Summary: Don't Talk About Me Like I'm Not Here
Series 05: Who You Are When You Forget
Clara Nguyen is 74, a retired civil rights attorney from Atlanta, and she is sitting at the head of the table in a care planning meeting. Her three adult children are present. Her neurologist is present. A social worker named Deborah Simms is present. Clara has early-to-moderate Alzheimer’s. She still knows when she is being talked about.
Her son has said “Mom wants” four times. Her daughter has said “she doesn’t really understand” twice. Clara says: “I am right here.” The room goes quiet. Deborah Simms makes a note. The next thirty minutes are different.
The article names what most people will not: most indignity in dementia care is not cruelty. It is efficiency. It is faster to tell the aide what Mom wants for lunch than to ask Mom. It is faster to discuss the care plan with the children than to include the person the plan is for. None of this is malicious. All of it accumulates. The person who is consistently discussed in the third person while seated in the room learns she is not expected to participate. The person whose memory errors are corrected in front of others learns to stay silent.
A picture-based menu is a low-tech dignity intervention costing less than five dollars. A laminated card with four food options shown as photographs. The person points. It takes forty seconds longer than the aide deciding. Those forty seconds are agency. The card does not require the person to name the food or remember what is available. It requires only the capacity to see four images and indicate a preference, a capacity that persists well into moderate dementia. Each removed decision is small. The sum of them is a life conducted entirely by other people.
The research base is substantial. Person-centered care approaches are associated with reduced behavioral symptoms, improved quality-of-life measures, and reduced staff turnover. The mechanism is not mysterious. People who are treated as people behave like people.
The communication strategies are specific and learnable. Position at eye level. Start with the person, not the family member, when asking questions. Give time: thirty seconds of silence is processing, not failure. Try open questions first. Do not finish sentences. Do not simultaneously translate to the family member present. Each strategy preserves something that efficiency would remove.
Deborah Simms restructured the planning meeting after Clara’s sentence. She asked Clara’s children to sit back. She turned to Clara. She asked Clara directly what mattered most to her about the next six months. Clara answered slowly, sometimes with one word, sometimes with a gesture. Deborah waited through every silence. In thirty minutes, Clara’s children learned more about what their mother wanted than they had learned in two years of discussing it among themselves. Clara wanted to keep going to church. She wanted the aide to stop choosing her clothes. She wanted her granddaughter to visit more often. None of these preferences were in the care plan. They are all in the care plan now.
“I am right here” is both the most basic thing a person can say and, in a care planning meeting for a person with dementia, sometimes the most radical. It is a claim on presence. The social worker’s job, the family’s job, the care plan’s job, is to keep hearing Clara after Clara can no longer say it herself.
Read the full article on BlueMirror.life.