Introduction

In 2020, the unprecedented COVID-19 pandemic caused 1,798,154 deaths worldwide (Worldometer, 2020). One demographic group that is particularly susceptible to the SARS-CoV-2 virus is older adults with preexisting conditions like dementia (D'Adamo et al., 2020). Persons living with dementia (PLWDs) are twice as likely to contract COVID-19 than individuals without dementia, partly because memory impairment associated with dementia may interfere with their abilities to adhere to COVID-19 preventative measures (Wang et al., 2021). Dementia is also a strong predictor of COVID-related deaths due to aging and chronic comorbidities such as cerebrovascular diseases (Abootalebi et al., 2020). PLWDs may have experienced worse dementia symptoms, such as declines in cognitive function, aggravation of behavioral symptoms, and impairment in motor function, in consequence of the pandemic quarantine (Rainero et al., 2021).

The COVID-19 pandemic has also affected the psychological well-being of PLWDs and their caregivers. The requirements for social distancing have placed a physical barrier between families living with dementia and their support system. The lack of in-person support may induce an increasing sense of loneliness and depression in PLWDs and caregivers (Grenade & Boldy, 2008; Ye & Zhang, 2019). Furthermore, multiple studies suggest such psychological conditions can potentially increase the risk of delirium and aggressive behaviors for PLWDs, which may result in self-harm or injuries to others (LaHue et al., 2020; Kales et al., 2019). In addition, caring for a PLWD during a pandemic may lead to higher levels of burden, psychological morbidity, and financial stress (Rainero et al., 2021).

During the pandemic, Black American families living with dementia may have experienced an increasingly high dual burden with being at high risk for COVID-19 as well as dementia. Black American older adults have the highest rate of dementia illnesses and are twice as likely to be diagnosed with Alzheimer’s disease or other forms of dementia than White Americans of the same age (Alzheimer’s Association, 2021). Black Americans across the USA have also been disproportionately affected by COVID-19 (Millett et al., 2020). They are three times more likely to be hospitalized and two times more likely to die from COVID-19 than White Americans (Center for Disease Control & Prevention, 2021). As a result of the COVID-19 pandemic, Black Americans are particularly vulnerable to negative mental consequences and suffer from stress, anxiety, and depression (Ibrahimi et al., 2020; Novacek et al., 2020). Existing health disparities have heightened stress and affected the emotional well-being of Black families living with dementia (Phillips et al., 2020). While there is no perfect solution to the dual burden of dementia and COVID-19, faith and religiosity may serve as a protective factor against stressors for PLWDs and caregivers (Koenig, 2012). Religious coping encompasses a wide array of religious behaviors, including praying, seeking support from congregations and clergies, and attending religious services (Chatters et al., 2008). Engaging in religious activities may help Black individuals alter the psychological perceptions and consequences of unfavorable situations (Taylor et al., 2004).

Traditionally, churches have been the backbone of the Black community by providing much-needed support to families in distress (Assari, 2013). However, physical closures of Black churches during the pandemic may have forced families to opt for a home-based approach for practicing their faith and religious traditions (McGowan, 2020). A few studies have highlighted that the closure of churches due to the COVID-19 pandemic has negatively impacted the expression of spirituality and mental health of individuals (Chatters et al., 2020; DeSouza et al., 2021; Galiatsatos et al., 2020; Imber-Black, 2020). However, the extent of those effects on families living with dementia, especially for Black families, is unknown (Bavel et al., 2020; Wang et al., 2020). Therefore, the purpose of this research was to explore the impact of COVID-19 on the religious lives of Black families living with dementia. The findings from this study may identify how the spiritual needs, of Black PLWDs and their caregivers, were or were not addressed during the COVID-19 pandemic.

Methods

The phenomena of interest for this study were the firsthand experiences of Black PLWDs, dementia caregivers, and church leaders as they strive to continue their religious practices in the middle of a pandemic. This current study extended from a larger qualitative research project aiming to design faith-based home activities for families affected by dementia. For this study, we employed a qualitative descriptive design to investigate the COVID-related impact on religious engagement for Black families living with dementia. A qualitative descriptive design is characterized by low levels of interpretation from researchers, which makes it useful to gain firsthand insights into a poorly understood phenomenon (Colorafi & Evans, 2016; Sandelowski, 2000). Institutional approval was received for this study (IRB# 00115228).

Purposeful, non-probability sampling strategies were used to recruit a convenience sample of participants that were members of predominantly Black churches for the main research project. Participants from the main project were included in this study if they met the following inclusion criteria: (1) identifying as Black or African American; (2) identifying as a PLWD, current caregiver for a PLWD, and/or church leader during the pandemic; (3) being able to communicate in English; (4) having access to technology for video conferencing. Caregivers who provided care to a family member with dementia before March 2020 were not included in this study.

Data Collection

Black family caregivers, PLWDs, and church leaders in the metropolitan area of Georgia and Illinois were interviewed for this study. Verbal informed consents were obtained from participants or a legal representative for those deemed ineligible to provide consent before data collection. Participants were asked to participate in a semi-structured, one-on-one interview lasting up to one hour. Interviews were conducted between July 2020 and September 2020. All interviews were conducted remotely through videoconference by the PI (F.E.). The questions for the interviews were reviewed by experts and piloted by the research team prior to being used in the study.

Participants were queried on the unique spiritual needs and difficulties of families living with dementia during the COVID-19 pandemic. Caregivers and PLWDs were asked (1) how has the pandemic impacted their participation in religious practices, (2) what religious practices were they unable to engage in during the pandemic, (3) what challenges did they face while practicing their religion during the pandemic, (4) what support did they receive from their faith communities. Church leaders were queried on (1) changes in format when delivering religious practices and receiving feedback from their members, (2) how has the church supported members of their congregation affected by dementia during the pandemic. Additional information was collected using probes during interviews. Interviews were audio-recorded and transcribed verbatim. Pseudonyms and alpha-numeric codes (P1, P2, P3, etc.) were used to maintain the anonymity of participants. Field notes, such as observations and immediate impressions, were taken by the researcher during each interview.

Data Analysis

All interview data, including field notes and transcripts, were analyzed using thematic analysis and inductive coding (Braun & Clarke, 2006). Researchers first read all field notes to familiarize themselves with the data. The field notes of different researchers were compared to reveal inconsistencies in interpretation. Transcripts were then reviewed independently by members of the research team (F.E., Y.G., and M.S.) to identify codes and resolve any discrepancies among the individually developed codes. Microsoft Word and Excel were used to organize data and extract statements in the narrative interview. Fourteen codes were identified. Figure 1 illustrates the grouping of codes which resulted in five thematic categories.

Fig. 1
figure 1

Identification of thematic categories

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To enhance the rigor and credibility of data collection and analysis, participants were provided with a summary of findings to verify the interpretive accuracy (Carlson, 2010). Results of the study were shared with the project design team established by the PI for feedback (Lincoln & Guba, 1986). The project design team directly experienced the phenomenon under investigation by identifying as a Black American Christian and either a caregiver, PLWD, or church leader. A journal was maintained by the interviewer where biases, preconceptions, and thought processes were recorded throughout the study to achieve research reflexivity. The interviewer’s reflexive journal included: (1) assumptions regarding how churches can support PLWDs during a pandemic; (2) role as Black American Christian; (3) personal value system; and (4) potential role conflicts with participants (Tufford & Newman, 2012). In addition, an audit trail including the context of the study, data analysis protocols, and methodological decisions was employed to achieve confirmability of the qualitative study findings (Carcary, 2009; Rodgers & Cowles, 1993).

Results

Sixteen individuals participated in single interviews over the period of three months (see Table 1). All participants self-identified as Black or African American. Participants were predominantly female (81%, n = 13) and 60 years of age or older (69%, n = 11). Participants were persons living with dementia (n = 3), current caregivers (n = 7), and church leaders (n = 8), with 2 individuals having overlapping roles. Participants were members of the following Christian denominations: African Methodist Episcopal (19%, n = 3), Baptist (31%, n = 5), Holiness (6%, n = 1), Jehovah’s Witness (6%, n = 1), Presbyterian (13%, n = 2), United Methodist (6%, n = 1), United Church of Christ (6%, n = 1), and Non-denominational (13%, n = 2).

Table 1 Demographic characteristics (N = 16)
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Themes

Five thematic categories emerged from analysis of transcripts: (1) Ability to continue religious practices, (2) Increased church engagement, (3) Importance of fellowship, (4) Role of technology, and (5) New normal.

Ability to Continue Religious Practices

Participants shared that families had remained connected to their faith due to the ability to continue with religious traditions and practices remotely. Since the physical closure of Black churches, worship services were adjusted to online delivery. Most churches utilized various video conferencing platforms (e.g., Facebook Live, Zoom, and church websites) to invite congregants to engage at home. Many caregivers preferred this online transition as it enabled them to fully participate and receive more spiritual nourishment. One caregiver described her experience worshiping from home:

I feel less distracted. You know how when you in church and everybody jumping up, shouting, and hollering and stuff, and you can’t really get the sermon in? But now that he’s on the screen, and it’s nobody in the church but him, it’s just like he’s talking just to me. That’s… that’s the way it seems to me. But I sort of… I, I like it (P5).

As churches adjusted delivering services online, the length of online worship services was also reduced significantly. Caregivers believed condensed services were ideal for PLWDs due to their limited attention span. Likewise, a church leader received positive feedback from her congregants:

They liked that it’s shorter. They liked that it’s trying… it’s—and, and I’ll just use the term, truncated…We needed to get to the meat. So, they really appreciated that we go to the meat of the—the meat of the issue, um, which was getting there and hearing the word, worshipping, fellowshipping, and getting out (P3).

In addition to the provision of online services, some churches offered drive-in or outdoor services for special occasions. Church leaders received positive feedback from the community as “they [elders] indicated that they loved it, and that they want it to happen again and again while the weather is nice” (P11). However, one church leader pointed out the limitation of drive-in services for families living with dementia as she shared, “we actually did have some caregivers, a son, bring his dad. You know, and he was just excited. But that’s not always possible due to physical health” (P3).

Furthermore, participants recognized the importance of continuing religious practices such as the Holy Communion during the COVID-19 pandemic. One church leader summarized, “for people who are just used to having communion, their world is gone, shut down if they don’t have communion” (P3). To meet the needs of the families during the pandemic, churches have been delivering consecrated communion packages to families' doorsteps. A pastor provided a detailed description of how families living with dementia are receiving communion at home:

We give communion… we give you the bulletin… it outlines and asks whoever the head of the household is to be the person who does the communion…We’re all priests of our household. And, um, but I have consecrated it before we give it out. And that they actually take it and then they physically give it to the other members of their household. And that is something that is very familiar to those who have dementia because they’re used to receiving communion from someone that they see as an authority for them (P3).

Families living with dementia were able to remain connected to God and to their faith. One caregiver stated, “it [the pandemic] hasn’t stopped me from praising The Lord. It hasn’t stopped me from going to church. It hasn’t stopped me from knowing that I need to know The Lord on Sunday morning” (P2). Additionally, one participant believed that the adjustment in church services “has just been another way that God has showed us how to worship” (P5). One caregiver echoed this sentiment as she extended her gratitude to God:

I’m thankful; I just get so overwhelmed sometimes you know, with a good, in a good way, you know, thinking about, um—My pastor use to always say, “Everything is either sent by God or used by God.” You know? He doesn’t necessarily send a tornado, you know, that’s just part of nature and things are, you know, but he can use it. You know, just like this COVID. You know, it’s being used for some good stuff (P14).

Increased Church Engagement

Participants reported increased engagement in religious activities since the COVID-19 pandemic. As the pandemic pushed many Black churches online, caregivers and PLWDs unable to attend in-person worship services pre-pandemic were now able to actively engage in all church events. A caregiver, whose spouse had been homebound for years due to dementia, discussed the beneficial changes of churches adapting and hosting more of their services online:

So, about four years ago, she stopped attending the meeting. But I will say now with Zoom, you know, we have our midweek meeting at 7:30 like we usually do, and our Sunday meetings at 10 like we usually do, and we have ‘em on Zoom now. So, she’s able to sit in. Sometimes she, you know, she’s agitated and pacing… and sometimes she’s sleep… She’s not able to participate, but she’s able to view it. And the friends are always glad to see her (P3).

Church leaders also reported a significant growth in online engagement of church activities during the pandemic. The increased online engagement potentially reflected the increased attendance by PLWDs and caregivers. Many participants attributed this growth to the flexibility of time that recorded services provide. The replay feature of church services was especially beneficial for caregivers with busy schedules. As one pastor explained, “if they weren’t able to get to the service, um, then they were able to go back and watch the service later” (P3). This same pastor also substantiated this growing trend by utilizing data gathered from her church’s online platform:

We have more members who were not coming to service online, and connected—not just in the Sunday service, but also in Bible study, which is phenomenal for me. But our numbers in the sanctuary would be anywhere from 90 to 150 on a Sunday, right? But every… every… all of the data from the, um, different platforms—like it’s usually, at minimum, 450 people, somewhere in there every… you know, on, on a Sunday (P3).

The increase in religious engagement was also manifested in the daily aspects of the lives of PLWDs and caregivers. Caregivers shared that they started to establish new religious routines or unique family traditions during the pandemic. One caregiver disclosed that her family had designated every Sunday to playing Gospel music since the beginning of quarantine. She shared, “we would go out on the deck and put on the gospel. Just play just gospel all day long. And she [PLWD] is content and we sit and talk and just listen to the gospel all day on Sunday” (P1). For another caregiver, social isolation enabled her to devote private time into developing new routines, such as Bible reading and prayer.

Participants also recognized the role churches played in promoting religious engagement among congregants during the pandemic. Churches developed new outreach programs to help families living with dementia remain spiritually connected. Multiple church leaders mentioned the use of communication structures like texting groups or calling trees to check on their congregants. One pastor emphasized the outreach system for youths to contact older congregants and dementia caregivers:

We started like a phone call log where we would just call and check up on the older folks, before stores were opening and things like that. Finding out what they needed. Um, and it was interesting ‘cause so many of them were active, but checking on the ones who are caregivers, like, do you need a break, do you need us to run to the store (P7).

Aside from telephone communication, some churches also increased their effort to physically support their congregants by delivering care packages to their doorsteps. The packages often contained monthly church bulletins, exercise tips, church service updates, communion kits, and resources for food and household supplies. Church leaders reported this allowed homebound members to see a familiar face.

Importance of Fellowship

Despite all the strategies churches used to help congregants stay connected online, many participants expressed they missed the fellowship in-person worship services had offered. Traditionally, churches had served as a place for congregants to socialize with their friends and neighbors. One caregiver caring for her 79-year-old mother highlighted the importance of physical contacts and face-to-face socialization for older adults in particular:

The only reason I said people go to church is to physically fellowship and say, “hey, how you doing?”, that kind of thing. And for the older generation, that's the only way they know how to do it. They don't know how to do it virtual. They've got to have that physical contact to do that… And that's a part of how they were raised and going to church. You go every Sunday. We're going to see how Mr. Jones is doing and maybe barter and get the beans and you can take some sweet potatoes. And that bartering is what they grew up with (P13).

Missing physical touch was a sentiment that was shared between many participants. Another caregiver expressed, “I miss my church family. I miss seeing them. I miss touching ‘cause I’m a hugger. I miss that” (P16). In addition, another caregiver and PLWD dyad pointed out that the in-person church fellowship served as a safe haven for emotional expression. As they shared, “It (online worship) is not the same…It's not the fellowship…touching and reaching out…and running and crying and sobbing” (P2).

Furthermore, one participant suggested for PLWDs, the physical space of a church can evoke memories of them interacting with their friends and fellow congregants:

My mom had a seat in her church that she sat in for…forever. And so the people in the pews in front of her, the people in the pews behind her, they, they were all there. And then, like when, so you, you would chat with people before the service (P13).

In response to the absence of fellowship, one participant believed that friendships and companionship, previously established through the church, can still be maintained through remote connections such as telephone calls:

But that’s been one of the big things, you know, for me is realizing, you don’t even really miss going to church every Sunday, you know. I stay so busy… I don’t necessarily miss the fellowship ‘cause I still call my friends. I still call and check on people, and they still call and check on me (P14).

Role of Technology

Participants also discussed the role of technology as both a motivator and a barrier for religious engagement. One caregiver believed technology accelerates innovation. With the help of technology, she was able to attend multiple services from different churches during the pandemic:

Like so many people, I’ve been able to visit more churches, you know, online you know, and, and I love it! I absolutely love that! I still look at my church as well, but I really do—I like innovative things, you know, that’s why I like Bill Roberts, you know, um, really innovative. I like to see churches really involved in the community, you know, because we can still be a part of that, even with COVID, you know (P14).

For a caregiver who is Jehovah’s Witnesses, technology helped his wife living with dementia connect with other members around the world during the pandemic. Their denomination’s global website encompassed diverse topics including songs, The Watchtower, COVID updates, prerecorded conventions, public talks, etc. According to him, “once you start … digging into the website you’ll see that there’s something in there for everybody, for every situation … for everything” (P6). The online community established through the Jehovah’s Witnesses website helped his wife to “feel like she’s a part of a worldwide organization instead of just, ah, you know, just she and I” (P6).

On the other hand, some participants were concerned that technology may hinder older adults from accessing church services. Church leaders reported that their older congregants had experienced difficulties with using technology. One church leader also introduced her ministry’s establishment of an outreach team to help with technology issues:

So whether or not they could actually get online was then the concern. And so… when they [outreach team] would go out, they would make sure that the caregivers, many of whom themselves did not know how to connect … via the internet; they didn’t have Facebook to watch Facebook Live. They didn’t understand how to get on the website. They just were not technologically literate. And so, that team, then, was able to help…the household connect with faces at the church (P3).

To address the problem of limited digital fluency, several participants received help from younger generations. One caregiver described the ways her grandson assisted him with setting up TV for worship services:

When it first started, I did [had difficulties with technology] because aging people and electronics don’t always agree with one another. But thank God they got young people in the house that know how to do that. So, they teach you. So, now I can get on by myself… the very first one, I had to come downstairs and sit down with Bruce and watch him on television. ‘Cause Bruce put it on our TV in the living room (P2).

Other participants pointed out some families did not have the equipment to access technology, including TV, computer, and the Internet. Churches were seeking ways to accommodate those families’ needs:

Two of our members … could not watch online, so that, if the person is not able to have connection in that manner, it’s a technical aspect that was a concern. So, we actually purchased two TVs for two of our members that has the DVD player in it, so that they can watch the DVDs because they don’t have internet…So, then we’re working on what we do on Sundays is recording that and making sure that we have DVDs for them to watch those services, ‘cause our services are pre-recorded (P10).

New Normal

All participants agreed that the COVID-19 pandemic had forever changed the way families and ministries worship. As one participant summarized, “there may be a return to the sanctuary, but there’s never a go back to what we used to” (P8). All church leaders interviewed expressed the intent of continuing online worship services in the post-pandemic era. One church leader shared the vision of her ministry:

One of the things that we are committed to is when—not if—but when we’re able to go back into the church space, how do we continue with our live streaming so that those family members who might’ve felt like, “How do I get home? How do I get to church? I can’t leave my family member. Oh, I can’t watch it until next week when it’s finally up on the… on the website,” they can fully participate. And so, the pandemic has helped us be able to provide service to those who were home ridden and weren’t able to before (P7)

Moreover, numerous churches invested in improving their information technology equipment to deliver high-quality remote services in the long run:

As we built our budget, or we’re building our budget for this next conference year, we’re including technology in it because we will have to make sure that …our church is able to deliver virtually as well as live and in person. So, we’re gonna have to have some media specialists…we’re gonna have to have a production manager that helps us to put together a professional presentation for when we are delivering live…so that means that I’m gonna be talking to a teleprompter, as well as talking directly to an audience so, may not be using a handheld mic, may have to use a, you know, a lapel mic (P8).

Discussion

Churches play an integral role in Black communities (Assari, 2013). However, the COVID-19 pandemic has presented challenges to the Black community resulting in widespread disruptions of religious practices (DeFranza et al., 2020). This study sought to explore the impact of the COVID-19 pandemic on the religious lives of Black families living with dementia. The personal accounts of Black PLWDs, caregivers, and church leaders were gathered to provide a comprehensive view of the religious experience for the families in a time of crisis.

The analysis of participants’ interviews indicated that families with dementia continued religious practices during the pandemic through innovative formats. In response to the cancellation of in-person worship, churches adopted online worship services that enabled PLWDs who were homebound for years to actively participate. Online delivery formats may already be familiar to individuals affected by dementia, as a previous study has shown religious programs on television, podcasts, and live streaming connections which were used as alternative methods of religious engagement for PLWDs who cannot physically attend worship services even before to the pandemic (Epps & Williams, 2018). Additionally, most participants preferred services that were more concise and shorter in length, partly due to the reduced attention span of PLWDs. This finding is consistent with previous research that reports the simplicity and conciseness of worship services which are essential in promoting engagement and participation for PLWDs (Epps et al., 2020a).

Participants reported an overall increased engagement in religious activities, including church services, Bible studies, and prayers, during the pandemic. This may indicate the potential increase in church engagement for families living with dementia in particular. The engagement parallels literature examining how Black cancer survivors increased religious participation to cope with COVID-19 (Hamilton et al., 2021). The significant increase in religious engagement highlights the function of spirituality as solace and support when in the face of calamity (Defranza et al., 2020). Moreover, participants reported that social isolation gave caregivers ample space and time for spiritual nourishment and self-reflection. Some caregivers were able to use this opportunity to engage in learning about their own faith and establish new religious routines. This sentiment echoes the findings of previous studies which reported that for some Christian families spending time away from the church community can ultimately strengthen one’s faith (VanderWeele, 2020).

With the increasing use of technology by families and churches during the pandemic, several participants emphasized the role of technology as a double-edged sword. Some participants perceived technology as an innovative tool that helped PLWDs and caregivers to stay spiritually connected without having time and location as constraints. However, other participants raised the concern about technology being the barrier for older adults to access online church services. With older PLWDs and caregivers not having the relevant equipment and skill for accessing technology, churches played increasingly important roles in providing technical support to their congregants. Additionally, several caregivers received assistance from their grandchildren with setting up technology. From this perspective, technology use as the result of the pandemic may help facilitate intergenerational bonding. This may be favorable for families affected by dementia, as previous literature suggests that intergenerational bonding has mutual benefits for older adults with dementia and young participants (Chung, 2009).

Overall, Black churches and their congregants adapted to a “new normal” as the result of the pandemic. Many church leaders were planning to continue with providing online worship service even when ministries reopen church doors to their congregants. This would be particularly beneficial to PLWDs and their caregivers who were incapable of attending in-person worship services. Furthermore, most participants demonstrated an optimistic attitude toward changes in their religious practices as a result of the pandemic. Many participants realized the physical closure of churches did not inhibit an individual’s ability to engage in religious practices. Many congregants believe that God has allowed the pandemic to happen for a reason. Positive religious coping, acceptance of the pandemic as God’s plan, helped caregivers and PLWDs to find their purpose and overcome loneliness associated with social isolation (Dolcos et al., 2021; Koenig, 2020).

Limitations

There were several limitations in this study. Participants were recruited from a small convenience sample, with many having connections to the primary investigator, possibly resulting in selection bias. Secondly, more than half of the participants interviewed were Baptists and Methodists residing in similar geographical locations. Further, due to social distancing mandates, all interviews were conducted through video conferencing platforms. Therefore, the research team may have selected participants that were more technology-savvy.

Future Research and Implications

Recommendations for future studies are to widen the scope of this research to include other ethnicities and religions outside of Christianity. Future research should also focus on further exploring the effect of COVID-19 in promoting intergenerational bonding for Black families. Faith leaders and churches may utilize findings to design worship services and outreach programs specifically tailored to families living with dementia during the COVID-19 pandemic. This study’s findings may apply to homebound individuals living with other chronic conditions and their families during a pandemic. Additionally, educational efforts should target to clinicians who work with older adults to assist their patients with identifying sources of spiritual support during the pandemic, thus contributing to person-centered care (Epps et al, 2020b; Kowalczyk et al., 2020). Incorporating religious practices and activities into treatment plans have been shown to positively improve health outcomes (Koenig, 2012).

Conclusion

Overall, the COVID-19 pandemic has created lasting changes for Black families living with dementia and their church communities. It is critical for churches to meet the needs of their congregants and communities during the COVID-19 pandemic and future public health crises (Monson et al., 2021; Williams et al., 2021). The findings from this study contribute to understanding of the spiritual needs of Black PLWDs and their caregivers when experiencing social isolation. More specifically, these findings have potential to support families living with dementia who wish to continue their engagement in religious practices and living in meaningful ways.