The Role of Congregations in Dementia-Friendly Communities
Susan H. McFadden and John T. McFadden
The phenomenon of dementia is among one of the most pervasive pastoral and theological challenges facing the Western church at the beginning of the 21st century. (Kevern, 2009, p. 408)
The church is the only place where there is truly any hope of understanding and responding to the affliction of dementia. (Barclay, 2012, p. 98)
In 2013, we were privileged to attend the annual meeting of Alzheimer Europe, a consortium of policy makers, researchers, and program providers from all over Europe and indeed, the world.
The theme of the conference was dementia friendly societies. Because creating a dementia-friendly community in northeast Wisconsin is the central goal of the Fox Valley Memory Project, the organization that we helped launch in 2011, we knew we had to be there. Never in our long married life did we imagine we would visit the island nation of Malta, but when we learned about the theme of the Alzheimer Europe conference, we knew we had to find a way to get there. We met creative, passionate people from many countries who are rallying communities to enable people with dementia to live well with a progressive, terminal condition that is highly stigmatized and often narrowly discussed through a biomedical depiction of brain failure.
Photo: The Gathering Place.
Coinciding with the aging of the baby boom generation, attention to the need for dementia-friendly communities has grown worldwide since the turn of the 21st century. Brookmeyer et al. (2011) estimate that by 2050, over 13 million Americans will be living with Alzheimer’s disease (AD), the most commonly diagnosed form of dementia. Many other Americans will have different dementia diagnoses (e.g., vascular dementia, Lewy Body Disease, fronto-temporal dementia and mixed forms of these and other types that can co-occur with AD). Those interested in estimating the number of persons in their counties who may have AD can use 2010 US Census data and do some simple math using findings from a study by Hebert et al. (2013). About 4% of persons age 20-64 may have diagnosable AD, some with the inheritable young onset type which begins when people are in their 30s and 40s, and some with the early onset type which starts in the 50s and 60s. Even more may be living with presymptomatic AD, meaning that changes occurring in the brain have not yet been expressed symptomatically. (This is currently a major focus of biomedical research aimed at finding a cure or at least a way of preventing symptoms.) About 13% of persons age 65-74 fall into the category of having AD; 44% of persons age 75-84 may have AD and among those 85 and older, Hebert et al. (2013) state that 38% have AD.
The Christian story reframes dementia as being "as much relational and social as it is neurological."
Pastors can do similar calculations on age data from their congregations. Because no cure or even effective long-term treatment exists, and none is expected for at least a decade or more, communities—including some faith communities—are recognizing the need to address a condition that causes painful social exclusion of persons with the diagnosis and their care partners. This exclusion exacerbates the cognitive challenges experienced by people with dementia (Kitwood, 1997) and can produce depression and anxiety in care partners. If we truly are committed to good quality of life of our family members, friends, and neighbors living with dementia, then we must make our communities more welcoming and inclusive.
In this paper, we offer a widely used definition of dementia-friendly communities and show how ten key components fit well with the Christian call to “bear one another’s burdens” (Galatians 6:2) and love our neighbors as ourselves. We then share some practical advice on how congregations might get started in becoming more dementia friendly, note potential barriers to this process, and conclude by showing how the Christian story offers us the reasons and the resources for becoming dementia friendly. As theologian John Swinton has said, Christianity presents a “counter-story” to the familiar biomedical story of loss and dissolution. The Christian story reframes dementia as being “as much relational and social as it is neurological” (Swinton, 2012, p. 71) and it teaches us that we can enjoy relationships of laughter, pleasure, joy and love with persons living with dementia even as we also acknowledge and lament their pain, loss, and suffering.
What is a Dementia-Friendly Community?
For several years, researchers with the Alzheimer’s Society of the United Kingdom have studied what people living with dementia want from their communities. In their detailed report, they state:
A dementia-friendly community is one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them. (Alzheimer’s Society, 2013)
Dementia may take a toll on memory and cognitive ability, but it cannot take away our relationships with God, family and friends.
The Alzheimer’s Society lists 10 key areas for communities to address if they are attempting to become dementia friendly. None relate specifically to faith communities, but we believe that all can be useful to congregations striving to be dementia friendly and to provide leadership to their communities on new ways of providing hospitality and inclusion to persons living with dementia.
Involvement of people with dementia. The disability rights movement has long embraced the slogan “Nothing about us without us.” Congregations seeking to become dementia-friendly should always insure that people with this diagnosis and their care partners are included in discussions of how to achieve that goal.
Challenge stigma and build understanding. Congregations have many forums in which they can do this: through worship and preaching, educational programs for all ages, and community programs.
Accessible community activities. Is there anything structural or programmatic about the church that excludes persons with dementia, especially those who are less mobile? Can they hear and see when they attend worship and other church activities? Because most persons with dementia are 65 and older, what congregations do to improve accessibility for elders should benefit those with dementia.
Acknowledge potential. Persons with dementia can make positive contributions to their faith communities. Certain adaptations may be needed. For example, an individual might be able to read Scripture during worship if an assistant points to the lines.
Ensure an early diagnosis. Countries around the world are emphasizing the importance of early diagnosis but this can only be beneficial if there are accessible, appropriate programs and support services in place. Faith communities can offer reassurance in the face of people’s fears of rejection over a dementia diagnosis and they can advocate for better, more compassionate approaches to diagnosis and follow-up care.
Practical support to enable engagement in community life. This kind of support benefits both the person with dementia and the care partner. For example, through congregational befriending programs, trained volunteers can take people with dementia to events in the congregation and the wider community.
Community-based solutions. The Alzheimer’s Society frames this key area in terms of supporting people with dementia living in environments ranging from private homes to locked memory care facilities. An example of a faith community-based approach to promoting mental and physical well-being is the parish nurse.
Consistent and reliable travel options. Many congregations face the challenges arising when people can no longer drive and public transportation is unavailable. Safe, reliable, respectful options are needed.
Easy-to-navigate environments. Are bathrooms accessible? Can older people get to fellowship halls located below the sanctuary? Is there a place where people can be safely dropped off near the entrance of the church? Are walks kept clear of ice? Can people with walkers and wheelchairs navigate to find comfortable seats in the sanctuary?
Respectful and responsive businesses and services. The Purple Angel program is an international effort to train people working in retail stores, restaurants, and public venues in offering hospitality to people with memory loss and confusion. Churches can display Purple Angel decals indicating that their staff and members are “dementia-aware” and they can encourage others to receive the brief training to do likewise.
A congregation that is moving toward being more dementia friendly should start with a self-assessment.
Practical Advice: Where to Start
A congregation that is moving toward being more dementia friendly should start with a self-assessment, or, in other words, the inward turn. That should be followed by an outward turn toward the community to identify potential collaborators and even possible funding sources.
The inward turn. There are many good toolkits available to help organizations and communities assess their dementia friendliness. One comes from the Minnesota organization, Act on Alzheimer’s. Their toolkit can be adapted by congregations to identify needs of people with a dementia diagnosis and their care partners.
One place to begin would be to identify those persons known to be living with dementia, whether as a diagnosed person or a care partner. This will sometimes be a challenge because social stigma often influences people to keep the diagnosis hidden. People who we might identify as care partners to someone with dementia may not be ready to accept that role designation. Thus, the process of becoming aware of dementia in church members needs to be approached with sensitivity.
The congregation should be sure to include persons living in various care settings, ranging from assisted living to memory care facilities. In addition, because people with dementia sometimes move to be closer to adult children, congregations should also determine whether it is important to stay in contact with them and their families. Would they and their families appreciate receiving reminders that the church still remembers them and cares about them?
As noted as one of the “key areas” of a dementia-friendly community, it is important to assess the physical space, as well as the church’s printed materials. Can people with memory loss and confusion easily navigate them? We often do not realize how much liturgy and educational offerings privilege high levels of cognitive acuity. Aileen Barclay, who cares for her husband with dementia reflected on this situation by saying:
Whether formal or not, the liturgy is most often presented in cognitive form ...
Whether formal or not, the liturgy is most often presented in cognitive form with little attempt made to address the needs of those in our midst unable to do so. It is as if to be a human person loved by the God of the Cross to which we direct our worship means to have the cognitive abilities to think and reason. (Barclay, 2012, p. 89)
Of all the organizations in our society that offer opportunities for persons to get together in person, faith communities stand out as one of the few that include people of all ages. This means that churches are well positioned to provide education about dementia and God’s abiding love for persons rejected in our society because of their cognitive status. These educational offerings should not be confined to the church school or adult education programs. If a church has several members who live in some form of long-term care, programs can be provided at those locations. These can be very important because we find that some of the worst ageism and negative attitudes about dementia are expressed by elders. We related a story in our book about a group of women living in an assisted living facility who told us that they needed to learn kindness because they observed that their neighbors were not always kind to one another (McFadden & McFadden, 2011). Many congregations have deacons and other visitation teams. However, these individuals may be reluctant to visit persons living with dementia. They would benefit from guidance on how to communicate with individuals who may not remember their visit, but who will enjoy the interaction in the present moment. One book specifically written for congregations gives advice on how to visit people in their homes, in nursing homes, and hospitals (Goldsmith, 2004). Similarly, pastors would benefit from this guidance as they often hesitate to visit elders with dementia. Seminaries are woefully negligent in training clergy about aging and dementia, and one sometimes hears ageist remarks from clergy who doubtless feel anxious about their own aging. In a book he co-authored with Jane Thibault, Richard Morgan observed:
Often clergy tell me they are too busy or unprepared to do pastoral care for their members with dementia at home or in locked memory care facilities. One pastor remarked to me, “Why are you wasting your time with those people? They’re out of it. They will never remember your name, and in ten minutes they will forget that you ever came to see them.” But no act of love is ever wasted! (Thibault & Morgan, 2009, p. 52)
Christian churches need to be in conversation about the growing theological literature that addresses dementia. One place to begin would be the work of Scottish theologian, John Swinton. He has published many journal articles on dementia as well as an excellent, accessible book (Swinton, 2012). British theologian, Peter Kevern, became interested in dementia after his mother received the diagnosis. He is also doing excellent theological work on dementia. A university library could offer assistance in locating his publications.
Scottish pastor, Malcolm Goldsmith, summarized the need for theological reflection on dementia like this:
We therefore need a theology of patience, of suffering and of “failure”. We need an open-ended, non-judgmental and merciful theology. Not a theology of certainty, but of tentative exploration, for we are confronted by a strange and foreign world, and it really does challenge us as to whether it is possible to sing the Lord’s song in it. (Goldsmith, 2004, pp. 203-204)
Many creative possibilities await those congregations willing to commit to offering programs and services to serve not only their own members, but others as well.
The outward turn. Once the congregation has evaluated its own dementia friendliness, and identified ways it can improve ministry with and by persons experiencing memory loss and other cognitive problems, it may make a decision to reach outward to the community at large. Many creative possibilities await those congregations willing to commit to offering programs and services to serve not only their own members, but others as well. An excellent example in Wisconsin is St. Paul Lutheran Church in Sheboygan Falls. Some years ago, this congregation developed The Gathering Place, a day services program for people with memory problems. Amazing Place, in Houston, TX, is an example of what can happen when congregations collaborate to care for individuals with dementia. Founded by a Methodist pastor, it now has its own building and over 20 staff persons.
Several faith communities in Wisconsin have asked the Fox Valley Memory Project about our memory cafés. Memory cafés are programs rather than places, as they can be as easily held in church fellowship halls, public libraries, or nature centers, as in private cafés. They offer people diagnosed with dementia and their care partners the opportunity to gather for two hours of socializing and fun without any stigma regarding a person’s confusion or inability to remember (McFadden & Koll, 2014).
Funding for dementia-friendly programs that reach beyond the walls of the church will be a challenge. However, given increasing public awareness of the number of persons having dementia, funds are available to launch—if not to sustain—programs. We have been very fortunate to receive grants from our local community foundation and from a large private, family foundation. A congregation would have to collaborate with some kind of community social service organization if it identifies funders that do not support religious organizations.
Potential Barriers to Becoming Dementia-Friendly
The lack of seminary training about aging and dementia has been a problem for decades. Rabbi Dayle Friedman, author of many books and papers offering Jewish perspectives on pastoral care of elders (e.g., Friedman, 2008), edited a special issue of the Journal of Religion, Spirituality, and Aging with 13 papers on various aspects of seminary training (Friedman, 2011). This was the first time in 20 years that a major journal had addressed the topic of education for ministry with older persons. The list of training needs is long, and the road to providing them is rocky, as demonstrated by several excellent programs that failed due to lack of funding. Too often, seminaries and the congregations served by their graduates assume that the bulk of pastoral energies need to be focused on youth and young families when in fact, it is elders who make up the largest age group of the church. Even congregations that appear not to have many older people (e.g., some of the so-called “mega-churches”) serve persons who are caring for parents and grandparents with dementia.
In her article lamenting her husband’s dementia, Aileen Barclay wrote about another barrier to churches becoming dementia friendly: Individuals living with the diagnosis may not feel like their difficult situation is taken seriously by congregants or pastors who insist on always being cheerful and positive. She said, “I withdrew from my lively church, just unable to face people who keep telling me what a wonderful person my husband is” (2012, p. 80).
Finally, some individuals are extremely reluctant to have anyone know that they are living with dementia, either as a diagnosed person or a care partner. A study of elders’ feelings about their spiritual identities once they were diagnosed found that most people talked about their faith giving them strength and hope, a sense of not being alone, support for a positive attitude, and valuable support from fellow congregants. Faith communities can produce toxic gossip that is intrusive and painful. One woman with dementia told the researchers,
I really don’t like my private information being bandied about and occasionally being the object of church gossip. That’s pretty much what these prayer requests are. They think, “Oh poor courageous man to be bearing so much from her for so many years.” (Sullivan & Beard, 2015, p. 80)
By honestly facing their own ageist assumptions and behaviors, their fears about dementia, and their insensitivity to individual differences in how people feel about having their personal information shared, faith communities can begin to eliminate the barriers to becoming dementia friendly.
Dementia undeniably changes our ability to produce or contribute in conventional terms.
Why Should We Do This?
The secular world too often defines persons’ worth in terms of what they can produce or contribute. Elders in particular sometimes sigh “I’m just no good to anybody anymore” or “I never want to be a burden on my children.” Dementia undeniably changes our ability to produce or contribute in conventional terms. But does that mean that people living with dementia no longer have value or worth?
In Jesus’ time, personhood was generally defined in terms of corporal being—the body was the person—which is why leprosy was the most dreaded of diseases. Our own era is sometimes described as “hypercognitive” (Post, 1995) because personhood is so strongly associated with the ability to think logically and exercise autonomy. This explains why elders fear dementia more than cancer or heart disease.
Congregations should look to scripture and Christian tradition to expose the inadequacy of these definitions of personhood. We might begin with the Holy Trinity: Christians believe that God is defined by the internal relationship between the persons of the Father, Son, and Holy Spirit. We do not understand God as a corporal body: “No one has seen God” (John 1:18). Nor can we comprehend the mind of God in terms of human cognition: “Even so the thoughts of God no one knows…” I Cor. 2:11). We understand God through relationships—our relationship with the God who loves us perfectly no matter what our condition or circumstances, and God’s internal relationship expressed as Holy Trinity.
Fourteenth century mystic Meister Eckhardt, in speaking of the Trinity, wrote “when the Father laughs to the Son and the Son laughs back to the Father, that laughter gives pleasure, that pleasure gives joy, that joy gives love…” Laughter, pleasure, joy and love: these are the expressions of the relationships, human and divine, which define our personhood. In its course, dementia may take a toll on memory and cognitive ability, but it cannot take away our relationships with God, family and friends. There can still be laughter, pleasure and joy, and love can still be both given and received. A person with dementia remains fully a person, and can continue to be engaged with the life of the faith community.
Older persons in general are too often reduced to caricatures of personhood by our society—the “cranky old coot,” the “sweet old lady.” Congregations are also guilty of describing their older members in reductionist language—not “our cherished members residing in long-term care facilities,” but “our shut-ins.” If dementia becomes a part of the journey of aging, a layer of stigma is added and our language becomes even more dismissive: “he’s just an empty shell now.” As we have shown, too often these members of the faith community are treated as no longer worthy of our time and attention. They might be remembered in a generic prayer, or even receive an occasional bouquet of leftover altar flowers and a cursory visit. However, where else but in congregations can people learn how to be present to them as friends, sharing laughter, pleasure, joy and love? Theologian Stanley Hauerwas has taught us that congregations should function as schools for friendship, including friendship with persons with dementia (McFadden & McFadden, 2011).
Given the demographics of aging in our society, more and more friends will be making the journey of dementia. As persons of faith, we need not have them to make that journey alone. The person with dementia is a beloved child of God and a member of our community. We need to include them in our common life—worship, mission and fellowship—to the fullest extent possible. We need to support our members caring for someone with dementia, living Paul’s calling to “bear one another’s burdens (Galatians 6:2).” We must be a strong moral voice in a society that stigmatizes dementia and fears aging. We must affirm, and help create, the goodness of life in all circumstances.
Dementia undeniably brings suffering—for the person diagnosed, for family members, and for friends and community. The church must be a setting where suffering is acknowledged and addressed. When a member of our community is diagnosed with dementia, it should be treated as any other medical condition that will bring suffering and, ultimately, death. We should pray for and with our friends, and give them the opportunity to express the fear and anxiety which inevitably accompany the diagnosis. This will become even more essential as persons are diagnosed with dementia at a younger age in the coming years. As noted by Kevern, “there is a good case to be made for developing a person’s spiritual resources as they come to terms with the early stages of dementia” (2011, p. 384). Above all, people need to know that the journey will not be made alone, that the community will be there for them in each stage of dementia. We cannot remove the fear, but we can be present as faithful friends.
As the disease progresses, people will have increasing problems with memory. A point may come where they no longer remember our names, or our faces, and they may no longer recall their own stories. But because we have shared the joys and challenges of life with them over time, we remember, and we can tell their story for them. Memory is not solely an individual possession, but is shared in community. We can keep our relationship grounded in our friend’s narrative, because “it is narrative that makes for meaningful connection between people, with or without dementia” (MacKinlay, 2012, p.80).
People with dementia should be encouraged to continue in the worship life of the congregation. Even if cognitive loss makes it difficult to comprehend a sermon, God’s presence can be experienced through the familiar hymns, texts and liturgy. Their continuing identity is affirmed when long-time friends smile and greet them by name.
Likewise, people with dementia can share in many of the “housekeeping” tasks essential to the life of the congregation—assembling Sunday bulletins or folding newsletters—which offer opportunities for social interaction and service with fellow members. They can still be spiritually fed by Bible study, even if critical reflection on the text is no longer possible. Scripture can speak to us in all circumstances, providing comfort and hope, and simply being a participant with others is an antidote to loneliness and isolation. Congregations too often dwell on the things that persons with dementia can no longer do, rather than focusing on the many things that remain possible and can keep them feeling connected and valued by their congregation.
It is essential for congregations to support care partners of persons with dementia. As Richard Taylor (a clinical psychologist living with dementia) has noted, if we want to help our friends with dementia, we should help the ones providing the primary care for our friends (Taylor, 2007). The care partner’s world has been turned upside down, filled with daily challenges. Participation in “normal” activities can become a rare and cherished occasion. To have dinner with long-time friends who are sensitive to the circumstances can be a wonderful blessing. To have a friend come to the home to sit with the person diagnosed while his or her care partner runs errands, or simply sits in a park and reads, can be restorative.
Congregations also need to provide support and appreciation to those who work in aging services, particularly long-term care. In a society that treats elders who are physically frail or experiencing dementia as no longer having worth or value, the persons who care for them are also told in various ways that the care they provide has no real worth or value either. As Malcolm Goldsmith noted about long-term care staff, “they maintain the fabric of this world and their work is their prayer” (2004, p. 173). Above all, congregations need to become educated about dementia and educate those outside the church. We must counter the stigma by telling a different story about dementia than the one told by the secular culture. We must counter the message of fear with a message of hope. We must counter the lie that the person with dementia is “no longer with us” with the truth that personhood, and the dignity and worth that accompany it, can never be lost. “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord” (Romans 8:38-39).
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Susan H. McFadden, Ph.D., retired as Professor of Psychology, University of Wisconsin Oshkosh, in 2012. Her two areas of scholarship and research are the psychology of religion and the socio-emotional factors affecting well-being in persons with dementia. She continues to work with graduate and undergraduate students conducting research and evaluations for the Fox Valley Memory Project (FVMP). She is actively involved with the efforts of the FVMP to create a “dementia-friendly community” in the Fox Valley region of Wisconsin. John T. McFadden, M.Div., is an ordained minister of the United Church of Christ who served in parish ministry for 34 years. After retiring as senior minister of First Congregational Church in Appleton, he became the first workplace chaplain for Goodwill Industries of North Central Wisconsin. He is currently serving as memory care chaplain at Appleton Health Care Center and as a dementia advocate in Wisconsin. Their book, Aging Together: Dementia, Friendship, and Flourishing Communities, was published by Johns Hopkins University Press in 2011 and was released in paperback in 2014. Susan and John give many talks in Wisconsin, other parts of the US, and internationally. They facilitate one memory café gathering each month in Appleton, WI, and provide leadership and support for the other programs of the Fox Valley Memory Project (www.foxvalleymemoryproject.org).