For today’s blog, I provide answers to some questions I have received from my readers. Names and situations were altered to protect privacy. Your problem or situation is not as unusual as you may think it is: 6 million people in the US have a dementia diagnosis, and they are being cared for by 15 million family caregivers. Some situations are less common than others, but if you are struggling with a specific problem, I guarantee that someone else is also struggling with the same issue.
Can a facility refuse to accept my family member with dementia who has dementia-related behaviors, like refusing medications?
The short answer is “yes.” Any facility can refuse admission to anyone if the facility believes they cannot provide safe and appropriate care. For example, facilities can refuse to admit someone who depends on complex medical equipment, like a breathing machine called a ventilator. Facilities can also refuse to admit people whose levels of care are beyond the levels offered by their staff. Most nursing homes offer skilled nursing care, which includes wound care. But an individual who requires sterile dressing changes every 2 hours by a registered nurse may be denied admission because the nursing home can not meet that level of care.
But you may be thinking, my family member has dementia, and people with dementia often refuse to take medications, among other things. Shouldn’t a facility be equipped to handle these types of behaviors?
In my opinion, yes. But here is the reality. There are 2 major types of facilities that provide 24-hour dementia care: assisted living facilities and nursing homes. In Episode 46, I went into a lot more detail about the differences between the 2. Nursing homes were developed from the medical model and comply with federal regulations—known as the Code of Federal Regulations Section 42. Nursing homes receive yearly inspections from state surveyors, and the results of these surveys must be provided to anyone who asks for them. In fact, written copies are supposed to be posted and accessible.
Assisted living facilities follow state laws and regulations and receive inspections from the department of health. They rarely receive annual inspections; inspections are usually instigated by complaints. Assisted living facilities are more homelike and place less emphasis on handling behaviors and providing full care. Many advertise “Memory Care” units that are designed to provide a homelike and safe environment for people with moderate stages of dementia. Assisted living facilities are less likely to accept people with behaviors and may have policies where specific behaviors result in an automatic transfer to an emergency department—and the emergency departments are not designed to handle dementia behaviors—or a psychiatric facility.
Then there is the issue of whether or not a facility is for profit or not-for-profit. Here is the difference. Let’s say you have two facilities and at the end of the fiscal year, they both generate a profit of $50,000. The for-profit facility splits the profit among the investors or shareholders. The not-for-profit facility re-invests the profit into the facility—into the physical facility, like purchasing new furniture or better bathing chairs—or into the staff in the form of training or higher salaries. In my humble opinion, some of the best facilities I’ve seen are not-for-profits run by religious organizations.
Another reason why a facility may refuse to accept a potential resident is the current bias against antipsychotic medication. In 2011, CMS embarked on an initiative to lower the rate of antipsychotic usage in nursing homes, because antipsychotic medications were the first response to dementia-related behaviors. I participated in the phone calls and monthly meetings. Nationally, almost 25% of NH residents were receiving antipsychotic medication in 2011. The national rate is around 14%. Some states are much lower than the national average; some, like Alabama, are much higher. Some nursing homes refuse to accept potential residents already on an antipsychotic medication because they don’t want to increase their rates. While I am not a fan of antipsychotic medication, I understand that family caregivers need to sleep and there are times when such medication, in small dosages, can help while the family caregiver tries different approaches and strategies. Nursing homes, however, have 3 shifts (or 2 if they are going the 12-hour route) and pay people to work around the clock; nursing homes should wean resident off of the antipsychotics.
My husband refuses to remove his adult incontinence briefs (Depends). I am able to get him cleaned up in the morning and I put on a fresh brief, but the rest of the day, he will not let me take them off. It upsets me. I try to pull them down and he fights with me. There are some evenings I just give up and let him go to bed, even though his briefs definitely have poop in them. I am so upset about this.
I tell family caregivers, cut the damn things off. I had one daughter who would accidentally “rip” the brief while she was removing her mom’s pants and then tell her mom that she needed to give her a new one that wasn’t ripped. You can go that route. I would recommend bandage scissors. These are scissors that are bent so that the blades are at a 90 degree angle to the handle and the pointy ends are rounded to avoid sticking anyone. You can get them at any drugstore, at Walmart, and on Amazon. I like the EMT bandage scissors—the handles are bigger and the blades are longer (but still rounded) so that you can cut through the briefs faster. Cut down both sides and slip through the middle. I’ve sat people down on toilets and shower chairs and cut through both sides, moved the front flap down, then stood them up. Brief stayed on the toilet or shower chair. I also recommend having those scented kitchen trash bags available so that you can toss the soiled brief there instead of the bathroom trashcan.
Baby wipes are also good to have to clean soiled bottoms. Whatever you do, don’t flush them. The manufacturers all say that they are flushable. Well, yeah, they do go down when you flush but they hang out in the pipes and next thing you know, you have crap spewing out of your toilet.
I have family caregivers who are trying to put on gloves and then clean their loved ones. This is going to sound gross, but gloves are not always necessary. When I worked as a nursing assistant in the 1980s, we cleaned up poo and pee without gloves. Soap and water sufficiently clean your hands. I never got sick, never picked up an infection. I was meticulous with washing my hands after every caregiving activity.
If anyone is having issues with removing soiled clothes, it is really hard to demo on a podcast. I am hosting a live webinar on July 5, 6 pm central daylight time. I have a link in the notes where you can access my webinar schedule—I have them every month for the next year—and you can register in advance. I have the program set up to send out reminders to those who register.
My family member is suddenly more confused and more combative. This is the 3rd night in a row that neither of us have slept. What do I do?
I saw this post on a FaceBook group for dementia caregivers, and the 50 or so comments recommended calling the physician and asking for medications. No, that is not the first step. Anytime you experience a sudden jump in behaviors, get your loved one checked out for a urinary tract infection. People with dementia rarely complain of bladder pain; UTIs usually show up with abrupt changes in behavior and sometimes, new urinary incontinence. Your loved one’s temperature may increase but, as I’ve mentioned in previous podcasts, their baseline temperature may be 97. This means that 98.6 is a fever. It is a good idea to take your loved one’s temperature when they are fine to know what their normal temperature—their baseline temperature—is. Also, take a look at the urine. If it is brownish yellow, their urine probably has blood in it—which is a sign of a bladder infection. It may also smell foul.
I know it is a pain to take your family member to the primary care provider and get the urine tested there. Here is a way to fast-track the appointment but it requires planning. You can ask your PCP for a urine collection hat—it is a plastic bowl shaped like a half-circle that fits under the toilet seat and collects urine. Or, you can check out your local drug store or google “urine collection hat” and order some from any number of online medical supply companies. You also want to ask your PCP for urine specimen cups so that you can pour the urine into the right cup and take it with you.
If you cannot get to the appointment within 1 hour of obtaining the urine sample, put the cup in a sealed plastic bag and place in your fridge but for no longer than 24 hours. Your fridge should be set to no higher than 39 degrees. The coolness of the fridge keeps the bacteria in the urine from multiplying and screwing up the results.
Dehydration is a year-round risk for people living with dementia. Summer months can pose more challenges if people are losing fluid from sweating and not consuming enough fluid to stay hydrated. I hear from family caregivers that their loved ones won’t drink water or insist on drinking caffeinated or sugary beverages—which can contribute to dehydration. Sugar-free popsicles and fruits with a lot of water—like anything in the melon family—are alternative ways to get water on board.
If you have a question or concern, send me an email, email@example.com. I would love to hear from you!
Dealing with refusals and arguments? Get a free copy of “Dementia Hacks” today–click here.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.