. What symptoms, other than memory loss, can I expect, and what will the pace of decline be?
6. What can I do to slow the decline? (What medicines are effective and what results can I expect from them? What lifestyle changes will be helpful?)
7. What about advertised supplements and programs that claim to cure Alzheimer’s disease?
8. Where can I go to learn more about dementia?
9. What help is available to guide me through my illness?
10. If I have a problem that might be related to my dementia, whom should I call?
11. What plans should I make now to prepare for a time when I can be less engaged in making decisions?
12. How should I select a family or friend caregiver?
13. What are reasonable goals for me for me now and in the future?
14. How can I preserve what matters to me?
15. As the disease progresses, will I suffer?
16. I’m afraid of becoming dependent and a burden. Will that happen?
17. When will I need to get help in the home or go to a facility?
18. Should I tell people about my diagnosis?
19. Should I continue to interact with people even though they might notice that something about me is different?
20. What are the chances that my children will get dementia? Is there anything they can do to prevent getting dementia?

Iris L.

These are great questions. I'd be interested in what type of responses you get from the neurologist.

Iris

concerned_sister

Thanks, Iris. I anticipate some things will be hard for him to hear, but need to be said (by a doctor). It's an interesting situation where he asks me to write emails on his behalf, and has me nearby when he makes phone calls, and asks me to take over after a few sentences (if that much). By doing these things, he sees and acknowledges his deficits, but at the same time he holds out hope that he can remain at work and avoid taking a disability retirement.

4. What is the likely course of decline? How long do I have?

From things others have said here, I expect it is likely he'll not remember this or (later) conclude the doctor is wrong. But I think this is necessary for him (and his boss, YB) to prepare for a disability retirement. Once we're on the other side of that, it seems the not arguing and not trying to reason with a broken reasoner will rule.

18. Should I tell people about my diagnosis?

I've had trouble finessing this one in phone calls this week. Boiling it down, he had to cancel a meeting with a long time client that he didn't even recognize the name of. DB placed the call and soon stumbled in to the um, um, ums. He handed the phone to me I introduced myself as xxxxxxx's sister, said he's been dealing with some health issues, and he'll be seeing his neurologist this week. I told him right now his skill set is not such that he can assist you.

I had to try to find that line of respecting xxxxxxxx's privacy, but letting the other party know he needed to look elsewhere for professional services.

I made two phone calls today that I thought I did better with. He had two large checks (payment for services) each in the 800 dollar range from 2021. He had one accountant tell him they were stale dated and to throw them away (at least that's how he remembers the conversation). When my SIL showed them to me today, I pointed out they each had a phone number on them, and I'd like to call. DB gave me permission.

I called and explained DB was having health issues and I was helping him with financial and other matters. We found this check dated …….2021 and we were trying to decide if we should shred it, cash it, or ask for a replacement.

In each case they asked for a photo of the check attached to an email with what I had explained and they'd take it to the next level up to get it replaced. (YAY!)

Anyways I'll be listening to the advice DB is given and how he reacts to it.

concerned_sister

FYI on SIL, she is participating in the finances and is very proactive in paying off credit card charges within days of occurance. DB had let the balance get up around 18K between two cards. No more.

My best guess going forward is that I'll still monitor things. I'm sensing it gives her comfort that I have her back in this.

Getting DB to fully step away is upcoming. He'll sit and watch as I instruct her how to do things.

She went to his VA appointment and was able to here about the benefits side first hand, and to ask questions. I still see my role as facilitator going forward. That seems to be a role we are each comfortable with.

Today is the appointment and SIL will be there and be able to ask questions. I told DB the other day that this doctor is his friend, he prescribed the generic Aricept that has helped with clarity (though his difficulties are still very apparent). I tried to keep things on a light note, but I've been second guessing myself. He's likely to hear things that will be difficult. I'm bringing most of the questions above to the appointment. DB wants me to come early so that he can add some of his own questions to this list.

(What a day. My SO is in for an ultrasound today.)

Iris L.

CS, why are you second guessing yourself? You have gotten a college level course on caregiving from the members here. IMO, no one can find better guidance in caregiving for a PWD than from these members. You already know more than most professionals about what to do. If you have questions, you know where to come. I look to my cyber-friends when I have a pertinent concern.

Also, IMO, I would not go into details about the health challenges at this time, to clients. Since DB has been a public figure in the community, you might want to consider a small dinner commemorating his many years of service to the profession and to the community, and now he will be retiring. You may or may not mention, for health reasons. Or consider sending an appropriate letter to clients. This is just a suggestion.

Best wishes to your SO on the ultrasound.

Iris

concerned_sister

Iris, thanks for the vote of confidence in making sound decisions in my approach to this. And thanks for the best wishes for my SO.

Re a retirement dinner with community recognition I like your idea, but what feels more to scale is just a small gathering with the folks from his primary employer including the owner.

It's funny things you have written here echo elements of the conversation I just hung up on with ODB. The last few lines before hanging up were about his send off from work. Earlier in the conversation was about how well prepared I've been for the appointment today and recent VA appointments etc. I've learned a lot here along with other research. I'll be back in a bit to summarize the appointment, and answers to the questions I brought.

concerned_sister

Here's how I remember the appointment. (Condensed to highlights.)

When they called DB back, I followed and introduced my SIL to the doctor. Other than that my strategy was to remain quiet during the first few minutes to allow the Dr to observe DB and for SIL to provide answers. The dr asked DB what things he has difficultry remembering, or has other difficulty remembering. He had difficulty answering the question, but indicated things had been clearer since starting the generic Aricept. He asked who had the responsibility for the medication. SIL answered she had an alarm set, and she makes sure he takes it each evening at 8:30. The dr asked about his other medications, she indicated he takes them in the morning and monitors those himself. [Though not stated to the dr, they use the weekly pill dispensers with compartments for each days pills.] Being objective, the conversation did not flow freely. The dr then turned to me, noted that I had been quiet, and what could I add. I talked about DB's memory in terms of word finding and getting stuck mid sentence. I confirmed that this had been better since the Aricept, but it is still present.

The doctor recommening uping his dose from 5 mg to 10 mg. He asked about current side affects (none reported when asked about each specifically). He was warned that he may experience them. DB noted he could use up his 5mg by taking 2 in the evening before filling the 10 mg perscription. The dr endorsed this plan. The dr talked about the Leqembi (Lecanemab (Leqembi®) is an antibody intravenous (IV) infusion therapy that targets and removes beta-amyloid from the brain) infusions. He said it was FDA approved, and had good results in over 50%, but the downsides were that it costs in the range of 25K annually, and a potential side affect is brain bleeds. DB didn't like that with the risk/reward and the cost. He talked about a DNA test that would show whether you fell into the percentage more likely to have this side affect (DNA test for APOE epsilon 4). If you had that, with the higher risk that would be off the table. He also talked about a PET Scan and blook tests to look for Amyloid. The infusion works to remove the Amyloid, so this would not be worth pursuing if this were not present. (We returned to this discussion later.)

He also talked about the possibility of using Namenda. We left that on the table as a possibility and went forward with increasing the current med to 10 mg.

After settling on the medication plan the dr kind of stood up with a bounce in his step towards the door. I asked if we could have a few more minutes to go over the questions. He smiled and was agreeable and I started down my list. (next post)

concerned_sister

1. What type of dementia do I have? - At this point the dr couldn't be certain but the MRI was suggestive of Alz.
   
2. What’s the difference between Alzheimer’s disease and dementia? NOT ASKED
   
3. What caused my dementia? Dr responded he did not know.
   
4. What is the likely course of decline? How long do I have? The Dr could not offer a time frame.
   
5. What symptoms, other than memory loss, can I expect, and what will the pace of decline be? The dr could not predict his.
6. (a)What can I do to slow the decline? (What medicines are effective and what results can I expect from them? The dr had already gone over the meds. I asked the dr if he could confirm something I told my brother earlier in the day: The MRI showed deterioration at the cellular level, the meds could provide clarity, but they could not rebuild the cells that were damaged. The doctor confirmed this. (b)What lifestyle changes will be helpful? Earlier the dr had talked about the exercise DB was getting and agreed this was good. I spoke of the mediteranean diet. The Dr also endorsed this. We mentioned that DB had been playing the 'beginning-ending game' and the dr nodded his approval, and recommended such things as soduku and word search.
7. What about advertised supplements and programs that claim to cure Alzheimer’s disease? NOT ASKED
8. Where can I go to learn more about dementia? He suggested the location of a local ALZ organization.
9. What help is available to guide me through my illness? He indicated he had handouts at the front desk, and recommended contacting the Alzheimer's Association. One of the handouts had a local website www.alzoc.org (lots of free services at that website)
10. If I have a problem that might be related to my dementia, whom should I call? NOT ASKED
11. What plans should I make now to prepare for a time when I can be less engaged in making decisions? NOT ASKED
12. How should I select a family or friend caregiver? NOT ASKED
13. What are reasonable goals for me for me now and in the future? I added, "Should he be looking into disability retirement?" The doctor said yes, now's the time. Based on his memory function disabiltiy retirement would be appropriate.
14. How can I preserve what matters to me? NOT ASKED
15. As the disease progresses, will I suffer? The doctor indicated that this will not be painful as it progresses.
16. I’m afraid of becoming dependent and a burden. Will that happen? NOT ASKED
17. When will I need to get help in the home or go to a facility? The dr could not predict
18. Should I tell people about my diagnosis? Loved ones only was recommended.
19. Should I continue to interact with people even though they might notice that something about me is different? NOT ASKED
20. What are the chances that my children will get dementia? Is there anything they can do to prevent getting dementia? NOT ASKED, as not applicable.

DB added:

Is recent runny nose related to the disease or the medicine? Before dr answered his wife offered, this was just a cold, could he take Nyquil/Dayquil. The dr stated this could be tried for a few days to see if this resolves it.

Will I need to be tested again to measure improvement or decline, how often? The dr indicated he should be tested again in 6 months.

As we were getting ready to leave the dr looked at me and asked, Are we clear about the no driving. I answered that he knows he shouldn't but we are still waiting on something from the DMV. The Dr looked directly at DB and let him know with his level of dementia he would not be allowed to drive. He and/or his wife asked if he was still considered mild, he indicated more toward moderate.

In the earlier discussion of the infustion and later at front desk check out, we discussed DB recently enrolling the the VA healthcare system, and we may be able to get some of the testing done there with less expense. The front desk was filling out the paperwork, there was a question of how to code something and ALZ was confirmed. I noticed on the form for the local imaging clinic for a PET scan on the line for Clinical HX/DX "Dementia G 30.9" I googled that and found, " 2024 ICD-10-CM Diagnosis Code G30.9 Alzheimer's disease, unspecified" further down the form PET/CT was xed, and a box for Amyloid Scan (Alzheimer's) w/ MeuroQ 78814 and Amyvid were both "X'd". It was discussed this could cost up to 3K out of pocket, and what insurance would cover varies. We indicated we would take the order to the VA system and see if they would order it also and at what cost. (We did not ask for the local scheduling at this point.)

On the separate bloodwork document, in an Alzheimer's labeled section, and item 504040 APOE Alzheimer's Risk was X'd. We discussed he had a blood work appt at the VA, and it was agreed we'd take this bloodwork request to them to see if these items could be added in their system vs needing a separate draw at the lab covered by his insurance plan.

concerned_sister

The bright side is we now have the orders for what is thought to be the gold standard of diagnostic testing (aside from the 3-4 hour neuro testing discussed before, which we'll ask the VA about). Now it's just a cost decision.

This all fits into better documenting his VA disability rating.

concerned_sister

Note, DB on and off had somewhat of a blank stare after the appointment. There were some carpooling arrangements discussed on speaker phone with YDB as he has a car in the shop and I've been helping out there. After we hung up, I wanted to confirm with DB that the arrangements were all acceptable to him. He offered, "I'm only the passenger." He's understandably deflated with that specifically and all the other information. I've warned the other sibs to give him space/understanding as he works this through.

Iris L.

Well done, CS! I will be out of town for a few days and probably won't be posting. Here are a few thoughts. The doctor sounds okay. They don't know much about living with dementia. When I first joined, when the topic of recurrent UTIs would come up, I would always advise double voiding, in order to keep the residual urine volume low in the bladder. This is a standard tactic. But the caregivers ignored me. Why? Because one cannot get a PWD to double-void! Caregivers have to figure out work-arounds. But doctors don't know that yet.

I had an Amyvid PET scan done through the auspices of a clinical trial. Otherwise the cost would have been $6000.

Alzheimer's Disease is a rule out diagnosis. After all other possible causes of memory loss have been ruled out, the resulting diagnosis is Alzheimer's Disease. Actually, "dementia consistent with Alzheimer's Disease".

For all the questions that you have, start with alz.org, there is lots of good info there. And of course, consult the members and read lots of threads.

OC has a lot of resources. I am familiar with the area. Call the local association that the doctor recommended and ask to speak with the Early Stage Coordinator. She is a wonderful woman!

I have to get up in four hours. Good night.

Iris

M1

The list of questions is impressive-things we all wish we could know-but it doesn't surprise me that the doctor was unable to answer most of what you asked, because they are essentially unanswerable i think.

I would be surprised if the VA will cover the amyloid PET scan, but it doesn't hurt to ask. It would seem to me that the only reason to pursue it would be if your DB were truly committed to having Leqembi infusions. you might inquire about VA coverage of Leqembi too.

concerned_sister

Iris, thanks for dropping by. I hope you have something good planned for the next few days. Thanks for the endorsement of the local org.