A Multinational Review of Recent Trends and Reports in Dementia Caregiver Burden

Abstract

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys

“…These findings are consistent with previous more focused studies of caregivers of relatives with one particular type of condition. 15,33,34 It is interesting that we found higher psychological distress related to family caregiving among women than men, with higher OR than for other dimensions of burden. This means that it is not merely that women devote more time and that the time itself is the key determinant of the distress and other psychological burdens experienced by female caregivers.…”

“…Finally, the broader focus of this study design did not allow in-depth explorations of other important aspects of family caregiving and associated burden, such as impact on caregiver quality of life, physical health, or stress-buffering supports, which have been the focus of other studies. 11,12,15,40 Finally, the WMH surveys did not collect data on the number of family members a respondent had and/or lived with, the extent of relatives that were encompassed within the core family in different countries, or the number of family members of a given type with a particular type of illness, imposing restrictions on the extent to which we could carry out finegrained analyses of complex caregiving situations.…”

“…14 Given the dual importance of caregiving for both caregivers and care recipients, it is especially important to monitor or benchmark broad patterns in caregiver burden. However, most available research focuses narrowly on particular family conditions such as dementia, 15,16 stroke, 10 or schizophrenia 7 in geographically homogeneous samples. Such focused studies are invaluable resources on condition-or region-specific caregiver burdens, but cannot be used to generate reliable population-level estimates of total burden associated with the fuller range of mental and physical conditions occurring throughout the world population.…”

Burden and modifications in life from the perspective of caregivers for patients after stroke

“…Thus, the emotional impact experienced by the caregiver can interfere in the care given to the patient, and constitute a predictive factor for a higher number of hospitalizations among the patients (6) , for an increase in institutionalization (7) , and higher mortality among the carers (8) . As a consequence, the carers are challenged by innumerable demands, both foreseeable and not, resulting from the reduction in functional capacity of the patient being cared for, in conjunction with the presence of multiple factors inherent to the act of caring.…”

Examining the economic costs related to lifestyle and pharmacological interventions in youth with Type 2 diabetes

“…However, the research literature does note meaningful caregiver time spent in the treatment of chronic diseases, for example, Alzheimer's disease, by family members [47]. Time spent in intervention activities may be the most important of participant/caregiver costs.…”