Alzheimer’s and spiritual care

Five million Americans have Alzheimer’s disease according to a 2013 report by the Alzheimer’s Association, the leading advocacy and public education organization about this degenerative brain condition. A 2007 survey by the Alzheimer’s Foundation of America shows that religion significantly influences the decisions of Alzheimer’s caregivers.

Background

Alzheimer’s brings new spiritual challenges for clergy, communities and caregivers as researchers study how spirituality can be experienced and expressed by Alzheimer’s patients. Books, programs and support groups are acknowledging and exploring the spiritual dimension of living with Alzheimer’s and other dementias. Researchers and caregivers are finding that religious ritual, artifacts, song and visual symbols can be especially meaningful for Alzheimer’s patients, who draw on long-term memory or other brain capacity to experience the sacred.

Questions for reporters

  • Researchers continue to explore the ways in which spirituality benefits health. How are religious and health-care institutions in your community changing the ways they care for those with Alzheimer’s?
  • Are they finding meaningful expressions of spirituality among patients as understanding of the disease slowly grows?
  • How have these expressions reshaped caregivers’ and families’ views of faith?
  • What has surprised them about the way patients’ faith is expressed?
  • How does memory affect spirituality, when so much related to the practice of one’s faith – rituals, liturgy, Scripture and social networks – depend on memory to help make them meaningful? What do patients say?

Why it matters

Caring for the elderly is an ethical imperative in most religions, and aging and disease often challenge and deepen faith. The need to respond to Alzheimer’s in all respects – including spiritually – will grow more urgent as the number of Alzheimer’s patients increases. The Alzheimer’s Association projects that the number of Americans with the condition will grow to 16 million by 2050.

Additional information

  • The federal government’s National Institute on Aging maintains the Alzheimer’s Disease Education & Referral Center. The site includes a primer on the disease.
  • Check with chaplains or pastoral care coordinators at local nursing homes. They are the ones in the best position to observe and reflect on their patients’ spiritual needs.
  • The Forum on Religion, Spirituality and Aging is a group of experts within the American Society on Aging who deal with a wide variety of spiritual issues related to the elderly.
  • Henry Simmons, seminary professor and author of Graceful Aging, has compiled an extensive online bibliography of searchable resources.

Additional articles

International sources

  • Yakir Kaufman

    Yakir Kaufman is a neurologist at Herzog Memorial Hospital in Jerusalem. He conducted a study published in 2005 showing that spiritual people may be better protected against Alzheimer’s disease.

National sources

  • Robert Wood Johnson Foundation

    The Robert Wood Johnson Foundation in Princeton, N.J., funds Faith in Action, a program using congregations and other community groups to provide greater access to health care for the ill, including those with Alzheimer’s. Doug Smith is program coordinator for Faith in Action, which is based at Wake Forest University School of Medicine in Winston-Salem, N.C.

  • Stephen G. Post

    Stephen G. Post, a Professor of Bioethics, Religion, and Philosophy at Stony Brook University and author of The Moral Challenge of Alzheimer’s Disease: Ethical Issues from Diagnosis to Dying (Johns Hopkins University Press, 2000), is an expert on Alzheimer’s. He is the author of the 2011 book, The Hidden Gifts of Helping.

  • James Ellor

    James Ellor is a professor of social work at Baylor University in Waco, Texas, and editor of the Journal of Religion, Spirituality and Aging. His degrees are in divinity and social work, and his publications include Aging, Spirituality and Pastoral Care: A Multi-National Perspective.

  • Dr. Harold Koenig

    Dr. Harold Koenig is a professor of psychiatry and medicine at Duke University’s Center for the Study of Religion/Spirituality and Health. He wrote the white paper for the Department of Health and Human Services on faith-based responses to natural disasters and terrorism.

  • Stephen Sapp

    Stephen Sapp is a professor and former chairman of the department of religious studies at the University of Miami, a member of the Alzheimer’s Association’s Ethics Advisory Panel and founding president of the association’s South Florida chapter. He is also past chairman of the Forum on Religion, Spirituality and Aging of the American Society on Aging. He was a panelist discussing end-of-life ethics at the university’s 2011 Global Business Forum.

  • Dayle Friedman

    Rabbi Dayle Friedman is founder and director of Hiddur: The Center for Aging and Judaism of the Reconstructionist Rabbinical College in Philadelphia. She was a geriatric chaplain for years and now trains rabbis to work with the elderly.

  • Alzheimer’s Association

    The Alzheimer’s Association has more than 80 local chapters, which can direct you to any of more than 4,000 support groups for families and patients dealing with Alzheimer’s or to local faith-related resources.

Regional sources

In the Northeast

  • Nancy Ledoux

    Hospice chaplain Nancy Ledoux wrote “Ministering to Persons with Alzheimer’s Disease and Related Disorders.”

    Contact: 781-569-2888.
  • James McCartney

    James McCartney, associate professor emeritus of psychiatry and human behavior at Brown University in Rhode Island, has studied spirituality among older people.

  • Gisela Webb

    Gisela Webb, who teaches religious studies at Seton Hall University, South Orange, N.J., used teachings from world religions when caring for her mother, who had Alzheimer’s, for 10 years.

  • Ramonia Lee

    Ramonia Lee is minister for congregational life at Interfaith Chapel in the retirement community Leisure World in Silver Spring, Md., a member of the National Interfaith Coalition on Aging and a mentor in a national program to encourage the involvement of professionals of color with aging issues.

  • Glen Milstein

    Glen Milstein is an assistant professor of psychology at City College of New York. He studies collaboration between clergy and mental health professionals, with a focus on religion.

In the South

  • David Keck

    The Rev. David Keck is a Presbyterian minister who teaches pastoral education at Duke University. He is the author of Forgetting Whose We Are: Alzheimer’s Disease and the Love of God. He is also pastor at Northgate Presbyterian Church in Durham, N.C.

  • Lisa Gwyther

    Lisa Gwyther is author of You Are One of Us: Successful Clergy-Church Connections to Alzheimer’s Families (Duke University Medical Center, 1994) and director of the Alzheimer’s Family Support program at Duke University Medical Center.

  • Harold E. Burchett

    Harold E. Burchett wrote Last Light: Staying True through the Darkness of Alzheimer’s, a memoir of his wife’s Alzheimer’s disease. He has been a pastor and seminary professor, and lives in Virginia Beach, Va.

  • Alexander P. Auchus

    Alexander P. Auchus is a neurologist at the University of Mississippi Medical Center with research interests in Alzheimer’s in non-Caucasians.

  • Martha Crowther

    University of Alabama psychology professor Martha Crowther researches the role of spirituality across the life cycle. She is particularly interested in spirituality and health in older African-Americans.

  • Pamala Kennedy

    Pamala Kennedy is co-author with her husband, Richard, of Suffering in Slow Motion: Help for A Long Journey Through Dementia and Other Terminal Illnesses (Regal Books, 2003). Richard, pastor of a nondenominational church, was diagnosed with fronto-temporal dementia in 1997.

In the Midwest

  • Glenn Weaver

    Calvin College psychology professor Glenn Weaver, whose mother died of Alzheimer’s dementia, has studied the spirituality of Alzheimer’s patients.

  • Shepherd’s Centers of America

    Shepherd’s Centers of America is an interfaith network of community-based groups in 21 states caring for older adults. Headquartered in Kansas City, Mo., the organization was begun by the Rev. Elbert C. Cole, whose wife had dementia for 17 years before she died.

  • Cary Kozberg

    Rabbi Cary Kozberg, director of spiritual care at Wexner Heritage Village in Columbus, Ohio, has written about the unique, trusting relationship with God that an Alzheimer’s patient can develop. He speaks widely about Alzheimer’s.

  • Deborah Shouse

    Deborah Shouse is the Kansas City area author of the 2006 book Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. Shouse’s mother had Alzheimer’s. Shouse and Ron Zoglin are The Creativity Connection‘s motivational consultants.

In the West

  • Cordula Dick-Muehlke

    Clinical psychologist Cordula Dick-Muehlke works for the University of California’s Institute for Memory Impairments and Neurological Disorders and has more than 20 years’ experience in the field. She lectures widely on spirituality, elder care and dementia.

  • Marty Richards

    Marty Richards, a geriatric social worker in Port Townsend, Wash., who teaches at the University of Washington School of Social Work, has worked with patients, families and institutions to develop appropriate and meaningful forms of spiritual expression for people with dementia.

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