Care Partnering, Resources, Toward better care

20 questions to ask when someone living with dementia “resists” or “refuses” care

I have learned through personal experience, reading and research that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. They react as any “normal” person would, but their behaviour is attributed to the disease rather than to whatever catalyst actually sparked it.

When you think about it, it’s not rocket science, or at least it’s not if you haven’t bought into the biomedical model that labels normal behaviour as aberrant because people have a diagnosis of Alzheimer or a related dementia.

I hope these questions will get you thinking about how “resisting” and “refusing” care might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad and antipsychotic drugs.

20 questions to ask when someone living with dementia “resists” or “refuses” care
  1. Is the person able to do this herself? Would she prefer to do it herself?
  2. Is the care necessary? Could it be deferred or stopped altogether?
  3. If a stranger were doing to me what I’m doing to her, how would I feel? What would I do? How would I react?
  4. Have I asked his permission to do what I’m doing?
  5. Is it the right time for this? Would another time be better?
  6. Am I the right person to be providing this kind of care to her? Would someone else be better equipped?
  7. Have I been properly trained in this kind of care?
  8. How did I approach her? What was her initial reaction? Did I change my approach based on her reaction? Am I going with her flow?
  9. Did I start with and continue to use Hand Under Hand?
  10. What was going on with him in the previous hour or two? What was he doing? Could whatever it was have caused him to feel upset or uncomfortable?
  11. Is this the right environment to be providing this kind of care? Is more privacy needed? Is it too noisy?
  12. Do I normally have a good relationship with her? Does she like me? Do I like her?
  13. Am I treating him with respect? Am I treating him like a child, or a patient rather than like a person?
  14. Am I taking steps to preserver her dignity? Am I being compassionate and understanding? Have I put myself in her shoes?
  15. If I were on the receiving this kind of care, how would I feel? What would I do? How would I react?
  16. How do I feel about providing this kind of care to him? Am I comfortable? Embarrassed? Matter of fact? Clinical? Angry? Disgusted?
  17. Might I have hurt him in any way? Physically or emotionally? Could he be in pain? Is the care process painful?
  18. Is she hot, cold, hungry or physically uncomfortable in some way?
  19. What tone of voice am I using? What kinds of words am I using? If someone were to speak to me like I’m speaking to him, how would I feel? How might I react? What would I do?
  20. Do I have enough time to provide this care properly? Am I hurried and rushed? If I am hurried and rushed, might this be causing her to feel anxious or uncomfortable?

More posts in the “20 questions”series.

20 questions to ask yourself about “wandering”

20 questions that help explain why people with dementia get agitated and physically aggressive

20 questions to ask yourself about dementia-related incontinence

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Advocacy, Antipsychotic drugs, NHBPS, Toward better care

alzheimer annie invites you in

Alzheimer Annie is a fictional character I created to help people understand what being in a long-term care facility (LTCF) might feel like. Annie is a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease; she resides in a fictional LTCF somewhere in Canada. Her experiences are based on real-life scenarios, which I either witnessed first-hand or have personal knowledge of. The vignettes in which I have placed Annie mirror the twenty-nine items on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia.

My goal in creating and sharing these vignettes is to show how behaviour that is attributed to Alzheimer’s disease and other dementias, and for which people who live with dementia are treated with antipsychotic drugs, is in most cases normal human behaviour which can be understood and addressed in safer, more effective non-pharmacological ways if we listen and pay attention to what people who live with dementia are trying to communicate.

Here are the twenty-nine “problem behaviours” on the NHBPS, each with a corresponding vignette that describes the behaviour from Alzheimer Annie’s point of view (some are “still in the works”):

I created a model to help myself and others handle these kinds of situations more effectively. It’s called “BANGS.” I share the BANGS techniques in a one-hour webinar here. It’s free. All I ask is you tell me how it works for you if you try it. Here’s what one caregiver said:

“I am a daughter/caregiver who has been with my father for two years since he had two strokes which left his right side paralyzed. He had been diagnosed with dementia before the strokes, and he also has severe aphasia as well as other issues. We both dreaded every day. In desperation a few weeks ago I discovered your site. I found your BANGS technique and it worked beautifully. Thank you.”

Besides using the BANGS model, you can take this three-minute survey to see how you might behave under similar circumstances here. Many people experience the survey as a real “eye-opener.”

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©2016 Susan Macaulay /

Image copyright: vicnt / 123RF Stock Photo

Advocacy, Antipsychotic drugs, NHBPS, Toward better care

president obama would probably be sedated

even president obama goes bump cropped


“I’m awake anyway, ‘cause I gotta go to the bathroom,” US President Barack Obama quipped at the 2016 White House Correspondents’ dinner when he spoke about getting old, counting down the days to his ‘death panel,’ and being up at 3 a.m. (see the video clip below).

The audience laughed.

Why? Because even Presidents can’t escape the vagaries of aging. It’s common to have to go to bathroom more frequently, especially at night, as we grow older. We produce more urine, and we may feel the urge to relieve ourselves more often because our bladders become unstable.

A 2015 Mirror UK article suggests six other reasons people may have trouble sleeping; they include leg cramps, back pain, and breathing issues. I can think of others: lights shining in your eyes, or someone else’s snoring.

At the bottom of the Mirror article, a Yes/No survey shows that 81 per cent of the more than two thousand respondents said they have regular trouble sleeping at night.

My guess is most of them, maybe even all of them, don’t have dementia.

Mirror sleep survey result


I did my own survey, a version of the Nursing Home Behaviour Problem Scale (NHBPS), in which I invited people who don’t live with dementia to say how they would respond to circumstances in which people who live with dementia might find themselves while residing in long-term care facilities.

Question 4 on the thirty-three-question survey was : “Do you sometimes wake up in the night?”

Not surprisingly, 95 per cent of the respondents answered “yes,” they do wake up in the night.

BS Ques 4 Do you wake up in night?

Clearly, waking up in the night is normal behaviour. Except if you live with dementia.

If you live with dementia, and you reside in a long term care facility in most places in the world, the normal behaviour of waking up in the night will more than likely be seen as a problem.

And because your behaviour is seen as a problem, you also become a problem and a candidate to be medicated with antipsychotic drugs that impair your ability to engage with life, and also increase your chances of dying from side effects.

If you’re the US President, people will laugh with you about getting up in the night:


People may laugh at your normal behaviour if they think you’re like them. But if you live with dementia, they’ll probably sedate you instead.

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© Susan Macaulay / 2016

Copyright: vvvisual / 123RF Stock Photo

Advocacy, Antipsychotic drugs, NHBPS, Toward better care

waging war at alzheimer’s bath time

a battle at alzheimer's bathtime

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementiaThe vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “rub a dub dub.” There’s a link to a full list of all the vignettes at the end of the post.

Tips on how to better manage these kind of situations may be found here:

Teepa thin banner

rub a dub dub

I’m alone in a little dining room having breakfast. Bananas and milk. Toast and tea. This is a strange hotel, and the staff isn’t very friendly. One of the maids comes in, the big one that never smiles. She has hair as black as night, and small, dark eyes. I don’t know her name, and for some reason I don’t like her. I can’t remember why.

“It’s time for your bath dear,” she says. She pulls my chair out from the table.

“I don’t want to have a bath. I’m eating my breakfast.” I say. “And anyway, I always have a shower. I have a shower every morning. I do it myself.”

“We don’t have showers here, remember?” she says. “We have a whirlpool bath. You have a bath once a week on Monday morning. It’s morning now, and it’s Monday, and it’s time for your bath, my love.”

“But I don’t want to have a bath, and I’m not your love,” I say. No wonder I don’t like her. Who the hell does she think she is? She grabs my hands and pulls me to me feet. She’s very strong.

“Come on, let’s go hun,” she says.


“To have your bath.” Her voice is louder this time. Why is she raising her voice? I can hear perfectly well.

“I don’t want to have a bath.” She pays no attention. What’s wrong with her? Is she deaf? She takes me down the hall, and into a small room with a huge white tub in it. The water is swirling around. It’s fast and noisy. I feel queasy.

“Here we are,” she says. “Now let’s get you undressed.”

Undressed! “I’m not taking my clothes off.” What kind of a place is this?

“You’ve got to take your clothes off dear,” she says, “so you can have your bath.” She starts to undo the belt of my robe. Why is she trying to undress me?

“No!” I slap her on the arm.

“Don’t hit me Annie,” she says. “I’m just trying to help you.” Her hand closes around my upper arm and squeezes hard.

“Ouch! You’re hurting me.”

“I’m not hurting you. I’m helping you.”

“No you’re not, you’re hurting me. Let me go. Let me go!” I kick her in the leg with all the strength I can muster.

“Stop it Annie! You’re making this harder than it needs to be.” She tightens her grip on my arm, and tugs at my robe with her free hand. I twist my head around and bite her on the wrist.

“HEY! Don’t bite me Annie! I don’t deserve that.”

“Let me go,” I scream. She holds me even tighter. “Let me go!”

“Carol,” she yells over my head and out the half-open door. “I need some help. Annie won’t take her clothes off. She just bit me.”

“Let me go!” I spit, and kick her again. Then I feel someone clutch me from behind…


©2016 Susan Macaulay /

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Take my short survey on behaviour here.

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