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Hi Everyone, I wanted to ask if you know how dementia is properly diagnosed and what your experience has been. My mother in law who is wonderful has been in a slow, steady decline with dementia symptoms for the last 8+ years, with paranoia about missing items, not bathing or changing clothes, and episodes of rage and aggression. She's very resistant to going to the doctor, and we don't live in her state, so it's been really hard. Last December we finally were able to have her see a geriatric specialist, but the doctor just did a quick, basic cognitive test in the office, and per her notes, concluded that there was no evidence of cognitive decline. We've seen for years that this isn't the case. Just this morning my husband's brother sent us a video where she was in a manic, physical altercation with her husband, in a rage, and kicked him out of the house. He's 84. I'm now looking for another geriatric specialist for her, but I want to make sure they do a thorough assessment and understand what's been happening with her for so many years. We're concerned and very frustrated searching for help.

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I would find a neurologist and have them do a brain scan and evaluation for Alzheimer's. Those symptoms sound very much like Alzheimers. My sister has Alzheimer's and she is very good in the moment at having the doctor think she is better than she is. The scan is important to see if it is Alzheimers.

Good luck. It is very difficult to manage when you are far away.
Gretchen
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This is a very difficult situation to navigate through, I've been through it myself. Sometimes with a resistant person you have to wait until something happens that will bring other parties into the situation. In your case the rage and locking the husband out of the house are more than enough reason to involve the authorities and deem her to be a danger to herself and others. Insist they take her to the hospital and admit her to the correct unit be it a psychiatric hold or more often with dementia just admit her and run a battery of tests. Don’t let them release her as she is a danger to herself and others and get the social worker involved to determine the next course of action. In the meantime contact a neurologist as well as the assisted care facility to make sure they have room for her.

Also the POA gives your sister in law the power to make the medical decisions for her. While you don’t want to force anything she does have the right to make these legal decisions. The health and safety of her 84 year old husband is of critical importance too.

I know how hard this is because my mother has dementia and lives in a distant state.  I wish you luck and if you like post back and let us know how things turn out.
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Take your mother-in-law to a neurologist. Brain MRI will be properly viewed.
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I'm dealing with the same problem. The quick assessments aren't helpful. My mother is still well enough to draw a clock and remember 3 out of 4 words after 5 minutes. Those tests cannot evaluate major behavioral changes such as paranoia and aggressiveness. This aggressive behavior is what the family or caregiver sees when living with a demented person. My mother can manage to appear somewhat normal at a doctor’s appointment. I'm trying to get her an appointment with a geriatric physician. A regular PCP may not be good enough to understand elderly behavior and signs of dementia independent of the routine checkup and tests. A geriatric physician will be able to better guide you in the right direction.
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againx100 Nov 17, 2024
The tests are definitely lacking.
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I see so many responses suggesting an MRI for a proper diagnosis. There’s absolutely no way we can get our mother to go to ANY appt let alone an appt for an MRI. Just will not happen. My mother was the queen of Dr appts & meds prior to dementia, but now? No. She barely leaves the house and we have to lie each and every time we need to. While we are out she asks to go back home every couple minutes. Her PCP has prescribed dementia meds (she refuses to take, says she’s never taken a pill her whole life) so with that prescription does that itself mean the diagnosis is on her chart?
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Igloocar Nov 19, 2024
A neuropsychologist can do the cognitive assessment. It generally lasts a few hours, with breaks; if the time is too long for your MIL, it will be adjusted You don't need an MRI or a neurologist to request this testing, and the neuropsychologist may or may not need a referral. She/he will also talk with your MIL (and you, if needed) and will know to be very gentle. The neuropsychologist wears street clothes and although probably possessing a doctorate, he/she should be ok with not being referred to as a doctor if it would help with the situation.

I realize you've said it's difficult to get your MIL out of the house, but you are planning to try to have her seen by another geriatrician, so perhaps you can get her to go see "someone you know whom you want her to meet"?? Based on the results of this testing, the neuropsychologist will make an appropriate medical referral, possibly to a geriatric psychiatrist who specializes in dementia. If this is important to know, the exam is covered annually by Medicare regardless of whether it is done by a physician.

BTW, an MRI alone is often not enough for a diagnosis of a specific dementia. It needs, as a minimum, to be a volumetric MRI: to show the size of different brain areas compared to what the size is in a normal younger adult. If for example, the hippocampus--the primary area involved with memory-- is much smaller than that of a normal adult, that suggests the cause of a memory deficit. But to simply get a dementia diagnosis, an MRI should not be required. In the fairly near future, there may be widely-available blood testing and cerebrospinal fluid testing for Alzheimer's, but not quite yet.
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Please consult a specialist and not people online that have had very personal experiences. I worked in the dementia memory care unit. Sometimes the people seem normal and then they go off the deep end. Your mother might be very frustrated with your father might not be dementia she could’ve always been that type of personality. You just never were aware of it, if you’re mean, sometimes you get meaner when you get old, but it doesn’t mean you have dementia, but it doesn’t mean you don’t. If she can count numbers and look and remember and pass all the tests that she just might be having a personal crisis in her life , it’s hard when you get old realizing that your old and realizing your limitations you get angry. It’s not appropriate to get angry with a person that sharing your life, but it happens. They just need counseling and in the counseling the counselor will be able to detect if she has dementia because she won’t understand what the counselor is trying to do , you don’t know what your father is going through at this time . Perhaps he is egging her on, or picking on her because she forgets things. Maybe she’s too tired to cook because she’s getting older and maybe he’s picking on her and and her anger wasn’t really justified - throwing him out of his own house is just not acceptable. If she wind up alone without anyone there in the house, she will realize that she has made a horrific mistake. I suggest marriage counseling as a cover for the dementia detection. Growing old really sucks. People make mistakes. People are angry with their limitations. She just needs to know how to control her anger perhaps, or understand what’s happening to her in the last phase of her life,.
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Huge thanks to all of you for your very helpful advice and for sharing your own experiences. It's extremely helpful as this is a confusing road to navigate. She had another rage episode yesterday for about 4 hours where her husband had to leave the house. We called the local Psychiatric Mobile Care Unit who went over, but when they got there, she was calmer and basically said she was fine, so they couldn't do anything. We were finally able to make a geriatric appointment for her for 11/25 and I've let them know what's been going on, but we know it will be a challenge to get her to the appointment. Given her condition now, we know she can't stay in the home for long. A year ago we found a terrific assisted living place for her, so it's now time to start the intake process. They live in L.A. and we're in Phoenix, so it's been harder. My sister-in-law is the POA so we can start taking some actions. This is tough, but the AgingCare site and group is such an incredible support - thank you!
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Reply to lpseaton1
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Ask for a referral to a neurologist - a doctor that specializes in conditions of the brain. This doctor can evaluate for dementia and test to determine the type of dementia. There might be some medications to help with her symptoms. Worst care scenario, the doctor can give you an idea of the usual path for her type of dementia over the course of her illness.
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Why is not like there is a cure. Just know they are not all there and deal with it.
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Auntique Nov 3, 2024
May you never find yourself in this situation without having gained some understanding and empathy--this is never just 'something to deal with' (especially taking legal issues into consideration)-- there are always many layers of issues, some organic, some not, but all layer into a Gordian knot of problems and frustrations.
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Call and/or go on website of TEEPA SNOW. She is one of the country's leading experts on dementia. In addition, read her books and / or watch her webinars.

* The 'quick' medical assessment for dementia doesn't really - necessarily - provide you the information you need in terms of mental / cognitive decline. Although, for legal reasons, you do need a medical provider's written assessment that the person is unable to care for themselves / due what is in their best interest.

* I would encourage you to hire a medical social worker to assess the situation and work with your mom on a regular basis.

* Most people with dementia or losing cognitive abilities are resistant to seeing a medical professional.

* At the very least, SHE SHOULD NOT be living alone (w/huband 84). He cannot manage / handle this. Both of them need supervision and/or moving into a facility for either assisted living or in a division for those w more severe memory loss.
- To 'kick out a husband - 84 - due to her behavior is absolutely unacceptable and needs to be addressed ASAP.
- What if she locks him out of the house with the 'shirt on his back' and she goes to bed and forgets what she did? ...
- and will she care what she did?
- What if he get pneumonia --- sitting on the door step all night long ?
- Starts walking and falls and can't get up.

This behavior of hers in how she is interacting with her husband (in a rage, kicking him out) cannot be tolerated.

* What is the husband's brother doing in all this?
Is he supervising ?
visiting regularly?
taking responsibility for care?
Someone needs to step up and manage their needs.

* Do ask Adult Protective Services to make a visit and/or call the hus' brother to discuss the situation.

* If you haven't looked at placement facilities, it is time and/or make other arrangements.

* Get all legal documentation in order.
You/family needs to make decisions on their behalf ASAP.

I would suggest that you/your husband make a trip to visit / assess the situation personally. Clearly, they either need to be moved closer to you / family or other living arrangements need to be made.

If it happens that you cannot get a medical provider to document their (her) cognitive decline - that she cannot make decisions on her own behalf for her own welfare - then the sad reality is that she is on her own and can make her own decisions, even if kicking out her husband in a rage - or causing harm to herself.

Perhaps her husband's brother needs to take action to get him moved out of the house before something 'more' serious happens - although kicking a man 84 years old out of their home is quite serious.

Gena / Touch Matters
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lpseaton1 Nov 3, 2024
Thank you Gena! You're spot on with all that you wrote. A friend told me about Teepa Snow a few years ago, and yep, she's excellent. Everything you described is what we're worried about, especially since the episodes are happening more often now. We're planning to go over to L.A. soon and are determined to get her to the 11/25 appointment. We realize that we're having to start making arrangements for assisted living for her. It's not only unsafe for her, but is affecting everyone else in the home - her husband, brother (who is handicapped), and her son. I really appreciate your helpful input.
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lpseaton1: Your MIL needs a brain M.R.I. ordered by a different neurologist.
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againx100 Nov 17, 2024
These are not always conclusive. My mom's was not. Just said there was age related atrophy. But her behavior told the dementia story.
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Definitely agree with Suzy23
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Your MIL sounds pretty advanced to me. With my dad, we told him the “reason” to go to the dr was his insomnia — he was very motivated to get better sleep as he had been sleeping only 3-4 hours/ night for a few years. The PCP did a MOCA test and said “something was going on” are referred him to a neurologist. That first one did some useless test and found “nothing” but with determination I found a specialist who gave him an MRI and then a PET scan and on the basis of that said he had brain shrinkage and atrophy and brain metabolism reductions indicating likelihood of Alzheimer’s, vascular dementia, and frontotemporal dementia (FTD) and on the basis of behavioral symptoms his official diagnosis was behavioral variant FTD.

To convince him to go the the second neurologist, we had his friend and former colleague take him. He was miraculously cooperative.

This diagnosis plus the DPOA was key to us taking away driving, ending his disastrous handling of finances, and also to getting meds that helped (but did not entirely eliminate) his severe obsessive symptoms. He became less angry and somewhat more docile. But bathing and changing his clothes….he resisted to the end.

I truly wish you luck and all the best with this horrific process.
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Topazz Nov 2, 2024
What is "the DPOA"?
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My Mom did not need to go to a neurologist for her diagnosis. I requested an appointment through her medical portal with her primary doctor explaining that I'm her PoA and need a diagnosis so I can now work legally on her behalf. The doc was happy to oblige (after a full exam). My Mom's 95 and honestly it doesn't matter what kind of dementia she has at this point, which is what a neurologist may be able to tell you. My Mom took a MOCA test as part of a virtual driving assessment through OT (which her primary ordered when she saw red flags at the exam and my Mom was bragging about still driving). My Mom scored 15 out of 30 and also failed the physical reaction portion.

If your MIL doesn't have a PoA then getting her diagnosed before this happens will mean "someone" will need to pursue guardianship or else she will eventually get a court-assigned one.

You will probably need to use a therapeutic fib to get her in for an exam (that's what I did with my Mom). Example: Medicare requires an annual physical in order to continue getting the benefit... or whatever story you think will motivate her to go. Then make sure someone is in the exam room the entire time. Make sure the staff knows the real purpose of the exam ahead of time.

She should definitely be tested for a UTI or any other medical problem that can temporarily create dementia-like symptoms and may have a treatment. Dementia is mostly diagnosed by discounting all other possibilities. A neurologist can do scans/imaging but you'll have to get MIL to cooperate with this.

I agree with others who say the ER strategy may be the last resort, but they do not test for dementia in the ER (and the EMTs won't come over "dementia" since this isn't a "life threatening" emergency). Your BIL will have to tell them she's acting strange and may have an untreated UTI. Once she's in the hospital they will test for this, and it may be possible to have her discharged directly to a facility or to have her held in the psych wing until she complies with meds for her agitation/aggression.
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People have advised us to get an appointment with a neurologist.
So my short answer for you is to get her on a waiting list for a neurologist.

We've been trying for years to get my mother an appointment. Neurologists in our area don't stay long. Hospital nurses have told me the neurology shortage is a crisis. Then we get her on a months-long waiting list in a neighboring city and that provider leaves.
So we managed to get her to complete half of the psychological testing necessary to get a diagnosis from a psychologist. (Around 8 hours.) She refused to complete the other half, and the psychologist gave us his best guess: "some kind of dementia".
We moved her from her house to an independent-living apartment, and when she wandered the halls, we moved her to an assisted living apartment, and recently the director of that facility said she definitely needed to be in memory care, so that's where she is now. It's been a long messy process with lots of arguing and crying. She blames us. She says there's no reason she can't stay in independent-living and we are just stealing her money and being mean.
Whatever is going on with her brain has been going on for at least 8 years, and it fluctuates. She goes from walking around carrying on conversations like a professor, to talking for hours to imaginary faces she sees in the air conditioning vent, cursing me out, and getting dressed in the middle of the night to run away from killers. Not much is wrong with her memory, so I guess its Lewy Body, or vascular dementia, or mental illness. No matter what it is, she is not safe living without supervision and that's bottom line. Mom's safety.

Good luck.
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Reply to BlueHeron
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Others on this site will be able to tell you quick ways to get the process started through a 911 call if MIL becomes violent again. You will not be able to arrange that from out of state so I hope that her husband is able to make that call and get the ball rolling.

If her husband is not willing to go that route your MIL will most likely need a complete neuro-psyche evaluation. A referral from her primary care provider will be necessary.

Hold on to that video! And get your MIL’s husband copies of the Activities of Daily Living and Accessory Activities of Daily Living to fill out regarding his perception of his wife’s capabilities. He can provide them to her PCP. MIL should fill copies out as well; the differences can be very telling.

The PCP will first want to eliminate any possible physical reasons for the behaviors she is exhibiting and then may also require an interim step of an Occupational Therapy visit. Considering your MILs aversion to doctors that’s going to be challenging. It may help if your MIL is told that the visit is just to provide her tools and information to keep her safe in her home.

If the Occupational Therapist thinks it warranted, a referral for a neuro-psyche evaluation will follow. Good luck!
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You would want to ask the Geriatric specialist for referral to Neuro Psyc for an evaluation. If she will "play along" and you are at all interested, youtube has excellent films on how to administer the SLUMS and the MoCa (Montreal testing) yourself. These are the most commonly done ones, the "remember these 5 words later" and the "tell me what animals these are" and the "Draw a clock and set it for 15 minutes past 11 O Clock" and etc.

As far as what TYPE, there are many. FTD (fronto-temporal), Alzheimer's, Lewy's and they all manifest different in terms of some "symptoms". MRI may be useful only in latter stages and the best diagnostics/most accurate diagnostic are, unfortunately, done by autopsy after death. There is no known treatment and dementia is treated by symptoms.

If you go with Mom to the doc ask for this evaluation. You should keep a diary of what you, yourself are seeing on a daily basis. Short term memories, hallucinations, lost items, being lost herself, sleep disorders and etc.

In terms of dementia there is a mass of information online. Use trusted sources such as Cleveland Clinic and Johns Hopkins and etc. or the NIH, Alzheimers.org and so on.
I wish you good luck.
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Reply to AlvaDeer
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Your brother in law could have called 911 during her physical altercation and had her sent to the emergency room via ambulance , for being a danger to others .
Your brother in law could show the video to EMS and the ER etc .

Hopefully they would have admitted her and your brother in law could have told them what was going on , they can test her in the hospital , for cognitve and psychiatric illness . The ER won’t do it. She would have to be admitted to the hospital .
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