20 questions to ask when a care partner or resident walks around at night

My first few months as the full-time care partner to my mom while she was still living in her own home were difficult, mostly because I didn’t have a clue what I was doing. I learned as I went, but it was a slow process, and some knowledge came too late to be of much use to us. But it may be of use to you.

When I became tired because Mom was up and ”wandering” in the night, I turned to her family physician and then to her geriatrician for help. Both of them prescribed antipsychotics (Risperdal and Seroquel respectively), about which I knew little at the time. Neither doctor could offer any other suggestions or options, even though I specifically asked for non-drug alternatives as I knew Mom didn’t like taking medication.

I’m certain things would have gone differently if I’d had a better understanding of the reasons Mom got up in the night. 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 and others thinking about how this particular “behaviour” might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad.

20 questions to ask when people living with dementia walk around at night

What do you do when your bladder is full? Do you ever wake up in the night with a full bladder or with the feeling that you need to pee? Does it sometimes happen more than once in one night?
What would you do if you got up in the night because you had to pee and you couldn’t find the bathroom? Would you go back to bed? Would you keep looking for the bathroom until you found it?
What would you do if you woke up in the middle of the night with an overwhelming thirst and you had forgotten to put a glass of water on the bedside table like you normally did?
What would you do if you got up in the night because you were desperately thirsty and you couldn’t find the bathroom or the kitchen to get yourself a drink of water? What if you couldn’t find the light switches either?
When you were a child, did you ever crawl into your parents’ bed because you felt afraid in the night?
Do you, have you or did you ever let your children crawl into bed with you because they are or were afraid of the dark or of something else in the night?
Do you ever have nightmares or bad dreams? Have the nightmares or bad dreams ever shaken you so badly that you wanted to get up, even though it was nighttime?
How would you feel and what would you do if you woke up from a deep sleep and you were in a strange place you had never been before and nothing was recognizable and it seemed like you were alone?
How would you feel and what would you do if you woke up in the night and you weren’t in your own bed? What if there were a stranger lying asleep beside you?
Have you ever gotten up in the night to have something to eat because you felt hungry?
What if you got up in the night to have cookies and milk because you felt hungry and you couldn’t find the kitchen? What if the place you were in was like a maze?
What would you say to someone who told you it was the middle of the night when it was actually the middle of the day? What if they told you needed to go to bed in the middle of the day?
How would you feel and what would you do if you lived alone and you found strangers in your house at night when you got up out of bed to get a drink of water?
What would you do and how would you feel if you went to the bathroom in the night, and when you were finished you didn’t know how to get way back to your bedroom? Would you stay in the bathroom? Would you try to find your bedroom?
If you were in a strange place where you were being held prisoner, and a chance arose to escape, would you take it even if it were nighttime?
How would you feel if you lay down on the sofa for a nap on a sunny afternoon and the next thing you knew you woke up in someone else’s bed in the dark with pyjamas on?
Have you ever gone into a room to get or do something and then forgotten what you went to get or do? What if that happened to you in the night? What if it were in a hotel?
Have you or do you know anyone who has sleep walked? Do you ever get up in the night and have only a vague memory of having done so the next day? Do you sometimes feel groggy and disoriented when you wake up? Do you ever get out of bed and function like you’re on “autopilot?”
Is it harder or easier to navigate in the dark than in the light? Would it be harder or easier if you forgot to put your glasses on?
Is it normal for healthy adults to go to bed at 7 p.m and sleep straight through to 7 a.m the next morning? Do you sleep 12 hours a night without waking on a regular basis?