Refusal may indicate a deeper problem

 

Recently a friend and I were talking. She told me about her mom: she didn’t want to take a shower anymore. Pretty much ever.

My friend, along with her mom’s care team, couldn’t figure it out: she used to enjoy showers, or at least she didn’t mind them. What changed?

What is it that causes someone living with many symptoms of dementia to suddenly refuse to take part in normal, day-to-day activities?

 

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Why is refusal suddenly an issue?

Why might someone experiencing symptoms of dementia begin to refuse to participate in routine activities? Most likely, it’s NOT because she is just stubborn and “won’t do anything.”

Rather, it’s often a matter of communication. Communication becomes much more difficult as dementia progresses; having trouble “finding” words and matching them to their meanings is a hallmark symptom of the syndrome.

But what is meant to be communicated? What is being missed?

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Health Check: could there be a deeper problem?

The first thing that you want to do is check that unrelated to the activity itself doesn’t underlie your loved one’s “refusal.” Sometimes refusing to do something you’re asked to is the only way to communicate that something’s wrong.

So run through a quick checklist to make sure that nothing is either seriously wrong or easily fixed:

• Is she hungry?
• Is she hydrated? Thirsty?
• Does she need to use the restroom?
• Is she warm enough? Cool enough?
• Is she in any pain?
  • This is a big one — many people with dementia have undiagnosed chronic pain.
  • If the “problem behavior” (ie, refusing) happened suddenly, spend extra time on this, gently and respectfully checking her body
• Is she experiencing any other discomfort?
  • Possible infection
  • Sore spots, cuts, or bruises
  • Position of her body
  • Something poking her or otherwise uncomfortable in her surroundings

 

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Easy answers

One of my colleagues was working with a woman who suddenly refused to put on her shoes and go to meals. Her care staff couldn’t figure it out. Was it something about the dining room? Did she not want to leave her room? Was she depressed?

Turns out, it was something pretty simple: one of her shoes had started catching her sock when it was placed on her foot. The sock would get bunched up around the middle of her foot and pull tightly on her toes. It was uncomfortable, to say the least. But she no longer had the words to express the discomfort. She did, however, have the ability to be uncooperative when people attempted to help her put on her shoes. So that’s what she did.

Adjusting the tongue of the shoe solved the problem. No more resistance once she realized the pain was gone.

Always check the little things first; it might be an easy answer.

 

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Does she associate the activity with discomfort?

With bathing, in particular, this can be a real issue. There are a lot of potentially uncomfortable elements that come into play. The article How to Get An Alzheimer’s Patient to Bathe (by Carole Larkin, published by Alzheimer’s Reading Room on 12/23/2011) contains some good tips to help make bathing a better experience.

Some potential problem areas:

• Modesty. I mean, how would you feel if someone came demanding your clothes?
• Cold/temperature. It’s easy to catch a chill in the time between the start of bath time and when you actually get into the tub. The same goes for the time between getting out of the tub and being dry and fully dressed. Warm towels, a thick comfortable robe, and some advance planning can sometimes help a lot.
• Does she feel unstable? Slippery tiles and a lack of (or improperly positioned) grab bars can make for a very uncomfortable experience.
• Scared/overwhelmed by shower water pouring down from overhead. It can be hard to visually grasp what’s happening and to get oriented with water pouring down on you: consider getting a hand-held shower head.

 

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Is the activity really necessary?

It’s also worth considering whether the action that your loved one’s refusing is necessary.

For example, it’s probably alright if your mom isn’t bathing every day or even every other day; check with her doctor, but many people can bathe just twice a week and still prevent infections (including UTIs (urinary tract infections)).

The same goes for trying to make someone change clothes: is it sometimes necessary? Absolutely. Is it necessary to do two or more times a day, every day? Probably not. Choose your battles.

 

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What were her preferences throughout her life?

This is a major consideration for things like not wanting to shower, eat, or sleep at the times that she “should.”

For example, I like to bathe at night; it relaxes me and helps me to fall asleep. Showering in the morning just feels wrong, plus I get cold.

When possible, I’ll take a bath over a shower any day!

And I like to use certain soaps, shampoos, and lotions. They are NOT interchangeable. I like certain towels, too, and I don’t wash my hair every time I bathe.

All of this got me thinking: I can’t imagine that advancing age, for example, would make my tastes any LESS particular. As best you can, try to align the activity with her preferences.

The same goes for eating. Did your mom never eat breakfast, but enjoy a large lunch and a small dinner? Well, she might still prefer to eat that way. And if your dad never liked Brussels sprouts before, he’s probably not about to start enjoying them now.

Many people have problems with hydration…but they also dislike drinking water. If plain tap water was never palatable, it’s unlikely to become so now. Think of ways to make hydration more pleasant: perhaps herbal tea; or maybe place slices of lime in a pitcher of refrigerated, filtered water; or add other flavorings like fruit juices.

 

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Maybe it’s a good thing

Finally, the Social Care Institute for Excellence makes an excellent point if a person’s refusal is based on a mismatch with her preferences: “A person with dementia may refuse to fit in with a routine that does not match their own. This is a positive sign! It shows us that the person still has a sense of their own identity and autonomy.”

 

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Additional Resources

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Dementia Gateway: Difficult situations

Refusing Help

Key quote:

Being forced into things makes us upset or aggressive, even fearful.
–Christine Bryden

Key messages

• There are many reasons why a person with dementia may not be prepared to do exactly what we would like them to do.
• We should not expect a person with dementia to follow our wishes or conform to our standards – in fact, we should be doing our best to co-operate with them.
• We need to consider our approach and to gain as much knowledge as we can about the person, their standards and preferences.
• A person’s refusal to do something can help us learn important information about how best to care for the individual.

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Alzheimer’s Reading Room

How to Get An Alzheimer’s Patient to Bathe

By Carole B. Larkin (Friday, December 23, 2011)

 

 

 

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