Enter the Gray Area: Communicating with someone living with dementia
“We bring Rachael in for a different perspective,” the nursing school’s professor told her class. “As I said before: do what she says in practice, but remember to write the opposite of what she says when you’re taking your boards.”
The class nodded, but I was shocked. “Wait, nursing schools still teach reorientation? I thought they stopped teaching that years ago!”
“Unfortunately not,” the teacher shook her head. “The textbooks and lesson plans all include information on correcting people living with dementia.”
Years ago, newcomers to the world of dementia caregiving were taught to reorient someone living with a dementia disease. Reorientation is the idea that you correct and argue with the individual in the hopes to “fix” what they believe to be true. For example, if a person with dementia said to you, “I saw my mother yesterday!” you would reply, “No, you didn’t, your mother has been dead for twenty years.”
Reorientation is cruel, unnecessary, useless, and ultimately painful for everyone involved. The person living with dementia will forget what you told them and ask again. You, in turn, will be forced to restate your case.
But what’s the alternative?
After getting my Master’s in Gerontology, I began my dementia care journey at an assisted living and dementia care community in Burlington, North Carolina. I learned, at some point, about using “redirection” and “distraction” when communicating with people living with dementia. These ideas mean that, when a person with dementia presents an untrue fact or belief, you redirect the conversation or change it entirely. For example, if the person were to ask, “When can I go home?” you could say something like, “I don’t know. Let’s go fold these towels.”
I quickly found that these techniques didn’t cut it, either. I once had a resident say to me, “Why does no one around here ever answer my actual question?” This struck me. I thought, yes, why do we feel like we can’t actually answer your question?
We’re taught, too, never “to lie” to someone living with dementia. Then what, I ask, are we supposed to do? Evade every question? Make someone cry by reminding them that their parents died decades ago? Force someone to do the math on their age and the current year?
No. I began to work on what I now teach: the idea that we can embrace the reality of the person living with dementia.
When we embrace the reality of someone living with dementia, we throw out the word “lying.” Instead, we enter the truth of their reality. As I teach my workshop attendees, readers and podcast listeners, if it’s true for them, it’s true for us, as well.
Let’s break this down in an example. Let’s suppose that your mother is 85, has dementia, and lives in your home with you. In her reality, however, she believes that she is 50 years old, works outside the home, and lives in her own house. Which reality is true?
If we embrace her reality effectively, we live with her in her truth. When she asks, “When can I go home?” you say, “Let’s go later.” When she asks you where her parents are you say, “Where do you think they are?” Whatever she tells you is the correct answer. “Yes, that makes sense, I think they’re probably at work,” you agree.
When we reorient someone living with dementia, we correct them: we tell them that what they believe is wrong. When we redirect or distract them, we throw them off balance by avoiding their questions. When we get scared of the word “lying,” we cautiously avoid letting them live their truth.
Dementia care is a gray area and caregiving is an art form, much like a complicated dance for which we can’t quite learn all the steps.
Here’s the good news: we don’t need to know all the steps ahead of time. If we find a way to embrace their reality, we can thrive in that gray area.