When words fail
A webinar featuring a longtime memory care chaplain is a how-to on offering spiritual care to people experiencing dementia
LOUISVILLE — 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 present a webinar on “When Words Fail: Spiritual Care and Dementia,” which aired Wednesday. The Schlegel-University of Waterloo Research Institute for Aging at Conrad Grebel University College offered the webinar, which can be viewed here.
Berry’s 2018 book is “When Words Fail: Practical Ministry to People with Dementia and Their Caregivers.”
To begin her presentation, Berry displayed a clip of dandelion petals being blown off in a breeze. She called it “a good analogy for what it’s like to have dementia. You lose memories kind of randomly, and it’s unique for every individual experiencing dementia,” Berry said. As such, “we need to be creative in how we communicate with them and relate to them, and build a relationship of trust and care.”
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? Examples can include nature, family and friends, prayer, meditation, music, worship, art, animals, one’s faith community, and exercise.
- What spiritual or religious rituals, symbols and practices are important to you? These can again include prayer, worship, meditation, and scripture, along with yoga, music, icons, candles and scents.
“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.” Berry also suggested joining in activities that provide joy and comfort and encouraging “as much participation as possible with their faith community or with their spiritual practices.”
“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.”
Berry interspersed her teaching with clips that showed her ministering to people in her care who were experiencing dementia. A 95-year-old woman named Ellen tells Berry that “things don’t turn out the way you anticipate.”
“God wants to hear those things,” Berry says a little later to the camera. “God knows these things, and so it’s fine for her to voice those things.”
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.
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. A film clip showed a young volunteer named Kristen paired with 97-year-old Mrs. Perkins, who used large headphones to listen to — and sing along with — “Jesus Loves Me.”
Berry recalled another woman who wasn’t necessarily religious, had crippling arthritis and was on hospice care for lung cancer. “Most often she threw people out of her room, and I was having a hard time connecting with her,” Berry said.
One beautiful spring day, Berry invited the woman to come sit outside with her. For 30 minutes, the two listened to the birds sing, watched the breeze blow through the trees, and heard the happy sounds of children playing on their school grounds. “Over time, a smile came to her face, and her body relaxed,” Berry said. Eventually it was time for lunch, and when she got to the lunchroom, “she was in a quiet and peaceful mood I had never seen,” Berry said. “Being outside was apparently what she needed, and so I wrote that on her chart. Sometimes it takes a little detective work.”
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.
Berry played a film clip of a longtime Presbyterian seminary professor in the last stage of dementia and his wife taking communion, which Berry administered. “It’s a very important sacrament, and it becomes a very holy time for him,” Berry says to the camera. “Even though he’s not able to articulate that, you can just see it in his responses, his smiles,” and the way he opened his eyes. “Normally he’s asleep a lot of the time,” she said. “The fact that he’s alert and seemed to be connecting with the prayers — even though he couldn’t say them, there was a connection.”
“Never underestimate the power of presence,” Berry said. “We have to put aside the things that are occupying our mind … Just center ourselves so we can be fully present with that person as we’re with them.”
She quoted Thomas Merton, the Trappist monk whose mantra was “Now. Here. This.”
“Honor each person’s unique spiritual needs. That will help us provide holistic care,” Berry said. “It’s important as people progress through the difficult stages of dementia.”
One last piece of advice: “When words fail, simply love,” Berry said. “That’s the most important thing we need to do.”
You may freely reuse and distribute this article in its entirety for non-commercial purposes in any medium. Please include author attribution, photography credits, and a link to the original article. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDeratives 4.0 International License.
