Exploring Coping Strategies and Barriers in Dementia Care: A Mixed-Methods Study of African American Family Caregivers in Kentucky

Abstract

This study explores coping strategies and barriers to dementia care experienced by African American dementia caregivers in Kentucky. Utilizing a convergent mixed-method design integrating focus group and survey data on African American dementia caregivers recruited through churches in Kentucky (N = 28), we elucidate three coping strategies: love-based coping, religion-based coping, and family support. Results from survey data supported these themes, with over 90% of participants reporting that they provide care to give back to family members and for religious reasons. However, over half of the caregivers’ reported strain due to three barriers identified by focus group data: time constraints, low support, and the high cost of formal care. This exploratory study highlights the importance of intervention tactics for African American dementia caregivers that focus not only on individual and family support but also community-based outreach and support.

Keywords

dementia caregiving race and ethnicity mixed-methods stressors coping

What this paper adds

We explore barriers at the family and community level that undermine African American dementia caregiver coping processes.

We describe three individual- and family-based coping mechanisms utilized by African American dementia caregivers living in Kentucky.

We contribute to refining and improving measures of caregiver stress and coping processes that take into consideration individual, family, and community factors.

Applications of study findings

Refining assessments of caregiver strain by incorporating community barriers and support is an important next step.

Addressing barriers in access to and affordability of formal caregiver supports is critical to improve well-being for African American dementia caregivers.

Church-based dementia caregiver support groups can be an important bridge to partnering with local agencies and community resources.

By 2050, there will be nearly 12.7 million persons living with Alzheimer’s and other dementias in the United States (Alzheimer’s Association, 2021). African American older adults are about twice as likely to live with dementia as White older adults and experience greater delays in formal diagnosis (Alzheimer’s Association, 2021). Currently, while 10% of caregivers in the United States identify as Black or African American, this percentage is expected to grow with future diversity in the older adult population (Alzheimer’s Association, 2021; National Academies of Sciences, Engineering, and Medicine, 2016). Several studies have explored racial differences in the context of dementia caregiving, and most draw from the sociocultural stress and coping model (Aranda & Knight, 1999; Knight & Sayegh, 2010).

According to the sociocultural stress and coping model, stressors and resources are precursors to caregiver health and well-being. There is evidence that African American caregivers report greater caregiving intensity, more severe resource constraints, and worse physical health outcomes than other caregiver populations (Dilworth-Anderson et al., 2020; Parker & Fabius, 2020; Rote & Moon, 2018). However, African American caregivers do not consistently report higher levels of stress and burden as commonly measured across studies (Gilmore-Bykovskyi et al., 2018). Most research relies on quantitative instruments that do not include stressors and barriers beyond the individual caregiver; therefore, mixed-methods studies such as this one are needed to uncover understudied and overlooked stressors at the family and community level (Dilworth-Anderson et al., 2004).

The adverse impact of caregiver stressors can be reduced via coping mechanisms which are shaped by family and cultural values (Lindauer & Harvath, 2015; Samson et al., 2016). Common cultural reasons for caregiving that predict psychosocial health for African American caregivers include familism, honor and duty, obligation, reciprocity or giving back, and religious or spiritual beliefs (Dilworth-Anderson et al., 2004, 2005, 2020; Sayegh & Knight, 2011). The most prominent coping strategy explored in the literature on African American caregivers is social support (Badana et al., 2019; Dilworth-Anderson & Moon, 2018). In a national study, about 70% of African American caregivers report that friends or family help with care (Rote, Angel, Moon, & Markides, 2019). While perceived family support has been shown to be unrelated to African American caregiver health outcomes in quantitative studies (Rote, Angel, Moon, & Markides, 2019; Sayegh & Knight, 2011), there are many features of social support-based coping, including specific enacted and instrumental support or support outside of the family, that are understudied and that may improve caregiver coping. Cultural values may also provide a basis for emotion-focused coping, such as acceptance or positively appraising the caregiver situation (Roth et al., 2015). Little is known, however, about differences in cultural norms and forms of positive coping among African American caregivers (Roth et al., 2015).

While racial and ethnic differences have been noted in the literature, researchers have not always highlighted racial differences, leading to fewer culturally aware interventions or suggestions for next steps (Gilmore-Bykovskyi et al., 2018). Understanding sources of coping and stress within and outside of the individual caregiver are key to developing culturally competent intervention strategies for health disparity populations (National Academies of Sciences, Engineering, and Medicine, 2016). Therefore, informed by sociocultural caregiving theories, the current study utilizes a convergent mixed-method design with focus group and survey data from 28 African American dementia caregivers living in Kentucky. The purpose of the study is to explore (a) coping strategies used to adjust to caregiving demands and (b) barriers to managing caregiving demands.

Methods

Study Design

We utilized a convergent mixed-method study design in which qualitative data from focus groups and quantitative data from surveys were collected and analyzed during a similar time frame (Hsieh & Shannon, 2005).

Sample

The current study utilized convenience sampling. Through collaborative partnerships with the local Alzheimer’s Association chapter, the local Area Agency on Aging, and two predominately African American churches, participants were recruited through flyers and church announcements in 2018 and 2019. To be eligible for the study, participants had to be 18 years or older, live in Kentucky, and currently providing care for someone diagnosed with dementia or memory problems. All caregivers who showed interest in the study and met the eligibility criteria were included in the study (N = 28).

Data Collection Procedures

The research team consisted of three female PIs with PhDs and three female graduate-level research assistants who had completed a doctoral-level qualitative research course and were trained by the PIs. To create a safe and suitable environment where caregivers could describe their experiences, the three focus groups were conducted with caregivers at local churches with race-matched facilitators, including one PI and three research assistants. One PI had a previously established relationship with the churches but not with the participants. Approximately 10 participants were included in each focus group and group membership was based on availability and preference of the caregiver. Non-participants were not present at the time of data collection, with the exception of one older adult living with dementia who was brought to the focus group by their caregiver.

The focus group sessions started with opening remarks, expressions of gratitude to the participants, explanations of the goals of the study (to explore their caregiving experience and wisdom), experience with dementia caregiving, and signing of consent forms. Participants were able to ask any questions about the study. During the focus groups, each facilitator introduced major topics (described below) and took notes on the discussion. The focus groups lasted for about an hour and were audiotaped and transcribed verbatim by the research team. After each focus group, respondents were asked to complete a 10-minute survey guided by prior research on the caregiver sociocultural stress and coping models (described below). Each participant received a $50 honorarium, and the Alzheimer’s Association and Area Agency on Aging provided information on local and federal caregiving resources. This study was approved by the University of Louisville institutional review board (18.0187).

Qualitative Instrumentation

Using a semi-structured format, the focus group facilitators had a list of general questions that were formulated to explore dementia caregiver stress, coping, and resource availability (e.g., “What is the most challenging/rewarding aspect of caregiving?”). The process relied on participants elaborating on their responses and experiences and, when appropriate, facilitators probing for additional details about their responses.

Quantitative Measures

Caregiver background included gender (1 = female and 0 = male), age (recoded to 1 = 61 years or older and 0 = 60 years or younger and), education (recoded to 1 = some college or more and 0 = less than college), currently employed (1 = yes and 0 = no), marital status (1 = married and 0=not married). Care provision was assessed by years of caregiving (recoded to 0 = 2 years or less, 1 = three to 5 years, and 2 = more than 5 years), and frequency of caregiving (0 = every day, 1 = every week, and 2 = every month). Caregiver self-reported mental and physical health was coded to compare caregivers who reported excellent and good health (=1) to those with fair to poor health (=0). Care recipient health and assistance need was based on any reports of Neuropsychiatric Symptoms of Dementia (i.e., irritability, anxiety, agitation, and obsessive behavior) and any assistance needed with Activities of Daily Living (ADLs) or Instrumental Activities of Daily Living (IADLs).

The Cultural Justifications for Caregiving Scale (CJCS; Dilworth-Anderson et al., 2005) is a well-validated 10-item measure that assesses caregivers’ cultural reasons for providing care (Powers & Whitlatch, 2016). Each item was coded to compare caregivers who somewhat or strongly agreed (= 1) and somewhat or strongly disagreed (= 0) with statements related to reasons for providing care (see Table 2 for list of all items in scale). Challenging aspects of care was measured by three items with dichotomized responses (1 = yes, 0 = no) asking whether caregiving (1) caused a change in daily schedule, (2) put a strain on marriage or other family relationships, and (3) reduced time spent on hobbies or activities (Pearlin et al., 1990). Caregivers were also asked whether they had hired a paid helper in the past year for their family member living with dementia (1 = yes, 0 = no).

Analytic Strategy

The qualitative analysis used a conceptual content analysis approach (Fetters et al., 2013) and began with the research team debriefing after each focus group to discuss themes and topics from the data. Initial coding of focus group transcripts was conducted by three trained graduate-level research assistants and one PI. This was followed by discussion and identification of emergent patterns found within the data that characterized positive and negative aspects of care.

The emergent patterns were identified through participant quotes, and the analysis included an iterative process where the researchers moved back and forth between the focus group data and existing definitions of sociocultural caregiving stress and coping to establish the final codebook (Hsieh & Shannon, 2005). Criteria for rigor were employed to ensure credibility and confidence in our qualitative findings. The research team enhanced credibility through peer debriefing, consensus-building around themes, and separate data coding by the research team members, who met regularly to discuss and identify themes (Lincoln & Guba, 1985).

Analysis of survey data is presented in Tables 1 and 2 and relied on basic descriptive statistics techniques utilizing SPSS 27. Analysis of qualitative data was completed without software and revealed prominent themes related to both fulfilling and challenging aspects of caregiving. The qualitative and quantitative data confirmed one another. The final analysis relied on a weaving approach, integrating survey data (Table 2) and focus group data theme-by-theme (Fetters et al., 2013).

Table 1.

Selected Characteristics of African American Dementia Caregivers and Care Recipients.

	%	f
Female (vs. Male)	89	25
61 years or older (vs. ≤ 60 years old)	61	17
Education (vs. less than college)
Some college or more	82	23
Employment status
Not employed	54	15
Currently employed	39	11
Missing data	7	2
Currently married (vs. Not Married)	46	13
Years of caregiving
Two or fewer	21	6
Three to five	32	9
Five or more	32	9
Missing data	14	4
Care frequency
Every day	7	2
Every week	18	5
Every month	50	14
Missing data	25	7
Caregiver self-reported health (vs. Fair/Poor)
Excellent/good mental health	89	25
Excellent/good physical health	82	23
CR neuropsychiatric symptoms of dementia
Irritability	83	23
Anxiety	79	22
Agitation	75	21
Obsessive behavior	54	15
CR ADL/IADL assistance needed
Preparing meals	85	24
Shopping	82	23
Walking upstairs	78	22
Walking a half mile	78	22
Heavy housework	74	21
Managing money	74	21
Walking in the house	67	19
Light housework	67	19
Using telephone	59	17
Bathing	59	17
Getting out of bed	50	14
Feeding	46	13
Using toilet	46	13

Note. CR = care recipient, ADL = activities of daily living, IADL = instrumental activities of daily living.

Table 2.

Cultural Justifications for Caregiving, Caregiving Stressors, and Paid Help.

I give care because. . .^a	% Agree
I am giving back what has been given to me	96
I feel as though I am being useful and making a family contribution	96
I was taught by my parents to take care of elderly dependent family members	92
Of my religious and spiritual beliefs^b	91
I was raised to believe care should be provided in the family^c	91
It is important to set an example for the children in the family	83
It is my duty to provide care to elderly dependent family members	79
It is what my people have always done	75
It strengthens the bond between them and me^c	74
My family expects me to provide care^c	74
In the last year, providing care for your family member has. . .^d
Put a strain on marriage or other relationships	60
Changed daily schedules (going to work late, leaving early, or taking time off)	60
Reduced time spent on hobbies or other activities	80
In the last year, used a paid helper^d	3

Note. ^an = 24, ^bn = 22, ^cn = 23, ^dn = 25.

Results

African American Dementia Caregiver Sample

Table 1 provides an overview of the sample characteristics (N = 28). Most caregivers were female (89%), over 60 years old (61%), and had an educational level of some college or more (82%). Less than half of the caregivers were currently employed in the formal labor force (39%) or married (46%). About two-thirds of caregivers had provided care for at least 3 years, and a quarter of caregivers provided care at least every week. Most caregivers reported good to excellent (vs. fair to poor) mental health (89%) and physical health (82%). About 80% of caregivers reported that their family members living with dementia displayed symptoms of irritability and anxiety. Caregivers also reported high levels of need for assistance among their care recipients: about 80% of care recipients needed help with preparing meals, shopping, and mobility (i.e., walking upstairs, walking half a mile), and about 50% needed help with basic tasks such as bathing, feeding, and toileting. Table 2 provides an overview of (1) cultural justifications for caregiving, (2) caregiving challenges, and (3) formal service use, all of which are embedded in the discussion of the qualitative results.

Coping Strategies

The focus group data revealed three coping strategies, including love-focused coping, religion-based coping, and family support. These factors provided the context for meaning and purpose in the dementia caregiving career as well as strengthening caregiver resolve in difficult times.

Love-Focused Coping: “Love Compels You.”

Love was a prominent theme throughout the focus groups, and it was presented in several contexts, especially motivation for providing and continuing to provide care. Several types of love (e.g., filial, romantic, and family love) were discussed. Each caregiver discussed the type of love that motivated them. For example, a caregiver who recently transitioned to her role of providing care for her mother living with dementia reflected on this motivator, saying:

Well, love compels you to do…My mom and I are real close, like I said. It’s only been three months. It hasn’t even been a year. But uh, it’s just the love that I have for her, that I need to do this, and I have no problem with doing it.

Caregivers in this focus group agreed with the statement through nods and sounds of affirmation and noting that without love for their care recipient, they would not be willing to take on the caregiving role. Love also kept caregivers motivated throughout the care trajectory. As one long-term spousal caregiver explained:

I married him 46 years ago for better or for worse. You know, and uh, it’s love that compels me to do it, because there are some days where I’m like, ‘Okay, this is it. Where is my hat? I quit. I’m out of here.’ But it’s the love for him.

Love also facilitated caregivers’ sense of meaning and purpose and complemented attachment to cultural values of filial reciprocity or giving back to others. In the quantitative data (Table 2), the most frequently reported reasons for providing care were “I am giving back what was given to me” and “I feel as though I am being useful and making a family contribution,” with 96% of caregivers agreeing with these statements. One caregiver explained the connection between the cultural value of reciprocity and love when referencing providing care for her mother:

For me, the best part was realizing what it took me to be where I am. Whether, you know, you’re talking about dementia or just being a newborn coming into the world, it takes time, it takes patience or whatever. So, everything that I experienced, you know, you’re motivated—like everyone keeps saying, love—you’re motivated to give that back and more.

In the focus groups, individual caregivers also mentioned love and joy when they discussed care-recipients’ moments of lucidity, sharing enjoyable activities with their family member living with dementia, and knowing that their care recipient is getting the care they need. Overall, love provided the basis for positive emotion-focused coping by reappraising the stress of caregiving through a positive lens and attaching personal meaning to the experience.

Religion-Based Coping: “God. . .Keeps Everything Moving.”

About 91% of caregivers agreed that religious and spiritual beliefs are a motivator for providing care (see Table 2). In all focus groups, religion or spirituality was discussed as not only a reason for providing care but also a primary means of coping throughout the care trajectory. Caregivers discussed actively giving up control to God (e.g., “I accept what God has placed on me. I’m a helper and a caregiver”) as well as seeking spiritual support, meaning, and purpose. For example, one caregiver explained:

Faith is the connector, the glue that keeps everything going because when you are having a good day of caregiving, you rejoice. And it pushes you into Him, saying ‘Thank you!’ And when you have a hard day, it pushes you to Him saying ‘Thank you and help me!’ So, it keeps everything moving and it keeps everything where it needs to be, which is in His hands, you know, and then everything else stems from there.

By actively giving up control to and seeking assurance from God, caregivers were able to reappraise and define their role. Caregivers agreed God had provided them with the capacity to meet these demands and to keep going. As one caregiver stated:

I am a caregiver to my husband. He was diagnosed in March of 2014 with early-onset Alzheimer’s at age 64. So, uh, it’s a journey. It’s a learning process. But God has taught me so much patience, I didn’t use to be this patient person that I am now.

Similarly, one participant noted that caregiving is “quite an experience, but the number one thing or positive thing is that I got a closer walk with God and He taught me patience, like, [I] didn’t even know I had. Yeah, so that was the blessing in it.” The patience and understanding required by dementia caregiving increased caregivers’ closeness to God.

Prayer was also discussed throughout the focus groups. For example, when one caregiver succinctly stated, “Prayer keeps us going,” the others in the focus group nodded and made sounds of affirmation. One caregiver noted that early in the caregiving journey, when her family member was newly diagnosed with dementia, she prayed for her mother’s well-being: “God works everything out. He knew that it was time for me drop everything and come here, but while I was there I would always pray to God, ‘Please give my mom calm and peace,’ and He did.” Prayer also provided caregivers comfort in challenging times, such as facing the time constraints of caregiving (“I’m up at 5 o’clock a.m. praying, saying ‘Lord, let this be a better day today’”) and the difficulty in providing assistance with care tasks (“And some days, she hasn’t done it [bathed] herself. So, it just comes and goes. I pray, and it’s in God’s hands”). Overall, caregivers affirmed the important roles of prayer and their relationship with God in instilling meaning into the caregiving role, providing support, and increasing their patience in managing day-to-day stress.

Family Support: “We All Take Turns.”

Some caregivers described the important role of family members’ working together to lighten the load and help overcoming challenges inherent in dementia care. For example, a caregiver to her husband explained her experience asking family for help:

Over the Thanksgiving holidays, I asked my one grandson if he would consider moving here, uh, to just be of help to me…. He moved here, but he immediately got a job. But his off days are Wednesdays and Fridays, so he’s really been a tremendous help. He takes him to get a haircut. He shaves him. You know, he mows the yard now, and all of that has taken a load off of me.

Other caregivers described creating a routine of shared care. One caregiver explained, “My sister lives with my Mom. We work with each other to make sure she has all the stuff she needs, make sure she gets to her appointments and stuff like that.” Another caregiver who works with her daughters, granddaughters, and sisters, explained, “Everybody has a day, and they come over during the day; a couple of them will spend the night.” She added:

Everyone chipped in to help. And that has been—she’s not had to leave her home. We all kind of rotate through to do what we need to do. And I think that’s part of it. I’m grateful she can still be happy in her home and she doesn’t have to go to someplace she doesn’t want to go.

For caregivers who had family members available and willing to help, sharing responsibilities allowed caregivers a reprieve and provided relief. This also created a sense of family solidarity and support. Dementia caregivers without help described the lack of family support as a major challenge.

Barriers to Caregiving

A large portion of the focus group data focused on the challenges that caregivers face. These challenges can be categorized into three levels: individual, family, and community. Individual-level challenges primarily concerned time constraints. Caregivers who did not have family available and willing to help discussed a need for more support. Community-level barriers included lack of access to affordable formal care services.

Time Constraints: “I Don’t Have Time for Me.”

While 60% of caregivers reported changing their daily activities to accommodate caregiving demands, 80% reported that caregiving reduced their time spent on hobbies or other activities (Table 2). The focus group data illustrated this last point. Several caregivers reported that caregiving can become an all-consuming identity, leaving little time to devote to themselves and other obligations: “I get up and go to work, get off from work, go to take care of my mother. By the time I get through taking care of my mother, it’s time for me to start [my day] all over again. So, I don’t have time for me.” Caregivers often had work obligations and also needed to care for children, which only increased the difficulty of caring for themselves:

Time. You know, outside of trying to be your own person and have a life, and then you have all these other hats you have to wear. It’s hard because, like, I went to working four days a week initially to help take care of my granddaughter and then it ends up being appointment days for my mom.

Caregivers employed in the formal labor force (about 40% of our sample) discussed the burden of responsibilities in paid and unpaid work. Even caregivers who were not formally employed described feeling as though their own life was on pause:

It is rough, especially when you are doing it by yourself, you know, 24/7. And then not only are you struggling with that, because you want to take care of that person, but also, at least for me, you start thinking about my life. I had a career, you know. And I’ve never been married, and I still want to be married, and so if I have no social life I am sure not going to meet anyone.

The time required to provide dementia care created challenges for family caregivers in terms of their ability to work, engage in other family demands, and spend time on social activities and their own pursuits.

Lack of Family Support: “I’m the Only One.”

Family-level barriers included lack of proximity as well as unwillingness to help. When asked about the challenges of providing care, one caregiver responded, “For me, it’s been being the only one. Yes, the other two live out of town, so I’m the only one.” Another caregiver stated that family size, for example, the number of children a care recipient might have, may make no difference: “I was number nine, and I was the only one that would step up and. . .live with her to take care of her.” Frequently, the care falls on women in the family, especially adult daughters. One caregiver described how her mother did not want additional help from others in the family:

She doesn’t want my brother to help her in any kind of way. Not that he helps that much anyway. You know, but I’m like, ‘I have health issues and I can’t pack cat litter in four or give containers. Let him take you to the grocery.’ [her mother says] ‘No.’

Attaining agreement among family members about the need for care and how to provide it was also a challenge, especially early in the process. One participant recounted her brother not believing the dementia diagnosis until he saw the symptoms for himself. For others, family members becoming overburdened resulted in caregiver turnover. As one caregiver explained, “We went through multiple stages. First, she started out with my brother, and it started wreaking havoc on his marriage. So, then she came and stayed with me while I was still working full-time, and I realized that I just couldn’t do it.” This finding is supported by the survey data: 60% of caregivers reported that providing care has put a strain on their marriages or other relationships. Caregivers without family support reported feeling alone and explained that they would like more information on how to encourage family members to help.

Prohibitive Cost of Formal Care: “It’s Just Very Expensive.”

Most African American dementia caregivers reported a need for help outside of the family, but only 3% had utilized formal paid services. Some caregivers discussed not knowing what services were available or not being able to find services in their area; however, most caregivers reported that the cost of these services as a major barrier. When asked about what type of services they would like to use, one caregiver said, “Day care. You know, just sometimes to get a break. To get to our jobs. And there is no service, really, especially if you don’t have the money, and insurance don’t cover it.” This led to a discussion of participants’ communities’ lack of affordable, appropriate formal care for their family members living with dementia. One caregiver who had utilized services explained, “I tried all the services, the home services to come and bathe her, to come and feed her, you know, the personal hygiene. I tried all of that, and everything about it is expensive. It’s just very expensive, you know.”

Many caregivers discussed the need for respite care and trustworthy services. One caregiver said she needed “someone that can come to the house for a few hours any time I want them to and be able to trust that person and not have to pay out of pocket.”

Both caregivers and their recipients struggled with the idea of trusting a stranger even when outside services were available. The discussion of service use also highlighted how multiple barriers can interact, i.e., time constraints due to caregiving prevented researching appropriate and affordable formal care options. One focus group also discussed a need for better marketing of formal care resources for their community.

Discussion and Implications

This study used mixed methods to explore positive and negative experiences among African American dementia caregivers in Kentucky that may be overlooked by common quantitative measurements and to examine the implications of these findings for service providers. Coping mechanisms identified by participants were both individual (private emotion or religious faith) and familial (help from others with instrumental care tasks). Three levels of barriers to caregiving were identified: individual (time constraints), family (lack of support), and community (lack of affordably option for formal care). The insights from the current study support intervention and outreach strategies that move beyond individual adaptation by addressing larger structures (families, communities) in which African American dementia caregivers provide care.

These findings complement previous research on cultural reasons for care by highlighting the importance of reciprocity (Dilworth-Anderson et al., 2005; Greenwood & Smith, 2019). Discussions of reciprocity led participants to describe love (in many forms) as a primary motivator for providing care. Dementia caregivers stated that love for their care recipient helped them cope with the inevitable difficulties. Thus, caregivers’ abilities to find meaning and fulfillment in the task may be linked to active coping and better outcomes for caregivers (Dilworth-Anderson et al., 2004; Roth et al., 2015). Therefore, strengths-based strategies and culturally competent frameworks that focus on love and giving back should be considered in approaching and supporting African American dementia caregivers.

In accord with previous studies, the role of religious faith in coping was another prominent topic in the focus group discussions (Heo & Koeske, 2013; Sun et al., 2010). However, rather than support from a church community, participants in this study described prayer and feeling connected to God as helping them find strength and overcome challenges. These personal, positive religious coping processes have been shown to reduce caregiver burden in general (Fider et al., 2019; Rathier et al., 2015), and may be especially efficacious when combined with formal support from church communities. Caregivers in the current study discussed the need for group support from their church members. There is evidence that African American caregivers value church-based support over professional counseling due to shared experiences with their “church family” (Desin et al., 2016). These support groups could be a bridge to partnering with local agencies and community resources, which may create more trust and engagement in services.

Both survey and focus group data revealed two groups of caregivers: those with family support and those without. Our findings support previous research recommending that customized care plans for dementia caregivers should focus on ways to mobilize family support if available and, if unavailable, engaging formal care (Rote, Angel, & Hinton, 2019). However, caregivers identified the lack of affordable, appropriate services as a major challenge. In-home care services, adult day care centers, and other respite services are needed. Creating a single source for comprehensive information and services within trusted community settings may reduce barriers experienced by African American dementia caregivers when trying to find help and thereby promote their use of formal services (Dilworth-Anderson & Moon, 2018).

The current study has limitations. We were not able to utilize member checking after the focus groups to affirm our results, data collection was based on participant availability rather than data saturation, and care-recipients’ demographic information (e.g., severity of dementia, age, residential arrangement) was not obtained, which may influence caregivers’ coping. Furthermore, our small, non-probability sample was recruited from African American churches in one state (Kentucky), which limits generalizability to non-religious African American caregivers and to caregivers outside of Kentucky. Additionally, the sample included mostly highly educated women caregivers. Dilworth-Anderson and colleagues (2005) have established that African American caregivers with higher education levels are less likely to endorse cultural reasons for providing care. Still, the findings presented describe underlying processes that facilitate or impede caregiving, many of which are likely generalizable across settings.

Overall, the current study expands the state of the science on African American dementia caregivers by providing additional context for measuring stress (such as burdens arising from time constraints and need for services) and for assessing coping processes (such as cultural values related to love and reciprocity). This additional context should be used in larger studies of African American dementia caregivers and in studies of other groups (e.g., Latinx and American Indian/Alaskan Native) to better understand whether those populations report similar cultural justifications for care and comparable experiences with positive and negative aspects of caregiving. The COVID-19 pandemic has also likely aggravated the existing lack of social support for caregivers, amplifying their stress and shifting their coping processes. Community-based outreach and assistance agencies such as local governments and nonprofits should focus on making technology available via religious communities or other trusted institutions that can make it easier for African American dementia caregivers to locate resources and support. Providers must find inclusive, accessible ways to increase awareness and availability of services that reflect individual, family, and community needs.

Supplemental Material

sj-pdf-1-jag-10.1177_07334648221093618 – Supplemental Material for Exploring Coping Strategies and Barriers in Dementia Care: A Mixed-Methods Study of African American Family Caregivers in Kentucky

Supplemental Material, sj-pdf-1-jag-10.1177_07334648221093618 for Exploring Coping Strategies and Barriers in Dementia Care: A Mixed-Methods Study of African American Family Caregivers in Kentucky by Sunshine M. Rote, Heehyul E. Moon, Allison M. Kacmar and Sharon Moore in Journal of Applied Gerontology

Footnotes

Acknowledgements

We thank Elana Nance, Angela Lucear, and the dementia caregivers who participated in the study for their collaboration and assistance and Hallie Decker, Kelsey Burton, and Chelsea Burton for their assistance with data collection, transcription, and interpretation.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Support for this study was provided by pilot grants from the Kent School of Social Work at the University of Louisville and the Korean American Social Work Educator Association.

IRB Protocol/Human Subjects Approval Numbers

This study was approved by the University of Louisville Institutional Review Board (18.0187).

ORCID iDs

Sunshine M. Rote

Sharon Moore

Supplemental Material

Supplemental material for this article is available online.

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