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I have read so many responses that others have posted about getting someone tested for dementia. I have just changed mom's doctor to one who supposedly deals with dementia, etc. in the elderly. This is the second doctor that has given her their "twenty questions" test, which mom passes and they are all surprised. Yes, she can remember the date, the day of the week, maybe the month and the year (sometimes), but she can't remember how to answer the phone, work the microwave or stove, take a shower, get dressed, take her meds properly, handle her own personal hygiene issues, or a number of other daily tasks without help. I have told her doctor this, but I can't seem to get them to help me with ordering more detailed testing to see where she is on the dementia line or what type she may be suffering from. How do I get this done and who do I go through to schedule it?

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I did what Scared did and documented my observations and then sent to the Dr in advance of mom's office visit. He did the same tests you described and she passed; then when he spent time asking her about some of the things I had described in my letter (and he did so with her confidentially -- she never suspected I had told him in advance) -- she was able to elaborate and he was able to diagnose "dementia" and at least have on record as a baseline. My mom has gotten worse; so I kept up the documentation (specific to dates, times, circumstances, etc.) and continually mailed him updates.

I need a letter of incompetence from the Dr. (and they are very reluctant to provide). But at least your documentation will be part of the medical record should you need it.

You can make an appt for her with the Neurologist. If you need the referral for insurance, be persistent with the PCP and insist on it -- or go to another geriatric care physician.

Dementia will worsen. Your PCP should be able to diagnose that even without a Neurological exam confirmation. Alzheimers may show up on the MRI or CAT scan but Dementia may or may not.

My mom is always able to pass these silly questions even when she was sent under a TDO to a behavioral med center for the dementia -- yet they noted over and over her paranoia, hallucentations, depression, dementia -- and after all that; they still wouldn't write an incompetency declaration. A big dissappointment and frustration and without out I have no legal authority to get my mom the help she needs in a memory care facilty.
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Unfortunately, they can, and do, miss family/caregiver input.
They are not deliberately trying to "ignore" it, but they often are so overwhelmingly busy, they do not hear it.
That is why it is so important to do exactly as described, in documenting, it, taking pictures, etc., and submitting them to the Docs office to put into the patient chart.
Making it clear that they are DIFFERENT from how they used to be...for some reason, makes a huge difference, as well.
...not just that the behaviors are not OK, but that they are different.

When I tried to tell the Docs Mom was getting worse: stove fire, unattended cooking things, burners left on, inability to take care of her affairs, forgetting, etc., they didn't take it seriously, as I was unable to tell them when it started
--it has been going on a long time, very tangled with her mental issues of a lifetime....subtle, but worsening differences. For that, they totally blew me off...
The only thing they did pay attention to at all, was her drug-seeking--THEY witnessed that.
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The advice from "Scared" is excellent. It's hard to imagine that the doctor can deny such well documented evidence.
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document, document, document...keep a journal, take pictures, take videos...whatever you can/need to do to get your loved one the help he/she needs. I gave my husband's doctor a journal of all that had happened over a month because I wanted him to understand what was going on was NOT what had been going on before...yes there were memory lapses, etc,, but what occurred in that time period was far worse than ever and something needed to be done....mail it, fax it, give it to his asst...whatever you have to do to let him know the reality of the situation. Be specific, give specific examples....don't mince words...tell it like it is....Good luck!
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hadenough,

Just wanted to say I couldn't agree with you more. The people in this situation should be seeing a specialist who will also take them seriously. I think some doctors get the mentality that just because their patient and the patient representative aren't doctors that they couldn't possibly know what they are talking about. It's ridiculous. They are dealing with human beings who have "real" problems. Especially for the daughters, sons, and others who are asking genuine questions about their loved ones health, they should be heard by the doctors. They know what goes on because they witness it first hand. I get frustrated with this type of thing because in the very early stages of Alzheimer's my MIL refused to believe she had a problem. She was in total denial about her memory loss and other strange things that were happening to her. I think she was probably just scared to find out something was wrong, which is completely understandable from her point of view. Now, she is in the late stages, bed-ridden, and needs constant care. I can't stress enough how much all the caregivers and patients NEED to find a doctor who will listen. Sometimes our relatives are stubborn, but we just have to push past it and find a way to get them to someone who can help them. Believe, me I know how frustrating it is to deal with someone who refuses to see they need help. I truly feel for all those on here who are only trying to do the best for their loved ones. God bless all of you and may He be with you and your loved ones in your struggles.
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I was fortunate enough to have a family dr who recommended a new neurologist for my husband when his behavior suddenly and dramatically changed about 2.5 months ago. This doctor sent him for an MRI of the brain, and EEG, carotid artery ultrasound, neuorpsychological testing (a 3-hr test and a 1 hr pre and post test visit), PT, OT eval and a speech eval. These people all meet as a team once a week to discuss the patient. I am certainly happy and blessed to have all this care for my husband. I would try calling your local agency on aging, the Alzheimer's Assoc, your local mental health agency. They might be able to direct you to a doctor who will help you. Check online, too. My husband can answer some of the questions they normally ask in that test, but not always. He can bathe, shave, use the toilet, etc,., but he can't manage his meds, prepare something for himself to eat, follow directions, use the microwave, adjust the thermostat, etc...."little" things which are just a part of everyday life. How can he take care of himself? He can't. I have to do it all to keep him safe. It's hard and tiring. You need to keep trying to find a doctor who will get you some help. Don't give up! I know how hard it is! There are days when I just want to run away.
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There seems to be a few things working behind the scenes with this:

==Docs do not like to DX anyone with a dementia, it means the person loses their autonomy;

==It changes how billing is done, and changes what facilities people seek, and which will accept them.

==Systems as they are, are inadequate. ESPECIALLY if someone is Medicare/Medicaide, the systems are overloaded, States are pretty much broke, and they simply do what they can to keep people at home, rather than in a facility.

==Docs require caregivers to "Quantify & Qualify" what conditions are observed. That is, how much of what, is happening? [specifics,given in short sentences]

==Sometimes there are key words to get the message across.
Key words may change depending on situation.
Like, telling a collection agency to stop "harassing" familly for debts of a deceased elder, who "...died owning no assets; I am not blood relative to that person; the spouse has no assets and cannot pay that collection".
Or, tell the Doc your elder is "behaving in ways that could endanger themselves and/or others"--and specify what those are, how often, when, related to what.
Specifics.

I only managed to do some things to reduce impact of things on our household. Unfortunately, due to Mom's ability to be a spectacular "showtimers" expert, they all missed diagnosing her actual problems, and she therefore never got proper treatment for them. The only reason she was able to skate past them, was because
==Social workers doing in-home evaluation, only stayed 2 hours; if they'd stayed longer, they'd have caught her at it. If you can get SW's to the house to evaluate, ask them ahed of time, to please stay longer than 2 hours, to best chance catch her at things. AND, make sure your elder is already kinda tired out from some activity--anything--ahead of time. If they've made dementia-related messes, take pictures, or leave them for SW's to see.
==The hospital Psych only interviewed her briefly. The hospital did put a sitter in her room, as I had told them she'd attempted suicide in the past, and had been threatening it again, but that fizzled, too. I was at a loss as to what to tell them, as, I was not doing a good enuf job of describing things, to get them to take it seriously.
Bottom line, she's poor and on Medicare/Medicaide--the payment rate, with no assets left to pay for facility care, is too low; and, I'd already told them she's a mega-hoarder who can be combative and has rages---it meant, they really didn't want her in any facilities...they left her in our care, tearing us to smithereens, instead. But she did turn things around on us, by telling others we were abusing her, only in inuendo, then recanting sweetly
...I almost was willing to let them remove her on those grounds, by that time! It would have been a relief--instead, one sister took her out of here, believing that was happening.
It was terrible beyond belief, what she did here, and their methods of getting her out were hurtful, but the end result was, Mom got moved out of here, and we've been slowly recovering from the damages--some cannot be fixed.
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My dad was diagnosed with dementia 15+ years ago. He is in a care home (thankfully!), which is the best place for him.
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I missed the part where your mother won't go to another gp so my suggestion that you find a new doctor isn't going to be helpful. I think you would do best to have your mother evaluated by an experienced neuropsychologist.
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Primary care doctors should not be diagnosing when they have not referred you to a Neurologist for more definitive testing. Just another case of a PCP trying not to refer to save $$$. Insist on seeing the correct physician.
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Same here. My Mom's doctor is an old folks doctor and the older people just love him. And, he is very smart and a very good doctor. He mine and my husband's doctor, also. I think it is to the point with their age, that they really don't know what to do. He always shakes his head and says Mom just has him stumped! I know what you mean about the "acing the question" thing. I can take her to the ER and she is almost gone and by the time I get her ready to go, she is back to life again, even if she is sick! He always tells me if she needs him to take her to the ER and not to his office, so she doesn't catch something else to bring her down further. I seriously think that he thinks it is just a matter of time thing, but it has been over 2 years since he has been saying this. It is amazing how Mom can answer needed questions to determine something, but her dementia gets worse every day.
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Find a new doctor!
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I have been dealing with this exact situation for over a year now. Mom's Dr. does the 20 questions, she aces the test and he doesn't proceed beyond that. He is a gp specializing in geriatrics. I sent him a couple of emails addressing some of her behaviors, and on her next visit he ask her a few questions hinting at what I had told him, she confirms some of the incidents, but again he took it no further.

Last week (I posted earlier) I left a message asking for a consultation without Mom present since I have dpoa as well as her signature on the hippa info with my name. I know he is not required to talk to me, but it is not illegal if he chooses to do so. That was 5 days ago still no response from him....... She will not go to another gp, so I am stuck.

I am so glad msstone55 posted this question.
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Would it be possible to video her to show how she cannot operate in her own home and then show it to the doctor?
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I agree about taking her to a neurologist. They may be able to run some brain scans to see what is going on. If one doctor isn't taking you seriously, I would say to get a different one who does. A lot of them don't have much expertise in the field of Alzheimer's or dementia, so they only run standard tests and assume if the person passes that they are fine for now. Thank God my MIL had a doctor who was familiar with what to do and what to look for aside from the memory tests. Ultimately, only you know what is going on with your mom because you are always around her. I know you know something is going on with your mom, so I wouldn't stop until I found a doctor to take you seriously. They will be able to put your mom on some pills to help her memory. My MIL went on Aricept for a while, but eventually it stopped working, so she has been off them for months now. Her doctor may recommend Aricept or another drug to help your mom. I have heard both pros and cons about Aricept myself, but it did seem to help my MIL for a while when she was on it. God bless, and I wish you the best in finding a good doctor for your mom. Do they have any who specialize in gerontology in your area? That would be a good person to see too.
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My doctor waited 6 months to start my husband on meds. Finally he put him on only because I insisted. Apparently once a person gets the AZ diagnosis, they are billed differently and can never go pack to previous normal condition. HOpe this helps.
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Ask the doctor why he isn't doing more tests. Some doctors don't test because they know they won't change treatment regardless of a test result (either because there is no treatment or the treatment would be the same). While other doctors order the tests because they know the patient or the family want very definitive diagnosis, regardless of the diagnosis' impact on treatment. See which kind of doctor he is.
But, if you've described your mom's inability to manage even the most basic activities of daily living and he hasn't delivered a dementia diagnosis (or other cause) at all nor any advice about her care requirements and prognosis, then it's time to move on to another doctor.
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Thank you so much. Yes, I was surprised as well...perhaps they think I am trying to have her committed or something, these days you never know, even though I expressed an interest in getting her off whatever meds possible in the hopes of clearing up her mind. It really has been frustrating but I will talk to her doctor about the neurologist, thank you again.
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I'm surprised that's as far as they go in testing after you've explained her situation.

There are many types of dementia, and some of them affect memory first, while others may affect judgment or another type of functioning.

I'd try to get her in to a neurologist for a battery of tests. As one of the doctors for a referral. If he or she refuses, ask you own doctor how to go through your system so that she can be seen by a specialist.
Good luck,
Carol
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