Instead of hearing “the same old stories” you are receiving clues about what is important to the person with dementia – people, places, events, and values. These reminiscences are the artifacts of the person’s life. The narratives are often about important events – usually positive – that define their identity.
(A plea to my colleagues in dementia care.)
Occasionally, I hear a colleague say that people with dementia are like children, or are childlike, or – worst of all – that you have to treat them like children if you want to overcome challenging behaviors. (Which is an adjacent problem. My thoughts on the term “challenging behaviors” are expressed here and here, towards the bottom of each blog post.)
It’s true, when people learn a loved one has dementia, they are hungry for information about the changes it will bring in a way not unlike an expectant mother is hungry for information about her pregnancy and parenting. But that is where the similarities between dementia and children end.
As dementia experts, people listen to what we say, adopting both our ideas and our language. If we give credence to this idea, family and professional caregivers will adopt this framework as a tool to orient themselves in caregiving. And it’s a dangerous orientation.
First, some of the myriad ways a person with dementia is NOT like a child.
- A child has no life experience. A person with dementia has lived a life full of wishes, dreams, joys, disappointments, challenges, triumphs, struggles, love, hurt, tragedy, triumph.
- A child does not know what it means to work. A person with dementia has gained skill, worked toward the objectives of a higher authority, and cooperated with others to meet goals.
- A child has never been responsible for another human. A person with dementia has experienced the monumental joy and anguish of caring for another person.
- A child has never known the intimacy of romantic love. A person with dementia has been entwined in the most splendid and private bond with another human life.
- A child is far from reaching his or her cognitive peak. A person with dementia has flourished in his or her cognitive peak years, and grieves the loss of abilities slipping helplessly out of grasp.
It is dangerous to give anyone in a caregiving role such a framework. Because if we think of the person in our care as childlike, we give ourselves permission to put the person with dementia in a subordinate role, which can erode trust and threaten dignity.
We encourage children to “do better” because it is part of our role to encourage them to stretch and grow, which they are capable of doing. But with dementia, this “childlike” framework invites us to use language that is judgmental or corrective, when the truth is the person is doing the best that they can in any given moment. Any language that is not fully supportive will only frustrate or hurt him or her.
Most importantly, attending to a person with dementia as we would a child negates a lifetime of experience, an advanced sense of identity, and centers our attention on the mechanics of care rather than the emotions surrounding care needs.
More and more often, I am quoting Maya Angelou as I train professional and family dementia caregivers. I think her words apply beautifully to this topic, and I ask you to contemplate my thoughts through her lens:
“People won’t remember what you said or did, but they will remember how you made them feel.”
A call to my colleagues: As you inform and educate others about dementia and dementia caregiving, please help them to understand the dangers of comparing those with dementia to children.
Dementia destroys a person’s ability to detect and accurately process visual, auditory, and tactile data; and it makes people feel vulnerable against real or perceived threats. Vulnerability creates a victim syndrome which, when exaggerated, can trigger false accusations.
For people with dementia, everything happening now is unfamiliar, because the way they process visual, auditory, tactile, and emotional data is damaged by dementia, and so nothing seems as it once did. What is familiar is what was happening, where they were, and who they were with when they were in their cognitive peak – when they had command over their minds, their bodies, and their lives.
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