Abstract
Little is known about the family experience of caregiving for persons living with dementia (PLWD) at home during the COVID-19 pandemic. The purpose of this study was to examine the influence of COVID-19 on concerns of current family caregivers of PLWD. Study participants were recruited from the parent study, Healthy Patterns Clinical Trial (NCT03682185). Data was collected from 34 caregivers via semi-structured telephone interviews. Over 70% of the study participants reported worrying about spreading COVID-19 to the PLWD, 41% reported they had taken on additional caregiving duties for others in their family since COVID-19, and 62% reported one or more anxiety symptoms. Dementia caregivers who reported anxiety symptoms reported lower scores on functional independence of their care recipients compared to dementia caregivers who did not report anxiety symptoms (p=0.036). Health care professionals should be alert to the concerns expressed by dementia caregivers for their well-being during this unprecedented pandemic.
Introduction
Dementia caregivers are more likely to experience higher levels of physical and emotional stress compared to non-dementia caregivers. 1,2 One of the common type of the emotional stress is anxiety symptoms which are closely related to the high level of caregiver burden associated with providing demanding care for persons living with dementia (PLWD) in their everyday lives. 3 It is reported that up to 76.5% of dementia caregivers experience anxiety. 3
The novel Coronavirus Disease 2019 (COVID-19) started to spread in the United States in March 2020, and millions of people in the United States have been infected with COVID-19 since then. 4 COVID-19 has not only adversely affected the physical health of dementia caregivers, 5 but also has caused them to experience high levels of stress and caregiving burdens. 6 -8 Dementia caregivers have reported various challenges during COVID-19, 8,9 including difficulties dealing with new daily routines since the outbreak. 9 Family caregivers of persons with advanced dementia have been especially concerned about the absence of paid caregivers during the pandemic. 8 Another important point is that caregivers also have worried about spreading the disease to their loved ones, 8 and some have been worried about PLWD being hospitalized. 9 While anxiety symptoms have been extremely common in the general population during COVID-19, 10 limited information is available on anxiety symptoms of dementia caregivers who not only care for themselves but also their loved ones with dementia. 5,11
Older adults with underlying cognitive or physical vulnerabilities are at heightened risk for COVID-19. 12 As such, PLWD are a high risk population for contracting COVID-19, 13 and a higher mortality risk was reported for PLWD. 14 Most importantly, PLWD may have difficulties comprehending, executing, and recalling any of the suggested public health measures, such as avoiding close contact with other people. 14 -16 Thus, dementia caregivers encounter challenges protecting their loved ones in addition to protecting themselves. Moreover, recent studies have reported that neuropsychiatric symptoms of dementia, such as anxiety, agitation, or depression, worsened during the lockdown period after the outbreak of COVID-19. 7,9,17 -19 Along with worsening neuropsychiatric symptoms, caregivers also found that PLWD have shown symptoms of physical deterioration and have become more dependent during COVID-19. 20 As such, dementia caregivers are experiencing unprecedented changes in caregiving during the pandemic. Considering the high prevalence of anxiety symptoms among dementia caregivers before the start of COVID-19, 3 changes in caregiving during COVID-19 might have impacted their anxiety symptoms. However, anxiety among dementia caregivers during the pandemic is yet understudied.
Therefore, the aims of this study were: (1) To examine the impact of COVID-19 on dementia caregivers; (2) to compare dementia caregivers with anxiety symptoms and those without anxiety symptoms; and (3) to examine factors associated with caregivers’ concerns about making their loved one follow suggested public health measures.
Theoretical Framework
According to the Pearlin Caregivers’ Stress Model, 21 socio-economic status, economic problems, characteristics of PLWD, or constriction of social life can affect competence or mastery of the caregivers, which may lead to mental health outcomes such as stress and anxiety. The unexpected social context of the COVID-19 outbreak can affect dementia caregivers’ emotional stress in many ways. Figure 1 illustrates the conceptual framework of this study grounded in Pearlin Caregivers’ Stress Model. 21 In the situational context of COVID-19, background factors such as age and sex of caregivers and PLWD, objective indicators such as worsened symptoms of PLWD, and subjective indicators such as impact of COVID-19 on caregiving may be associated with anxiety symptoms of caregivers.
Conceptual framework of the study.
Materials & Methods
Participants and Data Collection
The study participants were recruited from the parent study [Healthy Patterns Clinical Trial (NCT03682185)], a randomized controlled trial of a home-based activity intervention designed to improve circadian rhythm disorders and quality of life in PLWD and their family caregivers. In the parent studies, PLWD and family caregivers (dyads) were recruited in the Greater Philadelphia, Pennsylvania region. For this study, the family caregivers were approached for consent.
In the parent study, sustained effects of the interventions were examined three months after the intervention through phone call interviews with family caregivers of the PLWD. In addition to the three-month follow-up calls for the parent study, the research staff asked the potential study participants if they would like to participate in the current study related to COVID-19. If they agreed to participate, verbal consent was obtained. Research staff conducted individual phone interviews using structured questionnaires to collect data. In addition to collecting quantitative data based on the questionnaires, the research staff recorded qualitative anecdotes if the participants shared their experiences during COVID-19. The phone interviews were conducted from June 13th, 2020 to August 28th, 2020. The current study was approved by Institutional Review Board of University of Pennsylvania (Protocol Number: 825000). In this study, a total of 35 dementia caregivers were recruited. Since one caregiver reported death of the PLWD, this study participant was excluded from data analysis considering the aims of the study. Consequently, data on 34 caregivers were analyzed.
Measures
Impact of COVID-19 on caregiving
Questions to measure the impact of COVID-19 on caregiving for PLWD were developed by the authors based on the previous literature. 22,23 This questionnaire included 11 items asking caregivers about the influence of COVID-19. Some of the items included whether COVID-19 had brought financial burden, whether it impacted caregivers on their caregiving, or whether they were worried about spreading disease to the PLWD they are providing care for. All items were binary questions with yes (1) or no (0) options and the summed score ranged from 0 to 11. Higher scores indicated severe impact of COVID-19 on caregiving.
Anxiety symptoms
Anxiety symptoms of dementia caregivers were measured with Generalized Anxiety Disorder-7. 24 The participants were asked whether they had anxiety symptoms in the past two weeks. There were 7 items in the scale, and with 4-point Likert scale from 0 (Not at all) to 3 (Nearly every day), possible scores ranged from 0 to 21. The higher scores indicated more anxiety symptoms. When it was developed, it had high internal consistency (Cronbach α = .92). 24
Caregiver concerns about suggested public health measures
In order to evaluate caregivers’ concerns making their PLWD follow suggested public health measures, three items were developed by the authors. The three questions included were: “Are you concerned with making your loved one wear a face cover or facemask?” “Are you concerned with making your loved one stay at least 6 feet from other people?” and “Are you concerned with making your loved one avoid touching their eyes, nose, and mouth with unwashed hands?” Possible answers for each question were either yes (1) or no (0), with the total possible scores ranging from 0 to 3. In this current study, if the score was equal to or greater than 1, dementia caregivers were considered to have concerns about suggested public health measures. If the score was equal to 0, dementia caregivers were considered to have no concerns.
Baseline depression of caregivers
Baseline depression of dementia caregivers were measured at the baseline of the parent study. It was measured with the Center for Epidemiologic Studies Depression Scale 25 which were composed of 20 items asking caregivers about their moods in the past week. With a 4-point Likert scale, the possible scores ranged from 0 to 60 and the higher scores indicated more depression. Reliability and validity of the scale have been established. 25
Cognition of PLWD
Cognition of PLWD whom the caregivers care for was measured with Clinical Dementia Rating (CDR). 26 The possible range of CDR ranged from 0 to 3 and the higher scores indicated more severe cognitive impairment. Each score indicated following cognitive stage: 0 for normal cognition, 0.5 for very mild dementia, 1 for mild dementia, 2 for moderate dementia, and 3 for severe dementia.
Functional Independence of PLWD
Functional independence of PLWD was measured with Barthel Activities of Daily Living Index. 27,28 With 3-point Likert scale—0 (Unable), 5 (Needs help), and 10 (Independent), possible scores ranged from 0 to 100 with the higher scores indicating more independence in function. Barthel Activities of Daily Living Index has established good reliability in PLWD with reliability of 0.88. 29
Neuropsychiatric symptoms of dementia
Neuropsychiatric symptoms of dementia post-test of the parent study were measured with the Neuropsychiatric Inventory (NPI). 30,31 The NPI measures 12 neuropsychiatric symptoms including delusions, hallucinations, agitation, depression, anxiety, elation, apathy, disinhibition, irritability, aberrant motor behaviors, nighttime behavioral disturbances, and appetite disturbances. When the symptoms were present, it was scored as 1, and when the symptoms were not present, it was scored as 0. In this study, the number of symptoms that were present were included. Thus, the possible scores ranged from 0 to 12, with the higher score indicating more neuropsychiatric symptoms of dementia.
Data Analyses
Descriptive analyses were conducted for characteristics of dementia caregivers and PLWD. Independent t-tests were conducted to compare dementia caregivers who reported anxiety symptoms and those who did not report anxiety symptoms. Univariate logistic regression analysis was also conducted to find care recipients’ factors associated with caregivers’ concern about suggested public health measures. All analyses were performed using the Statistical Package for the Social Sciences for Windows version 25.0. The level of statistical significance was set at less than 0.05.
Results
Table 1 describes the characteristics of the dementia caregivers and their care recipients. The mean age of the caregivers was 59.2±12.7 (Range: 28-79). The mean score of Impact of COVID-19 on Caregiving was 4.2±3.1 (Range: 0-10) which indicates that caregivers on average experienced at least some changes on their caregiving due to COVID-19. In this study, the mean score of anxiety symptoms measured with Generalized Anxiety Disorder-7 was 2.2±2.8 (Range: 0-8). The participants were divided into two groups of caregivers with one or more anxiety symptoms and caregivers with no anxiety symptoms. 61.8% of the dementia caregivers reported that they had at least one anxiety symptom. 52.9% expressed concerns about making the care-recipient follow suggested public health measures.
Characteristics of the Study Participants.
a Missing data excluded.
The care recipients with dementia had the following characteristics. The mean age of the care recipients was 75.1±8.5 (Range: 61-94) and 73.5% were female. The majority of the care recipients were African American (85.3%). In terms of their cognition, the majority of them had very mild dementia. The mean CDR score was 0.6±0.2 (Range: 0.5 -1.0) where 79.4% of the care recipients had a CDR score of 0.5 and 20.6% of the care recipients had a CDR score of 1. The mean score of functional independence measured by Barthel Activities of Daily Living was 95.4±9.0 (Range: 70-100) indicating that the care recipients on average had functional independence. On average, the care recipients had 1.8±2.3 neuropsychiatric symptoms post test of the parent study (Range: 0-9).
COVID-19 impacted dementia caregivers on their caregiving in various ways. Figure 2 describes the histogram of each item of the Impact of COVID-19 on Caregiving scale. The most frequent impact was about the worry of spreading the illness to the care recipient; 70.6% of the dementia caregivers answered that they were afraid of spreading the illness to their loved ones. 44.1% of the caregivers reported that their care recipients had been negatively impacted by COVID-19. Financial hardships were also commonly reported due to COVID-19 and 44.1% worried about the financial problems they could have in the future as a result of COVID-19. 41.2% reported that they had taken on additional caregiving duties for others in their family or network and 38.2% reported their exercise habits are less healthy compared to before the start of COVID-19.
Items of Impact of COVID-19 on Caregiving (n = 34).
In this study, 61.8% of the dementia caregivers reported at least one anxiety symptom in the past two weeks. As can be seen in Table 2, Independent t-tests were conducted to compare dementia caregivers who reported anxiety symptoms and those who did not report anxiety symptoms. Dementia caregivers who reported anxiety symptoms reported lower scores on functional independence of their care recipients compared to dementia caregivers who did not report anxiety symptoms (p=0.036). Other factors such as caregivers’ age, caregivers’ baseline depression, care recipients’ age, and care recipients’ cognitive level or number of neuropsychiatric symptoms were not related to anxiety symptoms of caregivers.
Characteristics of the Caregivers and Care Recipients Based on Caregivers’ Anxiety Symptom.
Among 34 dementia caregivers, 52.9% were concerned about making their care recipients follow suggested public health measures. Univariate logistic regression analyses were conducted to examine factors related to the caregivers’ concerns about suggested public health measures. Among various care recipients’ characteristics, only care recipients’ age was shown significant relationship (Table 3). When the care recipient had more advanced age, the odds of caregivers’ concerns about making their loved one observe suggested public health measures increased (OR=1.11, CI=1.008 -1.224, p=0.034). Other variables such as CDR score or functional independence scores were not significant.
Univariate Logistic Regression Models for Caregivers’ Concerns about Suggested Public Health Measures.a
a (n = 34).
Discussion
This study examined how COVID-19 has impacted dementia caregivers, and explored factors associated with anxiety symptoms in dementia caregivers during COVID-19.
As can be seen in Figure 2, COVID-19 has impacted dementia caregivers on their caregiving in many ways. More than 70% of family caregivers expressed concerns about spreading the COVID-19 illness to their PLWD. Participants shared that since the outbreak of COVID-19, they only go to grocery stores very early in the morning to avoid large crowds because of worry about contracting the illness there. In addition, 52.9% were concerned about making their loved ones practice suggested public health measures, such as wearing masks, or staying at least 6 feet from other people. The results are aligned with previous studies in which dementia caregivers reported worries about protecting PLWD during COVID-19, 9 and worries about spreading the disease. 8 The reasons why dementia caregivers have concerns about their care recipients may be because PLWD are at high risk for contracting COVID-19 due to their advanced age, coexisting medical conditions, and cognitive impairment. 12,14 One participant in our study shared that the PLWD was questioning why she could not touch her eyes, nose, or mouth with unwashed hands. As a result of the PLWD not being fully aware of the pandemic and the reasons to follow protective measures, this may cause additional anxiety symptoms for the caregiver.
Approximately 44% of the participants in this study also reported that COVID-19 had a negative impact on the PLWD. Worsening symptoms of dementia have been continuously reported during COVID-19. 6,7,9,17,18,20 Worsening symptoms may be due to lack of mental stimulation as well as disrupted daily routines. 20,32 Cancellation of recreational activities or reduction of visits from family or friends due to COVID-19 can negatively influence PLWD. 32 Taking care of PLWD with worsening symptoms might have caused stress and anxiety in the dementia caregivers. 6 -8
In this study, over 60% of dementia caregivers were experiencing anxiety symptoms. This study showed that when comparing dementia caregivers with anxiety symptoms and without anxiety symptoms, dementia caregivers with anxiety symptoms reported lower scores on functional independence of PLWD. This result is in line with previous studies that functional dependency is related to higher caregiver anxiety and burden. 33 -36 Since greater loss in everyday functioning among dementia caregivers has been reported during COVID-19, 6,20 more attention should be paid to dementia caregivers who can experience additional burden and anxiety. Future studies with a larger number of participants are needed to understand how functional dependency of PLWD during the pandemic is related to higher anxiety symptoms in dementia caregivers. 9
Moreover, quarantine at home also might have impacted dementia caregivers. Some participants in our study reported, since they were unable to visit their senior centers or gyms for activities or to socialize, they have been feeling burnout from being home all day. Reported psychological impacts of quarantine include post-traumatic stress symptoms, confusion, or anger. 37 Quarantine conditions are known to generate these stressors as little as 10 days of staying indoors. 38 Some caregivers in our study reported that their caregiving duties have been negatively impacted by quarantine. During a telephone interview, one caregiver explained that her care hours increased since COVID-19, and she has spent more time with her care recipient at home. The psychological impacts of quarantine and the additional caregiving times might have contributed to the anxiety symptoms of dementia caregivers.
Another reason underlying anxiety symptoms in dementia caregivers can be financial burden. As shown in Figure 2, several items were asked to examine financial problems of dementia caregivers. These items include: I worry about the financial problems I will have in the future as a result of COVID-19 (n=15, 44.1%), COVID-19 has reduced my satisfaction with my present financial situation (n=14, 41.1%), COVID-19 has been a financial hardship to my family and me (n=13, 38.2%), and My family has been impacted financially by COVID-19 (n=11, 32.4%). The participants of this study were from the Greater Philadelphia, Pennsylvania region and the majority of the study participants were African Americans. Philadelphia is the largest poorest city in the United States; the proportion of residents with income below the poverty level is 24.3% in Philadelphia, while it is 10.5% nation-wide. 39,40 Among those Philadelphia residents below the standard poverty line, African Americans make up 30.8% below the poverty line 41 and 42.3% of the living population in Philadelphia. 40 Therefore, financial hardships reported in this study should not be neglected. If anyone in the household has lost a job or was unpaid during COVID-19, this might have brought a serious economic risk to the household.
Several caregivers shared their coping strategies with care recipients to manage stress during COVID-19, such as using virtual church services, talking over the phone, or watching game shows. When the participants were using coping strategies, they tended not to report anxiety. Further studies examining the relationships between coping strategies and anxiety among caregivers are needed to protect caregivers from developing anxiety. 42
Implications
Caregiver mental and physical health is just as significant as those receiving care. Dementia related societies have published guidelines for dementia caregivers during COVID-19 but most of the guidelines have focused on PLWD, not caregivers. 43,44 Our findings indicate that dementia caregivers are living with anxiety symptoms, and have encountered challenges in care in this unprecedented pandemic. Therefore, health care professionals should evaluate not only the mental well-being of PLWD but also dementia caregivers.
Several studies have introduced possible ways that can support dementia caregivers. Emotion focused coping strategies such as emotional support, humor, religion, or positive reframing are known to protect dementia caregivers from developing higher anxiety. 42 Since sufficient informal support from others can significantly decrease the odds of caregiving overload, 45 utilizing social support systems around the caregiver may be helpful. In the COVID-19 era, some kind of remote support should be helpful. Yet, there is limited remote support available for dementia caregivers. 20 Moving forward, technology based interventions that can provide remote support to dementia caregivers may be helpful. 16,46 -48
In addition, community resources are important sources of support for dementia caregivers, particularly during this time of increased stress. Some caregivers may not be aware of existing resources such as meal support, adult centers, transportation, online therapy, support groups and respite services. Health care professionals of PLWD should be able to introduce community resources to support families of loved ones with dementia.
Strengths and Limitations
There are several strengths of this current study. To the best of our knowledge, this research was the first study to focus on the impact of COVID-19 on dementia caregivers and to examine factors associated with anxiety of dementia caregivers during COVID-19. In addition, the majority of the study participants were from the African American population. Considering that the disease risk and fatality rates reported are disproportionately higher in African American populations, 49,50 this study added knowledge to understand how COVID-19 influenced at risk dementia caregivers within our study.
There are a few limitations in this study. Because of the small number of study participants, it is difficult to generalize our findings to the larger population of dementia caregivers. In addition, we were unable to control for important potential confounders due to the small sample size. Objective indicators of financial distress and information on the coping strategies used by caregivers to address their concerns were not collected in our questionnaire. Although some caregivers anecdotally shared coping strategies used to manage their lives during COVID-19, we were unable to examine the relationship between coping strategies and mental health among dementia caregivers. Future studies with a greater number of dementia caregivers and more information on their coping strategies may be helpful in order to understand the concerns of dementia caregivers and to lessen their anxiety. 42
COVID-19 is an unexpected global pandemic that has added daily concerns to families already confronting profound stress including dementia caregivers. The new stress includes the added worry of spreading their disease to their loved ones, additional caregiving duties, and worsening financial problems. As a result, health care professionals should be alert to the impact of these added stressors on the health and wellbeing of dementia caregivers.
Footnotes
Authors’ Note
This study was approved from University of Pennsylvania Institutional Review Board (Protocol Number: 825000)
Acknowledgment
The authors would like to thank study participants for sharing their experience on caregiving during COVID-19 pandemic. The authors also would like to thank Sonia Talwar, Katie Ramirez, and Bracha Dubiner for their efforts on data collection, and Felicia Potter for her help on the manuscript preparation.
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 authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute of Nursing Research at the National Institutes of Health (R01NR015226).
Significance Statement
The majority of the dementia caregivers (62%) reported one or more anxiety symptoms. Over 70% of the dementia caregivers reported worrying about spreading COVID-19 to the PLWD.