Dementia changes how people experience and interact with the world around them. The way a person with dementia uses words often leaves family members and caregivers unsure how to respond. After years of being able to communicate interactively, and exchange information clearly, as dementia progresses this flow suddenly shifts. Initially, it may be an occasional loss of words, or confusion of words. Eventually, there is no give and take at all, leaving communication a one-way street.
What do you do when someone’s words start to fail them? Most of us feel attached to accuracy. We like to be right, and we like to correct others if they mistake some detail in a story. Between competent adults, this is typically a friendly exchange, as we tweak each other’s versions of life events. It’s a kind of “Wait, that’s not how I remember it” where the fish caught gets bigger and bigger with each telling. When dementia enters, initially this automatic response as they confuse their facts is innocent enough. Early on, they may in fact appreciate being assisted in staying on track. But as dementia progresses, details become blurry and stories get muddled, and we are faced with a choice. At what point do we stop pushing for accuracy and allow the stories to be?
When dementia takes hold, people live in a different world than those of us who live cognitively intact. The line between what is “real” and what is “imagined” becomes very blurred. When memories fail, confabulation takes over. What isn’t recalled may be filled in with details that are not accurate. The most liberating experience in caregiving starts when we can let go of the importance of being correct. The question to always keep close to your heart is, “Does it matter?” Once you accept that accuracy is irrelevant, the next question is, “And then what do I say?”
Underneath what is said by a person with cognitive loss is an emotional message. Rather than focusing on the facts, consider the feeling behind the words. If Mom says she needs to get ready for school, rather than correcting her, inquire a little. Ask her what her favorite class is, or the best teacher she ever had. Then distract her with an offer of a snack or a walk in the garden. Be gentle with her confusion, and go with her to wherever she seems to be even if it’s just for a moment or two. That is what is real for her.
When words start to jumble, and deciphering what is being said becomes a struggle, you can ask questions to get a better sense of what they are trying to say. Or, as I did when my Dad’s words became muddled, respond with something open ended and general, like “Really? I didn’t know that” or “How do you think that will turn out?”
Dementia tests our patience and our humanity. Each interaction is an opportunity to connect with the person behind the confusion of facts and words. Let yourself off the hook, and open up to the possibility of just going with it. You may find yourself someplace surprisingly interesting.
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