Mission Yearbook: Memory care chaplain’s webinar offers spiritual care to people who have dementia
As a spiritual care provider for 25 years — the last 16 as a memory care chaplain — the Rev. Kathy Fogg Berry was a great choice to recently present a webinar on “When Words Fail: Spiritual Care and Dementia.” The Schlegel-University of Waterloo Research Institute for Aging at Conrad Grebel University College offered the webinar, which can be viewed here.
When communication is compromised, it can cause frustration, anger, fear and confusion to people experiencing dementia. That can also be true for those who have had a stroke, suffered head trauma or have been diagnosed with Parkinson’s disease.
It’s “a double-edged thing,” she said, since people visiting or building a relationship with someone experiencing dementia “can feel awkward not knowing what to say.”
“We need to learn to practice more than words,” Berry said. “We need to be creative sometimes.”
Common spiritual needs for those experiencing dementia are unconditional love, reassurance, support, encouragement, trust, acceptance, inclusion and hope, Berry said. She suggested doing a spiritual assessment with the person or their caregivers or both, although not all at once.
Ask questions like these:
What gives you comfort, peace, strength, purpose or hope?
What helps you feel closest to God or most complete?
What spiritual or religious rituals, symbols and practices are important to you?
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The Rev. Kathy Fogg Berry
“We all have things that nurture our spirit,” Berry said. “We need to … find out what that is for each person. By doing that, we can offer person-centered care.”
Berry laid out communication challenges and ideas on providing spiritual care during each of three stages of dementia: early, which can last from 1–3 years; middle, from 2–10 years; and late, from 1–3 years.
In the early stage, the person can understand most conversations and has strong social skills that appear to be normal during brief interactions, according to Berry. The person “appears to know what she’s saying, but may be unable to complete the thought,” and has difficulty following some complex or long conversations. Spiritual care in this stage focuses on offering person-centered care and building a relationship by providing “frequent presence and conversations.”
“The most important thing we can do is listen,” she said. “Listen with empathy and compassion and listen confidentially so they know they can trust us with what they have shared with us.”
For those in the middle stage, Berry suggests being fully present with the person and not rushing them. Keep the conversation positive, and don’t argue, because that can heighten anxiety and frustration. Be aware of your own nonverbal communication, such as crossed arms or foot-tapping, she advised. Be with the person in their reality, and correct or redirect them only if safety is a concern. “It’s up to us to change how we communicate to meet their needs,” she said.
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Spiritual care for those in middle stage dementia can include offering person-centered familiar spiritual or religious activities, because rituals and symbols can “provide comfort and tap into memory,” she said. Spiritual care for that middle stage can include facilitating activities that appeal to the five senses, “encouraging memories and prompting participation,” Berry said. Offer friendly narratives and not a dialogue. “We don’t need to be grilling them,” she said. “Talk about what you see in a picture: ‘Oh, your family looks so happy. It looks like you went to the beach.’”
In the last stage of dementia, the person may not recognize family members or even themselves. They have little to no speech and are less responsive or even non-responsive. But “that doesn’t mean they’re not there and they’re not still participating,” Berry said.
Spiritual care requires “a quiet, listening presence.” Offer the person a gentle touch, if it’s comforting. Provide quiet, familiar music, and try aroma therapy and other sensory stimulation. Read Scripture and say prayers, if those are applicable.
One last piece of advice: “When words fail, simply love,” Berry said. “That’s the most important thing we need to do.”
