Abstract
Dementia, including Alzheimer’s disease, is affecting the African American community at alarming rates, as African Americans have a greater risk of dementia than other races. The African American church has traditionally been a safe haven where families go for support and healing. However, many churches are not equipped to support families living with dementia. The purpose of this study was to explore ways African American churches can be dementia-friendly to support families affected by dementia. A qualitative descriptive design was used to collect data from 12 African American community stakeholders. Participants were inclusive of caregivers, church leaders, community members, and service providers. During the semi-structured interviews, participants were asked to share characteristics of a dementia-friendly church. Thematic analysis was performed using data from interviews, researcher’s journal, and field notes. Responses described a dementia-friendly church as (a) resourceful; (b) welcoming and friendly; (c) inclusive and comfortable; (d) understanding and accepting; and (e) concerned about personal well-being. This study has wide implications not only for African American churches and families, but also for families living with dementia outside of African American faith communities. These findings allow for faith leaders and churches to begin the process of becoming dementia-friendly, thus enabling congregations, communities, and persons with dementia to continue living in meaningful ways. In conclusion, churches are a source of religious support and provide access to resources for families in difficult times. Thus, it is imperative for African American churches to explore ways to best support and meet the needs of families living with dementia.
Introduction
Alzheimer’s and other dementias are affecting the African American community at alarming rates, as African American adults have a greater risk of dementia than other races (Alzheimer’s Association, 2019; Matthews et al., 2019). Persons living with dementia not only lose their memory, but also their identity (MacKinlay & Trevitt, 2010). In spite of the care provided to them, they continue to remain disconnected from the world. Spirituality and faith communities can help connect these individuals to the world (MacKinlay & Trevitt, 2010). A church is an ideal faith-based setting since most of the older adults are accustomed to this environment (Pew Research Center, 2015). Prior to being affected by dementia, many of these individuals were heavily involved in their faith communities or churches. The Mental Capacity Act 2005 suggests that the religious needs of persons living with dementia must be met and addressed (Higgins, 2013). It has been suggested that churches respond to health needs of individuals living with dementia by providing orientation, a safe environment, and social support (Adams, 2013).
African American families identify the church as a place of refuge, resources, and support (Collins, 2015; Morris & Robinson, 1996). The African American church has also been a major player in addressing public health problems and improving community health (Brewer, 2019; Giger, Appel, Davidhizar, & Davis, 2008). For example, The Balm In Gilead (2012) is a faith-based pioneer organization that partners with churches to offer educational and training programs to improve health outcomes specifically in African American communities. One of the programs established by The Balm in Gilead is The National Brain Health Center for African Americans (2016), which implemented the “Memory Sunday” initiative to raise awareness of cognitive health in churches.
Historically, the church has served as a major spiritual foundation for African American families (Martin & Martin, 2002). More than half of African Americans (53%) in the United States report attending religious services at least once a week while 75% of African American older adults deem religion to be very important to their well-being and have a stronger presence of religiosity compared to other racial/ethnic groups (Pew Research Center, 2009). Therefore, the church is ideal to offer support and services for families affected by dementia. Additionally, it is a viable social and religious institution that can use its platform to advocate for dementia awareness to meet the needs of congregants living with dementia and to play a pivotal role in addressing dementia misconceptions among its members and the African American community. The church is a prominent institution in the African American community; thus, African American churches are expected to respond to the needs of their members and community (Rowland & Isaac-Savage, 2014; Williams, Glanz, Kegler, & Davis, 2012). The church is often seen as a great resource to provide vital information capable of improving the quality of life for African American families and the community (Butler-Ajibade, Booth, & Burwell, 2012),
One’s ability to express their internal feelings and beliefs to the sacred changes over time as cognition declines (Kevern, 2015; Swinton, 2007, 2014). The progression of dementia may negatively impact the ability of a person to reflect on their religious beliefs as a coping mechanism, but receiving pastoral care in the early stages of dementia and finding meaningful religious activities may be a significant factor in maintaining spiritual connectedness (Katsuno, 2003). Attending church can help a person living with dementia identify themselves and maintain serenity. Encouraging persons living with dementia to attend church can help them be a part of an activity that they were once engaged in, thereby helping them identify themselves again (Plunkett & Chen, 2016). The familiarity of the church setting can also promote inner peace for the person living with dementia (Hepburn & Johnson, 2014; Swinton, 2014).
Feelings of embarrassment related to uncertainty about the behavior of the person living with dementia and fear of stigma often discourage families from attending church (Katsuno, 2003). Recognizing the importance of the church and faith traditions in the African American community, many churches fail to provide support for persons living with dementia and their family caregivers (Plunkett & Chen, 2016). Families affected by dementia often reach out to their church for assistance, lending weight to the impact that the church can have for these families by developing programs and resources to support them (Stansbury, Marshall, Hall, Simpson, & Bullock, 2018). While clergy in churches have historically supported the African American community, there is a lack of research of how churches can properly support families affected by dementia. Therefore, the purpose of this study was to explore ways African American churches can be dementia-friendly to support African American families affected by dementia.
Methods
A qualitative descriptive design was employed to collect data to better understand ways African American churches can be dementia-friendly to support families affected by dementia. A qualitative descriptive design provides a platform for exploration of participants’ views with marginal interpretation from researchers, making it useful to gather knowledge for development or adaptation of future programs and interventions (Neergaard, Olesen, Andersen, & Sondergaard, 2009; Sandelowski, 2000, 2010).
Data collection
Initial recruitment emails were sent out to a 14-member project design team established by the primary researcher (F.E.). Project design team members further contacted potential participants, who arranged contact with the primary researcher. Thus, the core technique to recruit study participants was snowball sampling. Participants were recruited until data saturation was attained and no new information that would enhance the findings of this study (Given, 2008; Hennink, Hutter, & Bailey, 2011).
Non-probability sampling methods were used to recruit a convenience sample of participants. Participants were recruited from the South Atlanta Metropolitan area and were included on the basis of (a) identifying as African American; (b) identifying as a church leader, community partner, service provider, or current/past caregiver of people living with dementia; and (c) the ability to communicate in English. Persons with cognitive impairment or living with dementia were not included in this study. Interested participants provided informed consent and received a $25 gift card upon completion of the interview. Semi-structured one-on-one interviews were held in mutually agreed upon locations, such as home and church settings, over the course of two months and lasted up to 60 minutes.
Semi-structured interview questions were broadly focused on describing a dementia-friendly church. Questions included: (a) What does dementia-friendly mean to you? (b) How can African American churches become dementia-friendly? (c) How can the church infrastructure be modified to become dementia-friendly? and (d) What things do you feel are important for African American churches to do on this journey? Further information specific to how African American churches can support families affected by dementia was gained by using probes. The interviews elicited recommendations on how African American churches can become dementia-friendly to support African American families living with dementia. Interviews were audio-recorded and transcribed verbatim. Brief field notes were taken by the researcher during each visit and expanded upon immediately after interviews, along with a journal to capture the researcher’s immediate impressions and perceptions.
Data analysis
An inductive, thematic approach was used for analysis considering the semantic and pragmatic content and field notes (Braun & Clarke, 2006). Transcripts were independently reviewed by the primary nurse researcher (F.E.) and a research assistant with a public health background (K.A.) to identify emerging concepts and themes related to a dementia-friendly church in the African American community. During the first phase of analysis, transcripts were independently read several times to gain familiarization with content before convening to identify and define initial concepts and themes. Secondly, a preliminary codebook was designed. The team continued to review and code transcripts independently. The team met regularly to discuss coding decisions in a collaborative fashion. Coding differences were brought forth to a third member of the research team (V.H.) to resolve discrepancies. As patterns in the data became apparent, the codebook was modified in an iterative fashion: adding, subtracting, and refining codes as needed and grouping related codes. The research team examined the grouping of codes to form themes: (a) resourceful; (b) welcoming and friendly; (c) inclusive and comfortable; (d) understanding and accepting; and (e) concerned about personal well-being. The themes were then clearly defined in terms of what they represented (Table 1). Key quotes were extracted to support the themes. Coded data were maintained in a secure electronic database.
Definition of emerging themes.
Validity and reliability/rigor
To further foster rigor of data collection and enhance data analysis, member checks were conducted with nine participants to confirm accuracy of their responses, results were shared with the design team, and brief field notes were taken by the primary researcher during each visit and expanded upon immediately after interviews (Lincoln & Guba, 1986; Neergaard et al., 2009; Sandelowski, 2000). Acknowledging how the background and values of the researcher can influence the research, any potential bias was minimized by bracketing preconceptions and assumptions at the beginning of this project and throughout the project through reflexive journaling (Hennink et al., 2011; Tufford & Newman, 2012). The reflexive journal included entries that recorded the primary researcher’s (F.E.) (a) reason for undertaking the research; (b) beliefs regarding race/ethnicity and the role of faith communities; (c) role as an African American researcher; (d) personal value system; and (e) potential role conflicts with participants. To establish another element of rigor, intercoder reliability was established and we reduced the likelihood of introducing bias at the analysis stage by having two researchers (F.E. & K.A.) independently code the transcripts, conducting peer debriefings, and incorporating a third research colleague (V.H.) to assist in resolving discrepancies. To promote credibility of the data, participants who had experience of the phenomena under study were chosen. An “audit trail” of fieldwork procedures, methodological decisions, and data analysis was also maintained (Tobin & Begley, 2004). All of these components help to establish a trustworthy study.
Results
Demographics
Saturation of data occurred at 12 participants. Participants were inclusive of current and former family caregivers, family members of persons living with dementia, church leaders, community members, and service providers within the elder care services, many identifying with more than one role. Forty-one percent (n = 5) of participants were current or former family caregivers. Over half of the participants were female (83%, n = 10), church leaders (67%, n = 8), and were non-denominational (75%, n = 9). Participants were affiliated with six different congregations, and two participants did not identify as members of a specific church. Table 2 further illustrates the individual demographics of participants.
Demographics.
Themes
Five major themes describing the characteristics of a dementia-friendly church in the African American community emerged from the data analysis. The themes are (a) resourceful; (b) welcoming and friendly; (c) inclusive and comfortable; (d) understanding and accepting; and (e) concerned about personal well-being.
Resourceful. The participants in this study believed that African American churches should meet the needs of and support families affected by dementia through having resources readily available. One church leader mentioned that the “church is accountable” for their members and resources need to be made available to them. Two family caregivers felt that the African American church is influential and always has been the place to “go to [for] answers” and help. In order for the church to help families affected by dementia, a church leader discussed how the church should assess the needs of families so they can provide them with the right resources and support. Many participants spoke about sharing dementia-related resources through either the church website, church resource center, resource directory, or a resource table/bulletin that is accessible to church and community members.
In addition, participants stressed having church support available during church services and activities to the families affected by dementia by offering respite and trained “support staff” would be of a significant resource. Participants felt very strongly about having persons within the church trained on how to assist and communicate with persons living with dementia. One church leader discussed introducing a “buddy” to families affected by dementia. For instance, the buddy will serve dual purposes and provide support during church activities and services which will also lend to respite for the family caregiver. The offering of respite services was also a common thread among many participants as a resource that churches could provide to support families, specifically family caregivers.
Welcoming and friendly. A dementia-friendly church is described by participants as one that creates a welcoming environment inclusive of embracing all individuals. A church leader described a welcoming experience as “You come and you’re connected… and you’re able to connect because the environment is so friendly, and it’s so welcoming.” The congregation and ministerial staff of a dementia-friendly church are described by participants as being hospitable, welcoming, affectionate, warm, friendly, and approachable, with church greeters cited as an important component of a welcoming church. Having greeters is another aspect to creating a more welcoming and friendlier environment. They also shared that not only the person living with dementia, but also the caregiver needs to feel welcomed, “Greeted with a hug, you’re greeted with personalization, so I think that’s a plus right there,” stated by a church leader. Smiling was described by a church leader as the simplest way for churches to be welcoming and friendly, “People with dementia… they need to see a lot of smiling faces.”
Inclusive and comfortable. Participants reported that an African American church should encompass engagement, the formation of meaningful connections, and accommodation to all members. Identifying and advertising that the church is dementia-friendly and encouraging members to bring their family members with dementia to events, could be implemented to make the African American church more inclusive. Participants expressed that the physical attributes of the church building can be made more accessible and accommodating to persons living with dementia and their family caregivers by providing proper lighting, handicap-accessible parking for caregivers, handicap-accessible features throughout the building, and directive signs to help them easily navigate the space.
Previous and current caregivers stressed that the African American church should incorporate connectedness and should not judge its members. One church leader, with a family member living with dementia, stated that a dementia-friendly church, “Is making people that have dementia come into an environment and feel very comfortable…but know you are connected…” Re-engagement was also essential to participants when describing a dementia-friendly church. One way to re-engage individuals living with dementia in worship services is by being “inclusive to everyone,” according to another church leader. Participants shared that the church setting should focus on making families affected by dementia feel comfortable, thus, reducing anxiety.
Understanding and accepting. Participants described a dementia-friendly church as a no-judgment zone – where persons living with dementia are understood and accepted as they are. One church leader described that a church displays acceptance of all when a person living with dementia is engaging in church activities and does not feel that they are different and have anxiety related to their diagnosis. A former family caregiver described a dementia-friendly church as an “environment where they will accept a person living with dementia, make nobody feel ashamed.” She further angrily explained how her brother, who held a role as a deacon, stopped bringing their mother living with dementia to church because he “felt people was gonna look at him and not her.”
Participants shared that acceptance comes with understanding, and that church members and staff must become knowledgeable of the disease process and condition, and increase their awareness related to dementia. Additionally, they felt families living with dementia will be more comfortable if they feel that they are understood by church leaders. Educating and training church leaders and providing connections for church leaders to the medical community and Alzheimer’s Association are important. A family caregiver reflected “dementia-friendly first comes with the intellect. If you don’t understand it totally, being open to accepting it and dealing with it and being open to solutions on how we as a community, specifically African Americans, deal with it…” A church leader expressed that being dementia-friendly means we are all going to be on board. So when that person that comes to church and visits that has dementia, if they do something that’s not in the norm, or not in sync with the worship experience, then we’re gonna be okay with it because we gonna know. new skills on how to approach and handle clients that actually have been diagnosed, and having a basic understanding that their dignity, their quality of life, and their integrity is really important… ensure they continue to live a full quality [of life] and not put away somewhere in a nursing home or someplace where they decline real fast.
Participants emphasized that care and love from the congregation are vital pieces of an African American church. One church leader stated, “…it’s about care in the first place. Or being concerned about one another, a lot of churches now are just dress up and judgmental.” Participants felt as though a dementia-friendly church in the African American community must be more invested in the individual’s well-being rather than focusing on tradition and well-established rituals of the church. One participant stated that in her experience as a caregiver in the past, Nobody ever called to check on her…she had been a member for years-no one stopped by the house to check up and see her. No one called up and say, you know, is there anything we can do to help?
Discussion
The mission of the church is to care for all. Although dichotomies exist within African American churches, the church generally provides a wealth of support, love, attention, and guidance to African American families. This study sought to explore ways African American churches can be dementia-friendly to support African American families affected by dementia. Twelve participants who were inclusive of current and former family caregivers, family members of persons living with dementia, church leaders, community members, and service providers within the elder care services described their perception on the characteristics a dementia-friendly church should possess. These characteristics included resourceful, welcoming and friendly, inclusive and comfortable, understanding and accepting, and concerned about personal well-being.
Given the historical context of the African American church (Brewer, 2019; Giger et al., 2008; Martin & Martin, 2002), participants agreed that churches should be able to meet the needs of the congregation and community it serves (Rowland & Isaac-Savage, 2014; Williams et al., 2012). As mentioned in this study, churches should find ways to assess the families affected by dementia to be able to provide them with useful resources. Being resourceful is more than supplying families with material but also inclusive of providing an array of support services to them (e.g. respite, support groups). Participants in this study discussed how the church can provide a level of respite to families affected by dementia with having persons within the church trained on communication techniques and managing difficult behaviors and also have someone assigned to families during church activities. Overall, the church should truly be a place where families can come in difficult times.
This study underscores the need for church initiatives to not only focus on the person living with dementia but also their family when creating welcoming and dementia-friendly environments. This study highlights the importance of showing affection and simply smiling to greet families affected by dementia. Greeting families is the initial step in communicating and socializing. In fact, socialization is significant for families affected by dementia to reduce the feeling of loneliness and isolation (Finlay, 2015). It is important for persons living with dementia to engage in pleasant, meaningful religious activities to fulfill an emotional need and reduce behavioral problems due to loneliness, sadness, and frustration (Algase et al., 1996; Fazio, Pace, Flinner, & Kallmyer, 2018; Gitlin et al., 2008). Even when persons are living through the severe stages of dementia, they can still experience joy, comfort, and meaning in life (Fazio et al., 2018). Participants in this study stressed the importance of implementing programs and activities to ensure the persons living with dementia engage or re-engage in meaningful activities, such as participating in worship services, to help them feel connected. Participants stressed that feeling included and comfortable was vital to being engaged and connected, which underscores the need for further exploration and study of how they will be made to feel included and comfortable during services and activities.
Personal space and environmental control are crucial to the person living with dementia (Hall & Buckwalter, 1987). Participants in this study discussed how modifying the church environment is a way of making the church feel welcoming, comfortable, and more accessible to persons living with dementia and their family caregivers. In such, modifications such as maintaining a low-stimulation, consistent environment with increased visuals and support could likely meet the needs of a wide range of persons living with cognitive impairments (National Institute of Mental Health, 2018).
Dementia is associated with a great deal of stigma inclusive of anxiety and shame (Riley, Burgener, & Buckwalter, 2014). In an effort to reduce the stigma often associated with dementia in the African American church, participants suggested developing church educational programs, where members, clergy, and the community can develop a better perception of dementia and related disorders. Through these educational activities, understanding and the sense of empowerment can be brought to faith communities. In order to become more understanding and accepting of persons living with dementia, we need to challenge the traditions of the African American church. For example, a church leader in this study expressed how it should be okay for a person to be “not in sync” with worship because the congregation would have received education on this topic and will be understanding and accepting of differences.
Furthermore, churches are well known for providing care for the sick, home visits, and other support. Since dementia typically has such a gradual progression, and does not occur as an acute event, congregations may be unaware that a person living with dementia is in need or that person even has dementia. Often, the person will become less and less engaged, so when they stop attending services and activities their absence goes unnoticed. Any lack of support from the church experienced by families affected by dementia is often not because the church does not care; the lack of support is more likely because the church is either unaware of the person’s need for support or unsure how to provide it.
Church members, leaders, and the congregation as a whole should invest in the person living with dementia and their family caregiver’s well-being. African American churches can have a tremendous impact on the well-being of families affected by dementia through developing programs geared toward supporting persons living with dementia and their family caregivers (Stansbury et al., 2018). Being dementia-friendly will require the church to be much more intentional about outreach to families living with dementia. As mentioned in this study, specific ministries within the church could be developed or designated to support these families. Moreover, African American churches can play an integral role on the care partner team and provide partnership opportunities for agencies to find ways to improve overall community health (Brewer, 2019).
Limitations
It is important to recognize the limitations of this research. The participants were drawn from a convenience sample. The participants were from a similar geographical location, with many having a connection with the primary researcher and/or members of the project design team. This study also interviewed those from a non-denominational Protestant Christian background; thus, the results may not be generalizable to all faith backgrounds of African American families affected by dementia.
Next steps
This study was one of the first steps in a three-phase project to design dementia-friendly faith villages to support African American families (Epps et al., 2019). Results from this study were shared with the project design team. In collaboration with the design team, preliminary criteria activities to support a dementia-friendly church in the African American community were developed (Table 3). The intent will be for churches to adopt these activities and sustain them. The primary researcher (F.E.) will work with senior leadership at three specified churches in metropolitan Atlanta, Georgia, to assist in implementing criteria. In phase two, 30 African American persons living with dementia and 30 family caregivers will be recruited to attend worship services at these churches where observational data and pre- and post-survey results will be gathered to evaluate feasibility and participants’ responses.
Preliminary Criteria to support a Dementia-Friendly Church.
Conclusion
Despite the aforementioned limitations, this study has wide implications for African American churches and families and also for families living with dementia outside of African American faith communities. A supportive church community values each person, respects individual differences, and provides opportunity for meaningful engagement. The proposed characteristics of a dementia-friendly church highlighted in this study are worthy steps for the African American churches to embrace in order to support and meet the needs of their congregation and community. These findings allow for faith leaders and churches to begin the process of becoming dementia-friendly, thus enabling congregations, communities, and persons with dementia to continue living in meaningful ways. In conclusion, churches are a source of religious support and provide access to resources for families in difficult times. Thus, it is imperative for African American churches to explore ways to best support and meet the needs of families living with dementia.
Footnotes
Acknowledgements
The authors gratefully acknowledge the members of the project design team and participants of Phase 1.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical considerations
The study was approved by the primary researcher’s Institutional Review Board (IRB #H18283). Standard ethical and data storage processes were adopted. A signed consent form from each participant was obtained prior to conducting each interview. To protect the confidentiality of participants, each participant was assigned pseudonyms and all identifying information was deleted from transcripts.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is supported by the Alzheimer’s Association Research Grant‐Diversity (AARG‐D‐18‐56229). In addition, the authors would like to acknowledge additional support received from a pilot award sponsored by the Emory University Alzheimer’s Disease Research Center (P50 AG025688).
