Dr. Tompkins is Assistant Professor and Director, BSW Program, Social Work Department, and Dr. Sorrell is Professor, School of Nursing, College of Health and Human Services, George Mason University, Fairfax, Virginia.
This research was funded by the Alzheimer’s and Related Diseases Research Award administered by the Virginia Center on Aging.
Address correspondence to Catherine J. Tompkins, MSW, PhD, Assistant Professor and Director, BSW Program, Social Work Department, George Mason University, 4400 University Drive, MS 1F8, Fairfax, VA 22030; e-mail: firstname.lastname@example.org.
The number of Americans with Alzheimer’s disease has more than doubled since 1980 (Dopson, 2005), with a predicted increase of 959,000 new cases per year by 2050 (Alzheimer’s Association, 2007). As the approximately 5 million American families living with this disease gradually lose control of aspects of their lives long taken for granted, they may look toward whatever in the universe they believe is in their control. For many, this may mean drawing on religious and spiritual beliefs and practices to help them cope (Beuscher, 2007). Religion and spirituality may serve as pathways for maintaining connections among individuals with Alzheimer’s disease and their families, friends, and other care-givers, even deep into the progression of the disease.
Yet, are health care professionals exploring how to help clergy maintain these connections in dementia? In the foreword to the book Educating Clergy: Teaching Practices and Pastoral Imagination (Foster, Dahill, Golemon, & Tolentino, 2006), Shulman noted that in discussing the Preparation for the Professions program currently being implemented by the Carnegie Foundation for the Advancement of Teaching, he is often met with the incredulous statement, “You’re studying the education of clergy?” (p. ix). Shulman suggested that many see the education of clergy as more veiled and mysterious than the preparation of other professionals and that many people view the clergy not so much as professionals, but as those who are called in a special way. However, clergy are increasingly faced with the need to integrate their spiritual calling with professional practices for maintaining spiritual connections for individuals in their parishes who have dementia and other chronic illnesses.
Families Living with Alzheimer’s Disease in a Faith Community
With a long history of supporting people in need (e.g., those who are poor or sick, older adults), churches are a potential source of assistance for individuals living with Alzheimer’s disease. Gwyther (1995) emphasized the importance of the symbolic and emotional aspects of faith, specifically for individuals with Alzheimer’s disease who may have lost critical intellectual capacities. Yet little research has been conducted on the church’s direct response to Alzheimer’s disease.
In a study of clergy support for family caregivers of individuals with Alzheimer’s disease, including clergy’s knowledge of community resources, Robinson, Ewing, and Looney (2000) interviewed 51 clergy and 37 families of individuals with Alzheimer’s disease. They found that rural clergy were more knowledgeable of community resources than were urban clergy but suggested that more clergy education on the disease process was necessary for both groups.
Van Willigen (1989) found that churches not only provided spiritual support or social activity but also tangible assistance. At the same time, Dyer (2001), from his research examining the relationship between spirituality and caregiving appraisal, found that churches and individual believers are presented with a challenge to find more direct and specific ways to help and support those caring for a loved one with dementia.
To address the experience of living with Alzheimer’s disease in a faith community, we implemented a grounded theory research study to focus on the question: How do members of a faith community describe experiences of spiritual connections related to Alzheimer’s disease? Both of the authors are gerontologists within their related disciplines (social work and nursing). We contacted congregations that we had worked with in the past (e.g., the first author has been on the board of a Mennonite retirement community), as well as our own churches and congregations within our local communities.
The two-phase study began with focus groups of clergy who were asked to describe their experiences caring for families living with Alzheimer’s disease. The second phase consisted of interviews with individuals with Alzheimer’s disease and family caregivers as they described their experiences of living with the disease within a faith community. This article focuses primarily on the focus groups with clergy and the implications of the study for forging needed partnerships between clergy and health care professionals.
To conduct this study, we implemented two focus groups with 12 clergy from Mennonite and Lutheran congregations. The purpose of the focus groups were to:
- Have the clergy suggest important questions to ask the family caregivers and individuals with Alzheimer’s disease in phase two of the study.
- Understand the clergy’s perceptions of their role in helping individuals and their families cope with the disease.
Many of the clergy stated the importance of simple religious rituals, such as prayer and song, in helping maintain spiritual connections for individuals with Alzheimer’s disease. One participant stated:
Ruth would pray for me these beautiful prayers, logical and biblical, and would also say, “Bless our pastor John” and so forth, and then as soon as she was through praying, she would go back to the gibberish, making no sense at all. This is an example of the importance of singing, praying, and reading the scripture with Alzheimer’s patients.
Some clergy mentioned that there “is an emphasis within the church on youth; the church is supposed to cater to young people.” However, they also noted that many churches have a growing number of elderly members within their congregations. One clergy stated:
I wanted to come here [to the focus group] to hear what others had to say about spiritual connections. I struggle with that—connecting spiritually to folks whom you don’t know if you are connecting to or not [individuals with Alzheimer’s disease].
An interesting theme that emerged from the focus group transcripts was that clergy are trained as generalists, not specialists. One focus group participant stated:
We are general practitioners, not specialists, so we have to remember that; unless you have 1,000 members [in your congregation], and you can hire a couple of associates, it is difficult to meet all the specific needs that are presented.
Another clergy stated:
I think training for pastors and chaplains is superficial in this particular area, but I do think that there is a sensitivity to anyone with any type of disability, and there’s significant training in how to be sensitive.
The lack of training related to connecting with individuals with Alzheimer’s disease noted by the clergy appears especially significant when coupled with the finding that as dementia worsens, those with Alzheimer’s disease and their caregivers may feel increasingly isolated from the faith community. As noted by one focus group participant:
One of the important components for a family member is that people recognize that this [person with Alzheimer’s] was a person and who this person was and to make that connection to value the person who has the disease. So often that person is ignored. Clergy can help the family…by recognizing who this person was…and acknowledging the wonderful things they did and comfort them.
Some clergy in the focus groups passionately expressed that it is not a matter of not wanting to respond to the needs of Alzheimer’s disease patients and their families; they are just unsure what to do. One participant said:
It wasn’t out of love [lack of love] that my people didn’t respond; it was that we don’t know what to do. Sometimes all you can do is pray; sometimes all you can do is make a phone call, and say, “We’re here for you.”
Forging Needed Partnerships Between Clergy and Health Care Professionals
The importance of the partnership between clergy, members of faith communities, and individuals affected by Alzheimer’s disease has been documented (Brat, 2001; Post, 1995; Stuckey, 1998), but defining what those partnerships should be is unclear. Findings from our focus groups with clergy suggest that little formal training is offered to clergy on how best to approach issues of religion and spirituality with families affected by dementia. Health care professionals have the education and training to mentor clergy and others in faith communities regarding how to implement practices to meet the needs of those living with Alzheimer’s disease. Clergy and congregations informed and educated about this disease would be better prepared to respond to families who are struggling with the challenges of care-giving and to help them affirm the importance of the symbolic and emotional aspects of faith for the person with Alzheimer’s disease, even in the midst of lost intellectual capacities.
But how can health care professionals work with clergy to reach out to families in the faith community who are living with Alzheimer’s disease? Health care professionals can help organize members of faith communities in building needed partnerships between clergy, individuals with Alzheimer’s disease, and their family caregivers.
One clergy suggested using congregational members in specific ways:
We have some professionals in the church whom we could utilize. We should let them know point blank that we are going to utilize them. It’s kind of an open area in our church; if you have skills, we’re going to utilize them. God gave them to you, and we’re going to take advantage of it. And they know that, so we have folks who work in the hospital, who we will make connections with purposely in order to help other people who are going through health care issues. In terms of nonprofessionals, we have established a system in the church; members of the congregation go out, they bring food to individuals in need, take them to their physician, to their appointments and so on and so forth on a regular basis.
We have another group within our congregation that felt like there was some neglecting of our “shut-ins,” people who weren’t getting stimulus from the church community, other than the minister bringing them communion on occasion and the visit. So now at least two people bring [them] a meal, prepared at the church. They [the congregation members] take it [the meal], they sit with folks while they eat that meal, they talk, and they get into their lives, and then if there are issues or concerns, they take them back to…someone in the church. It has made a tremendous difference in the connection in the church. With Alzheimer’s disease,…we try to get as many people in the church connected with them as possible.
Health care professionals can also help clergy and church members understand the difference between healthy aging and living with a condition such as Alzheimer’s disease. The need for this was made clear by the first author’s (C.J.T.) recent experience in church with her husband and two young daughters (ages 9 and 6). The author was excited to hear the minister begin the homily by talking about a new outreach mission that a few members of the congregation were pursuing: a friendly visitors’ program to local nursing homes. The visits to the nursing home residents would consist of prayers, songs, and communion. In the minister’s talk, however, she used two phrases of concern: “those little old ladies in the nursing home” and “they are there because they are old.” The author turned to her 9-year-old daughter and reassured her, “They are there because they are sick, not because they are old.” Health care professionals can help children, as well as adults, in faith communities understand that being old is not equated with having dementia. They can also model practices for helping maintain spiritual connections in the midst of diminishing memories.
One anticipated outcome of our study is to create a curriculum for an educational program for clergy and leaders in faith communities. So much potential exists within faith communities to validate the importance of individuals in leadership roles and to dialogue with other clergy and their congregations about how to help older adults and their caregivers who live with chronic illnesses such as Alzheimer’s disease. The clergy who participated in our focus groups welcomed the opportunity to talk about reaching out to families living with Alzheimer’s disease in their congregations. Perhaps more important, they appreciated the opportunity to be in the same room together with their peers, dialoguing about this important issue and hearing the ideas and suggestions of other clergy for establishing needed partnerships among individuals with Alzheimer’s disease, their caregivers, faith communities, and health care professionals.
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