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. Author manuscript; available in PMC: 2023 Jan 1.
Published in final edited form as: Clin Gerontol. 2021 Dec 28;46(1):80–90. doi: 10.1080/07317115.2021.2017378

Using a Multiple-Case Study Design to Explore the Worship Experiences of Black Families Affected by Dementia

Janelle E Gore 1, Glenna Brewster 1, Mayra Sainz 1, Yiran Ge 1, Jane Xie 1, Taylor James 1, Fayron Epps 1
PMCID: PMC9237185  NIHMSID: NIHMS1767989  PMID: 34962459

Abstract

OBJECTIVES

The purpose of this multiple-case study was to report on the worship experiences of Black families affected by dementia.

METHODS

Data were collected through participant observations of family caregivers (n = 4) and persons living with dementia (n = 4) during worship services and semi-structured interviews with the family caregivers over six months. Data were initially analyzed case-by-case, then across-cases.

RESULTS

Four overarching themes emerged: Welcoming church culture, Community support from the church, Engagement during worship service, and Connectedness between the caregiver and their family member living with dementia. Family caregivers reported that their family member with dementia was attentive and expressed moments of clarity during and immediately after worship services.

CONCLUSIONS

Worship services can be tailored to support families affected by dementia and can promote engagement of the person living with dementia with church activities and family members.

CLINICAL IMPLICATIONS

Health practitioners are encouraged to acknowledge the influence of religious practices within Black families affected by dementia and integrate them into interdisciplinary care plans and programs.

Keywords: African American, Alzheimer’s disease, religion, faith communities, engagement, religious practices

Introduction

An estimated six million adults 65 years or older live with dementia in the United States (Alzheimer’s Association, 2021). By 2060, dementia is projected to affect nearly 13.9 million adults (Center for Disease Control and Prevention, 2018). Currently, the rate of diagnosis and prevalence of dementia among Black Americans is increasing disproportionately compared to White Americans, as Black Americans are twice more likely to be diagnosed with dementia (Mathews et al., 2018). It is important for Clinicians to understand the various ways Black individuals living with dementia and their caregivers cope with dementia to provide optimal care.

The well-being of family caregivers for persons living with dementia (PLwD) is often more affected than other caregivers because they provide care for a longer duration and assist with more activities of daily living (Alzheimer’s Association, 2021; Samson, Parker, Dye, & Hepburn, 2016). Despite the negative impact of caregiving on health, Black caregivers report better psychological well-being outcomes (e.g., depression, anxiety) than White caregivers (Liu et al., 2020). One possible reason for this difference is higher religiosity levels among Black caregivers (Dilworth-Anderson et al., 2005; Epps, 2014) who often utilize religious coping such as praise and worship to respond to caregiving-related stressors (Haley et al., 2004; Robinson-Lane, Dredger, & Patel, 2019).

For Black PLwD and their family caregivers, the faith community provides social engagement and social support especially during times of illness (Agli, Bailly, & Ferrand, 2014). This type of social support improves mood and contributes to a sense of belonging (Epps & Williams, 2018). Furthermore, religious involvement is related to a greater sense of coherence, possibly aiding Black families to cope more effectively with increasing stress, anxiety, and depression associated with caregiving experiences and living with dementia (Agli et al., 2014; Heo & Koeske, 2013; Jing, Willis, & Feng, 2016).

Religious participation also acts as a protective factor during the disease’s progression (Epps & Williams, 2018; Katsuno, 2003). Various aspects of religious involvement, including sermons, prayer, scriptural reading, and praise and worship, may buffer cognitive decline through enhancing positive psychological feelings, such as optimism and happiness (Hill & Pargament, 2003). Thus, worship service attendance, which is a component of religiosity, can be a productive instrument in enhancing the lives of Black PLwD (Epps & Williams, 2018). Although previous literature highlights the importance of religious practices among Black families affected by dementia (Epps et al., 2014; Epps & Williams, 2018), there is a gap in research describing their worship experiences. Thus, the purpose of this study is to explore the experiences of Black families affected by dementia attending worship services at churches committed to cultivating a dementia-friendly environment. In addition, this study aims to provide context for healthcare professionals about the role of religious participation in the lives of Black PLwD and their family caregivers.

Conceptual model

The purpose of dementia-friendly environments is to maximize opportunities for PLwD and their caregivers to participate in meaningful activities (Innes, Smith, & Bushell, 2021). ‘Dementia-Friendly Community’ is used to describe communities whose goal is to reduce dementia-related stigma, provide social opportunities for PLwD, and offer support resources for families (Musselman, 2021). The present study utilized the Dementia-Community Adaptation Model (D-CAM) to guide the analysis and understanding of the families’ worship experience at churches committed to cultivating a dementia-friendly environment (Figure 1; Epps et al., 2019). The D-CAM illustrates how churches can adapt to support Black families experiencing dementia and contribute to their well-being. During the community adaptation process, faith communities modify their environments and components of their worship services to be inclusive of families affected by dementia. Community adaptation enables families to reengage with the faith community and receive support. Additionally, church adaptation could improve the overall well-being and reduce loneliness and helplessness experienced by families affected by dementia (Epps et al., 2019).

Figure 1.

Figure 1.

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Dementia-community adaptation model

Methods

Design

A qualitative multiple-case study approach was used to explore the experiences of Black families affected by dementia and attending worship services at churches committed to becoming dementia-friendly. Multiple-case study designs seek to understand a phenomenon across settings and persons (Yin, 2017). Each case in this study represents the worship experience of a dyad with varying kinships and the PLwD at various stages of the illness. Cases (families or family cases) are bound by their attendance at worship services at dementia-friendly churches over six months. This study received approval from Emory University Institutional Review Board.

Setting

The study was conducted at two predominantly Black non-denominational Christian churches (Church A, Church B) in the metropolitan area of Atlanta, Georgia. Non-denominational is a term used within Christianity to describe the non-affiliation with a formal protestant denomination (Steensland et al., 2000). These churches were committed to creating a dementia-friendly environment that is (a) resourceful; (b) welcoming and friendly; (c) inclusive of and comfortable for PLwD; (d) understanding and accepting of behaviors of psychological symptoms of dementia; and (e) concerned about the family members’ well-being (Epps et al., 2020a). Both churches had a congregation size of less than 500 members. Under the leadership of the principal investigator (PI) Fayron Epps, both churches participated in education sessions, incorporated environmental modifications within the church, and tailored worship services to be inclusive of families affected by dementia.

Recruitment

After the selection of church sites, families were recruited from the Atlanta Metropolitan area to attend worship services. Initial recruitment e-mails were shared with the project design team established by the PI, who distributed flyers at community health events. Interested families contacted the PI to be screened. The inclusion criteria were: 1) provided care to a family member or friend experiencing signs and symptoms of dementia, 2) at least 18 years of age, and 3) identified as Black or African American. Families were excluded if they identified as non-English speaking due to church sites’ congregations and church leaders speaking English. The dementia stage was categorized through self or family member reports as mild/early, moderate/middle, and severe/late stages of dementia (Alzheimer’s Association, 2021). Self-reporting was used to identify the stage of dementia because Black adults are less likely to seek or receive a formal dementia diagnosis (Alzheimer’s Association, 2021).

Participating families

Recruitment resulted in four family cases. This sample is appropriate for a multiple case-study design, enabling an exploration of family experiences (Yin, 2017). Family cases included Black older adults living with dementia (n = 4) and their family caregivers (n = 4). All caregivers were female and between 49 and 75 years of age. In total, the participating caregivers have been providing care and assisting their family members for an average of 6 years. PLwD were between 56 and 89 years of age with stages of dementia ranging from middle (n = 3) to the late (n = 1) stages. Table 1 further displays the demographic characteristics of these families.

Table 1.

Participant demographics

Family Caregiver Person Living with
Gender Age Religion Education Level Relationship to PLwD Time as caregiver Gender Age Religion
F1 F 61 Baptist College
Graduate		 Child 5 years F 89 Baptist
F2 F 75 Baptist Graduate
Degree		 Spouse 10 years M 80 Baptist
F3 F 49 Methodist College
Graduate		 Child 2 years F 74 Methodist
F4 F 62 Methodist Graduate
Degree		 Sibling 6 years M 56 Non-Denominational
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Data collection

Written consents were obtained from participants themselves or a legal representative for those deemed ineligible to provide consent. Pseudonyms were used to maintain anonymity. The PI collected data from March 2019 to January 2020. The study relied on two data gathering methods: observation and semi-structured interviews.

Observations

Families were observed while attending a series of monthly worship services at selected churches over six months. Undisguised participant observation was employed to collect data (Price, Jhangiani, Chiang, Leighton, & Cuttler, 2017). An observation data collection tool was used to record behaviors and interactions: (a) within dyads, (b) of caregivers with church leaders and congregants, (c) of PLwD with church leaders and congregants, and (d) of PLwD participation in and response to the worship service. Church environment and components of the worship services that were also observed and recorded in field notes included the presence of greeters, signage, service and sermon length, sermon topics, song selections, and special presentations.

Interviews

Semi-structured interviews focused on families’ self-described experiences attending worship services at each respective church. The interviews further explored previous observations collected during the families’ attendance at churches. The interview guide contained questions ranging from inquiring about their experiences to recommendations to improve worship services (Table 2). Interviews were in-person at mutually agreed locations lasting between 15 and 30 minutes. Interviews were audio-recorded and transcribed verbatim. A $25 gift card to a local supermarket was provided to each family upon completion of the interview.

Table 2.

Interview guide

Questions
  1. How well did the services go?
    1. What was your favorite part of the service?
    2. What was your least favorite part of the service?

  2. Do you feel closer to the church?

  3. How has support received from the church changed?

  4. Did you notice a behavior change in your family member?

  5. Did your family member seem comfortable and engaged during service?

  6. Do you recommend any changes to the worship services?

  7. Are you feeling less burdened and stressed?

  8. Share with me any changes noticed in the relationship between you and your loved one living with memory impairment.

  9. Do you find pleasure in caring for your loved one?
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Data analysis

Interview transcripts and observation notes were uploaded into Word processing software for data management and coding. Reflections and field notes recorded by the PI after the interviews were included in analysis along with observations. Data were independently reviewed, and case reports were created. Data were analyzed case-by-case using Braun and Clarke’s six-stage inductive thematic analysis framework (2006): 1) familiarizing yourself with your data, 2) generating initial codes, 3) the researcher read throughout each transcript to immerse in the data, 4) reviewing themes, 5) defining and naming themes, and 6) producing case reports. Next, a cross-case analysis and coding of the case reports was done. Patterns and themes that were salient across a variety of the cases were identified (Yin, 2017). A summary of the themes and definitions were presented to the research team for validation.

Credibility and rigor

Credibility and rigor for this study were achieved using four validation strategies: 1) member credibility checks, 2) researcher reflexivity, 3) thick rich descriptions, and 4) peer debriefing (Creswell & Miller, 2000). A summary report of findings from observations and interviews were provided to caregivers for validation, to confirm whether the findings represented their experiences, and to provide feedback. There were no discrepancies between researcher observations and caregiver responses during interviews. The PI maintained a journal where biases, and the processes of research were recorded throughout the study to ensure researcher reflexivity (Morrow, 2007). Additionally, the PI reflected on their role as a Black female and Christian with a Baptist upbringing. Thick description of the cases was achieved by providing rich details of the families and presenting the participants’ voices under each theme. Finally, two members of the research team who were Black with a public health and nursing background participated in the coding process and identified themes. When there were differences in opinions, members dialogued until consensus.

Results

Description of church environment and worship service

Based on observations, both church sites consistently had greeters at the door, memory support staff present, and proper signage, and provided physical assistance as needed. Overall, worship services averaged 1 hour 57 minutes. The average length of each sermon was 44 minutes, and the average length of each praise & worship session was 19 minutes. Worship services typically proceeded in the following order with some slight variations: praise and worship session, greetings, sermon, call for discipleship, prayer, acknowledgment of visitors, offering, announcements, and song and benediction. The majority of the music played or sang during services were old hymns; However, contemporary gospel and secular music were played occasionally. During the service, both churches utilized large screens to display visual aids such as, sermon titles, bible verses, and song lyrics.

Family case summaries

Family case 1

Nancy was a 61-year-old female caregiver to her mother, Jane, for five years. Jane was 89 years old, with middle-stage dementia who lived with her daughter. Both women identified as Baptist and attended church on a regular basis. Due to family events, travel, and a death in the family, Nancy and Jane attended three of the six dementia-friendly worship services over the span of six-months. Nancy shared that she and her mother had an overall positive experience. Jane enjoyed attending Church A since the church had a diverse congregation, compared to the regular church she attended. As a child, Jane attended a southern Baptist church and attending Church A reminded her of this childhood experience. Despite the positive experience, Nancy also expressed how she felt uncomfortable when the pastor shared her mother’s dementia diagnosis during service.

Family case 2

Mary was a 75-year-old female caregiver to her 80-year-old husband with middle-stage dementia, Allen. Mary and Allen lived together, and both identified as Baptist. Allen came from a Pentecostal background. The two regularly attended church. Mary and Allen took part in all six of the dementia-friendly worship services at Church A. Mary shared that she enjoyed listening to the pastor preach and appreciated his lighthearted personality. Allen fully participated in the worship services and interacted with the church leader and other members of the church. Although Mary and Allen were attending a new church, Allen was not disturbed by the change in his routine. Mary believed her husband felt comfortable at Church A since the church setting was a familiar environment for him. Mary also shared she would prefer the worship services to start later in the day to allow more time to assist her husband getting ready for church.

Family case 3

Vanessa was a 49-year-old female caregiver to her 74-year-old mother with middle-stage dementia, Sheila. Vanessa and Sheila both identified as Methodist. Vanessa attended church with her mother because she felt it was important to engage in activities Sheila enjoyed. Vanessa and Sheila attended five dementia-friendly worship services. Vanessa always had at least one sibling accompany her to church with Sheila. During their first service at Church A, Sheila was observed being easily distracted by the children sitting near her so Vanessa requested to switch the family’s church site to Church B for the remainder of their participation. Vanessa found her mother was more engaged at Church B. The caregiver spoke about how the smaller congregation made it “more personable” for her mother. Church B was a different experience from their regularly attended home church, as Vanessa described their home church as more “ritualistic.” Vanessa expressed she did not mind bringing Sheila to services because she felt her mother was “getting something out of it.” The only component of the church services Vanessa found uncomfortable was seeing her mother struggle with filling out a tithing envelope.

Family case 4

Sarah was a 62-year-old female caregiver to her 56-year-old brother with late-stage dementia, Oscar. Sarah and Oscar identified as non-denominational. Sarah attended church regularly but had never attended church with Oscar since his diagnosis. Thus, when they attended Church A, it was their first time worshiping together and Oscars’ first-time attending church in 13 years. Sarah and Oscar attended two dementia-friendly worship services at Church A. Sarah discussed how she enjoyed attending the worship services with Oscar and expressed excitement for her brother to attend church again. She commented that the church was a familiar environment to Oscar as he was a deacon at his former church. Sarah felt comfortable and supported while attending Church A as she had friends who attended with her. Sarah shared that she was relieved knowing supportive church staff were present during each service to assist with caring for Oscar.

Themes

Analysis revealed four salient across all family cases: Welcoming church culture, Community support from the church, Engagement during worship service, and Connectedness felt between the caregiver and their loved one living with dementia. Each theme details worship experiences by the families.

Welcoming church culture

Participating families agreed that the churches were able to create a welcoming environment. The researchers observed the families being greeted by church leaders and engaging in conversation with members of the congregation. Each family experienced “feeling welcomed” differently. Nancy, who attended the worship services at Church A, shared that her favorite part of the worship service was the welcoming treatment she received. Nancy described church members made her, and her mother feel welcomed as they were entering the building, which was not something they always experience in other churches.

Oh, everybody treated us very well. It was a warm welcome. Ah, and they all greeted Mama. Um, either shook her hand or gave her a big hug, you know, and she just felt like she was at home there.

Vanessa, who attended worship services at Church B, also described the dementia-friendly church as welcoming. Sheila’s sense of welcoming stemmed from being remembered by leaders and members of the church which made her smile when they called her name during the sermon. Vanessa shared the following about her mother, Sheila:

She liked being recognized by the pastor. So, like when we came the first time, I think the way they do it, they welcome the visitors. Well then, the next time we came, he knew, he remembered. And so, she liked that.

Mary felt welcomed by the church’s ushers when being greeted upon entering the building. Similarly, to the other caregivers, Sarah thought Church A fostered a welcoming environment. However, her sense of welcoming was related to church members and church leaders engaging her and her brother in conversation.

Community support from the church

Caregivers expressed receiving support from the churches. The type of support varied between families and manifested itself through either physical support or social support. Memory support staff were observed escorting Oscar to the bathroom and gently redirecting him during the service to sit after singing. Nancy spoke about the physical support that her and her mom received at Church A. When Nancy and Jane arrived at the church; Nancy recalled:

The greeters were good, um, they met us outside and took care of Mom. Mom was comfortable, um, with someone else, you know, [delivering] her, which Mom usually isn’t.

Nancy further highlighted that her mother typically dislikes being left in the care of other individuals, regardless of the time span; However, Jane was comfortable with the ushers. Mary expressed that she had experienced similar interactions related to support at her “home” church, but Church A provided higher levels of support for her and her husband. She recalled support staff providing Allen with physical assistance when he was exiting the car. Sarah also recalled how she and Oscar received support from a member of the church, sharing an interaction between Oscar and a Church B church member stated:

Ah, but I like that, [Church Member], you know, was just kind of, you know, if Oscar got up, [Church Member], just kind of shadowed him and let him do his thing. You know?

Sarah continued by sharing that she was grateful a church member was present to assist her; thus, allowing her to further focus on the pastor’s sermon. Vanessa also spoke about the support she received from Church B. Vanessa expressed how the support she and her sister received from the church gave her confidence to continue attending the worship services with her mom.

Engagement during worship service

Both, the caregiver and the PLwD, were engaged during the worship services. The families were observed standing up, laughing at jokes from the pastor, waving their hands during services, and participating in praise and worship Vanessa expressed that “there is way that [they] can [both] enjoy and participate in church service” and she was happy seeing her mother enjoy herself. Her mother was observed dancing, laughing, singing, and waving her hands during the worship services. Sarah was also able to engage with the service due to a church member being there to assist her and attend to her brother. Sarah warmly recounted her ability to engage with the service:

Oh, it warmed my heart … And then, it kinda took some to the burden of me, off of me to kinda keep up with him. You know what I’m saying? Because I’m wanting to tug at him (chuckles), really, tug at him, and you know, ‘cause I don’t wanna get up and walk all around with him … I would have if it had to. You know, but I didn’t have to … Paul [church support staff] just stepped in and took over that role … And then I was able to enjoy the service … But, but know what, the other thing, too, is, I actually, I got something out of each and every worship service that I [made it to].

Engagement from the PLwD was recounted from their caregivers and reflected in the observation notes. All participants engaged with the worship services. Allen stood up when they welcomed visitors and introduced himself and his family. Emotional responses from PLwD during the services were observed, with Jane crying while the pastor spoke about depression within his sermon. Her daughter recounted:

[her mother] started crying in the service … she began to tell me things while she was crying … And, and it was all about stuff that happened to her in her past.

Other PLwD were observed engaging with the sermon by following call and response messages from the pastors, laughing, standing up, clapping, and raising their hands as appropriate. Caregivers reported their loved one recounting sermon messages even after the service. Vanessa noticed a difference in her mother’s ability to recall the sermon at Church B versus their regularly attended church worship services:

I don’t know what the sermon was about; I don’t know …,you know? But there, she could tell us, “Oh, he talked about this,” and, you know, “Maybe he needs to come here.” And I went, “Okay?

When it came to the PLwD’s engagement with praise and worship sessions, all participants seemed to find the experience enjoyable. Sheila was observed a couple of times dancing at the altar with other members of the congregation during the praise and worship session. Allen was observed several times standing up and singing along with the choir in his deep voice and Mary stated that her husband “likes singing.” Vanessa recounted how her mother:

Was engaged in the singing … She seemed to really enjoy it … up and moving around. And we were looking like, You don’t do that at our church, (giggles) but she seemed to be really engaged with it.

Additionally, Sarah felt Oscar was experiencing something that she could not quite describe as a result of the praise and worship session, but she knew it was worth noting:

He definitely reacted to the gospel, music, um, that you all had at the church … Oh, the songs, great. I’m not sure— You know, and, and there were a couple of times that Oscar even got … he, he caught a word. You know what I’m saying? I’m not sure if he understood … The Word, but there was something— because he, he repeated it. I think it did him a world of good, you know, just to be in the, in the presence of The Word again, and, and the music, and the … the worship, and the fellowship.

Connectedness felt between the caregiver and their loved one living with dementia

The feeling of connectedness was observed among and reported by all families. Physical touch was present between the dyad during worship services. Caregivers were also observed affectionately hugging, patting, tugging, and rubbing their respective family members with dementia. Researchers observed families speaking and laughing with each other throughout the service. Nancy was observed crying and she reported feeling a deep connection with her mother during a sermon. Jane’s response to the sermon allowed for Nancy to care for her mother in a way that was healing for the both of them. Nancy recalled the experience:

… and I grabbed her, and I hugged her and she would, she began to tell me things while she was crying … I’m still learning about things that happened to her in the past that she is still carrying the hurt inside … But I feel when she was there and talking about it, she was letting it out and me forgiving, ah, her mom, because she didn’t understand.

Many of the caregivers expressed positive feelings toward their family member when they felt they were being impacted during the services. Vanessa specifically stated that:

… making sure that she has these moments where things are good, or you know, she might nor remember everything but, you’re spending time with her doing some things that she likes to do … So, it’s like you wanna make sure she’s still having those good moments – even though she can’t really remember, but still just trying to make sure you’re bringing some joy to her every day.

Discussion

The present study utilized a multiple case-study approach to explore the experiences of Black families affected by dementia and attending worship services at churches committed to cultivating a dementia-friendly environment. In general, families expressed feeling welcomed and supported during the services. While each family received support in different ways, these interactions contributed to their overall positive experience at a dementia-friendly worship service. Although the caregiver and PLwD engagement differed during the service, they displayed a sense of connectedness with each other. The PLwD responded to the service by clapping, singing, and responding to the pastors’ call for responses and the caregivers connected with the sermon or praise and worship sections of the church service. Family caregivers reported that their family member with dementia was attentive and experienced moments of clarity during and immediately after worship services.

Regan (2013) suggests participation in religious activity presents as a barrier to PLwD and their caregivers seeking care because some religious activities, like prayer, can lead them to feel that they have already put their diagnosis in God’s hands. However, participation in worship services is viewed as a protective factor and is associated with positive wellbeing of both caregivers and PLwD (Epps et al., 2018; Katsuno, 2003).

Supportive and welcoming environment

Dementia-friendly worship services offer Black families affected by dementia the opportunity to continue participating in religious activities in a supportive and welcoming environment (Isaac, Hay, & Lubetkin, 2016; Levin, Chatters, & Taylor, 2005; Saguil & Phelps, 2012). A safe and supportive church environment can promote attendance of religious services (Epps et al., 2020a). Caregivers can feel confident leaving for a few minutes, knowing the PLwD will be safe. Churches that want to increase or maintain the attendance of families with PLwD can facilitate educational sessions about dementia for member volunteers then assign them to support and assist families.

Environment fosters a sense of connectedness

Dementia-friendly worship services provide an opportunity for the caregiver and PLwD to connect. Sharing a person’s diagnosis with the congregation may lead families to become uncomfortable and no longer attend services (Regan, 2013). Alternately, the openness about the diagnosis may lead to a sense of connectedness with congregants and families. This sense of connectedness may facilitate cooperation and acceptance within dyads and potentially increase their engagement with the church and each other. PLwD were engaged in the service and followed instructions from the pastor. While their memory may decline, they maintain their personhood and can remain engaged. For clinicians, this reaffirms the importance of engaging PLwD as they discuss patients’ health and develop treatment plans (Bosco, Schneider, Coleston-Shields, & Orrell, 2019).

Implications for healthcare providers

Some healthcare providers have identified challenges such as lack of time during healthcare visits, difficulty identifying patients who want to integrate religious practices into their care plans, and discordant religious views between patients and providers. However, many patients are receptive to discussing their faith with their clinicians (Isaac et al., 2016). Clinicians can also document spiritual preferences and incorporate patients’ varying faith traditions into treatment plans by utilizing a cultural humility framework to cultivate an inclusive environment during patient visits and optimal care (Epps et al., 2020b; Forornda et al., 2016; Isaac et al., 2016; Saguil & Phelps, 2012).

Limitations and strengths

There are limitations to the study. The sample size for this study was small but the number of cases is sufficient given that this research was exploratory and contextual in nature (Yin, 2017). The multiple case-study approach employed does not rely upon the experimental methods thus reducing the ability to generalize results. We recognize that all Black churches are not monolithic and those meeting the pre-defined criteria of a dementia-friendly environment will not be conducive for every family affected by dementia due to varying denominations, regional geographic differences, and individual differences in spiritual beliefs. Black Americans have often reported prioritizing selecting and attending churches based on the spiritual connectedness, familiarity, and community over attending churches that are of their denominational affiliation (Mohamed, 2021). For this study, participants’ denomination affiliation differed from the church they attended, and they held visitor status which may have influenced their overall experience. However, participants expressed feeling comfortable and welcomed while attending the churches. All participants did not attend the same amount of worship services over the allotted 6-month period. Additionally, COVID-19 policies led to the early termination of the study as churches followed “stay at home” orders. However, as churches adapted to the “new normal,” they engaged and supported families via online platforms (Ge, Sainz, Gore, & Epps, 2021). PLwD were present during the interviews and provided the opportunity to participate; However, opted not to participate during the interviews. The study does not account for the experiences of male-identifying family caregivers as all caregivers Identified as female. Finally, we acknowledge that religious participation can positively impact mental health, but we did not assess these factors in this study.

Despite the limitations of the study, there were notable strengths. The study explores culturally tailored ways to support Black families affected by dementia by detailing their worship experience. Additionally, a multiple-case design and cross-case analysis provided evidence to support the Dementia-Community Adaptation Model and inform future research and programming (Choy, 2014).

Conclusion

This study describes Black PLwD and their caregivers’ experiences during worship services and illustrates religious participation may be maintained with a dementia diagnosis, provide social engagement, and support religious coping. Furthermore, this research contributes to culturally informed care. Further research is encouraged to provide additional guidance for clinical practice, investigate how to better support caregivers and PLwD in their religious participation, and examine whether supporting that participation results in enhanced wellbeing. Clinicians may wish to integrate assessments on religious practices during patient visits, incorporate recommendations regarding religious participation into their interdisciplinary therapeutic plans, and examine their impact on their patients’ health outcomes.

Clinical implications.

  • Researchers, health professionals, faith communities, and families affected by dementia should collaborate to discuss how to integrate religious activities into interventions to support Black families affected by dementia.

  • Healthcare professionals could include spiritual assessment instruments as a part of their baseline and ongoing health evaluations to identify families affected by dementia who rely on religious practices to cope.

  • Similar to a dementia friendly church environment, healthcare professionals can create an environment that is supportive of, welcoming for, and facilitates meaningful connections with families affected by dementia.

Acknowledgments

The authors are grateful to the participating churches and church leaders for offering dementia-friendly worship services. The authors would also like to acknowledge the families for their time and participation.

Funding

This work was supported by the Alzheimer’s Association Research Grant-Diversity [Alzheimer’s Association AARG-18-56229(F.E.)]. The authors would like to acknowledge this work resulted from the development plan and activities of a career development award through the National Institute on Aging, a division of the National Institutes of Health to Dr. Fayron Epps [K23AG065452] and a career development award through the National Institute on Aging, a division of the National Institutes of Health to Dr. Glenna Brewster [K23AG070378]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or the Alzheimer’s Association.

Footnotes

Disclosure statement

No potential conflict of interest was reported by the author(s).

References

  1. Agli O, Bailly N, & Ferrand C (2014). Spirituality and religion in older adults with dementia: A systematic review. International Psychogeriatrics, 27(5), 715–725. [DOI] [PubMed] [Google Scholar]
  2. Alzheimer’s Association. (2021). 2021 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 17(3), 391–460. [DOI] [PubMed] [Google Scholar]
  3. Bosco A, Schneider J, Coleston-Shields DM, & Orrell M (2019). Dementia care model: Promoting personhood through co-production. Archives of Gerontology and Geriatrics, 81, 59–73. [DOI] [PubMed] [Google Scholar]
  4. Braun V, & Clarke V (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. [Google Scholar]
  5. Centers for Disease Control and Prevention. (2018, September 20). U.S. burden of Alzheimer’s disease, related dementias to double by 2060 Centers for Disease Control and Prevention. https://www.cdc.gov/media/releases/2018/p0920-alzheimers-burden-double-2060.html. [Google Scholar]
  6. Choy LT (2014). The strengths and weaknesses of research methodology: Comparison and complimentary between qualitative and quantitative approaches. IOSR Journal of Humanities and Social Science, 19(4), 99–104. [Google Scholar]
  7. Creswell JW, & Miller DL (2000). Determining validity in qualitative inquiry. Theory into Practice, 39(3), 124–130. [Google Scholar]
  8. Dilworth-Anderson P, Brummett BH, Goodwin P, Williams S. Wallace, Williams RB and Siegler IC (2005). Effect of race on cultural justifications for caregiving. The Journals of Gerontology: Series B, 60(5), S257–S262. [DOI] [PubMed] [Google Scholar]
  9. Epps F, Brewster G, Alexander K, Choe J, Heidbreder V, & Hepburn K (2019). Dementia-friendly faith village worship services to support African American families: Research protocol. Research in Nursing & Health, 42(3), 189–197. [DOI] [PubMed] [Google Scholar]
  10. Epps F, Heidbreder V, Alexander K, Tomlinson A, Freeman V, & Williams N (2020a). A dementia-friendly church: How can the African American church support families affected by dementia? Dementia, 20(2), 556–569. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Epps F, Skipper A, & Williams IC (2020b). Broadening research and practice approaches to assessing religiosity in African American older adults. Research in Gerontological Nursing, 13(4), 170–172. [DOI] [PubMed] [Google Scholar]
  12. Epps F, & Williams IC (2018). The importance of religiosity to the well-being of African American older adults living with dementia. Journal of Applied Gerontology, 39(5), 509–518. [DOI] [PubMed] [Google Scholar]
  13. Epps F (2014). The relationship between family obligation and religiosity on caregiving. Geriatric Nursing, 35(2), 126–131. [DOI] [PubMed] [Google Scholar]
  14. Foronda C, Baptiste D-L, Reinholdt MM, & Ousman K (2016). Cultural humility: A concept analysis. Journal ofTranscultural Nursing, 27(3), 210–217. [DOI] [PubMed] [Google Scholar]
  15. Ge Y, Sainz M, Gore J, & Epps F (2021). “Everything is either sent by God or used by God”: An exploratory study on the impact of Covid-19 upon the religious lives of Black families living with dementia. Journal of Religion and Health, 60(5), 3193–3208. [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Haley WE, Gitlin LN, Wisniewski SR, Mahoney DF, Coon DW, Winter L, … Ory M (2004). Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: Findings from the REACH study. Aging & Mental Health, 8(4), 316–329. [DOI] [PubMed] [Google Scholar]
  17. Heo G. Jeongim & Koeske G. (2013). The role of religious coping and race in Alzheimer’s disease caregiving. J ApplGerontol, 32(5), 582–604. [DOI] [PubMed] [Google Scholar]
  18. Hill PC & Pargament KI (2003). Advances in the conceptualization and measurement of religion and spirituality: Implications for physical and mental health research. American Psychologist, 58(1), 64–74. [DOI] [PubMed] [Google Scholar]
  19. Innes A, Smith SK, & Bushell S (2021). Dementia friendly care: Methods to improve stakeholder engagement and decision making. Journal of Healthcare Leadership, 13, 183–197. [DOI] [PMC free article] [PubMed] [Google Scholar]
  20. Isaac KS, Hay JL, & Lubetkin EI (2016). Incorporating spirituality in primary care. Journal of Religion and Health, 55(3), 1065–1077. [DOI] [PMC free article] [PubMed] [Google Scholar]
  21. Jing W, Willis R, & Feng Z (2016). Factors influencing quality of life of elderly people with dementia and care implications: A systematic review. Archives of Gerontology and Geriatrics, 66, 23–41. [DOI] [PubMed] [Google Scholar]
  22. Katsuno T (2003). Personal spirituality of persons with early-stage dementia. Dementia, 2(3), 315–335. [Google Scholar]
  23. Levin J, Chatters LM, & Taylor RJ (2005). Religion, health and medicine in African Americans: Implications for physicians. Journal of the National Medical Association, 97(2), 237–249. [PMC free article] [PubMed] [Google Scholar]
  24. Liu C, Badana AN, Burgdorf J, Fabius CD, Roth DL, & Haley WE (2020). Systematic review and meta-analysis of racial and ethnic differences in dementia caregivers’ well-being. The Gerontologist. [DOI] [PMC free article] [PubMed] [Google Scholar]
  25. Matthews KA, Xu W, Gaglioti AH, Holt JB, Croft JB, Mack D, & McGuire LC (2018). Racial and ethnic estimates of Alzheimer’s disease and related dementias in the United States (2015–2060) in adults aged ≥65 years. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 15(1), 17–24. [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. Mohamed B 2021. Most Black Protestants say denominational affiliation is less important than inspiring sermons. Pew Research Center. Retrieved April 29, September 22, 2021 from https://www.pewresearch.org/fact-tank/2021/04/29/most-black-protestants-say-denominational-affiliation-is-less-important-than-inspiring-sermons/ [Google Scholar]
  27. Morrow SL (2007). Qualitative research in counseling psychology. The Counseling Psychologist, 35(2), 209–235. [Google Scholar]
  28. Musselman C (2021). New evaluation guide for dfa communities. Dementia Friendly America https://www.dfamerica.org/spotlight/2021/5/26/new-evaluation-guide-for-dfa-communities.
  29. Price PC, Jhangiani R, Chiang I, Leighton D, & Cuttler C (2017). Research methods in psychology: Core skills and concepts 3rd. North America: Creative Commons Attribution NonCommercial ShareAlike. https://opentext.wsu.edu/carriecuttler/ [Google Scholar]
  30. Regan JL (2013). Redefining dementia care barriers for ethnic minorities: The religion–culture distinction. Mental Health, Religion & Culture, 17(4), 345–353. [Google Scholar]
  31. Robinson-Lane SG, Dredger M, & Patel A (2019). Towards a novel intervention for Black family caregivers of persons with dementia. Alzheimer’s & Dementia, 15. [Google Scholar]
  32. Saguil A, & Phelps K (2012). The spiritual assessment. American Family Physician, 86(6), 546–550. [PubMed] [Google Scholar]
  33. Samson ZB, Parker M, Dye C, & Hepburn K (2016). Experiences and learning needs of African American family dementia caregivers. American Journal of Alzheimer’s Disease & Other Dementias, 31(6), 492–501. [DOI] [PMC free article] [PubMed] [Google Scholar]
  34. Steensland B, Park JZ, Regnerus MD, Robinson LD, Wilcox WB, & Woodberry RD (2000). The measure of American Religion: Toward improving the state of the art. Social Forces, 79(1), 291. [Google Scholar]
  35. Yin RK (2017). Case study research and applications: Design and methods. North America: Sage publications. [Google Scholar]

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