Brother with dementia and behavioral issues

LaHenz60

Hi, my brother has early stage dementia (I am his POA) and he just recently got removed from his memory care nursing home due to some bad sexual behaviors. He is currently in the hospital (been there for 2 months) awaiting another placement which is very difficult. Has any one here had this same issue and what kind of help did you get for your loved one?

He had a neuropsychological evaluation done and it is is obvious that he doesn't know what he is doing, but no one will give him the chance. What he is doing is very bad, I know, but who can help him? With these behaviors he cannot stay with family, as he needs to be watched all the time. I am willing to let him go out of state to find the help he needs. He is currently on Medicaid and the hospital cannot let him go until they find him a place. I have had threats from the hospital that he will be thrown out because he is healthy otherwise and only 65 years old, but his case worker assures me that he cannot be removed from the hospital until there is another place.

I am so shocked that there is no place for him to help him. I have searched and searched online to find answers, and all I see is that this is a real problem, but no one offers solutions.

Thank you to anyone that can help!

housefinch

Hi, that sounds very difficult. Does he have a diagnosis of early onset dementia (before 65) rather than early stage dementia? I’m wondering if anyone told you a cause, such as Lewy Body vs Alzheimer’s vs vascular vs frontotemporal dementia. It’s possible they haven’t been able to tell. Has he seen a geriatric psychiatrist for medication management to see if that would help the behavior? That is going to be a placement challenge. I don’t think Medicaid can be transferred between states—-you need to qualify in each state separately. Has he had behavior severe enough to justify admitting him to a geriatric psychiatry inpatient ward? I can’t tell if he has been hospitalized at a regular medical ward with a 1:1 sitter for 2 months from your post. I’m incredibly sorry—-how distressing for your family and awful it must be for him. @M1 @Marta @Iris L. @harshedbuzz might have ideas.

M1

Welcome to the forum but i am so so sorry, acting out sexually is actually pretty common and a huge barrier to placement. Housefinch is correct that Medicaid is state-specific and that is another limitation. I would ask the same thing, is he on a psych ward? It will take pretty heavy medication management to tamp down the behaviors. You could even ask for an endocrine consultation regarding hormonal manipulation, it's not unheard of. Keep us posted, this is a very supportive place.

Iris L.

I did a search on this board for sexual behaviors and came up with several good threads with links to outside articles. I suggest you read as many threads as you can on this common situation. This will give you a vocabulary to work with. Unfortunately, many of the professionals that work with older adults and PWDs will be unfamiliar with what to do about this situation. He needs medical management, also a good diagnosis, because many common medications may make this situation worse in non-Alzheimer's dementia. Figuring out his triggers may help. First, find a knowledgeable geriatric psychiatrist. If you read a lot of threads, you will know almost as much as the professionals in managing this behavior. Please keep us updated.

Iris

LaHenz60

Thank you for the comments/info. My brother was placed in a memory care facility about 3 years ago. This was during the beginning of Covid so seeing anyone was almost impossible. His behavior at first was violence (breaking things) and he was delusional. He quit eating, going to work, taking meds and bathing. Another thing about my brother is that he is special needs and went to special ed classes, etc., but he was always able to go to work, drive and take care of himself fairly well. He couldn't take care of his finances, etc., so my mother or I helped him with that.

He got better while at the memory care nursing home and the only care he had was a PA that managed his medications (of which they put him on many) and he never really got a diagnosis until he was placed on PACE (a form of Medicaid) and they did diagnose him with early onset dementia. The nursing home called me one day and said that he was having a sexual relationship with one of the other residents (who also had dementia) and I told them I did not want that to happen. They assured me that they would keep an eye on him and they said that this happens a lot there. I trusted them and about a year later they called me and said that he was getting much more aggressive and also groped some of the staff. His PACE provider put him on various medications (even on a female hormone shot) but he wasn't on it long enough to even give him a chance.

They called me one day and said that they had even called the police because of what he was doing and sent him to the hospital and kicked him out. From what I read from the nursing home he wasn't raping women and hurting them, but just trying to fool around with them. Some of this could have been consensual because he would have women coming in and out of his room while we visited him all the time! One time one woman even got into his bed! The nursing home released him 2 months ago and still no placement. They have a camera on him watching his every move. The DA is looking at his case and hopefully they will drop the charges due to his dementia.

In the meantime, no one has tried to help him while he has been in the hospital, as far as trying another med, seeing a psychiatrist, etc, He did have one test and it showed that he had very little cognitive skills and didn't know that what he was doing was wrong. His case manager said that no PACE facilities would take him due to not being equipped to help this kind of behavior. So his case manager is looking into Medicaid facilities, but there has been on rejection after another.

I am at a loss waiting and waiting and in the meantime my brother is very confused and so far has been good at the hospital, thank goodness. I don't really know how long that will last. I just can't believe that there is no place for him! He can't be the first one that this has ever happened to.

Thank you again for your information and insight. If there is anyone else that has had this issue, please let me know what you have done.

housefinch

I would definitely call the Alzheimer’s Association hotline and explain the situation in detail to see if they have any recommendations. He really needs a geriatric psychiatrist to evaluate him and manage his medications (to give him the best chance for placement) and probably a very careful evaluation by a neurologist at an academic memory center to know what disease he has. Also, it’s possible that genetic testing might help everyone understand his underlying issues and guide the medication management. If he has a specific underlying genetic disorder, there may be certain medications that work better than others. I can’t promise that, but I’m heartsick reading this whole post. I have a child who has autism & an intellectual disability and these people truly need lifelong wraparound care coordination and understanding. The DA needs a psychologist who knows his childhood diagnosis to put everything into perspective. I know this is all unlikely to happen and the most pressing need is a safe living situation. But what a tragedy for you, him, and your family to endure. Hugs and best wishes to you.

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SDianeL

Definitely get a consult with a Geriatric Psychiatrist. They are the best ones to manage madications for behavior issues. My DH's Geri Psy has done more than any other doctor. Can't they give him something to curb his sexual desires?

harshedbuzz

@LaHenz60

This is a really difficult situation. I am sorry you find yourself trying to find solutions where none of them are satisfactory.

Absent the sexual behaviors, you are already up against two biases that limit your brother's options for placement. The first is that he's a EO male which goes with having a reputation for sexual behaviors and enough physical strength to be dangerous to residents and staff. And secondly, Medicaid limits the pool of options although the facilities that are 100% self-pay tend to be the ones who cherry pick their populations to favor the pleasantly befuddled.

I know this feels unfair because it's unclear your brother really knows what he's doing, but they really can't tolerate him being handsy with staff. My newest SIL's dad had many of the behaviors your brother does. Larry was a many times decorated WWII veteran and too old/frail to physically harm anyone, but his misogynist streak persisted into dementia and he had a tendency to grope. He was asked to leave at least 2 facilities. SIL managed to get him into a state-run SNF for veterans which seemed more matter-of-fact about acting out of a sexual nature. Plus there were very few women aside from the staff. I found this to be the case at my state's veteran's home as well. If he is a veteran, that might be an option.

Also, in MC the notion of "consent" doesn't really exist as it requires a degree of cognition most don't have at this point. The facility has an obligation to the very vulnerable women who live there. The women coming into his room were likely "shoppers" participating in a scavenger hunt that exists in their mind.

Is he already in a geriatric psych unit? If not, I would push for that. A geriatric psychiatrist is the specialist for psycho-active medication and is your best hope for finding a cocktail to dial down this behavior. You mention him being on a lot of medications-- sometimes this is the better approach as combining meds can often allow lower doses of each to limit side effects. That said, sexual symptoms can be really challenging to control. My dad was 20 years older than your brother when he went through this phase of being obsessed by all things sexual and talked non-stop about his imaginary exploits and plans. The man was on 3 different medications known to have "sexual side effects". He was already on a hefty slug of Prozac and Lupron (androgen-deprivation therapy for prostate cancer) when we added Seroquel. It did tone things down a bit and with time this phase passed. FWIW, dad was refused residency at mom's first choice MCF because of this behavior. My first choice, which was suggested to me by folks in my IRL support group, did accept him.

Often a geri-psych unit will have a talented social worker who is knowledgeable about options in the area and can sometimes make arrangements where other discharge coordinators have failed. This was how my SIL found the place for her dad.

Does your mom have any diagnostic paperwork from your brother's childhood or adolescence that might include a diagnosis or even conditions that were ruled out? Your brother would have been about 17 when IDEA (Individuals with Disabilities Education Act which contains federal mandates for special education including evaluations) was enacted. He's right on the cusp of this, so this kind of paper trail may not exist for him. If he has some special need that can be documented, there might be a possibility for placement in the early stages of dementia in a group home or even an adult foster care situation. I have a friend whose son with ASD, T1D, and mental illness is in an adult foster medical group home which has worked well for her family.

HB

M1

I second the suggestion for androgen deprivation therapy- sounds like he might have had a brief stab at this in the past (you mentioned female hormones) but again it's going to be an endocrinologist or urologist most familiar with this and i would push hard for a consult if it hasn't already been done.

LaHenz60

Thank you for all your responses. We are still waiting for a place and in the meantime, my brother's behavior is that he becoming very restless. He wanders out of his room quite often, but there is an alarm that goes off each time he does that. He refuses his meds at times, refuses to let them do vitals, and will not eat or take a shower, etc. I had an online meeting with two of the case workers, hospital staff and someone from the Dept, of Health. They came up with a few ideas and were very helpful, but they admitted that the situation is not looking very good. I asked if this has ever happened before and one of them said that they had one similar patient and he was in the hospital for 10 months, but eventually died. My brother's health is excellent and I really doubt that this would happen to him. I asked if they could somehow help him with more tests/meds so this could not happen again, but they said that they cannot do this. So crazy! If he had any other disease, curable or not, they would do everything they could to help him. Instead they just let him sit there every day, refusing to take his meds, no doctors to check on him, etc.

My mother, who is deceased took my brother, back in the 1960's to be tested for what she saw as being a slow learner and also because he flunked kindergarten. He was eventually placed in special ed classes and did graduate from High School. They labeled him "mentally *$%&," and that what they found was that he had this from birth. There are no records and I have no idea where she took him for the tests. Even if I knew, most places are only required to keep records for 7 years.

I am going to see a lawyer today to see if I have any case whatsoever. I still feel that the last nursing home and his provider handled everything incorrectly. They just basically threw him away and did not want to help him at all. I realize that they had to make sure the other residents were safe, but they just labeled him as a "sexual predator," never taking into account that he as some form of dementia causing this. There is no documentation from the nursing home about any of this and it could have all been consensual.

He did just recently go off of private pay and went to PACE (medicaid) and he was paying much less than before, Do you think that this could have been the reason they let him go or at least while he was private pay that they just let this happen so they could get more money?

Well, that is the rant for today. I am praying that this lawyer will have some insight and help somehow. I will update when I find out, Thank you all again,

housefinch

I don’t know what state your brother is in (US state) and don’t want you to feel you need to post that here. Some additional thoughts I had for resources might be to try calling:

(1) The Arc

https://thearc.org/

(There will be a chapter for his state & possibly his county where his hospital is located)

(2) National Disability Rights Network - each state should have a member agency

https://www.ndrn.org/about/ndrn-member-agencies/

I have no idea if these organizations have suggestions for you, but maybe they can point you towards advocacy organizations

harshedbuzz

@LaHenz60

When I suggested records, I meant something your mom would have been given. My son has high functioning ASD along with some "sides". I have kept some of the important paperwork in the event either of us need to advocate for him in the future and have to establish that the disability pre-dates adulthood.

@housefinch 's suggestion to contact The Arc is an excellent idea. A friend of mine was guardian for an uncle with an intellectual disability who engaged in some inappropriate sexual behavior that resulted in a trial and it was a nightmare. He was able to get his uncle a placement but it did take some time. He was on Medicaid as the money his mom left him was in a Special Needs Trust designed to protect his eligibility for government assistance.

HB

LaHenz60

I went to the lawyer and there was nothing she could do and she only offered a little bit of information. She said that he cannot be removed from the hospital (he is still there) and that if I wanted to get a guardian appointed I would have to pay for it. So basically, I am stuck, my brother is stuck and we await a place somewhere, sometime! When I talked to the people at the hospital and asked that he receive some psychological tests, they stated that they cannot do this and would just take care of his basic needs.

His behavior is still bad at times with the staff and often refuses to take a shower, trim his nails, take his meds, and tries to get out of his room, etc. When he doesn't take his meds he tends to get worse and usually sick. I know they can't force him to do these things and I am worried that he will get worse. Some of the staff treats him like he is not worthy of good care, but some of them have compassion.

Thank you for the resources and I will check into them. Right now I feel like I am in a fog and take it day by day, as all of this is confusing to me.

Thank you.

JeriLynn66

@LaHenz60 is the Hospital Case/Care Management department assisting you at all?

LaHenz60

https://alzconnected.org/discussion/comment/187988#Comment_187988

Yes, but they are at a loss also. I got a call today and there might be a nursing home available in another city about 80 miles away. Of course that involves him maybe having to be assessed for Medicaid or Pace, which I am not looking forward to. I am not sure what is all involved but will find out soon. I wish it could have been in the same city but it will have to do.

harshedbuzz

@LaHenz60

I'm sorry it's so far.

I wonder if you'd be able to move him closer after a period of time without further behaviors reported.

HB