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Not ready to declare him incompetent. Neurologist requires MD referral. We've been told early evaluation can improve treatment and care.

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Don't seek a declaration of incompetence unless absolutely necessary for there person's wellbeing.

I have found that early diagnosis is helpful in lots of ways (preventing financial disaster, getting family members on the same page, sometimes getting the person themselves to accept the reality of the situation), however, unless someone is really young, I think the drugs that are available now are just a basket of undesirable side effects and don't do anything much at all except make the doc feel like s/he's done something.

Personally, I found that WRITING down the observed behavior and being sure to highlight anything that is potentially dangerous to the person or someone they live with and then mailing it to your loved one's doctor ensures that it will be addressed. The doctor is obligated to make the letter a part of the patient's file and therefore must answer the concerns described in the letter.

You really can't blame doctors. They are not dementia specialists. They are often snowed when their patient is 'showtiming'.
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Katsmihur Jan 2020
I wouldn’t say describing dangerous behaviors ‘ensures’ behaviors will be addressed. Unfortunately, Mom’s PCP didn’t address very concerning behaviors I sent in mail via Return Receipt Requested.

Truth about docs being snowed when patient ‘showtimes’!
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caroli1: Whatever works for you...
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I know how frustrating that is. Our mom was that way. She was so brilliant (really, she was, best thesis of her PhD type brilliant) that she could "turn it on" and mask her symptoms/behaviors temporarily and "snow" people (even close to the end).

Fortunately, while her doctors would not talk to us about her, they did listen to our descriptions of our observations, and she was diagnosed with ALZ about 3 years before she passed. Unfortunately, in her case, she then told everyone that she only received the Dx because one of my brothers who is a doctor "forced" her doctor to make the diagnosis. She was in a medical field and "knew better," but she refused any assistance or medication that could have assisted, particularly with her anxiety. She was one of the most stubborn people I've ever known.

She passed away last year, although not from the ALZ so, fortunately, she "escaped" some of the worst, but I think she would have suffered more if she'd accepted the diagnosis and accepted help.

Despite this, I would tell her doctor that you don't want her/him to talk to you about your parent, but that you need to "share" with the doctor your observations. I would make one person the "sharer" but have that person gather the observations from the children/spouse/close friends/whatever so it can be communicated in an intelligible and calm way. The PCP should know that those around the person on a day-to-day (or at least more frequent) basis are able to report more accurately than any self-reporting.

Best of luck!
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Seek out a geriatrician.
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While the Medicare Annual doesn't really do a full traditional physical exam, I did find this online:

"Medicare Annual Wellness Visit – Consumer Information
The Annual Wellness Visit benefit includes several preventive health services, including “detection of any cognitive impairment”— essentially, this is screening for memory impairment."

I will say that when I first signed up for my advantage plan, they pestered my by phone and mail (until I requested they stop) to sign up for an in-home assessment (no mention of cognitive testing.) At this time I don't need them doing this and they can't do as much as an in-office exam. I would NOT recommend this for anyone, but it could help those (if they have this "service" in their plan) who are home-bound or reluctant/resistant to going to the doc.

IF doctors still balk, I found this online:

https://dailycaring.com/sage-test-for-alzheimers-at-home/

The big "Start Now" is an ad - don't click on that! I did click the link for the test itself, but they give examples in the page above, as well as a link to a page that could help you and/or others too. There are 4 PDF tests provided, in multiple languages. Some of the drawing tests are a little much, and most of the 4 tests are similar.

https://dailycaring.com/7-treatable-health-conditions-with-symptoms-similar-to-dementia/

One I am aware of is potassium - mom was over-hydrating and ended up befuddled. She got IV/checked-in and when she was "stable" again, returned to her normal nasty self, demanding to get out!

So, check out these and see if they are of any help, while you get this doc on board or find another.
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Not sure about improving treatment, even if issue is determined, but certainly it helps you make plans going forward! Sometimes UTIs can contribute to some confusion and other behavioral changes, so be sure to test for that. Treatments for most dementia is not going to provide any cure, and probably not delay anything, but there are ways to treat some of the symptoms.

Although some insurance requires referrals, sometimes the specialists require a referral even if insurance doesn't - they want PC to determine need and refer. Been down that road! My insurance doesn't require a referral, but my PC has made referrals.

If this doc requires the patient to request testing, consider another PC. This should now be part of ANY physical. We had to change mom's doc (again), and despite her living in MC for almost 2 years, the new doc attempted the "test." It was abysmal, partly due to her hearing aid going through the laundry - but she never would have passed the test. Not sure what this testing accomplished. I changed PC at the same time (we were going to same docs at the time of the move to MC) and they tested ME at my physical!!! Thankfully I passed - if I didn't, who would take over mom's "duties?"

Requiring a patient to request cognitive testing or to report their own cognitive issues is ridiculous. Dementia lies to them and they think they are just fine thank you! Docs only spend 10+ minutes with most patients, and in the early stages they will NOT see what you see. Many can pull up their socks and appear normal - for long enough to fool others. Even better, MA DMV requires patient to "self-report" dementia Dx... As if THAT will happen! Many docs are reluctant to get into that issue, so you have to do what you have to do if/when car/driving needs to go away!

Mom's doc prior to the decision to move her chatted with me during mom's last visit (they requested we come in when I said I needed documentation for taking on rep payee for her federal pension.) She was being VERY difficult (almost nasty) to the tech doing pre-doc checks. He promised to provide what I needed. NINE months later, multiple portal requests later, nothing. The responses would be we need to know what to put in the letter, need DPOA doc, etc (sent it all by mail when I initially asked about getting it, and then attached it all again to my response. same for POA document. phone calls were very difficult, either endless menu loop, or asking again for what they were already given! multiple ways/times I provided what was needed and got nothing for it.)

So, don't accept this from PC. If you don't want to change docs, you could consider this:

The first thing we tried to do was keep mom in her condo and bring in help. The plan was the minimal hour, and only a sanity and med check (none of us live near enough to do this daily.) Prior to signing anyone up, they sent a nurse who administered the test (covered by Medicare.) She confirmed what I suspected and gave some recommendations, like using a locked/timed dispenser for her medications. There were several visits by this nurse even after we started the aide service, esp since mom developed UTI, and it was all covered by Medicare (check with the aide company first!) If mom had agreed to any personal care (such as help bathing), the nurse said some of her care would be covered by Medicare. Of course she refused. In her mind (and repeated often!) she was fine, independent and could cook. Not. Repetition of statements/questions was my first clue. In retrospect, some other subtle signs were there, such as accusing someone of taking some items (nothing even worth talking about!), but not knowing anything about dementia at the time, it didn't click.
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Definitely get your LO's POA docs in order, but also see if you can find a geriatric physician. (I'm assuming your LO is elderly?) No referral necessary, and a geriatric physician will be specifically trained in testing for and diagnosing dementia. A neurologist referral may still be necessary to get a more detailed diagnosis: MCI vs LBD vs ALZ, etc.
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Get your POAs now, while everybody considers the LO competent. Maybe write a letter to doctor of all your concerns. Give to doctor to read during an evaluation - that you are present for. Maybe he will go for a nice retirement facility/village that steps up care as needed.
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I have a few thoughts.
1) If you don't have power of attorney, you need to pursue it.
Legally the Dr can't discuss your father's medical care with you due to HIPPA.
2)Orher than treatment, what are you hoping to gain from an evaluation? Sounds like a serious discussion with Pop about a retirement village is in order.
3) An evaluation may not show anything. I just went through this with my Aunt. During a mini mental evaluation she got 29 out of 30 questions correct! This is the same gal that forgets everything 5 minutes later. Tries to answer the TV remote when the phone rings and almost burned down the house with the microwave.

At the very least, POA would at least give you a leg to stand on with the Dr.
Hang in there!
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jacobsonbob Jan 2020
The doctor may not discuss things with you due to HIPAA, but that shouldn't preclude your being able to provide information about the patient for the doctor's consideration.
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Who is not ready to declare him incompetent? You or the doctor? I agree with the other posters. You need to change doctors. A doctor sees a patient for 10 minutes. They should rely on family members for their insight and feedback about what is really going on. My FIL was still driving at 92 and going to various doctors with my MIL. He told everyone all sorts of nonsense about how he was cooking meals, keeping up the house and just generally doing well. The doctors wanted to believe it and no way to know until I started going with them. I am a nurse and got neurology eval referral and then neuropsych testing to confirm what we knew. But PCP believed whatever he said until I helped her understand it was wishful thinking on his part.
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Oskigirl Jan 2020
The problem is that getting someone declared incompetent is very, very difficult unless a doctor signs off. And, if you lose, the person becomes even more "empowered" in their denial and angry at you. We had this same situation with my mom. PCP took years to finally "get" it.
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I am part of the Medicare Wellness Program - it's free - and I get evaluated annually.

If his primary physician refuses to evaluate, inquire about the medicare wellness program. A nurse called my DH monthly and now it's me getting the calls, lol. But it's nice to know that someone has my back! Anyone on Medicare is eligible for this program.
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I would request eval. If doctor won’t do it find a better doctor. We had to do that. It has helped some. He has referred her to doctors she needed to see and it took a bit to get in to see neurologist. Now next step neuropsychologist. The new doc takes his time to talk to my mom and check with me to see if she’s actually telling him everything. She still has problems but we are starting to learn more about them now. So I’m wishing you luck on doctor front.
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My uncle's doc declared that he couldn't possibly have dementia because "nice people don't get dementia". That's a direct quote.
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cherokeegrrl54 Jan 2020
Sounds like this dr may have some problems himself..🤣🤣
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GPs are supposed to have a 'wellness' visit with all medicare patients annually. This includes the most basic cognitive testing but at least it's something. If your GP doesn't do this, there is something seriously wrong and it's not (only) with your parent .
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You need a new primary care doctor. It is pretty insane for her doctor to say he won't do eval until SHE asks for it. I doubt many people would ever ask because they have no idea what you are forgetting.....because the nature of the disease is forgetting. If you continue to use the doctor, then you need to ask him: How do you get an evaluation for a person who does not realize they have a problem and then give a list of examples of some of the changes in her behavior.

You might check the insurance plan to find out what they will pay if you see a neurologist without a referral. Very possible some/most of the visit would be paid - maybe just lower payment.

I'll have to remember your dr's response on my list of craziest things I've heard from an educated medical provider.
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jacobsonbob Jan 2020
Expecting the patient to ask for an evaluation is probably like asking politicians to request criminal investigations on themselves!
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My suggestion would to bring in social services, or contact local department of elder care. They will come out and access situation and make recommendations for getting help.
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If the neurologist requires a referral then it has nothing to do with the insurance and Medicare. In my state, the only way to see a specialist is with a referral. It’s not because the insurance requires it.
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thepianist Jan 2020
In fact getting a referral is an insurance thing. Some insurance plans require referrals to a specialist, some do not. In my state ( PA) Medicare doesn't require referrals.
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Is Mom on an Medicare Advantage because straight Medicare noes not require a referral.
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Take him to a different physician. It's part of a general practioners responsibility to evaluate mental status and cognition EVERY VISIT especially if you are there and voice concerns. If the Dr. makes recommendations and he refuses to follow them that's different-pts have rights- but for MD not to even evaluate him is unacceptable.
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ExhaustedPiper Jan 2020
That was my first thought, new doctor!

This current doctor is waiting until the patient requests it???? That will be NEVER. I second to get a different doctor.
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If you feel he is unsafe and incompetent in his own care you can call APS to check on his situation. If they agree they will report back to you on ways to proceed for guardianship. Without that you do not have rights.
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What kind of deficits are you seeing? I took my MIL to a doc appointment to check her for a UTI. I was not her medical PoA. I discretely passed the doc/staff a note requesting that they perform a cognitive evaluation because we were worried about her and they were happy to oblige. She did poorly on the test. It was very helpful to move forward in helping her knowing what her actual abilities were.
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Katsmihur Jan 2020
Wow - that was easy!!!! Moms new PCP didn’t want to do cog tests - said to bring it up with neuro.
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