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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