This is the first 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 findings demonstrate that burden is highly prevalent among caregivers presenting at the ED. We identified 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 specific patient populations such as older patients with dementia, cancer, or advanced illness.(4, 21–23) 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 profile 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 reflected in a high caregiver burden. Finally, the identification of caregivers depends on the definition: 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 confirms 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 insufficient social support have been identified 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-efficacy, and a sense of personal growth. This may contribute to a better quality of life for the caregiver.(31–33) 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 influenced the score. However, the burden persisted in 63% of the participants four weeks after ED presentation, so this influence 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 definitions circulate in the medical literature, further complicating the interpretation of our findings.(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).