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Address correspondence to Colleen J. Maxwell PhD, School of Pharmacy, University of Waterloo, 200 University Ave West, Waterloo, Ontario, Canada, N2L 3G1.
School of Pharmacy, University of Waterloo, Waterloo, Ontario, CanadaSchool of Public Health Sciences, University of Waterloo, Waterloo, Ontario, CanadaICES, Toronto, Ontario, Canada
Center for Health Services and Policy Research, School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, Canada
ICES, Toronto, Ontario, CanadaDepartment of Family Medicine, Faculty of Medicine and Dentistry, College of Health Sciences, University of Alberta, Edmonton, Alberta, Canada
Faculty of Nursing, College of Health Sciences, University of Alberta, Edmonton, Alberta, CanadaSchool of Health Policy and Management, Faculty of Health, York University, Toronto, Ontario, Canada
To examine the prevalence of coping behaviors during the first 2 waves of the COVID-19 pandemic among caregivers of assisted living residents and variation in these behaviors by caregiver gender and mental health.
Design
Cross-sectional and longitudinal survey.
Setting and Participants
Family/friend caregivers of assisted living residents in Alberta and British Columbia.
Methods
A web-based survey, conducted twice (October 28, 2020 to March 31, 2021 and July 12, 2021 to September 7, 2021) on the same cohort obtained data on caregiver sociodemographic characteristics, anxiety and depressive symptoms, and coping behaviors [seeking counselling, starting a psychotropic drug (sedative, anxiolytic, antidepressant), starting or increasing alcohol, tobacco and/or cannabis consumption] during pandemic waves 1 and 2. Descriptive analyses and multivariable (modified) Poisson regression models identified caregiver correlates of each coping behavior.
Results
Among the 673 caregivers surveyed at baseline, most were women (77%), White (90%) and age ≥55 years (81%). Alcohol (16.5%) and psychotropic drug (13.3%) use were the most prevalent coping behaviors reported during the initial wave, followed by smoking and/or cannabis use (8.0%), and counseling (7.4%). Among the longitudinal sample (n = 386), only alcohol use showed a significantly lower prevalence during the second wave (11.7% vs 15.1%, P = .02). During both waves, coping behaviors did not vary significantly by gender, however, psychotropic drug and substance use were significantly more prevalent among caregivers with baseline anxiety and depressive symptoms, including in models adjusted for confounders [eg, anxiety: adjusted risk ratio = 3.87 (95% CI 2.50-6.00] for psychotropic use, 1.87 (1.28-2.73) for alcohol use, 2.21 (1.26-3.88) for smoking/cannabis use).
Conclusions and Implications
Assisted living caregivers experiencing anxiety or depressive symptoms during the pandemic were more likely to engage in drug and substance use, potentially maladaptive responses. Public health and assisted living home initiatives that identify caregiver mental health needs and provide targeted support during crises are required to mitigate declines in their health.
Family and friend caregivers of older adults residing in congregate care settings experienced significant emotional distress during the COVID-19 pandemic.
"We are saving their bodies and destroying their souls.": Family caregivers' experiences of formal care setting visitation restrictions during the COVID-19 pandemic.
Evaluating perspectives of relatives of nursing home residents on the nursing home visiting restrictions during the COVID-19 crisis: A Dutch cross-sectional survey study.
Designated assisted living (DAL) and long-term care (LTC) in Alberta: Selected highlights from the Alberta Continuing Care Epidemiological Studies (ACCESS). Edmonton, AB: ACCES Research Group, University of Alberta, 2011.
Designated assisted living (DAL) and long-term care (LTC) in Alberta: Selected highlights from the Alberta Continuing Care Epidemiological Studies (ACCESS). Edmonton, AB: ACCES Research Group, University of Alberta, 2011.
Designated assisted living (DAL) and long-term care (LTC) in Alberta: Selected highlights from the Alberta Continuing Care Epidemiological Studies (ACCESS). Edmonton, AB: ACCES Research Group, University of Alberta, 2011.
experienced by assisted living caregivers during the pandemic may have led to new or altered coping behaviors, including seeking counseling, starting a psychotropic medication, and increased substance use.
In the general population, studies have shown positive associations between anxiety and/or depressive symptoms and increased alcohol and cannabis use early in the pandemic
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report. May 2021.
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 2: Spotlight on gender and household size. May 2021.
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 3: Spotlight on income, employment, access. September 2021.
Research has also revealed sociodemographic differences in the prevalence of mental health symptoms and substance use during COVID-19, with higher levels of both noted among younger adults and those facing financial stressors,
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 3: Spotlight on income, employment, access. September 2021.
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 2: Spotlight on gender and household size. May 2021.
Comparable data on caregivers, especially of assisted living residents, are scarce. A web-based cross-sectional survey of 5011 adults (including 1362 unpaid caregivers) in the United States showed that caregivers were more likely than noncaregivers to report adverse mental health symptoms (anxiety and depressive symptoms, suicidal ideation) and starting or increasing alcohol or drug use to cope with COVID-19-related stress.
Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity.
Given their extensive roles in resident care, caregivers of assisted living residents may have faced additional and/or unique pandemic-related stressors, placing them at particular risk for adverse mental health outcomes.
Empirical data on the coping behaviors adopted by assisted living caregivers are needed so that appropriate mitigation efforts and resources are mobilized to optimize their health
This study sought to examine the prevalence of coping behaviors among caregivers of assisted living residents during the first 2 waves of the COVID-19 pandemic and variation in these behaviors by caregiver gender and mental health (anxiety and depressive symptoms). Based on previous literature,
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report. May 2021.
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 2: Spotlight on gender and household size. May 2021.
Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity.
we hypothesized that the presence of mental health symptoms would independently increase caregiver risk of new psychotropic drug use and new or increased alcohol, smoking, and/or cannabis use and that psychotropic drug use would be more prevalent among women while substance use would be more prevalent among men.
Methods
This study received ethics approval by the Health Research Ethics Board at the University of Alberta (Pro00101048), University of Calgary Conjoint Health Research Ethics Board (REB20-1544), Human Research Ethics Board at the University of British Columbia (H20-01732) and University of Waterloo Human Research Ethics Committee (ORE#42494).
We examined cross-sectional and longitudinal survey data from the COVCARES-AB/BC (COVID-19 and Caregivers of Assisted living Residents: their Experiences and Support needs) cohort study, conducted in Alberta and British Columbia, Canada. Both provinces initiated “essential visitors” policies in assisted living in mid-March 2020, allowing a single caregiver to enter for end-of-life visits or to assist with feeding or mobility.
Individual homes may have imposed more stringent bans on visitors during peak pandemic waves.
We invited all eligible assisted living homes in both provinces (163 in Alberta, 137 in British Columbia) to participate in COVCARES-AB/BC (Supplementary Table 2). Consenting homes distributed study materials and an open web-based survey link to all caregivers via their internal email list and/or in-person for caregivers visiting the home. This survey link was also distributed via social media, websites, email lists, and newsletters affiliated with our government/caregiver stakeholder partners. Those who identified as the primary adult caregiver (ie, age 18+ years and most informed/involved in care) of a resident age 65+ years living in the home for 3+ months prior to March 1, 2020, were eligible to participate.
The caregiver survey was administered online at baseline (October 28, 2020 to March 31, 2021) and follow-up (July 12, 2021 to September 7, 2021) by the University of Waterloo Survey Research Centre. All baseline respondents, excluding those of residents who passed away before wave 2 (n = 9) or who requested no further contact (n = 4), were eligible to complete the follow-up survey. Each respondent was emailed a unique survey link to permit linkage of their survey responses. Participants received a $25 coffee gift card for survey completion.
Measures
Survey items included standardized validated measures used in a study of assisted living residents and caregivers in Alberta
Designated assisted living (DAL) and long-term care (LTC) in Alberta: Selected highlights from the Alberta Continuing Care Epidemiological Studies (ACCESS). Edmonton, AB: ACCES Research Group, University of Alberta, 2011.
A longitudinal analysis of the impact of the COVID-19 pandemic on the mental health of middle-aged and older adults from the Canadian Longitudinal Study on Aging.
Measures captured caregiver sociodemographic characteristics, physical and mental health, social support, engagement in resident activities and care, and pandemic-related loss of employment and income (and concern level).
Anxiety, Depressive Symptoms, and Reported Health Change (Baseline and Follow-up Surveys)
Caregiver anxiety was assessed with the 7-item Generalized Anxiety Disorder scale (GAD-7),
with 7 items reflecting how often (in last 2 weeks) respondents were bothered by feelings of distress and worry. We used a cut-point of ≥8 to define a clinically significant anxiety disorder (sensitivity 92%, specificity 70%).
consisting of 10 items capturing how often (in past week) respondents experienced signs or symptoms of depression. We used a cut-point of ≥10 to identify clinically significant depressive symptoms (sensitivity 89%, specificity 47% for major depressive disorder).
A longitudinal analysis of the impact of the COVID-19 pandemic on the mental health of middle-aged and older adults from the Canadian Longitudinal Study on Aging.
respondents with missing values for only 1 item were assigned the mean of their other item responses before totaling their scale score. The terms ‘anxiety’ and ‘depressive symptoms’ when used in the text, indicate significant symptomatology.
Caregiver reported change in health was assessed at the time of the survey relative to 3 months before March 1, 2020 (baseline survey) and relative to June 2020 (follow-up survey) and examined as a 3-level variable (somewhat/much better now; same; somewhat/much worse and a binary variable (worse yes/no)).
Coping Behaviors (Baseline and Follow-up Surveys)
At baseline, caregivers were asked to “indicate what, if any, of the following they used during the 3 months after March 1, 2020 because of their experiences during the COVID-19 pandemic: (1) sought counseling services; (2) started an over-the-counter drug to help with sleep; (3) started a prescription drug to help with anxiety or depression; (4) started to consume or increased use of alcohol; (5) started to smoke cigarettes or increased smoking level; and (6) started to consume or increased use of cannabis.” At follow-up, these same items were asked for the period October 1, 2020 to February 28, 2021 (ie, concurrent with second pandemic wave) (Supplementary Figure 1). To address smaller cells, all drug measures were combined as new antipsychotic use, and cigarette smoking or cannabis use were combined.
Covariates
Baseline characteristics included caregiver age, gender, marital status, relationship to resident, ethnic/cultural identity, highest education, prepandemic household income, change in employment status, and income reduction (combined with level of concern) during the 3 months post-March 1, 2020, number of chronic conditions, self-rated health, and perceived emotional/informational social support. The latter was assessed using the relevant subscale of the RAND Medical Outcomes Study—Social Support Survey (MOS-SSS).
We examined the distribution of caregiver characteristics, including mental health symptoms and coping behaviors, overall and by gender. Bivariate associations between caregiver baseline mental health and reported worsening health, and their coping behaviors were examined employing χ2 or Fisher exact tests, where appropriate.
Separate unadjusted and adjusted Poisson regression models, modified for binary outcomes,
examined the associations between caregiver mental health, reported worsening of health, and gender with each of the 4 coping behaviors. These models allow for a direct estimation of risk ratios as odds ratios (from logistic regression) may lead to an overestimate of the risk ratio for some associations. Adjusted models included a limited number of relevant confounders (age, ethnic/cultural identity, income reduction/concern, education)
Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity.
given sample size restrictions. We assessed whether accounting for clustering of caregivers within assisted living homes affected model estimates by including a robust sandwich variance estimator.
As we found no meaningful home-level clustering, we have reported final models without this adjustment.
Longitudinal sample
Prevalence estimates for caregiver coping behaviors, mental health symptoms, and worsening health at the 2 time points, were compared using the McNemar test. For this longitudinal sample, we also examined bivariate associations between their baseline mental health/health measures and coping behaviors reported during both pandemic waves.
Missing data
For most baseline characteristics, including coping behaviors, the proportion of total respondents with missing values was small (eg, <1%-2%). Missing values were more common for anxiety and depressive symptoms (75 and 54 respondents with 2+ missing items for the GAD-7 and CES-D10, respectively). Differences between those missing (vs not missing) mental health items were described previously.
At follow-up, missing values were rare but more common for the mental health measures (44 and 32 respondents with 2+ missing items for the GAD-7 and CES-D10, respectively). We explored the nature of missing data by conducting the Little MCAR test.
As this test was nonsignificant for all our measures (indicating that data were missing completely at random) and given the low level of missing data overall, we did not pursue multiple imputation.
Secondary Analyses
For caregivers in the longitudinal sample, adjusted (modified)
Poisson regression models were conducted to examine associations between their mental health/health measures (assessed at baseline and follow-up) with each of the coping behaviors reported during the second pandemic wave.
All analyses were 2-tailed with statistical significance defined as P ≤ .05. SAS v 9.4 (SAS Institute Inc) was used to conduct all analyses.
Results
Baseline Sample
There were 673 caregivers (associated with 134 assisted living homes; 81.1% supporting residents in Alberta) who completed the baseline survey. About two-thirds were affiliated with urban or large assisted living homes with approximately equal distribution by ownership status. As our recruitment strategy prevents us from identifying the total number of caregivers informed of the open survey link, it is not possible to derive contact, cooperation, or response rates at baseline.
Respondents were primarily women, married, White, age ≥55 years, and a daughter of the resident [79% (417 out of 528)] (Table 1). Relative to men, women were significantly more likely to be <65 years, not married, and White. They were also more likely (P < .10) to report a pandemic-related change in employment status and fair/poor self-rated health.
Table 1Distribution of Assisted Living Caregiver Characteristics, Overall and by Gender (Total Baseline Sample, n = 673)
Includes 4 caregivers who responded ‘prefer not to answer’ to item on gender (1 of these noted ‘prefer to self-describe’ but their response did not make sense as they were referring to their care recipient - so coded with ‘prefer not to answer’).
∗ Includes 4 caregivers who responded ‘prefer not to answer’ to item on gender (1 of these noted ‘prefer to self-describe’ but their response did not make sense as they were referring to their care recipient - so coded with ‘prefer not to answer’).
At baseline, 28.9% of caregivers reported worse health (compared with 3 months prior to March 1, 2020) and 28.6% and 38.8% exhibited anxiety and depressive symptoms, respectively. Mental health symptoms were significantly more prevalent among women than men. All 3 measures were strongly associated with each other (eg, of caregivers with anxiety, 85.6% had depressive symptoms vs 18.6% among those without anxiety, P < .0001; of those with anxiety, 55.6% reported worsening health vs 19.0% among those without anxiety; P < .0001).
During the initial pandemic wave, 16.5% of caregivers reported they started to consume or increased their use of alcohol, 13.3% started a psychotropic drug, 8.0% started or increased cigarette smoking and/or cannabis use, and 7.4% sought counseling services. All coping behaviors were significantly more prevalent among caregivers with anxiety, depressive symptoms, and worse health, except for seeking counseling among those with anxiety (Figure 1 and Supplementary Table 3). None of these behaviors varied significantly by caregiver gender.
Fig. 1Assisted living caregiver reported coping behaviors during the initial wave of the COVID-19 pandemic, among those with clinically significant anxiety disorder, depressive symptoms, self-reported worse health, compared with total and gender-specific prevalence (total baseline sample, n = 673).
The strong positive associations between caregiver baseline mental health symptoms, reported poorer health and coping behaviors remained robust in adjusted models. For example, among caregivers with (vs without) anxiety, the adjusted risk ratio (95% confidence interval) was 3.87 (2.50-6.00) for starting a psychotropic drug; 1.87 (1.28-2.73) for new or increased alcohol use; and, 2.21 (1.26-3.88) for new or increased cigarette and/or cannabis use (Table 2). The corresponding adjusted models for depressive symptoms and poorer health are shown in Supplementary Tables 4 and 5, respectively.
Table 2Unadjusted and Adjusted Associations Between Assisted Living Caregiver Anxiety, Other Characteristics and Select Coping Behaviors (Total Baseline Sample, n = 673)
Caregiver Characteristics
Caregiver Coping Response
Sought Counseling Services
Started OTC Product for Sleep and/or Prescription Drug for Anxiety/Depression
Relatively younger caregivers were significantly more likely to have sought counseling services, started or increased alcohol consumption and cigarette smoking and/or cannabis use during this initial wave. Caregivers with a reported ethnic/cultural identity other than White were less likely to have started or increased alcohol use but more likely to have started or increased cigarette smoking and/or cannabis use. Relative to caregivers with a university degree, those with high school or less education were less likely to have sought counseling and report new or increased alcohol use while those with a college or trade level of education were significantly more likely to report new or increased use of cigarettes and/or cannabis.
Longitudinal Sample
At follow-up, the response rate was 60.2% (longitudinal sample = 386). Caregivers who responded to both surveys were more likely to be age 65+ years, identify as other than White, have a university degree, chronic conditions, and initiated a psychotropic but were less likely to be extremely concerned about income loss (Supplementary Table 6). They did not vary in mental health/health measures from those responding at baseline only.
Among coping behaviors, only the prevalence of new/increased alcohol use varied significantly across pandemic waves with a lower prevalence reported during the second (11.7%) compared with the initial wave (15.1%) (Figure 2). Prevalence estimates for anxiety, depressive symptoms, and worsening health were all significantly lower at follow-up compared with baseline.
Fig. 2Assisted living caregiver reported coping behaviors during the initial and second waves of the COVID-19 pandemic and health characteristics∗ at baseline and follow-up. ∗Among longitudinal caregiver sample, anxiety was significantly higher among women than men at baseline (30.5% vs 19.4%) and follow-up (25.3% vs 9.6%); depressive symptoms were significantly higher among women at follow-up (36.3% vs 22.4%) and higher (but not statistically significant) at baseline (40.9% vs 31.2%). Reported worsening of health did not vary significantly by gender at either time point.
Caregivers with anxiety and/or depressive symptoms at baseline were significantly more likely to report starting a psychotropic drug and new or increased alcohol, cigarette, and/or cannabis use during both the initial (Figure 3, A) and second (Figure 3, B) waves. Baseline depressive symptoms were significantly associated with seeking counseling during both waves. Worsening health at baseline showed less pronounced and consistent associations with coping behaviors during both waves. Gender was not significantly associated with coping behaviors at either wave. In adjusted models, the positive associations between caregiver mental health symptoms (assessed either at baseline or follow-up) and their coping behaviors during the second pandemic wave largely remained statistically significant (Secondary analyses, Supplementary Table 7).
Fig. 3Assisted living caregiver reported coping behaviors during the (A) initial and (B) second waves of the COVID-19 pandemic, among those with baseline clinically significant anxiety disorder, depressive symptoms, self-reported worse health, compared with total and gender-specific prevalence (longitudinal sample, n = 386).
Among assisted living caregivers in 2 Canadian provinces, 16.5% started or increased alcohol use and 13.3% initiated a psychotropic drug to help cope with the initial pandemic wave. A smaller proportion reported new or increased smoking and/or cannabis use (8.0%) and seeking counseling (7.4%). During the second wave, the prevalence of most coping behaviors did not change except for a significantly lower prevalence of alcohol use. Anxiety and depressive symptoms were common among caregivers at baseline but were less prevalent by follow-up. During both waves, the prevalence of psychotropic and substance use was 2 to 4 times higher among caregivers with mental health symptoms. Contrary to our hypothesis none of the coping behaviors at either wave varied by caregiver gender.
Research on coping strategies used by caregivers during COVID-19 is limited and largely restricted to community-based care. Our study is unique in exploring coping behaviors among caregivers to older adults in assisted living (an especially neglected and vulnerable caregiver population) and investigating variations in these behaviors over time (across 2 pandemic waves) and by assisted living caregiver mental and overall health. Similar to our findings, caregivers of community-residing persons with dementia, who exhibited depression tended to have more dysfunctional coping strategies.
Caregivers of community-residing adults in the United States showed overall higher levels of starting or increasing drug or alcohol use, compared with noncaregivers.
Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity.
Increased alcohol consumption in our baseline sample was 16.5%, compared with 13% reported in the general population of middle age and older Canadian adults, for whom depression and anxiety were also predictors of potentially worrisome alcohol use.
Predictors of reported alcohol intake during the first and second waves of the COVID-19 pandemic in Canada among middle-aged and older adults: Results from the Canadian Longitudinal Study on Aging (CLSA).
Our findings contribute to an improved awareness of the similarities and differences in pandemic-related mental health stressors and coping support needs among assisted living caregivers relative to caregivers in other settings.
Although baseline depressive symptoms were associated with seeking counseling during both pandemic waves, this was not true for anxiety. Few caregivers reported seeking counseling at either wave despite having anxiety and depressive symptoms. This finding along with the increased substance use noted in our study and by others
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report. May 2021.
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 2: Spotlight on gender and household size. May 2021.
suggests many used self-medication to cope with pandemic and caregiver related stressors given a reduced availability and/or accessibility to needed mental health services during peak waves. In a small Canadian study, caregivers of persons with dementia reported that this inability to connect with resources would have a lasting impact on their own health.
As older caregivers and those with lower education were less likely to seek counseling in our study, this gap in accessing services may be more pronounced for especially vulnerable caregivers.
The absence of a gender difference in coping behaviors was unexpected given previous studies among the general population
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 2: Spotlight on gender and household size. May 2021.
Predictors of reported alcohol intake during the first and second waves of the COVID-19 pandemic in Canada among middle-aged and older adults: Results from the Canadian Longitudinal Study on Aging (CLSA).
and the higher prevalence of mental health symptoms among women in our study. However, our findings are consistent with a US study of adult caregivers.
Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity.
Stressors and perceived consequences of the COVID-19 pandemic among older adults: A cross-sectional study using data from the Canadian Longitudinal Study on Aging.
Predictors of reported alcohol intake during the first and second waves of the COVID-19 pandemic in Canada among middle-aged and older adults: Results from the Canadian Longitudinal Study on Aging (CLSA).
We did observe some age differences in coping behaviors wherein younger caregivers were more likely to report starting or increasing alcohol, smoking, and/or cannabis use. These differences may reflect a greater tendency for younger adults to report more negative experiences during the pandemic,
Stressors and perceived consequences of the COVID-19 pandemic among older adults: A cross-sectional study using data from the Canadian Longitudinal Study on Aging.
Mental Health Commission of Canada and Canadian Centre on Substance Use and Addiction Mental health and substance use during COVID-19: Summary report 3: Spotlight on income, employment, access. September 2021.
Strengths of this study include the use of comprehensive primary data incorporating validated mental health measures, our longitudinal design, and large sample of adult assisted living caregivers of all ages from 2 Canadian provinces. Our focus on caregivers of older residents in assisted living addresses an important knowledge gap in current COVID-19 research. By examining both positive and potentially maladaptive behaviors we provide a balanced overview of coping strategies in this caregiver population.
There are some limitations to consider. Self-reported survey data has the potential for recall bias (a concern given the relatively long period for baseline data collection) and social desirability bias (particularly for questions on substance use). The analytic sample included largely White, English-speaking women with disproportionately high socioeconomic status. There is the potential for selection bias given our recruitment strategy and use of open-survey link at baseline. The exclusion of caregivers from diverse cultures and the likelihood that some who declined participation did so because of stressors limits the generalizability of our results and may have resulted in an underestimation of mental health symptoms and coping behaviors. Our 60.2% response rate at follow-up likely resulted in lower power for some analyses. We did not employ validated scales for our coping behaviors and some behaviors (eg, physical activity, dietary changes, screen time) were not investigated. Finally, by anchoring coping behaviors to salient time frames to enhance accuracy of reporting, we cannot be sure of the direction of reported associations or whether an initially reported behavior was maintained, reduced, or discontinued over follow-up.
Conclusions and Implications
Assisted living caregivers experiencing anxiety or depressive symptoms during the pandemic were more likely to engage in drug and substance use as coping strategies. Enhanced awareness of caregiver mental health needs during crises coupled with increased availability and accessibility of counseling services and financial resources are needed to mitigate declines in their health.
Acknowledgments
We thank our family/friend caregiver participants, family caregiver organizations [Caregivers Alberta, Family Caregivers of British Columbia], the participating assisted living homes, and government partners [Alberta Health, Alberta Health Services, Government of British Columbia, Vancouver Coastal Health] for their meaningful contributions to this research. We also thank the Survey Research Centre at the University of Waterloo for the expert administration of the COVCARES-AB/BC baseline and follow-up web surveys and Hana Dampf for her assistance with figure presentation.
Supplementary Data
Supplementary Fig. 1Timing of baseline and follow-up caregiver surveys relative to time frames for reported coping behaviors.
Supplementary Table 1STROBE Guidelines for Reporting Observational Studies
Item No
Recommendation
Page No
Title and abstract
1
(a) Indicate the study’s design with a commonly used term in the title or the abstract
2
(b) Provide in the abstract an informative and balanced summary of what was done and what was found
2
Introduction
Background/rationale
2
Explain the scientific background and rationale for the investigation being reported
4-5
Objectives
3
State specific objectives, including any prespecified hypotheses
5
Methods
Study design
4
Present key elements of study design early in the paper
5
Setting
5
Describe the setting, locations, and relevant dates, including periods of recruitment, exposure, follow-up, and data collection
5-6
Participants
6
(a) Cohort study—Give the eligibility criteria, and the sources and methods of selection of participants. Describe methods of follow-up Case-control study—Give the eligibility criteria, and the sources and methods of case ascertainment and control selection. Give the rationale for the choice of cases and controls Cross-sectional study—Give the eligibility criteria, and the sources and methods of selection of participants
(b) Cohort study—For matched studies, give matching criteria and number of exposed and unexposed Case-control study—For matched studies, give matching criteria and the number of controls per case
n/a
Variables
7
Clearly define all outcomes, exposures, predictors, potential confounders, and effect modifiers. Give diagnostic criteria, if applicable
Give information separately for cases and controls in case-control studies and, if applicable, for exposed and unexposed groups in cohort and cross-sectional studies.
For each variable of interest, give sources of data and details of methods of assessment (measurement). Describe comparability of assessment methods if there is more than one group
6-7
Bias
9
Describe any efforts to address potential sources of bias
6,8-9
Study size
10
Explain how the study size was arrived at
n/a
Quantitative variables
11
Explain how quantitative variables were handled in the analyses. If applicable, describe which groupings were chosen and why
6-7
Statistical methods
12
(a) Describe all statistical methods, including those used to control for confounding
8-9
(b) Describe any methods used to examine subgroups and interactions
n/a
(c) Explain how missing data were addressed
8
(d) Cohort study—If applicable, explain how loss to follow-up was addressed Case-control study—If applicable, explain how matching of cases and controls was addressed Cross-sectional study—If applicable, describe analytical methods taking account of sampling strategy
Give information separately for cases and controls in case-control studies and, if applicable, for exposed and unexposed groups in cohort and cross-sectional studies.
(a) Report numbers of individuals at each stage of study—eg numbers potentially eligible, examined for eligibility, confirmed eligible, included in the study, completing follow-up, and analyzed
9,11
(b) Give reasons for non-participation at each stage
Not collected but differences between responders/non-responders in Supplementary Table 6
Give information separately for cases and controls in case-control studies and, if applicable, for exposed and unexposed groups in cohort and cross-sectional studies.
(a) Give characteristics of study participants (eg demographic, clinical, social) and information on exposures and potential confounders
9-11
(b) Indicate number of participants with missing data for each variable of interest
8-9
(c) Cohort study—Summaries follow-up time (eg, average and total amount)
Give information separately for cases and controls in case-control studies and, if applicable, for exposed and unexposed groups in cohort and cross-sectional studies.
Cohort study—Report numbers of outcome events or summary measures over time
11
Case-control study—Report numbers in each exposure category, or summary measures of exposure
Cross-sectional study—Report numbers of outcome events or summary measures
9-10
Main results
16
(a) Give unadjusted estimates and, if applicable, confounder-adjusted estimates and their precision (eg, 95% confidence interval). Make clear which confounders were adjusted for and why they were included
10
(b) Report category boundaries when continuous variables were categorized
n/a
(c) If relevant, consider translating estimates of relative risk into absolute risk for a meaningful time period
Other analyses
17
Report other analyses done—eg analyses of subgroups and interactions, and sensitivity analyses
11
Discussion
Key results
18
Summarize key results with reference to study objectives
12
Limitations
19
Discuss limitations of the study, taking into account sources of potential bias or imprecision. Discuss both direction and magnitude of any potential bias
13
Interpretation
20
Give a cautious overall interpretation of results considering objectives, limitations, multiplicity of analyses, results from similar studies, and other relevant evidence
14
Generalizability
21
Discuss the generalizability (external validity) of the study results
13
Other information
Funding
22
Give the source of funding and the role of the funders for the present study and, if applicable, for the original study on which the present article is based
Title pg and Cover Letter
An Explanation and Elaboration article discusses each checklist item and gives methodological background and published examples of transparent reporting. The STROBE checklist is best used in conjunction with this article (freely available on the Web sites of PLoS Medicine at http://www.plosmedicine.org/, Annals of Internal Medicine at http://www.annals.org/, and Epidemiology at http://www.epidem.com/). Information on the STROBE Initiative is available at www.strobe-statement.org.
∗ Give information separately for cases and controls in case-control studies and, if applicable, for exposed and unexposed groups in cohort and cross-sectional studies.
Supplementary Table 2Description of Assisted Living in Alberta and British Columbia, Canada and COVCARES-AB/BC Study Eligibility Criteria
Alberta
BC
•
In Alberta, there are publicly subsidized and private pay assisted living operators.
•
Publicly funded (subsidized) assisted living in Alberta is known as designated SL.
•
Under the Supportive Living Accommodation Licensing Act, SL must be licensed for resident safety and security and also comply with Accommodation Standards; designated SL must further comply with the Continuing Care Health Service Standards.
•
Designated SL is composed of 3 progressive levels of support moving from the lowest level of support available (SL3) to higher levels of support (SL4 and SL4-Dementia)
o
SL3 is for individuals who are medically and physically stable and can move independently or move with limited assistance. Health care aides are available on site 24 h/d and other health care services are scheduled and provided by home care.
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SL4 is for individuals with more complex health needs and who might require assistance with eating and transfers. It has health care aides and a licensed practical nurse available 24 h/d, and other care needs (eg, rehabilitation therapy) are contracted through home care.
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SL 4D is like SL4 but is specifically for individuals with moderate to severe dementia.
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Further details about designated SL in Alberta can be found here:
In BC, there are publicly subsidized and private pay assisted living operators.
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Under the Community Care and Assisted Living Act (which sets minimum health and safety requirements), all publicly subsidized and private pay assisted living operators that meet the definition of an assisted living residence under the Act are required to be registered with the provincial assisted living registrar.
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Publicly subsidized assisted living services provide housing, hospitality, and 1 or 2 personal assistance services (prescribed services) for adults who can live independently and make decisions on their own behalf but require a supportive environment due to physical and functional health challenges.
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Eligibility require resident to be able to make decisions on their own behalf or who has a spouse willing to live with the resident and is willing/able to make decisions on their behalf.
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If the resident requires 3 or more personal assistance services they are not eligible for publicly subsidized assisted living.
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BC does not differentiate various levels of assisted living depending on individual care needs.
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Further details about assisted living in BC can be found here:
Assisted living Homes (Alberta and BC): Eligibility criteria included homes that were licensed and publicly subsidized (termed designated supportive living in Alberta), in operation for at least 6 months, not primarily serving psychiatric clients and with a minimum number of residents age 65+ y (4 for small, 10 for large homes, based on median bed-size).
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Caregivers of assisted living residents (Alberta and BC): Eligibility criteria included those who identified as the primary adult caregiver (ie, age 18+ y and most informed/involved in care) of a resident age 65+ y living in the home for 3+ mo prior to March 1, 2020.
Supplementary Table 3Distribution of Assisted Living Caregiver Coping Behaviors, Overall and by Reported Change in Health, Presence of Clinically Significant Anxiety Disorder and Depressive Symptoms [Distribution Shown as Column % (n); Total Baseline Sample, n = 673]
Supplementary Table 4Unadjusted and Adjusted Associations Between Assisted Living Caregiver Depressive Symptoms, Other Characteristics, and Select Coping Behaviors (Total Baseline Sample, n = 673)
Caregiver Characteristics
Caregiver Coping Response
Sought Counseling Services
Started OTC Product for Sleep and/or Prescription Drug for Anxiety/Depression
Supplementary Table 5Unadjusted and Adjusted Associations Between Assisted Living Caregiver Health Change, Other Characteristics, and Select Coping Behaviors (Total Baseline Sample, n = 673)
Caregiver Characteristics
Caregiver Coping Response
Sought Counseling Services
Started OTC Product for Sleep and/or Prescription Drug for Anxiety/Depression
Supplementary Table 6Distribution of Assisted Living Caregiver Characteristics, Overall and by Participation in Baseline Only vs Baseline and Follow-Up Surveys [Distribution Shown as Column % (n)]
Includes 4 caregivers who responded ‘prefer not to answer’ to item on sex (1 of these noted ‘prefer to self-describe’ but their response did not make sense as they were referring to their care recipient - so coded with ‘prefer not to answer’).
† Includes 4 caregivers who responded ‘prefer not to answer’ to item on sex (1 of these noted ‘prefer to self-describe’ but their response did not make sense as they were referring to their care recipient - so coded with ‘prefer not to answer’).
Supplementary Table 7Adjusted Associations Between Assisted Living Caregiver Anxiety, Depressive Symptoms, Health Change (Assessed at Baseline vs Follow-Up) and Reported Coping Behaviors During Second Wave of COVID-19 Pandemic (Longitudinal Sample, n = 386)
Caregiver Health Characteristics
Caregiver Coping Response (Wave 2 – Assessed at Follow-Up)
Sought Counseling Services
Started OTC Product for Sleep and/or Prescription Drug for Anxiety/Depression
"We are saving their bodies and destroying their souls.": Family caregivers' experiences of formal care setting visitation restrictions during the COVID-19 pandemic.
Evaluating perspectives of relatives of nursing home residents on the nursing home visiting restrictions during the COVID-19 crisis: A Dutch cross-sectional survey study.
Designated assisted living (DAL) and long-term care (LTC) in Alberta: Selected highlights from the Alberta Continuing Care Epidemiological Studies (ACCESS). Edmonton, AB: ACCES Research Group, University of Alberta, 2011.
Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity.
A longitudinal analysis of the impact of the COVID-19 pandemic on the mental health of middle-aged and older adults from the Canadian Longitudinal Study on Aging.
Predictors of reported alcohol intake during the first and second waves of the COVID-19 pandemic in Canada among middle-aged and older adults: Results from the Canadian Longitudinal Study on Aging (CLSA).
Stressors and perceived consequences of the COVID-19 pandemic among older adults: A cross-sectional study using data from the Canadian Longitudinal Study on Aging.
This work was funded by an Alberta Innovates National Partnered R&I Initiatives Grant (#202100518), and an Establishment Grant and Professorship in Continuing Care Policy Research awarded to MH by the Faculty of Nursing, University of Alberta.
The COVCARES-AB/BC study was funded by an Alberta Innovates National Partnered R&I Initiatives Grant (#202100518), and an Establishment Grant and Professorship in Continuing Care Policy Research awarded to MH by the Faculty of Nursing, University of Alberta.
This study was reviewed and received ethics approval by the Health Research Ethics Board at the University of Alberta (Pro00101048), University of Calgary Conjoint Health Research Ethics Board (REB20-1544), Human Research Ethics Board at the University of British Columbia (H20-01732) and University of Waterloo Human Research Ethics Committee (ORE#42494). Operational approvals from participating assisted living homes were obtained, where required. All participants provided written informed consent.
Consent for publication: Not applicable.
All study data and analytical output are held on a secure server at the University of Alberta as per relevant Ethics Committees’ guidelines. As such, all study datasets are not publicly available. Access is restricted to approved study investigators and research associates. Aggregate data and relevant statistical code are available from the primary investigators on reasonable request. For additional information regarding the availability of data contact Dr. Colleen Maxwell, email: [email protected]
Author contributions: Study concept and design (CJM, MH); acquisition, analysis, or interpretation of data (all authors); drafting of initial manuscript (CJM, LD, ER); critical revision of manuscript for important intellectual content (all authors); statistical analysis (JA, CJM); administrative, technical, or material support (KC); supervision (CJM). All authors provided approval for the final manuscript submitted and agree to be accountable for all aspects of the work.
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