Are there special nursing homes for patients with Frontal Temporal Dementia? - AgingCare.com

Are there special nursing homes for patients with Frontal Temporal Dementia?

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My mom has Frontal Temporal Dementia, and one of the affects of this is behavioral issues. we are looking for a nursing home for her and have been recently denied because of the type of dementia it is. we have 3 weeks before her care givers leaves and have no place that will accept her. she really doesnt have major behavior issues now, but my guess that the facilities are worried if things change. would a behavioral hospital be an option? and if yes, what are the steps on getting her admitted?

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I am a retired health care professional so fully aware of the legal ramifications of the discharge process. When and if a discharge order is placed there is a process and the family does the right to appeal, we've been through this process. As to the emergency room issue, if a nursing home patient is sent to the emergency room and they are not admitted as an "in patient" regardless of Medicare/Medicaid status insurance will not pay in full for services. (Read the fine print) Once the Medicaid resident leaves nursing home their bed can be filled unless the family agrees to pay for the bed or the nursing is kind enough to hold the bed (most states do not have bed holds) If the patient is fully admitted to the hospital for x number of days then insurance will cover in full, patient will return to nursing home in a Medicare bed, then IF a Medicaid bed is available at the original facility the patient can have the original bed back. If not, they take next choice and wait for a vacancy. Complicated, yes but it happens every day and most folks don't realize what to do or how to resolve. The original question that started this post is the issue of placement of FTD patients. The short answer is that there are no designated facilities for this type of dementia, we have a long way to go to resolve this problem. It will take research, funding, legislation and education. Until the media gives this disease the same coverage as other well known diseases there will be no progress for our family members. As to the medication issue. Many of the off label drugs used to "control" behaviors of dementia patients create/exacerbate the already serious physical and mental health behaviors. If you have a good Dr. and nursing home staff that tracks the patient for any changes while on the drug and makes the necessary adjustments to the medication then I have no problem with medication administration. Many facilities arbitrarily begin drug therapy the moment a negative behavior begins. The mortality rate for "blackbox drug use for patients over 80 yrs of age is significant. Some of these drugs may include: Haldol, Risperdol, Geodon, Zyprexa to name a few. If used incorrectly meaning the wrong dosage or in patients with contraindications they can have fatal consequences, but some nursing do use these medications to "control" patient behavior.
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My mother got kicked off a nursing home unit because of her dementia behaviors, but they moved her into the locked dementia unit on campus. Different places are just not setup to handle any & everything.

Look into places that can handle continuum care all the way up through hospice and death. Look at memory care sites because they are setup to handle the particular difficulties with dementia - all of them.

Personally, if I was in constant motion I would want my kids to approve medication to settle me. That's just me though. It sounds exhausting for patient and caregiver.

If a nursing home that takes Medicaid tries to discharge a patient because of dementia behaviors, that doesn't sound legal to me. They can't just dump old people on the sidewalk because their disease is progressing. That sounds like bad facility management and I would also work with the Better Business Bureau too.

And just because they say they are discharging does not mean you have to show up and pick her up. DO NOT do that and assume responsibility. Let them discharge her to the emergency room and explain to social services why. Or if they really do turn her out on the sidewalk, call the police and APS to report a vulnerable adult/elder abuse by the facility.
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Have been dealing with this same issue for a number of years with my mother who is now in a nursing home. State agencies, Drs, nursing homes, Alzheimer's Assoc., FTD Assoc, etc have no viable answers, until FTD has the same media attention as Alzheimer's families will continue to struggle to find quality care for their parents with this horrible debilitating disease. I'm living the nightmare as I write this. My mom's nursing home took her as a private pay with full disclosure of the diagnosis, she is now on Medicaid but still paying a large liability combined with Medicaid...due to escalating behavior and their inability to manage they want to discharge her. Discharge to where ??? They've now reverted to falsifying medical records, changing medication without my consent, not giving full disclosure to the psychiatrist as to my mom's behaviors, not properly reporting "incidents", the list goes on and on. Reluctantly I've engaged the assistance of the state, as well as the BOH, a private attorney, the local media and a private attorney.
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Gal, My Mom is a handful and I keep her at home because of her inability to stay put without being belted down to her wheelchair. She is in constant motion and into anything she can reach or grab at. I have been here at home with her for 5 years now. her new high tech wheelchair is a lifesaver as it has a headrest, and reclines, and has a huge tray to keep her from leaning forward or over the side of the chair.
When she was in rehab a few years ago, they wanted to drug her up to keep her"safe". But they really wanted to "chemically restrain" her because they could not legally even use a lap belt on a wheelchair to keep her safe. She is beyond doing anything for herself, but is still in constant motion from the time she gets up until she goes to bed at night.
I have to hold her down when toileting and washing and dressing her, as she will try to get up numerous times a minute. It's like she knows she has to do something or be somewhere and can't stop herself from trying to get to whatever, constantly. It would not be conducive for her to be placed anywhere without them drugging her silly to keep her safe. They don't have any one on one staffed facilities here.
People like our mom's are a definite liability to them!
Jeanne, once again, thanks for the link to this type of dementia! I am even more confused about the PD diagnosis than I was before, These symptoms seem to fit Mom since day one! the rigidity of muscles with PD like tremors sounds more like Mom. And her left side is the weak one. When she is tired or stressed, the left arm and leg are just like stiff sticks of wood! And her entire body gets stiff like a board when she is stressed out.
I guess I will have a lot of questions for the neurologist at her next appointment! I don't think there would have been a lot of difference in her treatment, but it will be nice to know why she does some of the things she does.
The behavioral and language difficulties and constant rubbing and patting, etc. all sound more like this kind of dementia too. Guess I was so busy keeping her out of trouble all these years, that I just took it for granted that the doctors were right.
Gal, it will take a special place to keep mom without drugging her up to keep her out of trouble. Staffing is never really what it should be for the clients to get the proper care. The CNAs that do most of the work in facilities are very good and do their best, but their hands are tied when it comes to really helping. They are too busy caring for way too many patients during their shift.
I hope you can find some kind of solution. You might want to check with your local senior center. There is always a person on staff that will have all the pertinent information necessary for all issues related to seniors. At least it's a good place to start for finding local agencies that can help you. Good luck!
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Have you had contact yet with The Association for Frontotemporal Degeneration? I notice that they have a helpline. google. theaftd.
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The doctor wasnt much help, she was great in the beginning, but once my moms condition worsened and we called her several times after hours because either a new prescription she gave her was too strong, or new meds were making her worse, she now pretty much doesnt return our calls or leaves a message w/ the receptionist for the next time we call back. We've been just having bad luck lately! :(
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Oh, how heartbreaking! Have you talked to the doctor who diagnosed her?
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