The following was posted in the Caregiver's Forum. Because the answer is fairly lengthy, and this is a subject that concerns many caregivers we moved it "out front."
Q: What are the primary decision factors when an Alzheimer's patient should be moved from home (with current home health care 3-5 days a week) to a facility? My father is working hard to keep my mother at home, but he is very often frustrated and totally exhausted by the demands of her sundowning behavior, anger and agitation. He has implemented all the precautions he can to keep her safe. However, the entire situation has created a bad environment for both of them.
He has the option to extend the home health care into the evenings, but they would not be permitted to provide the physical restraint that is often required of her current aggressive behaviors. Is it worth waiting out this stage of the illness and keeping her at home, or is it wise to seek a facility where she can still enjoy organized activities, 24-hour care, and professionals trained to care for Alzheimer's patients?
I know the next phase will not be any less complicated, so wanted to find a way that my parents can still enjoy one another and at the same time, she can receive comfortable, professional care both now and into the final stages of the illness.
A: I believe you have two different things going on here, and if we don't separate them it will hopelessly cloud your options.
The first, and most important to deal with right away, is the fact that your mother is apparently sometimes angry and agitated to the point where you and your father believe she needs to be restrained so that she doesn't hurt herself or someone else. Just imagine the inner pain she must be feeling to act out in this way, which I'm sure is not the way she behaved when she was healthy. Just as we treat physical pain because it would be unconscionable to allow someone to suffer from a pain we can relieve, we should treat emotional pain as well.
If your mother has not been evaluated by a psychiatrist experienced in treating dementia, you should have that done immediately, on an emergency basis if necessary. If your mother is out of control and threatening to physically hurt herself or someone else and you believe she should be restrained, the best option is for your father and you to remove yourselves from the room and call 911 immediately. Trained emergency personnel can usually get control better and faster than a family member. They can then take your mother to the emergency room for professional evaluation and treatment.
Be sure that you remove all knives, scissors, and any other obvious potential weapons from the house TODAY, if you haven't already.
If her behavior is not yet that extreme, yet is concerning you this much, you still need professional help. If her own doctor doesn't see the need, look elsewhere for a geriatric psychiatrist affiliated with a hospital. This kind of behavior is most often successfully treated on an inpatient basis. If you need to document what your father is trying to deal with, beg, borrow or buy a video camera as soon as you can and discreetly record what's happening.
Until your mother no longer presents a risk to other people, no good facility will accept her. You have already discovered that the home health agency cannot manage her when her behavior is potentially dangerous. The homecare agency cannot use restraint, nor should they. Neither they nor your father are trained in giving care to someone as difficult as your mother appears to be.
If your mother's behavior can be successfully managed,, then your hope for care at home could possibly be fulfilled. If you and her treatment team decide that she would be better served in a dementia facility, you will have more options to choose from if she is not aggressive. The way things stand now, you don't have that choice. The most compassionate thing you can do for both your mother and your father at this time is to seek treatment for your mother's pain, so that you all have better choices for the future.
Don't be surprised if your father resists the idea of psychiatric hospitalization. But, given what you described, it sounds like that would be the most effective thing to do. The trick is to find a good geriatric psychiatrist if she can't be admitted for treatment through an emergency room..
If you can't get a referral through her primary doctor, and you don't know anyone to ask for a referral, "Find a Physician" on the Medicare website is an option of last resort. There you'll find a more-or-less up to date list of all the psychiatrists participating in Medicare. You can search by general area or by ZIP code. There is a "Geriatric Psychiatry" option, but you will find that many psychiatrists who are good with elderly people do not list themselves in this section. You'll find a much greater selection under "Psychiatry." It will then be up to you to dig deeper and check whether they do much work with elderly people.