Rebecca, a retired physician, often feels anxious and overwhelmed. Now wheelchair bound due to Parkinson’s disease, she’s frustrated by immobility and memory loss caused by dementia. But, when her brother, Steve, visits and plays hymns for her using his phone, Rebecca’s face exhibits joy and excitement. As the music plays, they sing along, and Rebecca seems transported to another place and time. Several hours after Steve has left, she can still be heard humming hymns.
Knowing that Rebecca’s faith is important to her, Steve takes the time to nurture her spirit in ways that she would, if she could. Her compromised memory and lack of dexterity prevent her from finding a music source and playing the hymns she loves. So, Steve addresses her spiritual needs through religious music to uplift her and bring her joy.
According to a Pew Research Study conducted in the United States, approximately 70% of people over 70 say religion is very important to them (Pew Research Center, 2018). Although statistics vary from country to country, elders are typically more religious than younger adults. Yet as people age, and memory loss may occur, they become increasingly unable to participate in religious organizations or initiate faith practices that provide comfort, connection, peace, and encouragement. Family, friends, and professional caregivers need to assist them in practicing their faith and nurturing needed spiritual and religious connections to enhance their overall well-being.
For the last 22 years I’ve served as a spiritual care provider/chaplain in long term care and hospice settings in Richmond, Virginia. It’s been my extreme privilege to minster predominantly to and with people experiencing dementia, their family care givers, and facility staff who care for them. Providing holistic care for people requires more than addressing physical, psychological, emotional and social needs. Spiritual needs must be addressed, too. Yet, we sometimes hesitate to talk about spirituality and religion with others because they are deeply personal. Too often this important aspect of peoples’ lives may go unaddressed.
We are all spiritual beings, and each person’s spirituality is as unique as he or she is. Spiritual care involves addressing the core of who we are and how we live. When grappling with spirituality and striving to answer life’s existential questions such as – who am I, why am I here, what is my purpose, does some higher power exist — many people connect with a particular religion or faith expression. They may join with other like-minded believers to follow a particular faith tradition –Judaism, Christianity, Islam, Hindu or one of many others. Some people are born into a family system which professes and practices a particular faith tradition. As they age, they may remain within their family’s faith tradition or, through self-searching and spiritual questioning, change to embrace a new faith. Some people never resonate with a particular faith group or belief in a divine being, but continue to express their spirituality in non-religious ways, such as reverencing nature or practicing various meditative styles.
Even people in advanced stages of dementia receive comfort as we provide personalized spiritual care, helping meet their spiritual needs and nurture faith connections through things like our physical presence, gentle touch, soothing prayers, scripture reading, nature sounds or sights. Whatever has historically been important to them.
Just as providing physical and emotional care requires an assessment to learn medical histories, concerns, and contributing factors, conducting a spiritual assessment helps discover a persons’ spiritual strengths and needs. Whereas physical and emotional assessments are often achieved via a list of questions on a computer or clipboard, it’s best to gather spiritual assessment information through relationship building and subsequent conversation. If a person is no longer able to easily converse due to dementia or other illness, family members or close friends can assist with completing an assessment.
Spiritual Assessment Tool
- What gives you hope, purpose, peace, joy?
Libby rarely attends church any more. She used to enjoy assisting people in need or creating craft items to give away, but now she isolates herself at home. She feels her memory loss affecting conversation and her ability to do the things she’s always done well. She’s embarrassed. A church friend, Jane, misses Libby’s presence and appears at her home one day with ingredients to bake cookies. Jane knows Libby loves helping others, so she assists Libby with setting the stove’s temperature, mixing ingredients, and preparing the cookies. They amiably chat while waiting for cookies to bake and then deliver them to another church friend who’s recently home from the hospital. Libby beams with joy and feels her sense of purpose fulfilled. Jane encourages her friend back to church, and they continue meeting for a weekly service project for months.
- What nurtures your spirit?
- Where/when do you feel the closest to God? *
Examples: Being with family and friends or your faith community, revelling in nature, enjoying your place of worship, listening to or playing music, observing or creating artwork, visiting with or caring for pets, doing acts of service for other people …
Hazel does not like being touched. She often yells out in pain from the crippling arthritis she feels, and she routinely dismisses people from her room in the care center where she lives. Hazel doesn’t recognize her children any more, much less the nurses who care for her daily. She’s often found sitting in her wheelchair by the nurses’ station where they can keep an eye on her.
One day her minister, Ben, arrives for a visit. He asks if she’d like to go outside on a beautiful spring day, and Hazel surprisingly responds, “Yes.” They sit for an hour quietly overlooking a nearby park, listening to birds sing and watching tree branches sway in the wind. Gradually a serene look of contentment captures Hazel’s face. Nurses marvel at her calmness as Ben returns her for lunch.
Prior to visiting, Ben had talked with her children about what nurtures Hazel’s spirit and where she feel closest to God. They’d unanimously agreed, being in nature.
What spiritual/religious practices or symbols bring you comfort and peace?
Examples: Meditation, prayer, being in nature, movement, a worship experience, reading sacred scripture, praying, being in a worship center, hearing or making music, enjoying artwork, seeing religious icons, a Menorah, hearing Buddhist chimes, smelling incense, …
John, an 85-year-old former accountant who has Alzheimer’s disease, can’t sit still. Much of his day is spent pacing, as if he’s looking for something. Each afternoon his wife, Margaret, prepares tea and a plate of his favorite cookies. When he sees her place them on the table, he sits and noticeably calms down. As they enjoy their snack, Margaret reads familiar scripture passages which they often repeat aloud together. She reads a brief devotional, and they close by reciting the Lord’s Prayer. John is no longer able to converse, but those few minutes of holy communication enhance each of their lives. When it’s over, John is often able to relax for a while. Practicing his faith has contributed to John’s well-being.
Even though I have been specifically addressing spiritual care for elders experiencing dementia, providing spiritual care is essential for all older people, indeed for all of us. How much healthier would we all be if we paid as much attention to our spiritual health as we do to our physical and emotional health. Not only would we experience enhanced well-being ourselves, but our spiritual health would also benefit those we seek to serve. So, what gives you hope …
Kathy Fogg Berry
is the author of When Words Fail: Practical Ministry to People with Dementia (Kregal Publications), a contributing editor and writer for Dementia-Friendly Worship: A Multifaith Handbook for Chaplains, Clergy, and Faith Communities (Jessica Kingsbury Publishers), and contributing writer for the Practical Handbook on Dementia (pccs-books.co.uk) to be published in 2022. She has been a trainer for the Alzheimer’s Association since 2004, and has spoken on spiritual care and dementia on the state, regional and national levels in the USA.
Berry, K. (2018) When Words Fail: Practical Ministry to People with Dementia and Their Caregivers. Grand Rapids, MI: Kregel Publications.
Coaten, Dr. Richard, Hofenbeck, Mark, Austin, Dr. Roz, editors. Practical Handbook on Dementia. “Spirituality and Dementia.” Monmouth, England: PCCS Books, NP25 3SR. www.pccs-books.co.uk (expected publication date in 2022)
The Practical Handbook of Dementia is the second book in a series of ‘practical handbooks’ on different mental health issues that are being edited by Dr Roz Austin, Assistant Professor Mark Hopfenbeck, and Dr Richard Coaten from a UK and international perspective. This book offers high quality, relevant chapters written by people with dementia, their carers, and leading researchers, clinicians and therapists that aim to improve understanding of practical ways of helping people with dementia to live in the community, or in care settings with dignity, and in a way that fosters compassion, creativity and growth.)
Pew Research Center. (2018) ‘The Age Gap in Religions Around the World. Why do levels of religious observance vary by age and country.’ Religion and Public Life. June 13, 2018.