Dr. Stephen Sapp serves on the Ethics Advisory Panel of the national Alzheimer's Association and the board of directors of the South Florida Chapter, which he served as founding president in the mid-80s. He has lectured and written extensively on AD, including "When Alzheimer's Disease Strikes, a guide for families and clergy, which will soon be updated in an enlarged 3rd edition by Desert Ministries of Palm Beach, FL. He has led a support group for caregivers, and "vicariously shares the daily problems" experienced by his adult children as they provide live-in care for his cognitively-impaired mother-in-law.

Dr. Sapp, an ordained Presbyterian minister, has been associate pastor of churches in Miami and Naples, Florida. He holds A.B., M.Div., and Ph.D. degrees from Duke University, and is professor and chair of religious studies at the University of Miami, Coral Gables, Florid . He answered questions from Editor-in-Chief Wendy Bonifazi.

What is the greatest area of confusion or ignorance regarding dementia and spirituality?

I think most of us do not realize that people suffering from even severe dementia still have the ability to experience that "something more" that humans always seem to seek in life, even if those of us who are "currently able-bodied and -minded" are sure they are no longer accessible to communication. Anecdotes abound about severely demented people who have not uttered an intelligible syllable for months who suddenly recite the entire Lord's Prayer or sing along with a favorite hymn, and research is now beginning to be carried out to verify the phenomenon.

Three stories I heard recently illustrate this. First, a woman with AD in a LTC facility asked an aide her name; when he told her she said, "You know, half the time I don't know my own name." Then she pointed to a crucifix on the wall and said, "But that's OK because he does, and that's all that matters." The second story concerns a woman in late-stage AD who lay in bed repeating "Phyllis" over and over. There was no one in the family or any friends by that name, and family members thought maybe the woman had had a sibling who died young, or an unknown daughter that they never heard about. Then one day her daughter was leaning over to adjust her pillow, and realized her mother was saying not "Phyllis" but rather "Fill us," which—in the context of the daughter's knowledge of her mother's religious belief—she recognized as a reference to the Holy Spirit. And finally, a woman with AD who constantly hid her clothes, couldn't tell sugar from salt, and demanded potatoes for every meal still insisted she and her husband kneel beside their bed every night and say "Our Father." That's all she could get out, but her husband finished the prayer, whereupon she would get up and get into bed.

Illness often triggers a crisis of spirituality for patients and caregivers. What typically happens when the disease is Alzheimer's?

The first issue of course is the classic theodicy problem: Why do bad things happen to good people? I've usually heard it expressed in the more colloquial expression of "why me/us?"

I can't begin to respond theologically to that probably unanswerable question here, but after witnessing the truly amazing dedication of caregivers, I'm beginning to think that as far as they're concerned, one answer might be that this bad thing has happened to them because they're such good people—that is, I don't see how anyone but a truly good person could handle the burden of caring for a PwAD (person with Alzheimer's disease), and if some people need to believe that the sickness was in some way purposely visited upon them, then perhaps they were chosen because they have the inner strength to see it through!

We don't know for sure what is going on in the minds of PwADs. If we are to continue to value them as children of God, we must treat them as if they are still able to experience a relationship with God, and therefore God's love.

From our limited human perspective, end-stage PwADs would appear to have little capacity for conscious spirituality, but if spirituality is seen as a sense of connectedness with something beyond oneself, normal human interactions of tender touches, gentle words, and familiar faces and places (to the extent possible) certainly are called for.

In earlier stages, we know that PwADs who seem unreachable and noncommunicative through normal modes sometimes respond very appropriately to familiar hymns, liturgies (the Lord's Prayer, etc.), and visual symbols (clergy collar, communion chalice), even joining right in. Early in their illness, I would like to see PwADs continue to be included in worship and other types of community activities as long as physically able.

When the person can no longer remember, the community of faith can honor that person by remembering for him/her, thus re-membering someone that our society is all too happy to dis-member (i.e., exclude and isolate).

The common lists of losses associated with age, illness and AD usually don't mention spirituality and religious roles. Why?

I won't launch into a long historical description of how health care was "captured" by a positivistic science that automatically excluded anything religious/spiritual, and I think many health care professionals have also been hesitant to risk being seen as "imposing" their worldview on those in their care.

The pendulum is swinging back, and today more and more scientific researchers are recognizing the crucial role that religion/spirituality play in human life, especially in times of crisis and as we age. At the recent 55th Scientific Meeting of the Gerontological Society of America, several sessions dealt with its importance in the lives of aging people. One session was titled "The Role of Spirituality and Religion in Health and Work" and another dealt with "Spirit, Culture, and Society". I predict that along with genetic research, the "hottest" ticket in the research community in the next couple of decades will be the relationship between religion, spirituality and health, with a special concern for old age because of the aging of us baby boomers.

Is the current generation of caregivers more divorced from spirituality or religion than their patients?

On the whole, perhaps a case can be made for this view based on societal trends. I'm tempted to say that they may start out that way, but it is highly likely that during the caregiving experience they will come to realize that they cannot rely solely on their own inner resources or even the support of a network of family and friends, if they are fortunate enough to have one. In this case, it is not unusual to seek "something more" by turning to "something beyond," a pretty good (if not very useful) description of "the spiritual."

How are individuals affected when they lose their ability to participate in services or perform certain religious rites as competently as before?

As the disease progresses, we need to move more toward the totally familiar and the less cognitive—obviously we no longer try to explain or describe God's grace and love. Instead, we must embody it, demonstrating it in our own actions and through those familiar rituals and symbols I talked about earlier.

What is the most important message readers can get and share from this discussion?

There are two. First, that people with AD remain human beings up to the moment of their deaths, valuable beings created in the image of a God who never forgets them. Thus it is important that everyone who interacts with them—and especially those who claim to follow that God—remember that. It may be true that at some point the PwADs will no longer be aware of how they are treated, but it is important nonetheless to show our respect for them whatever their condition. Indeed, as they become more vulnerable and dependent, our obligation to do so only increases.

One of my favorite illustrations comes from the eminent social worker/researcher Elaine Brody, who tells about a very old woman admitted to the Philadelphia Geriatric Center with advanced AD. She had been unable to communicate for some time, but her only real behavioral problem was that she screamed without letup every time she was bathed. The staff, concerned about her obvious distress, talked to her family, who could offer no explanation. So they tried changing the water temperature, playing soft music, and talking to her in a soothing way. Nothing helped. Then, during one of her baths, a staff member came into the room to tell the nurse's aide something she didn't want other residents to overhear. As soon as she closed the door, the woman stopped screaming. From then on, as long as the door was closed, she accepted her daily bath with no protest; if the door were inadvertently left open, however, she screamed until the bath was over and she was dressed.

This story is important for two reasons: First, it challenges a lot of our assumptions about what PwADs can understand, but second and more important, it illustrates quite clearly that—even in conditions of severe mental and physical impairment—people still hold onto their sense of dignity and suffer if that dignity is violated.

Second, the burden on caregivers is impossible for anyone who has not done/is not doing it to comprehend, and we simply must do a better job of supporting them in every way possible. Surely this is an area in which congregations and people of faith should put forth more effort to devise creative ways to become the communities that the Abrahamic religions dominant in our culture call their followers to be.

How can others spirituality and religion aid the person with Alzheimer's?

In the early stages, PwADs can find the same comfort in the face of illness that other people do. As their cognitive ability declines, then as I said above other aspects of the religious/spiritual experience will need to come to the fore.

How can others help that happen or continue?

As long as the PwAD is able to communicate at all, eliciting his or her life story seems to be a good way to go, facilitating some life review and helping the person reach the integrity ("putting it all together," tracing out the patterns and thus the meaning of the person's life) that Erikson tells us is necessary in the last stage of life if we are to avoid despair. In early stages, this may help the person to sort through some things that are happening that he or she is aware of.

With earlier diagnosis, more and more PwADs know they have AD for longer periods of time (witness the growth of support groups not for caregivers but for early-stage PwADs), and will be capable of following this path.

As the disease progresses, others' ministry of "listening presence" and helping people find their own, inner Spirit-led way, will obviously have to take a different form, with greater emphasis on the presence part and more use of some of the approaches I mentioned earlier that rely less on cognition and more on familiar forms and rituals.

Do you know of any religious organizations providing special religious services or day care during services for people with Alzheimer's disease and related dementias?

Not specifically, but a number of people are working in this area. A brochure produced by the ACTA Foundation (730 N. Wabash Avenue, Chicago, IL 60611) called "Approaches to Worship and Prayer for Catholics with Alzheimer's Dementia," offers some useful suggestions and helpful resources.

Many people have left their religion, or turned to another. What should we do when the person with AD remembers an early faith, instead of later beliefs?

Tough question, raising the question philosophers talk about in terms of the "then self" and the "now self," that is, the person who was able to make rational choices, express conscious preferences, and act on them, and the person who may now exhibit attitudes, beliefs, and behavior quite different from those last expressed before the disease began to have its way.

This is a very complex issue, but I propose a fairly simple answer (one, incidentally, that I am not completely comfortable with if applied to other areas of the person's life but that I think I can happily defend here): If PwADs are finding fulfillment and some sense of meaning in reverting to religious expressions from their past—even if renounced for others (or for none) later in life—I suggest we facilitate such experiences as fully as we can. What is to be gained from trying to remind the person that she left the Catholic Church years ago, or that after his son was killed he vowed never to believe in God again? Anyone who has interacted with PwADs knows that such an effort will lead only to conflict and degradation of the quality of life of everyone involved, including the PwADs.

What advice do you have for partners/caregivers of a different faith?

I suggest that they call on every resource available to them in the tradition they follow because they will need all the support they can find! But you probably meant the question to emphasize the issue of the difference from the PwAD. And again I would say that if one's primary goal is truly to care for that person, whatever he or she finds meaningful and helpful should be encouraged, even if it is not the caregiver's preference for religious/spiritual fulfillment.

For the person with AD, what are the obstacles to maintaining a spiritual life or connection to God?

Obviously the major obstacle is the loss of cognitive ability, which we take to mean the person can no longer experience God because we think everything meaningful in human life depends on a functioning neocortex. Perhaps we can say that religion consists of the forms into which we put and try to capture and express our spiritual awareness/experience, thus regularizing it and giving it substance. It may well be the case, then, that people with Alzheimer's disease reach the point where they can no longer find such forms meaningful.

I am unwilling to grant that PwADs cannot still experience spirituality even after they may not be able to participate in religion. As I've said, "God never forgets," even if we do when we become PwADs or when we find ourselves to be those who all too often want to act on the maxim "out of their mind, out of our sight"!

But who are we to say God cannot continue to speak to even the most severely demented person if God so chooses, whatever our (limited) understanding of the brain says about a person's ability to comprehend human communication?

Dr. Sapp is the author of Sexuality, the Bible, and Science (Fortress Press, 1977), Full of Years: Aging and the Elderly in the Bible and Today (Abingdon Press, 1987), and Light on a Gray Area: American Public Policy on Aging (Abingdon, 1992), and former editor of the Journal of Religious Gerontology. He is a member of the American Society on Aging (and recipient of the 2002 ASA Award, its highest honor for contributions to gerontology), the National Council on the Aging, the Southern Gerontological Society, the Society of Christian Ethics, and the American Academy of Religion. He serves as chairperson of the Bioethics Committee of Miami Children's Hospital and of the Social and Behavioral Sciences Institutional Review Board at the University of Miami. He lectures nationally and internationally on aging and bioethics.