PIH36 How Does Caregiver Burden Change As Alzheimer's Dementia (AD) Severity Advances?

Abstract

While the progression of caregiver burden is thought to increase as AD severity worsens, the literature on this topic has not been summarized. Caregiving accounts for the highest cost associated with AD management, in the absence of any disease modifying treatments. A well-characterized trajectory of caregiver burden across AD severity would allow value demonstration of future AD treatment options that might delay disease progression. To compile and summarize published studies reporting AD caregiver burden in an effort to profile the change in caregiver burden with AD progression. A systematic literature search was conducted using PubMed and EMBASE for articles published from 2004 to 2020. Randomized controlled trials and observational studies assessing dyads of patients with AD and their caregivers were included. Caregiver burden quantified via the Zarit Burden Interview (ZBI) Scale, a 22-item scale that is predominantly used and well-validated to assess caregiver burden, was then grouped according to AD severity. Articles lacking AD severity data, articles with non-unique samples, and non-English studies were excluded. Of 167 studies found, 152 full-text articles were screened after duplicates were removed, and 18 studies met the inclusion and exclusion criteria. Overall, the compiled data supports the notion that caregiver burden increases with worsening AD. However, the degree of change appears to vary depending on factors such as country, caregiver relationship to the patient, and caregiver gender. The paucity of caregiver burden data available in the United States emphasizes the need for further studies elucidating caregiver burden progression in the United States. A better understanding of the course of caregiver burden would permit future cost-effectiveness studies and economic modeling of AD treatment options to demonstrate value for products that might delay disease progression and in turn reduce caregiver burden