Dementia Facility FAQ's: What family members are probably wondering.

We've had a few tours come through the GreatRep lately, as well as out-of-town family members come into town to see some of our residents. It's interesting to see how people react to the place their first time, and it made me think about what they're probably wondering but don't ask. So here's my version of what you might like to know about a dementia facility, and my answers:

1. Doesn't it bother them to know they're locked in here?
Surprisingly, no. None of my residents have ever said anything like that to me, and very few are aware that they cannot exit certain doors without setting off the alarms. We have secure courtyards they can go outside in, and we just redirect them away from the front door if they're up there fussing with the keypad (it requires a keycode to open it without setting off the alarm). People with dementia are very inwardly focused, for the most part, and get more so the more their disease progresses. So our little world inside the facility is usually big enough for them. It helps that it has a circular part of the floor plan which is good for walking/pacing.

2. Why are all those people dozing in chairs? Why aren't they awake?
The most common answer is that most of them don't sleep all through the night. I just worked my first overnight shift at the GreatRep and was very surprised at how often I was informing people that no, it's still the middle of the night, and helping them back to bed. I figure that even the ones who can't get up and talk probably spend a good portion of their time in bed awake too, so they just kind of doze off whenever they're tired. They're on more of a 24-hour schedule, like a newborn. And yes, if they're hungry or thirsty in the night, we give them snacks.

3. Why is that lady making that noise/yelling for help/hitting that chair?
I don't know. Sometimes repeating the same words or phrase over and over is soothing for people with dementia, it's called perseveration. Unfortunately, sometimes that phrase is something hard to listen to, such as "help me help me help me" or "hurry up hurry up" or a repetitive action, like banging on whatever is in front of them. We try to mitigate, redirect, and keep them occupied with other things but there's nothing we can really do to make someone stop doing a behavior like that.

4. What about privacy? Won't you sometimes be doing some things in front of other residents? We had a family member complain this week because the podiatrist was in to do foot care, and was set up in a room at the end of the hall which isn't closed off from the hall. They thought it was inappropriate to do foot care out in the open. The thing is, you have to consider the logistics; sometimes there isn't enough space in each person's room to set up a podiatry station. Also, see #1 about the inward focus. Very few of the residents pay too much attention to what the other residents are doing for any long span of time. Some have friendships and stick together, but then they don't mind if their friend is present while their feet are being worked on. We don't change their clothes or use the restroom in front of others, and if they're getting a brief change in bed, their roomate is asleep/cannot see over to their side of the room plus it's still quite dark.

5. Why are you feeding them? Why are they incontinent?It just happens that way; over time, almost everyone become incontinent to some extent, and eventually they stop feeding themselves. That's why they're getting 24-hour care now. We use mechanical lifts called sit-to-stands so that we can still give everyone the chance to use the toilet, and whether they void on it or not is up to them. That's what the briefs are for. I think this is probably one of the biggest reasons I'd have a hard time keeping someone at home and caring for them myself. Everyone incontinent really should be changed approximately every 2 hours. I couldn't do that at home. We've got a full staff and we all get to go home and sleep between shifts, which is why we're able to do our jobs well. Having worked in this field and seen how hard it is, I think I would be totally willing to put myself or a loved one in a good care facility; I just don't see how it'd be feasible to do otherwise.