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. 2023 Jul 3:07334648231182242. doi: 10.1177/07334648231182242

Caregiving During the COVID-19 Pandemic: Factors Associated With Feelings of Caregiver Preparedness

Rachael L Turner 1, Celinda Reese-Melancon 1,✉, Erin E Harrington 2, Micaela Andreo 3
PMCID: PMC10333559  PMID: 37395127

Abstract

Examination of caregiver preparedness for the COVID-19 pandemic can inform efforts to support caregivers in future times of global crisis. Informal caregivers of adults with dementia or severe disabilities (n = 72, M age = 62.82 years, 90.28% female) were recruited through Adult Day Centers across the United States. Caregivers responding to an online survey regarding their experiences and preparedness reported an increase in burden, stress, and time spent caregiving since the onset of the pandemic. Caregivers reported feeling prepared for typical caregiving responsibilities but felt less prepared for someone else to assume the role of primary caregiver. Multiple regression modeling indicated that resilience accounted for significant variance in primary caregiver preparedness, over and above burden, but only caregiver age accounted for significant variability in a component representing feeling prepared to delegate caregiving to another person. These findings have implications for research and applied efforts to promote caregiver well-being and preparedness.

Keywords: caregivers, preparedness, resilience, burden, COVID-19

What this paper adds

  • • Thiswork adds to the existing literature by providing a snapshot of the caregiver experience in the early months of the COVID-19 pandemic.

  • • Caregivers generally felt prepared to provide care themselves, but many did not feel prepared for someone else to take over caregiving if needed.

  • • Resilience was significantly associated with primary caregiver feelings of preparedness, and caregiver age was significantly associated with feeling prepared to delegate caregiving responsibilities.

Applications of study findings

  • • Interventions are needed to reduce caregiver stress and burden during times of crisis when formal support may be unavailable.

  • • Caregivers should be encouraged to identify individuals in their support networks who can assume caregiving responsibilities.

  • • Efforts targeting vulnerable caregivers who may be less prepared and resilient would be especially helpful when global health crises occur.

Introduction

In the United States, the shutdowns and reduced access to other people and services that accompanied the COVID-19 pandemic occurred suddenly. For researchers studying aging, it is important to understand whether informal caregivers of adults with dementia or severe disabilities felt prepared to face the challenges of this unique time. Further, a central challenge for those who provide health and social services to adults with dementia or severe disabilities is to understand the demands on those providing informal care on a day-to-day basis and to identify factors that may influence a caregiver’s ability to be prepared. The aim of this work is to provide a snapshot of the caregiver experience in the early months of the COVID-19 pandemic in the US and to better understand how feelings of preparedness were related to caregiver demographics, burden, and resilience. Little work has examined caregiver preparedness for the pandemic (Resnick et al., 2021), but addressing this gap in the literature will provide insight into what is needed during future global health crises, disasters, and emergencies that impact caregivers and their families.

Caregiver Preparedness

Caregiver preparedness refers to how equipped caregivers believe they are for the caregiving role (Archbold et al., 1992). While the present study focused on caregivers’ self-reported preparedness in the early months of the COVID-19 pandemic, prior work has often targeted preparedness in health contexts. For example, among new caregivers caring for older adults recently discharged from the hospital, feelings of preparedness measured six weeks into caregiving predicted caregiver strain nine months later (Archbold et al., 1990). Based on these findings, Archbold et al. (1992) recommended measuring preparedness to identify caregivers who would likely have higher caregiver strain and need more assistance. Related subsequent work has demonstrated that among caregivers of persons with cancer, preparedness serves as a protective factor against negative mood and caregiver strain (Schumacher et al., 2007, 2008).

Caregiver preparedness is particularly relevant during times of disaster when routines are disrupted, and caregivers must make critical decisions. The COVID-19 pandemic shares similarities with natural disasters, as caregivers faced comparable challenges navigating the changes associated with this health disaster. In fact, older adults reported approaching the pandemic with strategies typically used during natural disasters (Hanks et al., 2021). Whereas natural disasters may include sheltering-in-place or evacuation, the COVID-19 pandemic largely required sheltering-in-place for an extended period of time, which was especially critical for older caregivers and care recipients who have a higher risk of experiencing complications associated with contracting COVID-19 (Centers for Disease Control and Prevention, 2020). Similar to natural disasters, the pandemic required being prepared by having supplies on hand. Prior to the pandemic, Mace and Doyle (2017) found that while just over half of caregivers had medical supplies and medication stockpiled, many others did not. Financial constraints, healthcare access, and supply chain disruptions may make it difficult for caregivers to be prepared in terms of medication and medical supplies, potentially impacting care for their loved ones. While caregivers need a high level of support and respite during times of disaster (Christensen & Castaneda, 2014; O’Sullivan, 2012), support and respite were difficult for caregivers to access during the pandemic (Lightfoot & Moone, 2020). Those who were able to find formal support services, such as Adult Day Centers (ADC) or in-home healthcare, potentially increased the risk of infection by exposing their loved ones to more people. Even access to informal support services, such as family or friends, may have been limited due to social distancing. Without these support services, caregiving responsibilities increased along with caregiver burden (Rising et al., 2022). Examining caregiving during the pandemic can provide insight into the challenges caregivers experienced and inform approaches to better support caregivers during future disasters or health crises.

Psychological Correlates of Preparedness

Identification of circumstances that protect against negative outcomes among caregivers is an important challenge for gerontological research. Resilience, which refers to the ability to positively adapt to significant threats and to overcome difficult challenges (Luthar et al., 2000), is a potentially protective factor that may play a role in preparedness. Resilience helps caregivers cope with stress associated with caregiving and ultimately experience less strain (Dreer et al., 2019). The use of informal social networks, spiritual support, and formal healthcare support systems is related to higher resilience among caregivers (O’Sullivan, 2009; Wilks et al., 2021), but many of these support systems may not have been accessible during the pandemic. Recent work suggests that resilience is especially relevant to natural disaster preparedness (Pickering et al., 2021) and reducing burden during the COVID-19 pandemic (Altieri & Santangelo, 2021). However, work is needed to establish whether there is a relationship between resilience and caregiver preparedness during the COVID-19 pandemic.

Within the context of caregiver preparedness, it is also important to identify the circumstances that may hinder a caregiver’s ability to prepare for disaster and thus leave them unable to fully care for their loved ones, such as caregiver burden. The impact of the pandemic on caregiver burden is especially concerning due to the diminished availability of external support, such as ADCs, secondary familial caregivers, and paid caregivers that would normally assist in daily care so caregivers could go to work, benefit from respite, or complete tasks necessary to prepare for an extended period at home. Additionally, caregivers reported greater burden during the pandemic (Maggio et al., 2021), emphasizing the need to understand how burden relates to caregiver preparedness. Identifying factors that contribute to preparedness can inform future social policy and community initiatives to ensure caregivers have adequate supplies and support during times of crisis.

The Present Study

The present study addressed caregivers’ perceptions of the impact the COVID-19 pandemic had on their lives, the extent to which they felt prepared to face the challenges of caregiving during the pandemic, and factors associated with caregiver preparedness at the start of this global health crisis. An initial aim was to better understand how caregivers thought the early months of the pandemic impacted their lives as caregivers. To this aim, we asked caregivers of adults with dementia or severe disabilities how their stress, caregiver burden, and time spent caregiving had changed since the onset of the pandemic. We anticipated that most caregivers would experience increases in all of these areas based on literature documenting an increase in depressive symptoms (Altieri & Santangelo, 2021; Savela et al., 2022), stress (Maggio et al., 2021; Sheth et al., 2021), and burden (Maggio et al., 2021; Rising et al., 2022). The present study extends this literature by identifying how these perceptions were related to feelings of preparedness. The preparedness scale in the present study focused on caregiving during the COVID-19 pandemic (e.g., ability to social distance, availability of medical supplies). Thus, the second aim was to specifically gauge pandemic-related preparedness, an area that has not previously attracted attention and has relevance to caregiving during future health crises. We expected caregivers to generally feel prepared because they were not new to the role, but we wanted to understand how prepared they felt to face the specific challenges the shutdowns created and whether they felt prepared for someone else to assume care of their loved one should the caregiver become ill or need to isolate. Our final aim was to identify psychological factors associated with feelings of caregiver preparedness. Based on past work, we examined resilience (Lester et al., 2020) and burden (Archbold et al., 1990; Fujinami et al., 2015) as correlates of preparedness with the expectation that greater resilience and lower burden would be associated with feelings of caregiver preparedness.

Method

Participants

To assist in the identification of informal caregivers, over 400 ADCs across the continental United States were contacted via phone or email using information from public listings. Of these, 40 centers responded, and directors from 28 centers agreed to send out information and a Qualtrics survey link to caregivers they believed met inclusion criteria (i.e., English speaking, caregiver to an individual who utilized an ADC prior to the COVID-19 pandemic). The use of ADCs enabled us to connect with primary caregivers of adults with dementia or disabilities severe enough to require substantial care during the course of a typical day. Participants gave electronic consent to participate as part of a larger online study of caregiving during the COVID-19 pandemic and then answered a question asking whether they considered themselves to be the primary caregiver of an adult. Those who responded no were directed away from the survey. Participants were invited to enter a drawing for gift cards as compensation for their participation.

A total of 83 caregivers completed the survey in May, June, or July of 2020. At the time participants responded, it had been two to four months since the World Health Organization declared the pandemic and shutdowns in the United States began. Ten participants were excluded because they did not live with their care recipient, as the responsibility of being prepared for the pandemic would likely fall to those living with the care recipient. One additional participant was removed due to response invariance (i.e., marked the same response across all measures). Thus, the final sample included 72 caregivers.

Materials and Procedure

Participants first provided demographic information for themselves and the person for whom they provided care, including their relationship to the care recipient, diagnosis of the care recipient, and amount of time spent caregiving. Next, they completed a combination of existing measures and items newly developed for this study that allowed them to provide information regarding their caregiving experience since the onset of the pandemic.

Caregiver Experience during the COVID-19 Pandemic

To assess perceptions of disruption from the pandemic, we created three individual items asking participants to rate the extent to which burden, stress, and time spent caregiving had changed since the start of the COVID-19 pandemic. Participants rated from 1 (decreased a lot) to 5 (increased a lot) on a Likert-type scale how much each dimension had changed.

Caregiver Preparedness

The COVID-19 Caregiver Preparedness Scale, created for this study, asked participants to rate how prepared they felt to care for their loved one within the context of the pandemic (e.g., “How prepared do you feel you are to keep your loved one, whom you normally provide care for, healthy?”) on a scale from 1 (not at all prepared) to 5 (extremely prepared). A principal component analysis was conducted on the 6-item measure to examine the structure of the scale (Table 1). The Kaiser-Meyer-Olkin measure of sampling adequacy was .73, which is above the recommended value of .60. Bartlett’s test of sphericity was significant (x 2 (15) = 119.51, p < .001). Additionally, the communalities across all items were greater than .30, indicating that each item shared common variance with the other items. Examination of the eigenvalues revealed that two significant components emerged explaining approximately 47% and 18% of the variance. A varimax rotation of the two-factor structure indicated the factors explained approximately 44% and 21% of the variance, respectively. The five items loading onto the first component appeared to relate to primary caregiver preparedness in that they described the primary caregivers’ preparedness to perform essential caregiving in the early months of the pandemic. The single remaining item loaded on a separate component and related to feeling prepared for a secondary caregiver to take over should the need arise. Based on the observed findings, the five primary caregiver preparedness items were averaged to create a Primary Caregiver Preparedness composite score and the remaining Prepared to Delegate Caregiving item was considered separately. Higher scores were indicative of greater feelings of preparedness.

Table 1.

Loadings and Mean Ratings for the COVID-19 Caregiver Preparedness Scale.

Loadings M(SD) Range
1 2
Component 1: Primary Caregiver preparedness
1. How prepared do you feel you are with food and similar supplies? .746 .348 4.54(.63) 3–5
2. How prepared do you feel you are on medications and medical supplies for the person you provide care for? .750 .142 4.72(.54) 3–5
3. How prepared do you feel you are to care for the person you provide care for? .782 −0.300 4.18(.85) 2–5
4. How prepared do you feel you are to keep your loved one, whom you normally provide care for, healthy? .824 −0.141 4.33(.71) 3–5
5. How prepared do you feel you are to ensure your loved one, whom you normally provide care for, practices social distancing? .602 −0.281 4.21(1.02) 2–5
Component 2: Prepared to delegate caregiving
6. How prepared do you feel you are for someone else to take over caring responsibilities for your loved one if needed? .179 .860 3.21(1.29) 1–5
Variance % 46.75 17.82
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Caregiver Burden

Participants completed the 12-item Zarit Burden Interview (ZBI), to assess the amount of burden experienced by caregivers specifically due to caregiving (Bedard et al., 2001). Participants rated 12 items on a 5-point Likert-type scale ranging from 0 (never) to 4 (nearly always) to indicate how often they experienced feelings of burden (e.g., “Do you feel that because of the time you spend with your loved one that you don’t have enough time for yourself?”).

Resilience

Participants completed the 25-item Connor-Davidson Resilience Scale (CD-RISC; Connor & Davidson, 2003) and rated how true they believed statements related to resilience were for them (e.g., “Coping with stress strengthens me”) on a 5-point Likert-type scale ranging from 0 (not at all true) to 4 (true nearly all of the time). Item 4 (“Can deal with whatever comes”) was omitted due to experimenter error.

Data Analysis

Analyses were conducted using IBM/SPSS Statistics 27.0. For analytic purposes, we set the statistical significance threshold at α = .05. Mean calculations and Spearman’s Rho correlation analyses were used to describe caregiver experiences, caregiver preparedness, and relationships among study variables. Multiple hierarchical regression analyses were employed with covariates (education, gender, age) and variables of interest (caregiver burden, resilience) entered into separate blocks to discern their relative contributions to caregiver preparedness. Education was entered into the model as a binary variable indicating whether participants had a college degree or not. Sum scores on the ZBI and average scores on the CD-RISC (due to the missing item) were included in the model to represent caregiver burden and resilience, respectively. A single participant failed to answer one question on the CD-RISC, and thus this missing value was replaced with the participants’ mean response on the measure.

Results

Characteristics of the Sample

The sample consisted of 72 participants ranging in age from 32 to 92 years (M age = 62.82 years, SD age = 12.42) and included 65 females. Most participants identified as White/Caucasian (77.78%), were married (66.67%), and were the adult child (44.44%) or spouse (31.94%) of the care recipient. The majority were caring for someone with a diagnosis of Alzheimer’s disease or other dementia (70.83%). Most frequently, participants reported either being retired (43.06%) or employed full time (36.11%). The amount of time spent on caregiving tasks ranged from 2 to 24 hours per day with an average of 8.96 hours and did not differ by whether the care recipient had a dementia diagnosis or not, t(69) = 1.29, p = .201. Additional demographic information appears in Table 2.

Table 2.

Caregiver Demographics.

N = 72
Caregiver age (in years), M (SD) 62.82 (12.42)
Care recipient age (in years), M (SD) 73.86 (21.23)
Caregiver gender n (%)
 Male 7 (9.72)
 Female 65 (90.28)
Care recipient gender n (%)
 Male 35 (48.61)
 Female 37 (51.39)
Ethnicity n (%)
 White 56 (77.78)
 Hispanic 5 (6.94)
 African American 3 (4.17)
 Native American 2 (2.78)
 Asian 1 (1.39)
 Multiple Ethnicities 4 (5.56)
 Did not indicate 1 (1.39)
Care recipient diagnosis n (%)
 Alzheimer’s/Dementia 51 (70.83)
 Developmental disability 14 (19.44)
 Physical disability 11 (15.28)
 Other 10 (13.89)
Relationship to care recipient n (%)
 Spouse 23 (31.94)
 Adult child 32 (44.44)
 Other family member 12 (16.67)
 Friend 4 (5.56)
 Other 1 (1.39)
Marital status n (%)
 Never married 8 (11.11)
 Married 48 (66.67)
 Divorced/Separated 11 (15.28)
 Widowed/Not remarried 5 (6.94)
Self-reported caregiver health n (%)
 Excellent 13 (18.06)
 Good 45 (62.50)
 Fair 13 (18.06)
 Poor 1 (1.39)
Income n (%)
 Less than $20,000 7 (9.72)
 $20,000-$40,000 9 (12.50)
 $40,000-$60,000 5 (6.94)
 $60,000-$80,000 13 (18.06)
 $80,000-$100,000 13 (18.06)
 $100,000-$200,000 17 (23.61)
 Over $200,000 2 (2.78)
 Did not indicate 6 (8.33)
State n (%)
 Arizona 2 (2.78)
 California 12 (16.67)
 Colorado 5 (6.94)
 Florida 5 (6.94)
 Massachusetts 1 (1.39)
 Missouri 1 (1.39)
 New Hampshire 9 (12.50)
 Oklahoma 12 (16.67)
 Pennsylvania 11 (15.28)
 Texas 4 (5.56)
 Virginia 5 (6.94)
 Wisconsin 5 (6.94)
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Note: Diagnoses exceed 100% due to some care recipients having multiple diagnoses.

Caregiver Experience during the COVID-19 Pandemic

One aim of the present study was to examine perceived impact of the pandemic on the caregiving experience. Participants responded to specific items regarding changes to their feelings of burden, stress, and time spent caregiving since the onset of the pandemic (Table 3). A majority of participants reported that caregiver burden had increased either a little (50%) or a lot (30.6%). Similarly, participants’ reports of stress were that it increased either a little (44.4%) or a lot (30.6%). Most participants reported that the amount of time they spent on caregiving tasks also increased a little (27.8%) or a lot (55.6%). In terms of impact of the disease itself, only seven participants reported they or a close loved one had been directly affected by a COVID-19 diagnosis.

Table 3.

Caregiver Perceptions of Disruption Since the Onset of the Pandemic.

N = 72
M (SD) n (%)
How have your feelings of strain from caregiving tasks changed since the COVID-19 pandemic started? 4.07 (.79)
 Decreased a lot 0 (0)
 Decreased a little 3 (4.2)
 Stayed the same 11 (15.3)
 Increased a little 36 (50)
 Increased a lot 22 (30.6)
How have your feelings of stress changed since the COVID-19 pandemic started? 4.01 (.85)
 Decreased a lot 1 (1.4)
 Decreased a little 1 (1.4)
 Stayed the same 16 (22.2)
 Increased a little 32 (44.4)
 Increased a lot 22 (30.6)
How has the time you’ve spent doing caregiving-related tasks changed since the COVID-19 pandemic started 4.36 (.84)
 Decreased a lot 1 (1.4)
 Decreased a little 0 (0)
 Stayed the same 11 (15.3)
 Increased a little 20 (27.8)
 Increased a lot 40 (55.6)
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Caregiver Preparedness

On average, caregivers felt prepared for their role as primary caregiver (see Table 1 for item means). A one-way repeated measures ANOVA (with a Greenhouse-Geisser correction due to violation of sphericity) on the items comprising the Primary Caregiver Preparedness component was significant, F(2.88, 204.16) = 10.96, p < .001, η p 2 = .134, and while most item ratings statistically differed from each other (see Supplementary materials), the differences were relatively small. In contrast, the Prepared to Delegate Caregiving component displayed more variability across participants, and its average rating was significantly lower than the average of the Primary Caregiver Preparedness component, t(71) = 7.49, p < .001.

Correlates of Caregiver Preparedness

To better understand caregiver preparedness, we examined correlations among key features of caregiving and feelings of preparedness in the early months of the pandemic (Table 4). As anticipated, feelings of caregiver preparedness were significantly related to resilience and burden. More specifically, higher ratings on the Primary Caregiver Preparedness component were associated with greater reported resilience and lower levels of reported burden. The Prepared to Delegate Caregiving component was not significantly related to either resilience or burden (ps > .05). Finally, a significant negative relation between resilience and burden was observed (p < .001) such that greater reported resilience was associated with lower reported burden during the pandemic.

Table 4.

Spearman’s Rho Correlations Between Study Variable.

n M SD Range 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11.
1. Caregiver age 72 62.82 12.42 32–92 —
2. Income 66 4.14 1.76 1–7 −0.11 —
3. Education 72 .62 .49 0–1 −0.06 .38** —
4. Primary caregiver preparedness 72 4.40 .56 2.80–5.00 .00 .05 −0.22 (.77)
5. Prepared to delegate caregiving 72 3.21 1.29 1–5 .39** −0.23 −0.16 .12 —
6. Resilience 72 3.79 .58 2.63–4.88 −0.11 −0.02 −0.07 .47** .13 (.92)
7. Burden 72 24.38 7.79 10–43 .04 −0.09 .10 −0.24* −0.06 −0.39** (.87)
8. Time spent caregiving 71 8.96 6.49 2–24 .17 −0.10 −0.12 .26* .05 .26* .07 —
9. Change in burden 72 4.07 .79 2–5 −0.13 .13 .12 −0.26* .05 −0.37** .42** −0.07 —
10. Change in stress 72 4.01 .85 1–5 −0.06 .22 −0.03 −0.19 .01 −0.28* .30* −0.08 .67** —
11. Change in time spent caregiving 72 4.36 .84 1–5 −0.11 .07 .09 −0.16 −0.01 −0.22 .31** .08 .61** .33** —
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Note: Cronbach’s alpha is shown in parentheses on the diagonal; Income measured categorically ranging from 1 (under $20,000 annually) to 7 (over $200,000 annually). Education was measured as a binary variable indicating whether the participant has a college degree.

To further explore these relationships, hierarchical multiple regression analyses were conducted (Table 5). We first examined the Primary Caregiver Preparedness component. Caregiver demographic variables, including education, gender, and age, accounted for 11% of variance (p = .046; Model 1). Of these, only caregiver gender was significant (p = .038). Next, burden was added to the model, which accounted for 6.4% of additional variance (p = .026; Model 2) and was negatively associated with Primary Caregiver Preparedness (p = .026). When resilience was included (Model 3), it accounted for an additional 14.7% of variance (p < .001) and was positively associated with Primary Caregiver Preparedness (p < .001). Once resilience was included, burden was no longer a significant contributor to the variance of Primary Caregiver Preparedness (p = .566.) 1

Table 5.

Hierarchical Regression of Demographic Variables, Caregiver Burden, and Resilience on Preparedness Components

Primary caregiver component Variable Model 1 Model 2 Model 3
β b t β b t β b t
Education −.18 −.21 −1.58 −.16 −.18 −1.43 −.15 −.17 −1.43
Gender .25 .46 2.11* .25 .47 2.24* .25 .46 2.40*
Age .06 .00 .56 .06 .00 .53 .09 .00 .89
Caregiver burden — — — −.25 −.02 −2.27* −.07 −.00 −.58
Resilience — — — — — — .43 .41 3.78***
F 2.82* 3.53** 6.25***
df 3 4 5
df error 68 67 66
R 2 .11 .17 .32
ΔR 2 .06 .15
Preparedness to delegate caregiving component Model 1 Model 2 Model 3
Variable β b t β b t β b t
Education −.14 −.38 −1.29 −.14 −.37 −1.23 −.13 −.35 −1.19
Gender .09 .37 .76 .09 .38 .77 .09 .37 .76
Age .38 .04 3.44*** .38 .04 3.41*** .39 .04 3.55***
Caregiver burden — — — −.06 −.01 −.54 .02 .00 .15
Resilience — — — — — — .18 .40 1.46
F 4.81** 3.64** 3.39**
df 3 4 5
df error 68 67 66
R 2 .18 .18 .20
ΔR 2 .00 .03
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Note: * indicates significant at .05 level; ** indicates significant at .01 level; *** indicates significant at the .001 level.

To similarly examine the Prepared to Delegate Caregiving component, caregiver education, gender, and age were entered as demographic variables and accounted for 17.5% of the variance (Model 1; p = .004). Caregiver age was the only significant demographic variable (p = .001). Adding burden to the model did not account for a significant change in variance (p = .588; Model 2), and neither did including resilience (p = .148; Model 3). Caregiver age remained significant even after including burden (p = .001; Model 2) and resilience (p < .001; Model 3).

Discussion

Even under the best of circumstances, informal caregivers face tremendous challenges. To better understand the impact of the COVID-19 pandemic, we examined how factors known to relate to the caregiving experience were associated with feelings of caregiver preparedness in the early months of the pandemic. First, most caregivers reported experiencing an increase in caregiver burden, stress, and amount of time spent caregiving. While caregivers generally reported feeling prepared for many aspects of caregiving, they were less sure they were prepared for someone else to take over for them should they be unable to continue in their role as primary caregiver. Next, we found that caregivers who reported feeling more prepared also reported being more resilient and experiencing fewer feelings of burden. Finally, we found that resilience contributed significantly to feelings of caregiver preparedness, more so than caregiver burden or demographic variables, but only caregiver age was significantly associated with feeling prepared to delegate caregiving to someone else.

The fact that most caregivers reported an increase in their feelings of stress and caregiver burden aligns with other recent work in which caregivers reported disruption to their daily routines during the pandemic along with associated increases in anxiety, depression, and distress (Cohen et al., 2021; Rainero et al., 2021; Zucca et al., 2021). Many caregivers and their loved ones, especially those in this sample who relied on ADCs for support, experienced a disruption to the rhythm of daily life during the pandemic-related shutdowns. Our findings suggest that this disruption was accompanied by increased feelings of burden, stress, and time devoted to caregiving. Further, individuals directly impacted by a COVID-19 diagnosis may have experienced comparatively more stress than those not directly affected, though the number in our sample (n = 7) was too small to statistically determine whether this was the case. One positive outcome of the pandemic is that many social service providers and caregiver support groups now have online offerings. A challenge for practitioners and communities is to connect clients to these services, and an objective for researchers is to determine whether they are effective in reducing feelings of burden and stress when traditional forms of support are inaccessible.

Most participants reported feeling prepared for caregiving in the early months of the pandemic, especially in terms of food, medication, health, and safety. In contrast, caregivers felt much less prepared to have someone else assume caregiving responsibilities if they were to become unable to continue in their role. The aspects in which caregivers felt most prepared are, in some ways, not surprising. Providing food, medication, and general caregiving are all responsibilities these caregivers had been practicing prior to the pandemic. In contrast, identifying additional caregivers may have become even more difficult when people were social distancing and there were concerns that interacting with someone outside the household could increase risk of infection. In fact, preliminary work suggests that even when primary caregivers became infected with COVID-19, they sometimes continued to provide care, putting their loved one at risk for infection, or else care was interrupted because no one else could or would provide care (Ishii et al., 2022). These findings suggest future efforts to increase caregiver preparedness should directly address the need for families to identify successive caregivers.

We examined the interrelations among our key variables to determine whether data collected during the pandemic extends findings from prior work. Caregivers in the present sample who reported feeling greater preparedness for the pandemic were likely to report lower burden and greater resilience. Consistent with past work, our study demonstrates that greater caregiver preparedness is related to lower reports of burden and strain among those caring for loved ones with serious health concerns (Archbold et al., 1990, 1992). Additionally, our findings extend recent work on the positive association between caregiver preparedness and resilience among caregivers of patients with cancer (Dionne-Odom et al., 2021) to caregivers of persons with dementia or severe disabilities during the pandemic. These findings also extend past work examining caregiver preparedness during disasters (Gibson et al., 2018; Pickering et al., 2021) by focusing on preparedness specifically for the COVID-19 pandemic, a global health disaster that presented caregivers with challenges few could have anticipated.

The present study examined the extent to which caregiver burden and resilience contributed to variability in feelings of preparedness among caregivers. When entered into the model prior to resilience, greater feelings of caregiver burden were associated with feeling less prepared, but burden was no longer associated when resilience was included in the model. Past work from families coping with cancer found that greater caregiver burden was related to feelings of less preparedness (Fujinami et al., 2015), but previous studies have not examined burden in combination with resilience; our work suggests it is important to do so, as resilience played a larger role in caregivers’ feeling prepared for caregiving in the early months of the pandemic. Surprisingly, neither burden nor resilience were related to feeling prepared for someone else to assume the role of caregiver. Prior work demonstrates a positive relationship between resilience and identifying sources of respite (Donnellan et al., 2015), but in the early months of the pandemic many avenues for respite were inaccessible, which may explain the absence of the expected associations. Here, caregiver age shared the most variance with feeling prepared to delegate caregiving responsibilities, and while this makes intuitive sense, it also suggests that caregivers may delay planning for alternative caregivers until it seems imperative to do so. Considering that both having plans and feeling prepared to implement them may influence caregiver well-being and continuity of care, additional work in this area is desirable.

Limitations and Future Directions

One limitation of the present study is that recruitment was dependent upon the response of ADC directors during a time when most centers were closed, and directors were trying to navigate a variety of challenges. Although utilizing ADCs allowed access to people across the nation who identified as caregivers, it resulted in a small sample and may limit the generalizability of the findings. Past literature suggests that not all caregivers self-identify as such, and those who do are more likely to utilize community resources and receive support (O’Connor, 2007). Caregivers who use ADCs may have experienced more or less stress and burden than other caregivers and may also have differed in their levels of preparedness. Future research should examine these possibilities. It is also important to acknowledge that the COVID-19 Caregiver Preparedness Scale was created for this study specifically to examine preparedness in the early months of the COVID-19 pandemic. Further work is needed to determine whether feelings of preparedness changed as the pandemic progressed (e.g., vaccines became available) and restrictions loosened (e.g., ADCs reopened and health care became more accessible), as well as whether stress, burden, and preparedness differed among urban caregivers compared to those in more rural settings.

The pandemic made clear the need for additional support and improved preparedness across a broad range of caregiver support systems, both informal and formal during disaster (Peterson et al., 2021). Additional steps are needed to determine how current knowledge can be used to improve preparedness for future global health crises or other disasters. Educational interventions are helpful for increasing caregiver preparedness (Hendrix et al., 2011; Hudson et al., 2008) and empowering caregivers to handle times of disaster without negative effects on well-being (O’Sullivan, 2009). During the COVID-19 pandemic, caregivers who had access to caregiving support programs and paid home health assistance displayed greater resilience (Hanna et al., 2022), and related work demonstrates that resilience among caregivers of persons with dementia is malleable and can be improved through systematic intervention (Bravo-Benitez et al., 2021). Taken together, these studies suggest that targeted support bolsters resilience. Importantly, more work is needed to understand the temporal sequencing of resilience and preparedness, especially in the context of pandemics. A critical next step for social service providers is to tailor caregiver emergency preparedness materials for use in the context of a pandemic and ensure they are accessible to caregivers.

Times of disaster call our attention to areas where caregivers are struggling as well as highlight the efforts in which they are already engaged to cope with caregiving demands. While caregivers provide vital care to their loved ones, they faced additional challenges during the COVID-19 pandemic, further emphasizing their need for assistance. The present study provided insight into the relationships among preparedness, burden, and resilience for caregivers of adults with dementia and severe disabilities during the especially difficult time of the COVID-19 pandemic. Understanding the factors associated with caregiver preparedness, particularly caregiver burden and resilience, should allow us to better assist caregivers in the future.

Supplemental Material

Supplemental Material - Caregiving During the COVID-19 Pandemic: Factors Associated With Feelings of Caregiver Preparedness
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Supplemental Material for Caregiving During the COVID-19 Pandemic: Factors Associated With Feelings of Caregiver Preparedness by Rachael L. Turner, Celinda Reese-Melancon, Erin E. Harrington, and Micaela Andreo in Journal of Applied Gerontology

Note

1.

When adding resilience to the model before burden, burden was not a significant source of Primary Caregiver Preparedness variance (See Supplementary materials).

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) received no financial support for the research, authorship, and/or publication of this article.

Ethical Approval: The study was approved by the Oklahoma State University Institutional Review Board (IRB-20–234).

Supplemental Material: Supplemental material for this article is available online.

ORCID iDs

Rachael L. Turner https://orcid.org/0000-0002-3286-9136

Celinda Reese-Melancon https://orcid.org/0000-0002-2976-400X

Erin E. Harrington https://orcid.org/0000-0002-0689-0070

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Associated Data

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Supplementary Materials

Supplemental Material - Caregiving During the COVID-19 Pandemic: Factors Associated With Feelings of Caregiver Preparedness
Click here for additional data file. (78.8KB, pdf)

Supplemental Material for Caregiving During the COVID-19 Pandemic: Factors Associated With Feelings of Caregiver Preparedness by Rachael L. Turner, Celinda Reese-Melancon, Erin E. Harrington, and Micaela Andreo in Journal of Applied Gerontology

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