Rosemary Apol-Hoezee on Dementia and Worship
Chaplains have been using the Evening Star worship manual in memory care facilities for almost twenty years. The second edition incorporates new research on dementia to create a worship model that is even better at engaging people who live with dementia.
Rosemary Apol-Hoezee is director of quality and education for Holland Home, a continuous-care organization in Grand Rapids, Michigan. Her job includes training caregivers to provide the best evidence-based care for people with dementia. Apol-Hoezee has been a mental health nurse in geriatric and general populations and has a Master of Public Health degree. In this edited conversation, she describes a new worship planning manual for people who live with dementia.
What manual had you been using for leading worship among residents who live with dementia?
In 2003, Holland Home had a worship renewal grant from Calvin Institute of Christian Worship to explore how to meet spiritual needs of dementia care residents. A revised edition of Evening Star: Worship Ministry for Persons Living with Dementia, Handbook for Worship is forthcoming in 2024. Visit https://dementia-institute.org to find the new edition.
The manual focused on sixteen promises of God, such as how God promises to be our compassionate friend and to accept us just as we are. Even people with short-term memory loss can often retrieve longer-ago memories, so the Evening Star worship services help dementia care residents call to mind memories of favorite hymns and Bible passages.
Why did you decide to create and publish a second edition of Evening Star?
We decided to a second edition because we have learned so much more about dementia thanks to our collaboration with Teepa Snow. She is a world-renowned dementia care specialist who founded Positive Approach to Care (PAC). In 2016, I and my coworker Lynn Bolt, a nurse educator, attended an intensive PAC training that changed our lives and careers. She and I gradually learned more and helped our staff—nurses, CNAs, resident aides, recreational therapists, chaplains—become PAC trained. This gave us new insight in how to engage people living with dementia and specifically how to incorporate sensory and tactile experiences into worship to make it more meaningful.
Who gave planning input for the second edition?
Barbara J. Newman had experienced Evening Star worship when her dad was a memory care resident here. She reached out to us because there were so many parallels between her universal design work on worship with people with developmental disabilities and ours with dementia. We learned so much from her at Calvin Symposium on Worship sessions. Barb began working with us in 2019 and attended many planning meetings for the second edition before she died in 2020. Since then, we’ve learned even more from Victoria White and LaTonya McIver Penny about worshiping with differently abled people.
Our second-edition planning team also included chaplains who use Evening Star at other memory care facilities. Lynn and I were emphatic that the new edition had to be hopeful and provide comfort. The team advised us to organize the content around religious holidays and the fruit of the Spirit—except for self-control, which is often not possible for people with dementia. We worked on pairing each module with a vertical habit. Vertical habits are simple relational phrases that help people express emotions to God. So, for example, we paired the spiritual fruit of love with the vertical habit phrase “Love you.”
What’s an example of new learning about dementia that influenced your process for the new manual?
Different diseases and symptoms fall under the umbrella term “dementia.” We now know that fairly early on in dementia, people lose one out of every four words. That means every fourth word they hear is incomprehensible. Especially in the Reformed tradition, where we’re so oriented to words and sermons, many presentations aren’t so effective in reaching people with dementia. People also lose about 40 percent of peripheral vision early in the disease.
Yet late into the disease people often retain music, poetry, old hymns, old Bible versions, and prayers such as the Lord’s Prayer. They still notice sensations and what things feel like, though those senses may be muted. Even after losing fine motor skills, they can often do larger movements like clapping or holding on to things. Lynn Bolt put together a lot of the sensory and tactile exercises for the next Evening Star.
How does this learning translate into your new worship manual?
Teepa Snow uses the GEMS model to focus on what people can still do as dementia progresses. She talks more about brain states than brain stages because symptoms can vary throughout the day. Our new worship manual includes more information about dementia. The worship modules can be done in any order and include elements to reach people in every dementia brain state. Every module focuses on what people can still do, so includes sensory and tactile elements.
The introductory service for the fruit of the Spirit talks about how apples, strawberries, and other fruits grow big and beautiful as they take up nutrients and sunlight. The sunlight is like the warmth of God’s love that we all need. The worship leader engages people by asking about their favorite fruits and passing around actual fruits. We take turns wrapping a shawl or blanket around each worshiper. Some memory care residents may still be able to make metaphorical and analogical connections, like between the sun on a growing fruit or our skin and the warmth of God’s love. Others simply respond to the pleasant sensation of warmth.
Can you give another example of how to reach worshipers who experience life mainly as sensation?
We pair the fruit of peace with the vertical habit of petition, expressed as “Help!”. We use these words: “We say ‘Help!’ to God when we need his peace. Dear God, you are our refuge and strength, an ever-present help in trouble. You, Lord Almighty, are with us. Amen.” Then we tell the story of Jesus and his disciples in the boat. The disciples are afraid of the storm and wake up Jesus, who has been calmly sleeping. In response to the disciples’ cry for help, Jesus rebukes the sea with “Peace, be still” (Mark 4:39, KJV). We shake a snow globe to talk about storms. We ask worshipers to help hold corners of a big blue blanket and toss around a toy boat. Then we make everything go still.
From Barbara J. Newman’s book Accessible Gospel, Inclusive Worship, we got the idea to tie ribbons to headbands. Worshipers wave them around during songs, especially to express praise and thanksgiving.
Who do you see as the main audience for the second edition of Evening Star?
We’d especially like to get this in front of clergy. However, we’ve worked hard to make this a manual that either a clergyperson or a layperson could use. We want non-pastors to feel comfortable leading a service in a memory care residence if they choose to do so. Besides including more content about how brains change with dementia, the second edition explains how those changes affect the way we craft the worship services, how we speak, the words we use, and so on.
We also hope that people use this learning in their congregations, whether it helps them to talk with church members who live with dementia or to craft worship services that include all ages and abilities or new Americans who are learning English.
Where can people find this worship manual?
We will sell it through the Holland Home website. Those who purchase Evening Star (second edition) will be able to access a video that shows one of our chaplains leading a service and one of our residents engaging in some of the ancillary activities.
Is there anything else you want to say?
We are seeing more early-onset dementia among people in their 60s. Older memory care residents often love “The Old Rugged Cross,” “I Come to the Garden Alone,” “Jesus Loves Me,” and other traditional songs and hymns. But some baby boomers with dementia didn’t grow up resonating with hymns and gospel songs, so people leading Evening Star worship need to be quick to mix up Christian music genres for different generations. In general, going with the flow is a necessary skill to engage and worship with people who have dementia.
LEARN MORE
Watch Holland Home’s brief “Dementia Journey” video (7 min., 15 sec.) to get an immersive sense of what dementia feels like. Download Holland Homes’ Dementia Care Handbook, which describes Teepa Snow’s GEMS model (pp. 18–24). Gather a group to read and discuss Second Forgetting: Remembering the Power of the Gospel During Alzheimer’s Disease, by Benjamin T. Mast, or Dementia Guide for Faith Communities and Leaders, by Rev. Linn Possell and Teepa Snow.