Religion, Spirituality, and Coping During the Pandemic: Perspectives of Dementia Caregivers

Abstract

Religious and spiritual (R/S) practices support individuals during difficult situations. The COVID-19 social distancing restrictions may have limited access to R/S practices for older adults with Alzheimer’s disease related dementia (ADRD) and their caregivers, affecting coping and well-being. This qualitative study explored the impact of social distancing on R/S practices and coping in ADRD-caregiver dyads from the perspective of caregivers. Interviews were conducted with 11 family caregivers of older adults with ADRD residing in nursing homes (n = 4) or private homes (n = 7). Caregivers continued individual and started virtual R/S practices which improved their ability to cope. However, organized R/S practices were unavailable for those with ADRD, but they used prayer and read religious texts which noticeably improved their mood. Healthcare professionals’ sharing of individual and community R/S resources available for ADRD-caregiver dyads could decrease anxiety and agitation, while improving their ability to cope with increased isolation.

Introduction

Alzheimer’s disease and related dementia (ADRD) is a growing public health concern of great cost to society, estimated to affect nearly 13 million Americans by 2050 (Alzheimer’s Association, 2022). As a progressive and terminal illness, ADRD affects not only the individual who has ADRD but also the family members who often provide that individual’s care. Twice as many ADRD caregivers report substantial financial, emotional, and physical problems as do caregivers of persons without ADRD (Alzheimer’s Association, 2022).

When the United States and many other countries enacted social distancing restrictions for the COVID-19 pandemic in early 2020, these actions limited previously available services for older adults with ADRD and their caregivers. Such services include preventive health care, social care, and caregiver respite; and enjoyable social interactions and activities with friends and family became limited as well. In combination with increased susceptibility to COVID-19 and increased risk for worse health outcomes (Alzheimer’s Association, 2020; Wang et al., 2021), these limitations presented challenges and caused stress for older adults with ADRD and their caregivers. During such difficult times of uncertainty, illness, and stress, individuals often rely on religion and spirituality in order to cope (Ano & Vasconcelles, 2005; Katsuno, 2003). For older adults with ADRD who find religion and spirituality important, faith is part of their identity, and they find security, meaning, and connection in their relationships with God and in religious and spiritual (R/S) practices (Daly et al., 2019; Higgins, 2014). R/S practices are also one of the most important coping resources for caregivers of older adults with ADRD, with 73% reporting prayer as a means of coping with the demanding challenges of caregiving (Caregiving in the United States, 2005). Participation in R/S practices promotes fellowship with others and is associated with decreased depression among caregivers of older adults with ADRD (Hebert et al., 2007). However, little is known about how social distancing impacted the practices of religion and spirituality among older adults with ADRD and their caregivers as they attempted to cope with the COVID-19 pandemic.

The purpose of this qualitative study is to identify the impact of COVID-19 social distancing on R/S practices and coping among caregivers and their loved ones with ADRD from caregivers’ perspectives—to understand how caregivers and older adults with ADRD use R/S practices to cope with high stress and uncertainty, and how these practices may become altered by available resources.

Sensitizing Framework

Religiosity and spirituality can be difficult to define as constructs for measurement (Steinhauser & Balboni, 2017; Zwingmann et al., 2011), and so in the present study we use Zwingmann et al. (2011) “vulnerability-stress-model” incorporating religiosity and spirituality to guide our research (see Figure 1). Religiosity and spirituality are overlapping constructs, and the model offers a structured approach to individuals’ use of religiosity and spirituality in response to stress with the potential to influence health outcomes and well-being. The model includes five constructs for religiosity and spirituality that have been used to guide the content analysis of interviews in empirical studies. (1) Centrality refers to the importance of religion or spirituality in one’s life and describes a disposition or a use of resources to engage in one’s beliefs and practices (e.g., prayer, attending religious services, meditation, and yoga). (2) R/S resources may be individual or social, representing how individuals may draw from faith, beliefs, and behavior in response to a stressor (i.e., through R/S community support or a personal relationship with God). (3) R/S needs refer to an individual’s desires and expectations in relation to finding meaning, purpose, and value in life. (4) R/S coping represents ways of viewing, understanding, and overcoming stressors (i.e., strategies, behaviors, and emotions; Pargament et al., 2000). (5) R/S quality of life and well-being refer to individuals’ perceptions of their positions in relation to their goals or expectations in life (World Health Organization Group, 1993).

Figure 1.

Vulnerability-stress-model incorporating religiosity and spirituality.

Note. 1 = Centrality of religion; 2 = religious and spiritual resources; 3 = spiritual needs; 4 = religious coping; 5 = spiritual well-being/quality of life (Zwingmann et al., 2011).

Methods

Study Design and Setting

A descriptive qualitative design was used to explore the impact of social distancing on the utilization of religion and spirituality for coping with COVID-19 among family caregivers and their loved ones with ADRD, from the perspective of caregivers. The data for this study were collected as part of another study examining the impact of COVID-19 social distancing on health and well-being in individuals with ADRD and their caregivers living in the community and long-term care. Focusing on sleep, nighttime agitation, and medication changes, the larger study was funded by a supplement from the National Institutes of Health, National Institute on Aging (R01AG051588).

Sampling and Recruitment

Purposeful sampling was used to recruit a convenience sample of self-designated direct and indirect caregivers of older adults with ADRD. Inclusion criteria for the older adult with ADRD were as follows: (1) age 55 years or older, (2) residence in a home or nursing home, (3) memory problems, (4) behavioral confusion or irritability in the afternoon or evening, and (5) difficulty sleeping at night. Participants were recruited through referrals from local geriatric providers and through word-of-mouth referrals from communities located in central Texas. Recruitment flyers were posted on social media and distributed to local geriatric care management organizations. About 16 potential participants were approached; 15 consented to participate, but 4 were ultimately undecided, unreachable, or uninterested; a total of 11 participants were interviewed.

Ethical Considerations

The Institutional Review Board of The University of Texas at Austin approved this study. Following approval, study staff obtained participants’ consent. To protect confidentiality, ID numbers were used to keep any identifying information separate from survey answers.

Data Collection

Data were collected through telephone interviews with only the interviewer and the consenting caregiver present. Participants included both direct caregivers (DCs) living at home with a loved one with ADRD and indirect caregivers (ICs) of loved ones with ADRD living in long-term care. Participants were informed of the study’s purpose upon consent. The interviews were conducted by the first author, who is a well-trained and experienced qualitative researcher with older adults, doctoral candidate, prior family caregiver, and female registered nurse with experience in gerontological nursing care management of older adults and their caregivers. Prior to conducting the interviews, the interviewer was unknown to the participants and had not provided them with any nursing care. Interviews were scheduled for 30 to 90 minutes with participants while they were at home; no repeat interviews were needed. The interviews were semi-structured, and the interview questions were open-ended. Data collection lasted from October 2020 to May 2021, and participants received $50 for enrollment in the study.

The interviews and follow-up questions included some yes/no survey questions (see Supplemental Material 1). The survey was developed by the first author (KCB); refined by the second author (KCR), a nurse scientist and researcher specializing in dementia care; and finalized by the third author (KR), a nurse scientist and engineer specializing in gerontology and technology for older adults. Interview questions were further approved by the remaining authors and pilot tested with a nonparticipating caregiver before data collection began. Among the questions were the following: “What is helping you cope?” “Do you identify as a religious or spiritual person?” If participants answered “yes,” they were then asked, “Has religion or spirituality helped you cope with the present situation and how?” Interview questions specific to the older adult with ADRD included the following: “Would you say your loved one is a religious or spiritual person?” If participants answered “yes” to this question, they were then asked, “Has religion or spirituality helped them cope with the present situation?” Follow-up questions were asked to clarify any responses as needed.

Data Analysis

Interviews were recorded and transcribed using the Rev transcription service. All transcripts were checked for accuracy and quality by study authors (AV-L and EP). Transcripts were analyzed by the first author and the fourth and fifth authors (KCB, AV-L, and EP), who were trained by the experienced qualitative coders (KCB, KCR, and KR) before data collection began. The investigators met weekly to provide (1) feedback and discussion, (2) a coding tree to use as a guide for analysis, and (3) coding verification for interrater reliability. Each transcript was coded separately by two authors for consistency using Dedoose software Version 8.3.45. The vulnerability-stress-model framework incorporating religiosity and spirituality was used to develop an initial scheme for directed content analysis (Hsieh & Shannon, 2005). The use of such a theoretical framework to provide a context for examined concepts and to suggest initial coding schemes and associations among codes (Mayring, 2000) is especially helpful for addressing abstract concepts such as spirituality. Coding patterns were summarized, and the authors discussed interpretations until consensus was reached on themes and subthemes.

Predetermined coding categories derived from the vulnerability-stress-model’s framework incorporating religiosity and spirituality were used to code key words or phrases related to coping, utilization, and benefits of religiosity and spirituality in response to social restrictions prompted by COVID-19. Becoming immersed in the data, authors read and re-read the data. The first author (KCB) began initial analysis of the data by making notes and identifying common codes to be used in analysis, adding to the preliminary codes as needed. Codes were collapsed into categories informed by the model’s framework and clustered according to the findings. Counts were also collected for participants identifying themselves and the older adults with ADRD as religious or spiritual and whether R/S practices helped them find comfort, peace, and hope. Analysis ceased once saturation was reached and conversations became redundant (Walker, 2012).

Study Rigor

For reflexivity, the interviewer kept a diary throughout the study with notes on participants’ comments, the researcher’s feelings that arose during interviews, and data analysis. For transparency as well as quality, the authors used a comprehensive checklist of necessary components for qualitative study design (Supplemental Material 2; Tong et al., 2007). In addition, for trustworthiness, an audit trail included methodological decisions, the study protocol, and description of the data analysis process (Carcary, 2009). Participants’ feedback on the findings was not requested, but member checking during the interviews supported response credibility. All analyses were reviewed independently by research study team members.

Findings

Eleven caregivers participated in the study. Seven were DCs (caregivers of older adults with ADRD living at home) and four were ICs (caregivers of older adults with ADRD living in nursing homes; see Table 1). The caregivers’ mean age was 63.8 (14.2) years, and 81.8% were female. Themes and subthemes of caregivers’ descriptive responses about their experience and perspectives of their loved ones’ utilization of religion and spirituality to cope during the COVID-19 pandemic were based on the following five concepts: (1) centrality of R/S practices, (2) R/S resources, (3) R/S coping, (4) R/S needs, and (5) quality of life/well-being.

Table 1.

Demographic Characteristics of Participants.

Characteristics	n (%)
Gender
Male	2 (18.2)
Female	9 (81.8)
Age (years)
20–29	1 (9.1)
50–59	1 (9.1)
60–69	5 (45.5)
70–79	4 (36.4)
Type of caregiver
Home caregiver	7 (63.6)
Non-home caregiver a	4 (36.4)
Marital status
Married/partnered	8 (72.7)
Single	2 (18.2)
Other	1 (9.1)
Race
White	10 (90.9)
Asian	1 (9.1)
Ethnicity
Not Latino or Hispanic	11 (100)
Highest level of education
High school graduate, diploma, or the equivalent	1 (9.1
Bachelor’s degree or higher	10 (90.9)
Employment status
Full-time	1 (9.1)
Not working (disabled or unemployed)	2 (18.2)
Retired	7 (63.6)
Student	1 (9.1)
Relationship with older adult with ADRD
Spouse/partner	3 (27.27)
Child/in-law	4 (36.36)
Other	4 (36.36)
Duration of caregiving
Less than 1 year	1 (9.1)
1–4 years	6 (54.5)
5–10 years	4 (36.4)
Annual income
Less than $10,000	1 (9.1)
$10,000–$29,000	1 (9.1)
$30,000–$49,000	3 (27.3)
$50,000–$69,000	3 (27.3)
$70,000 or above	3 (27.3)

Note. N = 11. ADRD = Alzheimer’s disease and related dementia.

^aIndicates indirect family caregiver of person with ADRD living in a nursing home.

Centrality of Religion/Spirituality

With respect to the importance of religion and spirituality in the lives of the older adults with ADRD, the majority of caregivers (7 of 11; 64%) identified their loved one with ADRD as religious or spiritual. About 2 of the 11 (18%) caregivers reported that their loved one with ADRD was not religious or spiritual and 2 (18%) reported that their loved one with ADRD used to be religious or spiritual (see Table 2). Caregiver IC5 provided an example:

Both of my parents, very, very spiritual and very, very religious. We’re talking about their whole lives at church. . . My mother is a very spiritual person, but I’m not sure if she has whatever she needs to continue to be spiritual right now.

Table 2.

Findings on the Utilization of Religion/Spirituality Among Caregivers and Older Adults With ADRD During Social Distancing.

	Caregivers	Older adults with ADRD
Centrality of religion/spirituality	All reported Religion or Spirituality importance	Majority found Religion or Spirituality important
Religious and spiritual resources	Individual resources such as prayer, reading, and meditation	Individual resources such as utilizing religious objects such as prayer book, rosary, and talking to God/significant
	Community resources available virtually such as fellowship groups and virtual religious services	Few received community support
	Provided comfort, peace, and hope	Majority stopped attending religious services in person
		Few were able to watch virtual religious services
Spiritual needs	Expressed need for meaning and connectedness with others and God/significant	Loss of connectedness with others
Religious coping	Using belief and faith in higher power prompted hope and comfort	Using belief and faith in higher power prompted hope
	Virtual options greatly helped	Not able to utilize virtual options as easily—more limited
Quality of life/well-being	Helped transition to sleep	Decreased anxiety
	Calming	Calmed them and improved their mood
	Helps with mindfulness	Prompted cognitive stimulation
	Provided security

Note. ADRD = Alzheimer’s disease and related dementia.

All 11 caregivers, however, identified themselves as a religious and/or spiritual:

I believe there’s a God. This isn’t the only life there is when you die, your spirit still goes on. . . A lot of that helped me get through my problems. I’ve had a lot of health problems earlier in my life. It’s one of the. . .There’s always tomorrow (laughs). (IC3)

Religious and Spiritual Resources

R/S resources can be individual or social, but only one caregiver (DC6) reported that their loved one with ADRD received direct support from a religious community or organization at home.

Well, we usually go to the church every, every Sunday. And sometimes if we cannot go, they come down here [private home] to give him the Holy Communion. . . I have the chaplain that comes here and, you know, talk about Bible and whatnot. That helps us a lot, you know. . . and he is really a very good support believe me, especially, you know. Very helpful.

Six of the seven caregivers who defined their loved ones as religious or spiritual reported a substantial reduction in attending religious services, because older adults with ADRD could not go in person due to self-restricting measures for safety. For some, this was a drastic change from years of service attendance, although for one older adult with ADRD, R/S activity at home increased:

We have not been to church probably since March. I guess another social thing was going to church. (DC5)

They can’t go to church so the people they had—so, there’s like nobody. I think what would help too is a priest, maybe doing some little—they’re like, they’re Catholic and they really believe. . . I think if the churches had reached out a little bit more to their seniors. . . At Christmas time they really wanted to go to Christmas Mass, and I called the church and I asked them to reserve two seats for them. I said, “My dad’s been going there for 47 years, he gives you guys a lot of money every month.” They wouldn’t do it, so they didn’t go to Mass. (DC3)

Given this change, only two older adults with ADRD were able to watch religious services on television or a computer. However, due to decreased hearing ability, another older adult with ADRD was not able to hear such religious services, further limiting her resources to meet her coping needs. Remotely connecting depended on caregivers’ technological skills as well as the personal abilities of older adults with ADRD.

My mother’s church no longer holds worship services. Nothing in person. They do it, you know, by video. . .Facebook or Zoom, some virtual system. But that doesn’t work for my mother because she can’t hear well enough and she just doesn’t like computer screens anyway. (DC4)

And what has helped too is, so my aunt and my grandfather moved here to live with us when my grandmother passed away and they moved from South Carolina, and we’ve been able to play services from their church in South Carolina. And so, he can still remember that. (DC5)

One caregiver reported using a virtual service as an activity for their loved one with ADRD to engage: “One thing that keeps him busy during the week is we’ll play an old sermon or something like that on YouTube” (DC5).

For individual R/S resources, older adults with ADRD were reported as using R/S objects as support; these included a crucifix, prayer book, rosary beads, and the Bible to support faith and beliefs.

Well, I notice when she’s—when I was over at the house all the time, she has these little prayer books out. So, she reads—I don’t know if she’s really reading them, you know what I mean? But I think that—I think she relies on her Catholic—because she believes like, you know, she says the Hail Mary and she’s—you know, she’s got the Rosary and stuff like that. I think she’s—that she knows she can’t go out so I think doing it in the house has helped her. (DC6)

For some, their relationship with God enabled them to cope through prayer and talking to God.

For caregivers, R/S resources changed somewhat with restrictions in place, but participants reported still being able to utilize community support through fellowship focused on reading the Bible, prayers including saying the Rosary, or virtual services online. Individual resources included (1) reading a printed copy of a weekly sermon received in the mail, (2) prayers, and (3) practicing meditation exercises at home. One participant (IC5) said that it was not possible to provide R/S support to other community members in need because of restrictions:

Well, the church I go to, obviously I didn’t go for a long time because they didn’t have services. I used to serve communion at a retirement community here in (city), (retirement home). For about seven or eight years, a friend of mine from our church, we would go serve communion to some folks up there that couldn’t get to church. And we got to know them. . .Their relationship was just like one day we’d go up there, and we’d serve communion. And then next month, we don’t ever see them again. And we have no way of knowing what happened to them. Because I could call up and go, “Hey, how is so and so doing?” Because they’re not going to tell me.

As another (DC2) said, “The group feeling of church has definitely been cut off. . .The fellowship, yeah. Our church had such good fellowships. Once a month, everybody brought things and we ate together. There was always something going on.”

R/S practices changed to presentation on video platforms for some during COVID-19. One caregiver’s long-standing participation in Bible study fellowship changed to presentation on Zoom:

Well, I’ve been in a men’s Bible study for about 15 years. And so obviously when COVID hit, we couldn’t go to church anymore to do it. We used to hold it down at the church. And so, we started immediately on Zoom, and we actually ended up having more people coming on a regular basis than we did when it was. . . at church. It’s really an interesting group. . . We have a lot of fun other than that. So, we kept on doing it. (IC5)

Another caregiver cherished her evening video Rosary service, which was now available during social distancing:

We do a virtual Rosary every day. . .Yeah. Uh-huh, every day from 5 to 6. . .My—yeah, my friends has, they have virtual praying for me. (DC6)

Another caregiver said that R/S activity provided comfort through sharing burdens with others, but that during isolation this was difficult:

They’re encouraging. You hear different things other people are going through and how they’re handling it and coming out on top. And then there’s some that have suffered great losses and you try to comfort them. It works both ways. You’re not available to comfort anybody and you’re not available to encourage anybody. I think it’s a tremendous loss. I love studying my Bible, but it’s still isolated, you know? (DC2)

For some of the caregivers, attending religious service wasn’t necessary for being connected to God; they drew upon individual resources such as talking to God personally:

Oh, I’m one that you don’t have to go to a facility to believe. It hasn’t affected it. I’m a believer of God, and I talk to. . . I think I probably talk to him a lot more. (IC4)

After asking the participants whether they identified as a religious or spiritual person (i.e., yes/no), the interviewer asked whether religion and/or spirituality was a resource of comfort, peace, and hope (i.e., yes/no). Interestingly, all 11 caregivers answered “yes.”

Spiritual Needs

Spiritual needs implicate needs for meaning, purpose, and connectedness. The importance of connectedness with others for older adults with ADRD was strongly emphasized by their ADRD caregivers, because immediate social interaction was lost. Older adults with ADRD may have other physical limitations as well; as one caregiver said, her father’s loss of social connection at church was compounded by his inability to communicate with others through writing:

my brother used to take my dad to church every Sunday. That was totally done. The interruption. . . My dad lost all of that support group there, and my dad has tremors so bad in his hands that he can’t even write. I inform people. . .write to him, don’t expect anything back cause he can’t write. So, we’ve been trying to do the best we can within the restrictions that we have. (IC3)

One DC reported the struggle of loved ones, a couple with ADRD, who could no longer connect with others within their usual social context.

With them it’s been really hard. She’s a social butterfly. And not seeing anybody except us, you know, and then the caregiver that comes in, it’s hard on her. (DC7)

Another caregiver, who had to move back home to provide care for his mother during the pandemic, found meaning through being with his mother in his childhood home during that time:

Well, I guess it’s my mother, even though she has dementia, she’s a nice, friendly person with a smile on her face and she has a beautiful home, a beautiful yard. It’s the place I grew up in. (DC2)

For some, communion with others was still possible:

My support group. Every Monday night, I had my guys from my Bible study. And we certainly didn’t talk about my mom or my dad every Monday night, but we did occasionally. I knew I had them and their prayers. And so, it was just nice to have something that, even though we were doing it over Zoom, we were still getting together. (IC5)

And thus, connectedness with the sacred or significant throughout the day was important:

Spirituality, as you go through your day, and again, talking and whether it’s a real being or it’s whatever, just saying it and thinking they heard, and then having a response in your mind that maybe they sent, or you thought of it because you’re open. (IC4)

Religious Coping

Strategies used for R/S understanding and framing the stressful situation included faith, living upright, and belief in a higher power that instills order:

Well, it helps him because it keeps him grounded and gives him hope. This isn’t the end. There’s better coming. (IC3)

Even though she’s not a huge student of the Bible, she understands the general message of Jesus, and that is to care about other people and to live a good life. And she’s tried to follow that all of her life. She’s a good example to follow, and I wish that I could have followed in the footsteps as well as she did. (DC4)

Six of the 11 of caregivers thus reported that religion and spirituality were helping their loved one with ADRD cope with the restrictions; as one said,

It’s helped. It’s been a friend—a friend of hers for her entire life. And it’s probably part of the reason why she’s almost always a happy person with a smile on her face because she—she always expects good things in the future. (DC4)

The majority of caregivers also reported that older adults with ADRD were able to understand and follow R/S activities:

Depends on the day. Sometimes he’ll listen to music and then when the actual service starts, he’s done and sometimes he’ll sit through it and actually listen and everything. And then sometimes he just falls asleep. . . I think it puts him in a better mood, kind of helps him calm down. (DC5)

Religious coping strategies included saying the Rosary/hail Mary, talking to God in prayer, reading religious texts, and watching a virtual R/S service:

I think praying about being confined to the bed. . .I know he’s still very much praying for other people because what else are you going to do like that? One day he was saying he couldn’t work much, or he wouldn’t do this or that. I said, “You don’t know how valuable you are. You spend so much time in prayer for everybody else every time that something comes up. You pray for the boys when they’re on their way back to college. You pray for this, and you pray for that. It’ll be a long time coming before you ever find out how valuable this time in bed has been.” He seemed to appreciate that and continue to utilize. If somebody calls and says they’ve got a situation, he’ll pray. (DC2)

Caregivers also framed control with respect to a higher power and reported that they received hope, support, and giving thanks to face the stress of the pandemic.

I just know that God wouldn’t put me in a situation that I can’t handle and that my family can’t handle, and He gives us strength through it all. And whenever we need to be calmed or we’re feeling anxious or something and just some prayers and stuff and everything helps. He keeps us sane. (DC5)

Another caregiver said that prayer helped with mindfulness:

Prayer helps and helps me to get centered and focused. (DC1)

And one, despite having R/S doubts and uncertainty, still expressed that spirituality gave him hope:

My spirituality is best described as one of hope. . . And hope is better than nothing. (DC4)

Quality of Life/Well-Being

Caregivers reported that R/S practices provided beneficial effects for their loved ones with ADRD. R/S activities were thought to improve the mood of older adults with ADRD and to calm their behaviors. Some said that R/S activities were cognitively stimulating for their loved ones with ADRD:

If he’s getting anxious or antsy and he’s already been out on a walk and stuff and we’ll put on a service for him and it kind of helps him calm down, sit down and listen. And then he’s out of that anxious mood. (DC5)

He enjoys being able to watch the stuff online. . .Yeah, I mean, he’s just been a very strong believer his whole life and it’s almost feelings of that come over him when he is watching that. And he will start to almost like sometimes he starts to remember things. (DC5)

Well, it helps him because it keeps him grounded and gives him hope. This isn’t the end. There’s better coming. (DC3)

The impact of R/S engagement was described by caregivers as calming, helping with mindfulness, facilitating transition to sleep, providing security, and physically invigorating:

It kind of resets me I guess, for the week and kind of it’s like a calming feeling, I guess you could say. (DC5)

It soothes me because I know He’s there for me. . .That’s all I have. And He is the only one that I can depend on to help me take care of her, watch over her. (IC1)

Discussion

The perspectives of family caregivers reveal the impact of pandemic-prompted social distancing on R/S practices and coping in caregivers and their loved ones with ADRD. All the caregivers and the majority of older adults with ADRD in this study found religion and spirituality important. This finding is similar to the findings of a prospective U.S. study of caregivers of persons with moderate to severe ADRD, in which 70.4% found R/S faith important and 77% reported praying nearly every day (Hebert et al., 2007). Utilizing religion and spirituality for coping appears to be beneficial as research has shown that religious practices, beliefs, and attendance are associated with improved mental health and decreased psychological distress (Hebert et al., 2007; Koenig et al., 2012). R/S participation fosters positive psychological emotions. It is a source of social interaction, cognitive stimulation, load sharing of emotional burden, and family bonding (Chen et al., 2020; Koenig et al., 2012) which may promote hope, optimism, and a sense of control (Krause & Hayward, 2016). Plangger et al. (2022) have reported negative effects of pandemic-induced social isolation on cognitive function, anxiety, depression, and quality of life in older adults living in nursing homes. Supporting R/S practices during stressful times is therefore important, especially because older adults with ADRD are at greater risk of complications during a pandemic (Wang et al., 2021) and ADRD caregivers face greater physical, emotional, and financial burdens (Alzheimer’s Association, 2020).

Few resources were available for older adults with ADRD to support their religious attendance at services or through virtual platforms. Their usual resources were abruptly stopped due to social distancing restrictions, and caregivers reported that their and their loved ones’ ability to draw on their faith and R/S practices was thus greatly limited. This affected their stress management. For adults with strong R/S self-identity, religious coping is a significant predictor for lower mortality after controlling for age (VanderWeele et al., 2017). Older adults with ADRD were impacted disproportionately in connecting with their established R/S community, and they received little community assistance from chaplains or faith-based leaders. Indeed, experiencing a break from an established chronic social connection has potential to impact one’s health (Holt-Lunstad & Steptoe, 2022) and for those with dementia, may prompt decline in previous skills and cognitive function (Armitage & Nellums, 2020; Read et al., 2020; Wang et al., 2020). For some, the disruption in R/S practices was influenced by physical disabilities common among older adults (Centers for Disease Control and Prevention, 2020), such as hearing impairment, mobility limitations, and even difficulty writing. This further limited their ability to watch virtual services or to write to friends. As disability and medical illness can impact coping abilities and participation, receiving support from religious communities has the potential to allow older adults to continue meaningful connections to R/S practices, slow the rate of further disability (Hayward & Krause, 2013), and expand R/S practice opportunities.

Caregivers did play an integral role in ensuring that their loved ones with ADRD had opportunities for R/S practices during the pandemic. Older adults with ADRD who often accompanied a family member to religious services were dependent on their caregivers to continue their R/S practices. Likely because of lower computer and internet literacy (Jones & Fox, 2009), older adults’ ability to engage in virtual R/S resources prompted more reliance on caregivers for assistance. Indeed, the COVID-19 pandemic has accelerated the need for technology literacy among older adults. Many community centers, libraries, and other services closed down while medical clinics and grocery stores offered online options for those capable of navigating internet platforms. Caregivers were more likely to be able to transition their R/S practices to connect virtually or through individual prayer; they reported continuing to actively pray, connecting with others virtually, and providing a way for their loved ones with ADRD to practice their faith. Together, older adults with ADRD and their caregivers depend greatly on faith communities to support the spiritual needs of their members, however, many churches do not have dementia-friendly programs to support these dyads (Epps et al., 2020).

The importance of spirituality to older adults with ADRD is supported by their finding meaning in and connection with the past. Reminiscence can help individuals cope with present situations, including limitations caused by disease (Berry, 2005; Beuscher & Grando, 2009; Jolley et al., 2010; MacKinlay & Trevitt, 2010). The caregivers in this study reported that the use of familiar R/S resources, which included playing old church services and using R/S objects (i.e., rosary beads), appeared to calm their loved ones with ADRD. Positive associations between religion or spirituality and mood and behavior in ADRD have been reported in other studies (Coin et al., 2010; McGee et al., 2013). Connecting older adults with ADRD to familiar R/S sources of meaning and purpose could serve as an important resource for treating behavioral expressions such as agitation, restlessness, and anxiety. Such behaviors are common yet difficult to manage in ADRD; they increase caregiver burden and lead to earlier institutionalization (Allegri et al., 2006; Scarmeas et al., 2005). Ge et al. (2021) have reported that African American families affected by ADRD found online worship services helpful in engaging with their faith community during the pandemic, filling their need for spiritual connection with others.

The findings of this study support the need to identify and develop alternative approaches to help older adults with ADRD engage in their longstanding R/S activities and continue established relationships with religious communities. The Alter Program (Gore et al., 2022) is a faith-based program to help families with dementia access church services in the African American community and obtain resources and support. More programs for dyads of caregivers and their loved ones with dementia are needed, utilizing a range of communication technologies including streaming. Innovative solutions for older adults with ADRD with physical limitations are needed to help connect them with R/S resources.

Strengths and Limitations

This study contributes to our understanding of how the R/S practices of caregivers and their loved ones with ADRD were affected by social distancing as they attempted to cope with the U.S. COVID pandemic. The caregivers provided care in nursing facilities and in homes. Individuals with ADRD are a vulnerable population at high risk of pandemic-related health outcomes, but we were able to use a safe procedure for data collection, guided by the vulnerability-stress-model’s framework. The caregivers’ input on how R/S practices helped them and their loved ones with ADRD should be examined in further studies to inform nonpharmacologic interventions to improve mental health.

This study has the following limitations. The perspectives of older adults with ADRD were not collected, and the data reflect the perspectives of their caregivers only. The study’s qualitative design could include the possibility of recall bias, self-selection bias, or investigator bias. In addition, limiting generalizability, we used a small sample size, and the study was conducted in central Texas; religion and spirituality of course vary across populations and regions. Finally, the sample’s diversity and faith representation were limited. Future studies should include diverse religious identities representative of the population, as the R/S landscape continues to change in response to the COVID-19 pandemic (Phillips, n.d.).

Implications

Our findings indicate R/S is important for both older adults with ADRD and their caregivers and R/S practices help them cope with challenges presented by social distancing restrictions. Caregivers were able to continue their R/S practices but reported their loved ones with ADRD faced more challenges. Implications for practice and research follow.

Caregivers should be encouraged, supported, and empowered to facilitate R/S practices among older adults with ADRD. Caregivers can explore both familiar sources and innovative solutions to maintain meaning and connectedness for their loved ones with ADRD (see Table 3). The Harvard Divinity School (Maloney, 2020), for example, has published an online spiritual resource guide to help facilitate R/S practices among all ages during the pandemic. Research studies are needed to explore creative solutions to connect older adults with ADRD to meaningful R/S practices involving their caregivers.

Table 3.

Ways to Support Spirituality of Caregivers and Older Adults With ADRD.

	Caregivers	Older adults with ADRD
Individually	Resources for assistance with an older adult with ADRD to give caregivers private time to pray, meditate, and chant watch/listen to virtual service	Prayer (i.e., Hail Mary)
	Prayer and chant	Religious service
	Religious service	Worship/music: audio and/or video
	Worship/music	Objects: sacred religious texts, crucifix, prayer book, and Rosary
In community	Resources for connecting with faith-based community groups and chaplains	Prayers (i.e., Hail Mary, etc.)
	Technology assistance to connect to virtual platforms	Holy Communion a
	Holy Communion a	Religious service
	Religious service	Worship/music: audio and/or video
	Worship/music	Faith Community Group
	Faith Community and Support Group

Note. ADRD = Alzheimer’s disease and related dementia.

^aIndicates non-virtual option.

In partnership with an interfaith national coalition of faith-based leaders and organizations, Us Against Alzheimer’s (2022), along with Clergy Against Alzheimer’s and Faith United Against Alzheimer’s, is advocating for dementia-friendly faith communities to enable worship for older adults with ADRD. Churches and other faith-based organizations should explore innovative outreach opportunities to facilitate R/S practices during pandemics and similar crisis situations in the future. Possible solutions include interventions connecting caregivers and older adults with ADRD to their established R/S communities through residential visits; remoted services, prayer groups, or religious text studies (i.e., Bible study); and access to preferred music for worship through technological devices. Spiritual care experts (e.g., chaplains) need to provide additional support to accommodate older adults with ADRD and their caregivers and connect them with available R/S sources and services. Nursing homes can arrange R/S practices for older adults with ADRD regularly with assistance from local faith communities and chaplains and provide technological guidance for residents to connect with familiar, remote options for R/S practices. Additional research is needed to identify solutions involving technology and training for caregivers and to further examine health outcomes of R/S practices in older adults with ADRD.

The results of this research imply that older adults with ADRD and their caregivers would benefit from more holistic nursing care that prioritizes both physical and spiritual wellness. For example, nurses can help provide technological guidance and resources, and they can connect ADRD–caregiver dyads who find R/S important with chaplains and R/S communities to navigate options. The Alzheimer’s Association (2019) provides a list of books, journal articles, and videos to support spirituality and dementia. Nationally, nurses can conduct studies to create, test, and disseminate personalized interventions for older adults with ADRD involving meaning, purpose, and connectedness. Exploring various R/S activities across stages of ADRD is needed to better align R/S practice with individual ability. Innovative solutions are needed to address difficulties with accessibility and physical limitations. Supporting the spiritual needs of dementia–caregiver dyads can promote quality of life and provide a locus of control for ADRD caregivers, who are often overburdened.

Conclusions

Our findings indicate that R/S practices are common among people with ADRD and their caregivers. R/S practices help them cope with the stress and uncertainty prompted by social distancing during the pandemic. Caregivers were adaptable in continuing their R/S practices despite COVID restrictions, but they reported that the older adults with ADRD faced additional challenges because of their physical and cognitive limitations. There is a great need to develop creative ways to facilitate R/S practices for older adults with ADRD and to support caregivers in facilitating R/S practices for their loved ones with ADRD.

Author Biographies

Katherine Carroll Britt, PhD, MSN-IQS, RN, Jonas Scholar 2021-2023, is a recent PhD graduate of The University of Texas at Austin, School of Nursing, and incoming T32 Postdoctoral Research Fellow at University of Pennsylvania School of Nursing, NewCourtland Center for Transitions and Health, USA.

Kathy C. Richards, PhD, RN, FAAN, FAASM, is a Clinical Professor and Senior Research Scientist at The University of Texas at Austin, School of Nursing, USA.

Kavita Radhakrishnan, PhD, RN, MSEE, FAAN, is an Associate Profressor at The University of Texas at Austin, School of Nursing, USA.

Andrea Vanags-Louredo, BSA, is a medical student at Baylor College of Medicine, USA.

Eunice Park is a college student at at The University of Texas at Austin, College of Liberal Arts, USA.

Nalaka S. Gooneratne, MD, DABSM, is an Associate Professor at University of Pennsylvania, Perelman School of Medicine, USA.

Liam Fry, MD, CMD, FACP, is an Assistant Professor, Chief of Division of Geriatrics and Palliative Care at The University of Texas at Austin, Dell Medical School, USA.