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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.

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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Reply to waytomisery
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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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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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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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Reply to Geaton777
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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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Reply to Suzy23
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Topazz Nov 2, 2024
What is "the DPOA"?
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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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Reply to Peasuep
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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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lpseaton1: Your MIL needs a brain M.R.I. ordered by a different neurologist.
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Reply to Llamalover47
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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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Reply to TouchMatters
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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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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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