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20 questions to ask yourself about dementia-related incontinence

One of the first things we learn to do as toddlers is to eliminate our waste in socially acceptable ways, usually in private. The cultural norms and taboos associated with this normal bodily function are deeply ingrained; they remain with us for our entire lives.

The elderly, and people who live with dementia in the later stages may experience incontinence, and, as a result, have to wear adult incontinence products. Sadly, they may also be forced into incontinence, as my mother was, in understaffed long-term care facilities either because the staff don’t understand incontinence or they don’t have time to properly care for people.

I developed this list of 20 questions to help all of us, particularly care partners and care workers, to reflect on some of the issues surrounding incontinence in dementia care, whether that care is administered at home or in a facility.

  1. How often do you go to the bathroom every day? If somebody told you you couldn’t go when you needed to go, what would you say?
  2. When you need to use the toilet, do you know where to go? What would happen if you didn’t know where to go? How would you feel? What might you do?
  3. What is it like to be in a public place, to be desperate to go to the bathroom and to not be able to find one? How might you feel? What might you do?
  4. What would it be like to be in a strange country, to need to use the toilet, and not know how to ask where to go?
  5. What would it be like to be told you can only go to the bathroom at certain times, according to an arbitrary schedule and not when you need to?
  6. How does it feel when your bladder or bowels are full to bursting?
  7. If somebody told you to urinate or have a bowel movement when you didn’t feel the need to, would you be able to? How would you feel about it?
  8. When was the last time you peed your pants? How did it feel physically and emotionally?
  9. When was the last time you wore a diaper? What would it be like to have to wear a diaper today? If you had to wear a diaper from now on and forever, how would you feel about it?
  10. What would it be like to not be able to take care of your own personal hygiene?
  11. Have you ever been on a long drive, needed to use the toilet and been too far away from the next rest stop to hold it until you got there? What did you do?
  12. Have you ever been so desperate to pee, that you have urinated somewhere that you otherwise might not?
  13. What kinds of signs and signals do people (think children) exhibit when they need to go to the bathroom? What about you?
  14. How would you feel about having to wear a full diaper that weighed more than a kilo (i.e. more than 2 pounds) for several hours? Do you think having to do so would affect your mood and outlook? If yes, how?
  15. How often do you use the toilet with someone else in the room, or in the case of a public washroom in the cubicle with you?
  16. Would you feel comfortable having somebody clean your genitals and behind after you had urinated or had a bowel movement? If not, why not?
  17. How would you feel if, when you needed to urinate or have a bowel movement, you were told to do it in your pants?
  18. What is the relationship between bodily functions and human dignity? What is the relationship between bodily functions and shame?
  19. How would you react if you were told to do things or you started to do things that you had been told all of your life were taboo?
  20. What do you think of people who are incontinent? Do you treat them any differently than you do people who have control over their bladder and bowels? How would you feel about yourself if you were incontinent?

In closing, find good information about adult incontinence products, and watch this powerful scene from the movie Still Alice:

More lists of 20 questions related to other dementia care issues here.

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