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.

When should I “correct” someone who’s disoriented?

“Why does my mom thinks that I’m her mother?”

“My husband asks me what time it is every 2 minutes…he’s driving me crazy!”

“When I saw my grandmother over the holidays she was dressed in just a summer gown and robe…but it was really cold!”

These are examples of disorientation.

It’s pretty common for people living with symptoms of dementia to feel disoriented, misaligned with reality. The thing is, even if you recognize her assumptions are incorrect, it’s often better to NOT correct someone with symptoms of dementia.

For example, when my grandfather recently thought I was my mother, I didn’t correct him. I never do. Somehow he still remembers a lot of the important things: my personality, my passion for design, my hobbies, my travels with my grandmother…. But he’ll call my grandmother “your mother” while singing her praises for being so strong, so kind, so witty. In that situation, it couldn’t matter less what name he uses for me.

But my other grandfather, had no idea who I was for years. It wasn’t just forgetting my name; I think he’d forgotten himself. That was probably when I first learned the fine line between “identifying” (Hi, Papa! It’s Jennie Lynn, your granddaughter!) and “correcting” (No, you’re not in Alabama, you live in Washington DC now).

Both of these examples are pretty tame, but you get my point: often, not correcting someone can be better than correcting him.

Practically, what does that mean? How should I handle it instead? When should I “correct” her and when should I just let it go?