Visiting a Friend in Late Stage Alzheimer’s

From Alzheimer’s: A Crash Course for Friends and Relatives: Verbal communication stops before the ability to interpret nonverbal cues. One of the first connections an infant makes is between a soothing touch or tone of voice and relief from physical distress. A smile is associated with being held, music with being rocked. People in late stage Alzheimer’s sometimes find comfort in a soft blanket or stuffed toy that brings back a sense of the security of early childhood. When words have lost meaning, nonverbal lines of communication will be left open. Remember the acronym “B-E-S-T” for ways you can continue to connect:

Body language. Lean toward the person; keep your arms open, not crossed. Open your hands.

Expression. Your facial expression can substitute for the warmth and affection you may not otherwise be able to convey. Even in the late stage, eye contact may be a way to connect. Try to let go of the expectation of a response. A caregiver, struggling with her mother’s lack, ever, of any indication of awareness of her, asks in the anguish shared by many in this role, seldom acknowledged by the patient, “Does she understand me at all? Does she hear me? I want her to feel loved. I want to comfort her. I think that’s the hardest thing.” The woman continues to reach out to her mother, despite her discouragement, believing as a matter of faith that her mother is conscious on some deep level of her love.

Sounds. Keep your voice steady. Loudness (unless the person is hard of hearing) or animation can cause agitation, since there is no comprehension of the words—the reaction is to the tone. Talk about the past or your current feelings as though the person can understand, using tone of voice to communicate. The meaning of the words is not relevant; the meaning behind them is: “Dad, I’m thinking of our first hunting trip. It was one my best times. You carried me on your shoulders, the mud was so deep getting to the duck blind.” Calming music may be better than words. 

Touch. Touch can convey love and comfort almost more effectively than words at any stage of life. (But people—young, middle-aged, and old—differ in their reactions to physical contact. If the person is pulling away or grimacing, s/he may not want to be touched. Take your cues from the nonverbal communication.) Connection with a person in the late stage of dementia is based on simple things. Sitting in a sunny window, holding your friend’s hand will be enough when s/he is no longer speaking. Think about yourself and what you most want when you’re scared or lonely and in need of comfort—it’s probably to be held. I remember sitting with my mother one night when she was very sick. As a child, I would never have touched her hair for fear of dismantling the sculpted outcome of her twice-weekly trips to the beauty salon. But her hair hung like fibers of limp cotton then, and I held her close to me and ran my fingers through it. “Oh, honey, thank you,” she said, “You have no idea....” She couldn’t finish the sentence and silently shook her head, as if to emphasize my inability to comprehend what those few seconds had meant to her. Friends and loved ones in late stage dementia may not be able to show gratitude, even indirectly, for the comfort of your presence, but imagine that if they could still form the words or make the gestures to express to you their inmost needs for nurturing contact, they would. 

Mary Cail

Mary Cail earned her PhD and two additional graduate degrees from the University of Virginia. She is the author of Alzheimer's: A Crash Course for Friends and Relatives and Dementia and the Church: Memory, Care, and Inclusion. Mary taught in the graduate school of psychology at James Madison University, where she chaired a national accreditation task force; she has served as a faculty consultant for the University of Virginia’s Department of Academic Affairs. Her op-eds, articles, and blogs on dementia have been published by the Los Angeles Times, the Miami Herald, the Chicago Tribune, Maria Shriver’s Architects of Change series, and the University of Virginia alumni magazine, Virginia, among others. Alzheimer's: A Crash Course for Friends and Relatives was chosen for inclusion in the 2015 Virginia Festival of the Book, and her work to create social opportunities for dementia patients and caregivers in her community was featured on the Charlottesville Newsplex series, Stephanie's Heroes. Mary is the founder of the All-Weather Friend.

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