Recognize and address disorientation

Disorientation is a mismatch between where you are and where you think you are.

This could be your “location” in time, a physical place, a life experience, a situation…the point is that, in some way, “your reality” diverges from your actual setting.

Disorientation is a common symptom with dementia, especially in the later stages. It’s not always harmful (read When should I “correct” someone who’s disoriented? to learn more about that) but it can cause some problems.

Sometimes disorientation is the obvious source: Mom keeps asking where her grandfather is (despite his passing several decades ago); Dad calls your kids by your siblings’ names; your husband asks “when are we going to have lunch,” despite having just finished it. In all of those scenarios it’s clear that the people living with symptoms of dementia feel like they’re in a different place than they really are.

But there are other symptoms that may not be as obviously caused by disorientation. Of course, disorientation is only one of many possible causes for these, but it can result in:

wandering or pacing
repeated questions
problems communicating
obstinacy or rebellion
weight gain or loss
slips in personal hygiene
“sundowning”
agitation
irritability
sleep problems

Disorientation comes from the cognitive impairment (including memory loss) that defines dementia. Cognitive impairment makes it hard to make or act on connections or make sense of clues. This means that someone who doesn’t know where they are (memory loss) can’t use external hints to correctly place herself. She’s disoriented.

Clues are the things that, without even thinking about it, cognitively-normal people use to place themselves. “The sun is setting so it’s probably evening,” that sort of thing.

Connections are how you process this information. Connections result in reactions. “It’s raining outside, I should put on a raincoat and grab my umbrella on my way out,” is an example of a connection.

Is disorientation really the problem?

How can you figure out if disorientation is causing some of the problems listed above?

First you want to rule out any physical explanations; make sure that your loved one isn’t trying to express an unmet need. For example, agitation, irritability, stubbornness, or rebellion could all be responses to pain, discomfort, hunger, thirst, etc. Go through a checklist of possible physical causes.

One woman I knew suddenly seemed so down: she just stopped leaving her room. We tried to figure out what had happened: was she sad? Upset? Was it a side effect of a medication? Was she bored?

Well, my colleague figured it out. Whenever she put on her shoes, one of her socks would ride up uncomfortably. It hurt her. So she didn’t want to put on her shoes, which is why she didn’t leave her room.

We’d been trying to find the source of her “depression” and overlooked an easily-fixed physical cause. The moral of the story: always check possible physical causes first. But her disorientation rendered her unable to say any of that.

Pinpoint the concern

Once you’re reasonably sure that the behavior isn’t a reaction to pain, then you can start helping her get reoriented by targeting her personal concerns.

This probably doesn’t mean “If your mom keeps asking what time it is, tell her that it’s 1:20 in the afternoon on Thursday, January 26th, 2012. You’re in your house in Atlanta, Georgia.” If disorientation is a problem then there’s a pretty good chance that none of that information will mean anything to her.

Instead, you want to get to the source of what’s upsetting her. Basically, it’s like the “guess-and-check” method of problem solving we learn in grade school, but hopefully with a little insight based on your understanding of what’s important to her.

For example, some people repeatedly ask the time because they want to be sure that they don’t miss a particular event.

Maybe your mom remembers that dinner’s always at 6:00 but has a hard time perceiving how much time has passed, she doesn’t recall if she’s eaten recently, and she’s hungry. In this case it’s most important to let her know that she’s eaten recently and that you’ll give her plenty of warning before dinner. Would she like a snack or maybe some water?

Requests for an absent parent or spouse are sometimes actually a request for the role that that person played in her life. Perhaps your mother’s dad always made her feel safe; by asking “where’s Papa?” she’s really communicating that she’s stressed and wants comfort. It’s probably not necessary to discuss her father; instead, find out what she’s worrying about.

Also remember that disorientation can improve and worsen at different times of the day, in different locations, when the weather changes, …. Certain settings may repeatedly arouse the same fears. If you’ve figured it out once, try the same solution again.

The important thing is to uncover the form of disorientation that’s a problem and help her understand her orientation to that, specifically.

If you only remember 3 things about disorientation:

Check possible physical causes of discomfort first – sometimes disorientation obscures expression of a physical need

Orient in a way that addresses her personal concerns without drowning her in information

Use your understanding of what’s important or upsetting to your loved one. Try resolving those issues first.

No Medical Advice

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