My husband has frontotemporal dementia, has been removed from a memory care facility, and is on the verge of being removed from another. What to do?

Jane61: He mustn't be released from the psychiatric hospital until his medication regimen is straightened out.

Talk to social services and/or case management at his current hospital to help you with his long term placement.

I am in similar situation with my mom. She is on new meds after becoming violent with staff and with my dad, who is sharing a memory care unit with her and is himself in hospice care with dementia.

Recently she became fixated on suicide and talks about that constantly. My fear is that we will have to find a new place for her is they can’t get her calm.

Can someone explain how hospice care is determined? My dad got weak and lost over 100 pounds, which is how he ended up in hospice. Mom is physically pretty healthy and 78. She is weaker today than in the winter, but it’s hard to tell what is caused from the meds and what is the result of dementia. She is in constant terror and distress and is wearing people down where she lives. Her dementia is vascular and she has lots of areas of bleeds in her brain.

It seems to me like everyone is waiting for my dad to pass, thinking that the stress of watching dad die is what is affecting my mom the most. They have tried separating them, but that really stressed them out - 58 years of marriage.

my husband sadly has alzheimers but also displays violent and aggressive behavior at times which was the reason i reluctantly placed him in a facility. he had some stays in the hospital where they tried to get him stable and was then placed in a facility that was supposedly the 'best' at dealing with violent behavior. he didn't last two weeks before sadly returning to the hospital. long story short he is now placed in a small family run assisted living facility. this is a house that has been converted. my husband is upstairs and whilst there are two other residents they mainly stay in their rooms and if they are around all seem to get along fine. i will add the other two residents do not suffer with dementia. so my husband really has the whole of the quite large upstairs to himself. he also has a 24 hour carer. since being placed there 18 months ago - he no longer wants to wander off - which was another issue when he was at home. even with carers and trying various 'diversional tactics' he was very determined! whilst he is perfectly free to leave the facility he seems to have acclimated to his new home well and doesn't seem to want to wander off. he does still display violent and aggressive behavior at times however the carers are great at managing him. he is also not currently on any medication (long story!) and quite honestly i would prefer he not be as these outbursts are not overly frequent and do not last very long. i know some medications hasten dementia plus i do not want him to be medicated into submission which i understand sadly is often the only way to deal with dementia patients with behavioral issues. if you can find maybe a smaller run unit where they are more willing to take the time to work with your loved one that may be the answer. a lot of the larger places do not want to take someone 'disruptive'. a smaller facility may be more willing to try with your husband. i wish you lots of luck anyway.

My mom was kicked out of memory care. She also was in psychiatric hospital for med adjustment a few times. Nothing seemed to work. She was finally kicked out and was on hospice at the time. Hospice recommended a much smaller care home, homey feel to it rather than institutional. All residents had been kicked out of previous facilities.

She did much better in the care home. Yes, she was heavily medicated and zombie like. But, they had tried everything including a private caregiver to keep her engaged, entertained and busy. Some there is just no other way. Mom did much better in the care home.

My suggestion is to get him evaluated for hospice. Look around for care homes. The care in these is much better as there is higher caregiver ratio, at least in the case of the home my mom was in.

There are glimpses of light. I found this online about a behavioural management approach called "Positive Behavioural Support" (gosh, they really go to town on these names, don't they?) I'd like to read the whole study, but it's £35 just to download a pdf and I am feeling extremely poor at the moment.

Now - it doesn't change everything, it's about small victories and gradual improvement. But the article also has links which will take you to other FTD groups for more specific advice. Anyway, here's the abstract, read on...

Original Articles
Positive behaviour support in frontotemporal dementia: A pilot study
Claire M. C. O’Connor
,Eneida Mioshi,Cassandra Kaizik,Alinka Fisher,Michael Hornberger &Olivier Piguet
Pages 507-530 | Received 15 Apr 2019, Accepted 09 Dec 2019, Published online: 03 Jan 2020



ABSTRACT

Frontotemporal dementia (FTD) is a progressive neurodegenerative brain condition clinically characterized by marked changes in behaviour that impact the individuals’ relationships and community participation, and present challenges for families. Family carers of individuals with FTD find apathy and disinhibition particularly challenging leading to high levels of stress and burden. Positive behaviour support (PBS) as a behaviour intervention framework has never been trialled in FTD. This pilot study examined the functional basis of apathetic and disinhibited behaviours in four FTD dyads and explored the acceptability of a PBS intervention. The PBS programme was provided by an occupational therapist in the participants’ homes. Measures collected at baseline and post-intervention (M = 3.9 months) assessed: function of behaviours, challenging behaviours, and qualitative outcomes pertaining to the acceptability of the PBS approach. PBS was an acceptable intervention for all four dyads. “Sensory” and “tangible” were the most common functions contributing to the maintenance of behaviour changes, and aspects of apathetic and disinhibited behaviours improved following intervention. This study demonstrates the acceptability and potential benefit of a PBS programme to provide support in FTD. A more rigorous trial will be an important next step in developing improved services tailored to the needs of this unique population.
KEYWORDS: Positive behaviour supportFrontotemporal dementiaChallenging behaviourFamily supportFamily carer

This is the link to the abstract on PubMed (same article), which has more information at the bottom of the page about links and resources: https://pubmed.ncbi.nlm.nih.gov/31900056/

My sister was diagnosed at age 47-48 with frontotemporal dementia at a major medical research hospital; was told she probably had 5 years left. She had all the same symptoms your husband does. She originally was accepted at assisted living; was thrown out of there because of violence towards other residents within about a year. One of the aides told me she had pushed down another resident and she had suffered a broken arm because of it. She was accepted at another facility, but was confined to her room when other patients were out and about and she had to have 24-hour care provided by another caregiver while living there. This only lasted a few months. We were paying more than double the cost of staying there. She wasn’t there long before they told us we’d have to find another place for her, again because of violence. She would try to choke anyone who came near her, including me. She also emptied all her dresser drawers and removed them, and just destroyed her room throwing things around. Mind you, both of these places were memory care facilities, but they cannot keep a resident who is a danger to other residents. Also keep in mind that she was lots younger and stronger than most other residents, although she was a small person herself. You can see what a danger she could be. We finally did find a good psychiatrist who saw her in the third facility and got her meds under control. She lived the remainder of her life there until it was time to go to hospice, but she was a zombie. The one thing I have to thank God for was that she only lasted 2-3 years after diagnosis. Prior to her illness, she had been a highly intelligent, highly educated business woman at a top level within her field. She would have been appalled at some of the things she had done and what she had become. My point is you can’t stop what is happening, but the good news is that the hospital can’t release him until he has a place to go. Ask for a social worker at the hospital or at your county level to help you place him once he is controlled by medication. They just have to find the right combination of drugs to help control him. His psychiatrist at the hospital may also have placement ideas for you. Best of luck to you in your search!

The brain of these unfortunate people who suffer from fronto-temporal dementia is completely disconnected with the outside world. It's impossible to reason with them. Furthermore, the areas of the brain that filter and control primitive instinctual impulses are completely lost. Those suffering from this type of dementia, have been already converted them into wild zombies. Psychotropic medicines is useless in fighting this dementia, but at least, they can make them gentler zombies. This is the naked truth about fronto-temporal dementia without any effort to try to sweeten it. Unfortunately, medicine has no answer for this problem.

He only threw lamps and not also urine and feces?

Patients with fronto-temporal dementia have in common, unruly and inappropriate behavior. Very few facilities can cope with them. Hopefully, they will medicate him properly to reduce his intrusive or aggressive behavior. They are indeed a problem in any group care facility. Psychotropic medications can help, but they will keep him overly sedated. That's the only way.

Is he a veteran? If so, try the VA. My friend did that when her husband had similar issues.

He's got to get his meds adjusted and his behavior leveled out for a while BEFORE he goes back to a Memory Care ALF. Violent behavior and throwing lamps and things isn't likely to be tolerated anywhere b/c it's not safe for any of the residents and a big liability for the facility, let's face it. It's the psychiatrist's job to get your husband properly medicated and treated before he's released from the psychiatric hospital so he's not posing a risk to anyone when he's taken in at the MC or a new one. You'll need to find a Memory Care ALF that has a relatively good policy in force about disruptive residents; that he won't be asked to leave after ONE incident; that's unreasonable *unless it's very violent or he harms someone*.

FT Dementia is one of the hardest conditions to successfully treat, that's for sure. Many doctors don't even fully understand the issues associated with FTD, or how to treat their patients at all. It's kind of like we're in the stone ages with regard to brain diseases in general, sadly. :(

He may be allowed to return to the former MC if the psychiatrist signs off saying that your DH is now leveled out on his new medication routine and doesn't pose a risk to others, or something along those lines. See what the Exec Director has to say about what requirements are needed for him to return, and if he CAN return, etc.

I know how hard all of this is, but it's crucial your DH be properly medicated so as to prevent harm for everyone's sake, including his OWN. Living in a state of perpetual agitation is a horrible thing for HIM to endure, so to calm him down would be a blessing.

Best of luck to you.