Aug 27, 2018

Nursing Home Let's Dementia Patient Wear Same Clothes for Eight Months and Refuses To Do Anything About It

A dementia patient has worn the same clothes for eight months, has refused to take a shower, smells really bad; and, the nursing home won't do anything about it.

Dementia Care Two Hearts Are Better Than One

Our reader Margaret wrote and asked for help.

My brother is in a nursing home, with dementia and refuses to go in the shower. I complained 8 months ago and they said they cannot make him do anything he does not want to do.

Today 8 months later the Doctor called saying my brother has the same clothes on and still will not take a shower and the smell is so bad.

Well, what do they want me to do? He is combative with me, and now they are looking for my help.

By Rita Jablonski, PhD, CRNP, FAAN, FGSA
Alzheimer's Reading Room

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Margaret continued.

I think its awful that they feel he has rights and can refuse. But yet the smell is so bad for everyone around him.

8 months sleeping in the same clothes and not washing at all. I have no clue what to do.

They told me he has rights, that is fine, but he does not have his mind. Why can they not get him cleaned up for his health reasons and others? Please help.

Our dementia expert Rita Jablonski responds.

Refusals: Exercising Autonomy or “Knee-Jerk No’s”?

I am appalled that the facility is calling you, the sibling, and asking you to handle your brothers’ refusals. My immediate response would be to tell them to read ARR or my blog. Wow.

Autonomy is the ability to make an informed decision without coercion or force. Autonomy is a cherished right in the United States.

People become quite upset when they believe that their autonomy is undermined. Some parents refuse to immunize their children because they believe vaccines are associated with autism. (The research, by the way, does not support this relationship.)

I have friends who refuse to wear a helmet while riding their horses because the helmets are “uncomfortable.” Personally, I think a head injury is the ultimate in discomfort but … my friends can exercise their autonomy.

The autonomy of people in long-term care is extremely important.
  • This autonomy is enforced by the multiple rules found in Section 42, Part 483, of the Code of Federal Regulations guiding long-term care activities. These regulations were part of the Nursing Home Reform Act (OBRA 1987).

To give some historical context, there were no options for older adults other than traditional nursing homes. I was a nursing assistant from 1982-1986, and I recall very vividly the difference between residents in long-term care facilities today and those who lived in these facilities in the mid-1980s.
  • About 1/3 of our residents were fairly independent; in fact, some still drove their own vehicles.
  • About 1/3 required some assistance; many had mild to moderate dementia. 
  • The remaining 1/3 were completely dependent on us for all of their needs

The regulations, although designed to protect all residents, reminded us that many of our residents possessed enough decisional capacity to participate in decisions around their care.

The prevalence of assisted living and independent living communities has changed the composition of people living in long-term facilities or traditional nursing homes/centers.

One has the short-stay population, people receiving 21 to 100 days of physical therapy in order to transition back to the community. The long-term population has significant functional and cognitive impairments.

Here is the paradox: people with dementia are more likely to refuse care, but they do not have the ability to make an informed decision. Yet, when a person with dementia says, “no,” we give this refusal the same weight as if from someone without cognitive impairments!

Let’s go back to the original definition of autonomy: the ability to make an informed decision without coercion or force.

As an example, my primary care provider notices that I appear depressed. She prescribes a low-dose antidepressant. I fill the prescription, take the medication, and notice that my thinking seems fuzzy.

I also read an article touting the benefits of physical exercise; in fact, the authors cite research findings that demonstrate that physical exercise is just as effective against depression as medication. I make the informed decision to stop the medication and engage in 45 minutes of physical activity daily.

People with dementia tend to answer “no” to everything. Why? 

One probable reason may be the ingrained memory of “no” as being the “safe” response. One usually does not get into trouble answering in the negative. The opposite may be true if one answers in the affirmative. For example, in the movie “Yes Man,” the main character (played Jim Carey) lands in a variety of awkward and risky situations after responding “yes” to the questions asked of him.

If a person with dementia has moderate to severe dementia, and most long-term care residents fit this description, that person has no capacity for making an informed decision. The automatic “no” is similar to the knee jerk I elicit when I tap the patellar tendon with a reflex hammer.

Asking yes/no questions regarding care decisions is a bad idea when working with people who have dementia in long-term care.

So, what about people with dementia who refuse to get into the shower or to take their medications? This is more of a rejection of care. Care rejection behaviors can be grounded in fear.

5 Tips, How to get an Alzheimer's Patient to Shower

Entering the person’s reality can be a powerful strategy for managing refusals.

Entering the person’s reality is often a successful technique when a person is caught in a memory loop. In other words, our short-term memory, combined with attention and concentration abilities, help us to understand the passage of time. 

I have a memory of brushing my teeth, but I know it is late evening and I brushed my teeth this morning.
  • If I have problems with my short-term memory, attention, and concentration abilities, I literally get stuck in a memory loop: common memories such as bathing, brushing my teeth, and changing my clothes stay near the surface and I believe I have just completed these activities. Because these memories “feel” recent, someone telling me otherwise (“you have not bathed in 3 days”) goes against my perceptions and I will become very angry.

This knowledge makes me question whenever I am told that someone with dementia “refused” care.
  • I wonder how the person with dementia was approached? 
  • I wonder how the question was phrased?
For the next couple of weeks, watch how you interact with people who have dementia and see if you are accidentally triggering a “knee-jerk no.”

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Rita Jablonski, Alzheimer's Reading Room, July,2018
"Nursing Home Let's Dementia Patient Wear Same Cloths for Eight Months and Refuses To Do Anything About It"