The risks of an assisted-living facility with memory care - Should I be worried?

Jim32

Hello. Let me start with some background information about my mother.

She is 81 years old.

Three years ago, my mother began having hallucinations. She started seeing deceased family members in our home. First, my father. Then, her parents. Then, her sister. As these hallucinations went on over the years, I reported them to her primary doctor. But he dismissed them as anxiety or depression.

In March 2021, she had a mental episode and was hospitalized for an evaluation. A CT scan showed ischemia and microvascular irregularities. This CT scan and her hallucinations led doctors to conclude that she had probable vascular dementia.

In early April 2021, she went into a nursing home. That home was getting her ready to be discharged to an assisted-living facility with memory care. In early May, she was taken to a hospital because of pain. The hospital discovered that she had fallen down and had broken her hip, and she underwent hip-repair surgery with general anesthesia.

The hip was repaired successfully. Unfortunately, the general anesthesia seemed to worsen her dementia. She developed severe behavioral issues, and she became incontinent. After she recovered from the hip surgery and her behavioral issues improved, she was released back to the nursing home in early June 2021. But she remained incontinent. The nursing home continued to get her ready to be discharged to an assisted-living facility with memory care.

Well, about 2 weeks ago, the nursing home declared that my mother was ready to be discharged to an assisted-living facility with memory care. A certain assisted-living facility assessed my mother and came to the conclusion that she would be a good fit for the facility. I toured the facility and decided that the facility would be good for her. Now, it's time to fill out the paperwork. 

In the paperwork, there is a sheet of paper that supposedly describes the risks of assisted-living facilities with memory care.  Before my mother can move into this facility, I have to sign a different sheet of paper acknowledging that I understand these risks. I have attached the sheet that describes these risks. 

The sheet describing the risks states that, if a resident has sustained a fall prior to moving into our facility, it is likely that he/she will fall again at some point. Well, during my mother's stay at the nursing home, she has fallen three times. The second fall resulted in a broken hip and surgery. 

This assisted-living facility does have motion detectors in every private room. And, every time there is motion in a private room, the staff members check in on the patient to make sure that the patient does not fall. Even my mother's current nursing home does not have such motion detectors. 

Also, the sheet describing the risks states that there is a risk of residents wandering from the facility's premises. Wait a second! This is supposed to be a locked memory-care facility where the residents can not get out. I understand that the residents can wander from their rooms and through the halls, but they can also wander away from the entire facility? 

And then there is the stuff about skin breakdown. I am assuming that "skin breakdown" means something like bed sores. 

So, what's going on here? Do these risks exist in every assisted-living facility with memory care? Would every facility give me such a paper describing risks? Or is this particular facility simply trying to cover itself legally for providing substandard service? 

Any help would be appreciated.

towhee

Hi, Jim32, welcome to the boards. You asked if the risks of falling, wandering and skin breakdown exist at all facilities. Yes. They do. Facilities differ in how they handle these risks, some do better than others.

Do facilities all require you to sign a form stating you understand the risks? I think most do, I know that two sets of paperwork I filled out had the fall risk and wandering stated, the skin breakdown is new to me, but it has been a while.

Are they trying to cover themselves legally? Of course. Some people sue quickly and lawsuits are expensive even if they are not won.

Does it mean they have substandard care? No.  

To determine their quality of care you have to ask other questions and look for information in other places.

States inspect AL/MC and keep records of complaints and incidents. In some states these are online and available to the public. Usually the facility will have a copy of their last inspection. Unfortunately, due to budget contraints these are not as frequent as one would like.

You can contact your local long term care ombudsman, they usually know if there are significant problems in a facility.

You can talk to the facility and ask what their preventative measures are. For falls, do they keep areas uncluttered and reduce trip hazards wherever they can. Look at the floors next time you go, see if there are any raised areas between different types of floor. Will they work with you to see why your mom might have fallen, will they allow a bed low to the floor and floor mats if a physical therapist recommends it. What is the staffing level at night? I looked at eight different AL/MCs and only one would allow a motion detector in a residents room if the doctor required it. The manager of that one said that they did not like the detectors as "They led the family to have an expectation of safety". At night one CNA was responsible for 15 residents. If they were working with one they could not answer an alarm for another.

For wandering, ask for details of how their security system works.

For skin breakdown, ask what their prevention program is. Usually it is based on nutrition, vitamins, keeping track of a residents weight. Making sure a person does not stay in one position for more than a couple hours, and weekly skin inspections of anyone considered to be at risk. Skilled care usually does a better job of this, but MC should at least monitor weight. 

Do they have a nurse on site?

ALs differ a great deal in the amount of physical care they provide, you really do have to ask for details.

Wish you well-

star26

The wording in this document makes me wonder if this is an Assisted Living facility that accepts people with dementia among their assisted living residents, or if it is a true Memory Care facility?  When you toured, did you leave the Assisted Living portion and then enter the locked Memory Care wing?  They should have appeared as two distinctly different sections with separate dining rooms, separate activities, different staff, and as you said, locked doors with alarms and 24 hr supervision in the Memory Care section. If your Mom needs Memory Care with the locked doors and extra dementia support and staff training then I'd look for "Memory Care" instead of an "Assisted Living community providing dementia care" that "does not provide continuous monitoring".  

Jim32

star26 wrote:

The wording in this document makes me wonder if this is an Assisted Living facility that accepts people with dementia among their assisted living residents, or if it is a true Memory Care facility?  

Jim32's post begins here.

star26, this is, indeed, a true memory-care facility. This facility specializes in memory care. You have to have some type of dementia to be admitted into the facility.

Jim32

towhee wrote:

States inspect AL/MC and keep records of complaints and incidents. In some states these are online and available to the public. Usually the facility will have a copy of their last inspection. Unfortunately, due to budget contraints these are not as frequent as one would like.

You can contact your local long term care ombudsman, they usually know if there are significant problems in a facility.

Jim32's post begins here.

Well, I am in the state of Illinois (Chicago metropolitan area). Are AL/MC complaint records online in Illinois?

harshedbuzz

Jim32 wrote:

This assisted-living facility does have motion detectors in every private room. And, every time there is motion in a private room, the staff members check in on the patient to make sure that the patient does not fall. Even my mother's current nursing home does not have such motion detectors. 

TBH, this reads like standard boilerplate risks of care in a facility. It's a bit like the terms and conditions on an amusement ride or ski lift ticket. I recall my dad's MCF having my mom sign such a form; her CELA vetted the contract with us. Perhaps that's an option for you. The CELA was unperturbed by it. She explained that signing it did not waive the right to sue if he was neglected or abused. I suspect this is in there because sometimes families have unrealistic expectations or perhaps are making this choice from a distance while unaware of how dementia is impacting the person they are placing. 

How do the motion detectors work? By the time staff get to a room, chances are a fall would have already occurred. Physics tells me there isn't a staff member faster than gravity. At a certain point, they become unavoidable. 

The one way facilities avoid falls is to place the resident in a Broda chair that's been partially reclined or even with a wedge-shaped cushion so the PWD can't climb out. This isn't a great solution but can be appropriate at times. 

 

Also, the sheet describing the risks states that there is a risk of residents wandering from the facility's premises. Wait a second! This is supposed to be a locked memory-care facility where the residents can not get out. I understand that the residents can wander from their rooms and through the halls, but they can also wander away from the entire facility? 

Is it a locked facility? There's a Friends' MCF near me that is not a locked unit but that they describe as being secure because of motion detectors and a 24/7 staffed entrance that leads to another unit which would presumably notice a MC resident in their hall. I've never heard of anyone getting out and I know someone who works there.

There is always a risk of someone holding the door for someone not realizing they're a resident and not a visitor. At one place I toured for dad, the director asked if I was looking for my husband who is a bit older, quiet and with me that day. I said no and she shared that he reminded her of a retired economic professor who'd been with them a few years back. The man had come to live there in the midstages and eloped into town. Initially he went out his window; they relocated his room to the other side of the building where he escaped into a walled garden.

And then there is the stuff about skin breakdown. I am assuming that "skin breakdown" means something like bed sores. 

Again, boilerplate risks. It can be difficult in the very end stages to prevent skin breakdown whether in a hospital, SNF or home. This is especially true if the patient has loss a great deal of weight. My dad who died in MC did not have bed sores; my sister who died at 33 with round the clock home care and a husband looking after her did. She lost so much weight it was almost unavoidable. 

So, what's going on here? Do these risks exist in every assisted-living facility with memory care? Would every facility give me such a paper describing risks? Or is this particular facility simply trying to cover itself legally for providing substandard service? 

I doubt they're setting out to render poor quality care. The reality is that dementia creates these risks and they would exist if you could clone yourself into an army of caregivers and provide care in her own home. 

Good luck. Nothing about this is easy.

HB

Cynbar

This is all about liability, I don't think it implies the facility gives substandard care. Restraints are not allowed, so there is a fall risk with all dementia patients. Impulsivity is common, I don't know how much help motion detectors are since a person can stand up and fall in a second. The only way to prevent falls is to hire an aide 24/7 to be awake and sit with the patient --- and even that can sometimes fail. Re: wandering, you say it is a locked facility, so I think the risk of wandering away is smaller but not nonexistent --- as mentioned above, a resident could always sneak out with a visitor, depending on how crafty and determined they are. I would base my assessment more on your impression of the place, how clean and well-kept and content th residents look, how caring the staff seems. I bet most if not all facilities have similar liability statements for longterm residents.

Rescue mom

I second what others, especially towhee, cynbar, and harshedbuzz, said. Nothing is risk-free, and dementia itself creates higher risks for those people than with others. No one can protect them from everything. Stuff can happen in the very best facilities—an airplane could crash in my house as I type—and it’s bad, but it happens. And if it does happen, odds are lawyers will be there fast to sue, rightly or not. Much of what you see is boilerplate, I’ve seen it at many facilities.

My other was in 2 facilities, other family in others, all I would consider excellent or very good. I saw my mother fall with aides standing a foot away. She would crumble out of a chair with me sitting across from her. She could not stand or walk without help, but she’d try very suddenly, and fold right down. The only way to totally prevent is to tie them down, and that’s usually not permissible.

towhee

Unless it has changed recently, you cannot search for complaints online in Illinois. However, you can request inspection reports and complaints for specific facilities. Please be aware that residents fall at all facilities so you would be looking for a pattern to find a problem. The contact for the ombudsman program is www2.illinois.gov/aging/programs. Click on long term care ombudsman. The Senior Helpline they list there should be helpful as well.

Good luck

aod326

I had similar clauses in the contract for DH's MC. I was initially quite shocked, until my CELA explained it's impossible to stop all falls, unless, as someone said, PWD is physically restrained. Also impossible to prevent 100% of skin breakdown, even if PWD was turned regularly. They can mitigate those things, but not prevent altogether. She said it was completely customary to have those clauses.

The piece about wandering would have worried me though. I understand that a visitor could unwittingly let a resident out, for example, but I'd want to ask a lot about how they minimize that.

Good luck - it's a tough time for you and your mother.

John2.0.1

My mom is in a memory care attached to assisted living. Memory care is a separate section of the building. To get out I have to press the button and the receptionist checks on video camera who is there to leave. It would be very unusual I think for a MC resident to sneak out.