Prevalence and Risk Factors of Burden Among Caregivers of Older Patients in the Emergency Department The Caregiver Burden of Acutely Presenting Older Patients

Tessel Zaalberg (  tzaalberg@viecuri.nl ) Department of Emergency Medicine, VieCuri Medical Center, Venlo, The Netherlands. https://orcid.org/0000-0002-8947-8304 Dennis Barten Department of Emergency Medicine, VieCuri Medical Center, Venlo, The Netherlands. Caroline van Heugten Department of Neuropsychology and Psychopharmacology, Maastricht University, Maastricht, the Netherlands; Limburg Brain Injury Center, Maastricht, the Netherlands; School for Mental Health and Neuroscience, Maastricht University Medical Center, Maastricht, the Netherlands. Petra Klijnsma Department of Geriatric Medicine, VieCuri Medical Center, Venlo, The Netherlands. Lieve Knarren Department of Internal Medicine, VieCuri Medical Center, Venlo, The Netherlands. Ytje Hiemstra Caregiver representative, MantelzorgNL, Zeist, The Netherlands. Roel Kurvers Department of Pediatrics, Maastricht University Medical Center, Maastricht, The Netherlands. Anita Lekx Department of Emergency Medicine, VieCuri Medical Center, Venlo, The Netherlands. Simon Mooijaart Department of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, The Netherlands. Maryska Janssen-Heijnen Department of Epidemiology, VieCuri Medical Center, Venlo, The Netherlands. 9Department of Epidemiology, GROW School for Oncology and Developmental Biology, Faculty of Health Medicine and Life Sciences, Maastricht University Maastricht, The Netherlands


Introduction
Acutely presenting older patients in the emergency department (ED) often have caregivers with similar age and health status, which may result in a fragile balance regarding care needs at home. Surprisingly, information on the prevalence and risk factors of caregiver burden is lacking. Especially little is known about their level of burden when older patients seek acute medical care.
In many developed countries, the number of older individuals who live independently at home is increasing. (1) In 2011, almost half of all older adults in the US reported receiving help with daily activities.
Of these, 83% lived in community settings and nearly 1 in 5 received help with their most basic self-care or mobility activities. (2) A recent study in the Netherlands showed that 95% of older ED patients lived independently at home prior to their visit. A caregiver was reported by 51% of patients. (3) Overall, 16% of caregivers of patients with cancer experience a high to severe burden, (4) and for caregivers of stroke survivors and patients with dementia this burden is even higher, approaching 35% and 60%, respectively. (5,6) Furthermore, the number of hours of care delivered is associated with the occurrence of burnout among caregivers. (7,8) Caregivers with a high burden may cause potential health risks for patients through inadequate care, medication mistakes, and elder abuse or neglect. (9) In this prospective observational cohort study, we determined the prevalence and risk factors of caregiver burden of acutely presenting older patients in the ED.

Study design
We conducted a prospective observational cohort study at the ED at VieCuri Medical Center in Venlo, the Netherlands. This is a teaching hospital and a level 2 trauma center with an annual ED census of 25,000 patients. In 2019, 33% of the patients who presented at the ED were ≥ 70 years old. In the Netherlands, primary healthcare is well developed and accessible for patients 24 hours a day. General practitioners (GPs) serve as gatekeepers to hospital care. During o ce hours, patients can consult their own GP, usually obtaining an appointment that day. Afterhours primary care is provided through GPs cooperatives. The majority of ED patients are referred by their GPs or by ambulance. Self-referrals compromise a small minority. (10) This study was approved by the Institutional Review Board of VieCuri Medical Center, Venlo, the Netherlands (#458).

Participant selection
Participants were recruited between November 6, 2019 and January 19, 2020, with an interruption of one week from December 25, to January 1. All patients ≥ 70 years of age were screened for eligibility by the ED's treating physician. Their baseline characteristics were collected. If patients reported a caregiver, both the patients and the caregiver were included for further analysis. A caregiver was de ned according to Kent et al. as "individuals who provide care that is typically uncompensated and usually at home, which involves signi cant amounts of time and energy for months or years, and which requires the performance of tasks that may be physically, emotionally, socially or nancially demanding." (11) Exclusion criteria for patients were living in a nursing home, unwilling to participate, unable to participate due to language barriers, highest triage category (red) using the Manchester triage system, (12) and inability to provide informed consent (with no legal representative available). Patients and their caregivers were provided written information about the study and the treating physician obtained informed consent.

Data collection
A structured medical record review of patients was performed in which information was collected to identify potential risk factors for caregiver burden. Patients and caregivers were interviewed separately by one researcher (T.Z.) using questionnaires. The interview took place during the ED visit or within 7 days after the ED visit by telephone.
The following information about patients was collected from the medical record review and the questionnaires: age; sex; marital status; highest level of education (divided into two categories: low [un nished, primary, secondary] and high education [vocational and tertiary studies]); employment; nationality; reason for ED visit (trauma-related or not); mode of ED referral; cognitive impairment (de ned as o cial diagnosis of dementia determined by a geriatrician); active malignancy; homecare; number of caregivers; age adjusted Charlson Comorbidity Index (ACCI) presented as estimated 10-years survival; (13) Acutely Presenting Older Patients (APOP) score (risk of functional decline or mortality in three months); (14) Activities of Daily Living (ADL) KATZ score (15) and Instrumental activities of daily living (IADL) score. (16) The ADL-KATZ score ranges from 0 to 6 and a higher score corresponds with higher dependency. The IADL score measures, seven everyday functional competence through self-reporting. Each item could score 2 points. Score ranges from 0-8 (dependent) or 9-14 (independent).
The caregiver information collected included: age; sex; nationality; relationship to the patient; highest level of education (divided into two categories: low [un nished, primary, secondary] and high education [vocational and tertiary studies]); employment; self-reported number of hours of caring for the patient; distance to the patient; term of care provided; clinical frailty scale (CFS) (17) and caregiver strain index (CSI). (18) The CSI is a brief and easy 13-question tool used to quickly identify potential burden of caregivers that contains subjective and objective elements. Positive responses to ≥ 7 questions indicate a high level of strain. There is a minimum of one question for each of the following domains: employment, nancial, physical, social and time. (18) Caregivers with a CSI index ≥ 7 completed this questionnaire again four weeks after the initial ED visit to determine whether the burden persisted.

Sample size
We aimed to include 200 caregivers based on previous research with a comparable study setting. (3,19) With an expected burden of 20%, we estimated including 160 caregivers without and 40 caregivers with burden.
Statistical analysis SPSS version 24 (International Business Machines Cooperation, Amsterdam, the Netherlands) was used for statistical analyses. Baseline characteristics were presented as numbers and percentages for categorical variables and means or medians for continuous variables. Pearson's chi squared t-test and the Mann Whitney u-test were used to determine the association between experienced burden (yes/no) and dichotomous and categorical patient and caregiver characteristics. Univariate logistic regression analyses were conducted to analyze the association between patient and caregiver characteristics as independent variables, and the caregiver burden as dependent variable. A high burden was de ned as a CSI > 7. (20) Characteristics that were associated with burden in univariate analyses were included in a multivariate logistic regression analysis to investigate which characteristics were independently associated with burden. Age and sex of both patient and caregiver were also included in this multivariate regression analysis. We calculated odds ratios (ORs) for burden with 95% con dence intervals (CI) and a p value of < 0.05 was considered signi cant.
Compared to patients without a caregiver, patients with a caregiver were on average older (78 vs 82 years). The baseline characteristics were similar (Table 1).

Patients and their caregivers
Of the patients with a caregiver, 20% had an active malignancy and 22.5% were cognitively impaired. The percentage of patients living alone was 42.5%. The mean age (SD) of the caregivers was 66 (12.4) years, 67.5% were female and 51% of the caregivers were the spouse or partner of the patient. Among the 200 caregivers in this study, 78 (39%) experienced a high burden with a CSI score ≥ 7. Both the patient age and caregiver age were not signi cantly associated with burden.
Patient and caregiver characteristics are summarized in Table 2.  pvalue * Diagnosed by a geriatrician (including dementia, Alzheimer's disease, frontotemporal degeneration, Lewy body disease, traumatic brain injury (TBI) and neurocognitive issues due to Parkinson's disease).
In the univariate logistic regression analyses, cognitive impairment (OR = 7.80), ADL KATZ score with a high level of dependency (OR = 3.68), IADL dependency (OR = 8.24) and self-reported number of hours of care per day (OR = 3.51 for 1-23 hours vs < 1 hour and OR = 10.78 for 24 hours vs < 1 hour) were signi cantly associated with a high caregiver burden (Table 3). Patients. An APOP score of 0-44 is de ned as a low risk of adverse outcomes, and an APOP score ≥ 45 is de ned as a high risk of adverse outcomes.
ADL KATZ score = Activities of Daily living. Dependency of 0-3 items is de ned as a low level of dependency, and a dependency of 4-6 items is de ned as a high level of dependency.
IADL score = Instrumental activities of daily living. Dependent is de ned as an IADL score 0-8. Independent is de ned as an IADL score > 8.

CFS = clinical frailty scale. NI = Not Included
In the multivariate logistic regression analysis, cognitive impairment of the patient (OR = 3.91), IADL dependency (OR = 4.46), and self-reported number of hours of care per day by the caregiver (OR = 2.80 for 1-23 hours vs < 1 hour and OR = 8.21 for 24 hours vs < 1 hour) were independently associated with high caregiver burden (Table 3).
Four weeks after ED presentation, the 78 caregivers with a high burden were reassessed for possible persistence of burden. Of these, six (7%) were lost to follow-up because they could not be reached by telephone. In 49/78 caregivers (63%), the high burden persisted.

Discussion
This is the rst study to assess the prevalence and risk factors for caregiver burden of acutely presenting older patients in the ED. Approximately 40% of the caregivers experienced a high burden. These ndings demonstrate that burden is highly prevalent among caregivers presenting at the ED. We identi ed an association between caregiver burden and patients with cognitive impairment or IADL dependency, as well as the number of self-reported hours of care.
Most prior studies on caregiver burden were conducted on speci c patient populations such as older patients with dementia, cancer, or advanced illness. (4,(21)(22)(23) In our cohort, caregiver burden was relatively high compared to other studies. (4,5,24) This could be explained by several patient and caregiver characteristics. First, our study included a relatively high number of dependent care recipients such as patients with cognitive impairment, stroke survivors and an active malignancy. However, this pro le is probably representative for the community dwelling older patients in our society. Second, more than half of the caregivers were female. It has been shown that women more often care for ill relatives and are more likely than men to suffer from depression regarding caregiving tasks. (25) Third, the number of multigenerational caregivers, those who care for children and parents, is rising as life expectancies increase. Increasing workloads and caring for a relative generally negatively affect the daily lives of caregivers and may contribute to their burden. (26) Fourth, the ED visit may have been the climax of a long, debilitating journey of illness and disability, which may be re ected in a high caregiver burden. Finally, the identi cation of caregivers depends on the de nition: caregivers with no burden and few care tasks may not consider themselves as caregiver, which may be associated with an overestimation of the percentage of burden. (27) This study con rms previous research that found a univariate association between caregiver burden and cognitive impairment, ADL dependency, and IADL dependency of patients. (5,25,28,29) After adjusting for the other variables, we found that only cognitive impairment and IADL dependency were associated with a high caregiver burden. This could be explained by the ADL support provided by homecare professionals. Homecare assistance has been reported by 50% of the participants. IADL includes tasks that are not always resolved by homecare professionals, such as grocery shopping, cooking, and assisting with patient transfers.
Caregiver burden does not only harm the caregiver, but is also associated with potential patient health risks. It may result in inadequate care, medication mistakes, and elder abuse or neglect. (9) Although it is likely that caregiver burden is associated with higher ED utilization, this has not been investigated. However, studies on unplanned hospital readmission of older patients found an association between caregiver burden and the risk of readmission. (19) Furthermore, social problems and insu cient social support have been identi ed as major drivers of ED use. (30) Surprisingly, the patients' children reported more years of caregiving than the patients' partners. They may have considered themselves caregiver sooner than patients' partners. Nevertheless, both the term of care provided and the relationship between the caregiver and patient were not associated with burden.
Approximately 60% of the caregivers experienced no burden. In fact, caregiving was also associated with positive aspects or a positive appraisal. The caregiver may experience an improved relationship with the patient, a higher self-e cacy, and a sense of personal growth. This may contribute to a better quality of life for the caregiver. (31)(32)(33) However, caregivers are often untrained for this challenging role. They may not have access to caregiving information or support, and caregiving education programs are not widely implemented. (34) This study has several limitations. First, the CSI was measured during presentation at the ED, which could have in uenced the score. However, the burden persisted in 63% of the participants four weeks after ED presentation, so this in uence was likely limited. Second, some caregivers may have been missed because not all caregivers may consider themselves as such. Caregivers who provide long-term or intensive care more often consider themselves caregiver, which may contribute to overestimation of burden. Various caregiver de nitions circulate in the medical literature, further complicating the interpretation of our ndings. (35) Third, caregivers were not interviewed about their quality of life or other caregiving experiences. Caregivers may also experience positive aspects of care or positive appraisal such as caregiver satisfaction, but these aspects were not investigated. Fourth, this was a single-center study, and demographics as well as caregiver burden may differ between regions or healthcare systems.
Fifth, it was not assessed whether caregivers also had to care for other individuals, which may have contributed to their burden. The persistence of burden was only assessed in caregivers with a CSI ≥ 7. It is therefore unknown what the course of burden was in the caregivers with a low burden. Finally, 267 of 1,086 patients were not screened for eligibility. In most of the missed cases, the site researcher (T.Z.) was not present and the treating physician did not screen the study patients. Also, ED crowding occurred multiple times during the study period, occasionally hampering inclusion. To reduce selection bias, the researcher was scheduled in random shifts. This "true random sampling" method has been shown to represent the overall population in more than 95% of the samples and it has a low probability of selection bias. (36) This study's strengths include its prospective design, participant recruitment, extensive sample size of 200 patients, use of a validated caregiver burden scale, inclusion of all older patients referred to the ED regardless of the reason for their ED visit, and the fact that caregivers and patients were interviewed separately.
Future studies should be multicenter and multinational to assess whether the high caregiver burden occurs in other regions or countries with different healthcare systems. Whether there is an association between high caregiver burden and (low-urgent) ED utilization or negative outcomes should also be ascertained. If an association is found, it should be assessed if the caregiver burden could be used as a screening tool to identify ED patients who are frail or have a high risk of experiencing negative outcomes.
Predicting outcomes of older ED patients is essential for delivering adequate care, but can be challenging.
(37) New predictors outside the scope of classical medical or frailty-based data may therefore be of extra value. Furthermore, 30-day mortality after ED visit is more associated with frailty than triage urgency. (38) As such, caregiver burden may be a marker of system frailty (as opposed to individual frailty).

Conclusion
Almost 40% of older patients in the ED have a caregiver who experiences a high burden. Formal assessment in the ED may help provide adequate care to the patients and their caregivers, but more research is needed to establish whether caregiver burden is associated with frailty or negative outcomes in older ED patients. Availability of data and materials: please contact corresponding author for data requests.
Con icts of Interest: The authors have no con icts of interest to disclose relevant to this article.
Financial disclosure: This study was nanced by VieCuri Medical Center's research fund.
Sponsor's Role: the sponsor had no role in the study design, research methods, data collections, analysis, or manuscript preparation.