UPDATED OCT. 22, 2007:  A 2007 estimate of the prevalence of Alzheimer’s disease among Americans reports that if affects more people than previously thought. The Alzheimer’s Association, the leading advocacy and public education organization about this degenerative brain condition, says that 5 million Americans have this incurable disease, which develops in older adults. Also, a 2007 survey by the Alzheimer’s Foundation of America shows that religion significantly influences the decisions of Alzheimer’s caregivers.

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.

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National sources

• A 2007 report from the Alzheimer’s Association, the leading public education organization about the condition, estimates that the prevalence of Alzheimer’s among Americans has risen 10 percent, to 5 million. The report breaks out increases by state. Contact in Chicago, 312-335-4078, media@alz.org.
• 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. Tom Brown is program director for Faith in Action, which is based at Wake Forest University School of Medicine in Winston-Salem, N.C. Contact 336-716-0101, tcbrown@wfubmc.edu.
• Stephen G. Post, a bioethicist at Case Western Reserve University in Cleveland 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. Contact 216-368-6205, sgp2@po.cwru.edu.
• Rita Chow is director of the National Interfaith Coalition on Aging, part of the National Council on Aging. She is involved in efforts to broaden understanding of aging in different ethnic contexts. The coalition includes representatives from many faith groups across the country. Contact 202-479-6655, rita-chow@ncoa.org.
• James Ellor is director of the Center for Gerontological Studies 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. Contact 254-710-4439, James_Ellor@baylor.edu.
• Harold Koenig is a professor of psychiatry and medicine at Duke University’s Center for Spirituality, Theology and Health and has background in gerontology. He is often quoted on the role religion plays in health, and he has written extensively on geriatric psychiatry. Contact 919-681-6633, koenig@geri.duke.edu.
• Stephen Sapp is 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, ssapp@miami.edu.
• 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. Contact 215-576-0800 ext. 256, dfriedman@rrc.edu.

International sources

• 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. Contact ykaufman@herzoghospital.org.
• Memory Care Connection is an Alzheimer’s awareness event organized by the New York-based Alzheimer’s Foundation of America. It offered free memory screenings and educational materials on the disease at participating houses of worship the weekend of June 2-3, 2007. The foundation sponsored a survey that showed that religion and spirituality play an important part in the lives of caregivers. Contact Carol Steinberg, 866-AFA-8484 ext. 101.

State by State

• The Faith in Action program of the Robert Wood Johnson Foundation funds more than 1,000 local health-care programs in 48 states, some of which serve Alzheimer’s patients. Check by state or ZIP code for local programs.
• 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.
• 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.

Background

• The federal government’s National Institute on Aging maintains the Alzheimer’s Disease Education & Referral Center. The site includes a primer on the disease.
• 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 (see Southeast sources), has compiled an extensive online bibliography of searchable resources (search by the term “Alzheimer’s” or look under the topic “care of the frail old”).

• Read a March 20, 2007, Associated Press story in USA Today on the new estimate of 5 million Alzheimer’s disease sufferers.

Regional sources

IN THE NORTHEAST

• Hospice chaplain Nancy Ledoux wrote “Ministering to Persons with Alzheimer’s Disease and Related Disorders“. Contact her at Hospice Care in Woburn, Mass. Contact 781-279-4100.
• James McCartney, associate professor emeritus of psychiatry and human behavior at Brown University in Rhode Island, has studied spirituality among older people. Contact 401-245-3288, James_McCartney@Brown.edu.

IN THE EAST

• 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. A 2001 Cross Currents article describes her experience. Contact 973-761-9461, webbgise@shu.edu.
• The Health Care Chaplaincy coordinates the work of chaplains of different faiths in New York health-care institutions and does research. One research project involves daughters caring for mothers with Alzheimer’s. Contact associate director of research Kevin J. Flannelly through marketing director Steven Shannon, 212-644-1111 ext. 141.
• Rabbi Zev Schostak is director of pastoral services at Gurwin Jewish Geriatric Center, Commack, N.Y., and a frequent speaker on geriatric issues and Jewish bioethics. Contact 631-715-2613.
• 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. Contact 301-598-5312.
• 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. Contact 212-650-5718, gmilstein@ccny.cuny.edu.

IN THE SOUTHEAST

• Henry Simmons is director of the Center on Aging at Union Theological Seminary and Presbyterian School of Christian Education. He co-wrote Soulful Aging: Ministry through the Stages of Adulthood (Smith & Helwys, 2001). Contact 804-355-0671, hsimmons@union-psce.edu.
• The Rev. David Keck is a Presbyterian minister who teaches pastoral education at Duke University and the author of Forgetting Whose We Are: Alzheimer’s Disease and the Love of God (Abingdon Press, 1996). He presented a session on Alzheimer’s and theology at a March 2007 conference at Duke on end-of-life issues. He is also pastor at Northgate Presbyterian Church in Durham, N.C. Contact 919-220-2600, dkeck@div.duke.edu.
• 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. Contact 919-660-7510, lpg@geri.duke.edu.
• 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. Contact hburchett@cox.net.

IN THE SOUTH

• Alexander P. Auchus is a neurologist at the University of Tennessee Health Science Center and the Memphis Veterans Affairs Medical Center with research interests in Alzheimer’s in non-Caucasians. Contact 901-577-7364.
• 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. Contact 205-934-6020.

IN THE MIDWEST

• Calvin College psychology professor Glenn Weaver, whose mother died of Alzheimer’s dementia, has studied the spirituality of Alzheimer’s patients. Contact 616-526-6220, weav@calvin.edu.
• 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. Kay Wallick is executive director. Contact 816-960-2022.
• 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. Contact 614-231-4900.
• 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. Contact 816-361-7878.

IN THE SOUTHWEST

• Mary Ann Duncan, vice president of programs and public policy for the Oklahoma/Western Arkansas chapter of the Alzheimer’s Association, has worked with churches in Tulsa and Broken Arrow that provide support and services for families dealing with Alzheimer’s. The state association estimates that 70,000 Oklahomans have Alzheimer’s. Contact 918-481-7741, Mary.Duncan@alz.org.
• 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. Contact through her publisher, 800-4-Gospel ext. 1256.
• Tracey Brown is executive director of The Seniors Place Memory Care Day Center in Houston, which serves older adults with memory loss. Thirteen sponsoring churches have representatives on the board of directors. Contact 713-552-0420.

IN THE WEST/NORTHWEST

• Clinical psychologist Cordula Dick-Muehlke is executive director of Adult Day Services of Orange County and has more than 20 years’ experience in the field. She lectures widely on spirituality, elder care and dementia. California has a comprehensive state program for responding to and researching Alzheimer’s disease. Contact 714-593-9630.
• 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. Contact 360-379-2578, mrichard@u.washington.edu.

This tip updates the issue of June 30, 2003