Family Focus On Negative Identity
For a few months, I visited a woman who had been diagnosed with dementia and showed signs of depression. This woman had two adult children involved in her daily life. Because of the dementia diagnosis, Adult Child #1 made decisions for the woman. Adult Child #2 told the woman how to cook, as in explaining how to cook hotdogs in water.
The woman was a widow living alone. She drove herself around, shopped, went to church, visited with friends, and cooked whole meals for family members that were more involved than cooking hotdogs in water.
When I visited the woman, we had wonderful conversations. We talked about families, cooking, school, employment, travel, politics, television shows, and world events. We learned from each other. I asked her opinion about some of my work. We also took walks together. Shortly after I started visiting her, the woman began making perceptive jokes. Perceptive in that they were revealing, not demeaning. Adult Child #1 told me that the woman was again the mother they had grown up with.
When I was with the woman, I saw some signs of anxiety and some signs of forgetfulness. Neither was serious. Because I saw her as a competent, responsible adult, I asked the woman to make a few decisions. Adult Child #1 became angry that I thought the woman could make decisions for herself. Adult Child #1 decided my conversations with the woman were no longer necessary.
Adult Child #1 and Adult Child #2 had focused on the negative dementia identity. They saw their mother as a dementia patient rather than as a competent, responsible adult. Early on the woman had told me that all of her relatives knew she had dementia and were being nice to her. If the behavior of Adult Child #1 and Adult Child #2 were any indication, “being nice” meant focusing on the negative dementia identity.
Months after my last conversation with this woman, I learned about Self-Determination Theory, a theory of motivation. According to Self-Determination Theory, social and cultural factors can foster or undermine people’s well-being and the quality of their performance, among other things.
The conditions for fostering well-being and quality of performance are:
Autonomy (freedom of choice)
Relatedness (connections to other people)
Every decision Adult Child #1 made for their mother took autonomy away from their mother.
Every explanation Adult Child #2 gave their mother about cooking took competence away from their mother.
The woman had relatedness, but all of her connections saw a negative dementia identity. That focus on a dementia identity took autonomy and competence away from the woman. Is it any wonder she was depressed?
Every single person in this woman’s family loved her and cared about her. They thought they were doing their best for her by focusing on her negative dementia identity. But their negative dementia focus left the woman depressed. So everyone lost, especially the woman.
If all of her family members saw her as responsible, the woman would be able to enjoy the autonomy she needs for well-being.
If all of her family members saw her as competent, the woman would be able to demonstrate a high quality of performance in her own life.
If all of her family members respected the autonomy, competence, and relatedness of the woman, everyone would win — especially the woman.
I ran into this woman at the grocery store. Knowing that I respected her as a responsible adult, she complained to me about Adult Child #2. That child had asked the woman if she could get herself where she needed to go. “I know where it is. I know how to drive my car. I get myself there regularly.”
I was visiting a woman who has memory problems. She needed to sign something. She knew her name. She knew how to write. She was slow when she wrote. I was ready to wait for as long as she needed to write her name. One of her adult children was present. Seeing negativity in the mother’s slow writing, the adult child took the pen and signed the woman’s name. A person who loved her took competence away from her.
Family Focus On Positive Identity
Contrast that woman’s experience with Geri Taylor’s experience. After Geri looked into her mirror and failed to recognize herself, her family didn’t focus on her Alzheimer’s identity. They didn’t limit her choices. Geri chose to expand her life. She acted on her interest in photography. She visited friends more often. She filled her days with pleasurable activities. She used her iPhone to keep track of her life and added the Find My Friends app. She created rules for living, including:
“Talk only if necessary while walking.”
When her driving skills deteriorated, Geri cut back on her driving to drive only as necessary.
Geri started doing research before talking to friends so she could keep up, but she also started speaking to groups about living with Alzheimer’s. She did these talks with her husband, Jim.
Geri met with CaringKind to say she wanted more than a traditional support group. Instead, she wanted “a peer-driven Alzheimer’s tutorial” because:
“We don’t want to be done to. We want to do.”
CaringKind set up a series of workshops “to swap tips for living with early-stage memory loss.” Geri is now a representative for the national Alzheimer’s Association. Geri Taylor’s family didn’t limit her choice, question her competence, or become discouraging connections. As of 2018, Geri has three years in as an Alzheimer’s champion, and she’s still going.
I am certain the family of the woman I had conversations with loves the woman as much as Geri Taylor’s family loves her. If only they used their love to focus on the woman’s positive identity, everyone would win.
If it’s easier for you to remember, think of the three elements of self-determination as:
Think of the choice, competence, and connections that matter to you, and you’ll understand their necessity for the people you love.
Autonomy & Competence Also Improve Physical Health
Seeing competence in its patients, Cleveland Clinic created MyChart. MyChart gives patients a measure of autonomy in their healthcare and health decisions.
“Providing state-of-the-art tools to help patients manage their health
is a vital part of Cleveland Clinic care and the patient experience.”
Paul Matsen, Chief Marketing and Communication Officer
MyChart and other patient engagement strategies “have led to dramatic improvements int the patients’ experience.”
“5 ways Cleveland Clinic improved its patient engagement strategies”
Healthcare IT News
October 1, 2013
“Best Global Brands: Cleveland Clinic”
June 2018, pages 103-111
Paula M. Kramer
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