The Evaluation on the Challenges of Current Assessment Tools Measuring Caregiver Intensity

Abstract

AbstractBackgroundFamily members caring for individuals with Alzheimer’s disease demonstrate higher levels of burden and stress than other caregivers. Caregiver intensity is characterized as the number of tasks and hours caregivers care for the recipient and, as a construct, has demonstrated a more comprehensive assessment of the caregiver experience. Furthermore, because caregiver experience is intertwined within the patient journey, current measures of caregiver burden/intensity do not encapsulate the full construct as described and can be difficult to administer in real world settings.ObjectiveThis session reviews and evaluates current assessment tools measuring caregiver intensity/burden, gaps in measurement, methodology used to implement these measures, associated health economic outcomes, and challenges implementing these measures.MethodsA systematic review of the current assessment tools including the Zarit Burden Interview‐S, Caregiver‐Perceived Burden Questionnaire, Caregiver Burden Scale and the Caregiver Burden Inventory. Domains within each measure, length and burden to respondent and associated outcomes will be assessed.ResultsCurrent measures of caregiver burden/intensity have strengths and limitations in their use. Some do not fully capture the caregiver burden/intensity construct, are limited to a single domain, and exclude recipient progression.ConclusionThe inadequate nature caregiver intensity/burden measurement suggests the construct and its associated clinical, psychosocial, and economic outcomes are likely underreported. The practicality of implementing lengthy and complex measures in a real‐world setting is challenging. Unique approaches that include the intensity of caregiver experience, the patient and caregiver as a “dyadic patient” navigating the patient journey, and multiple domains (financial, social, physical etc.) should be considered. This would provide meaningful information when designing and implementing both caregiver and patient interventions.