Advanced dementia research in the nursing home: the CASCADE study

Abstract

Despite the growing number of persons with advanced dementia, and the need to improve their end-of-life care, few studies have addressed this important topic. The objectives of this report are to present the methodology established in the CASCADE (Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life) study, and to describe how challenges specific to this research were met. The CASCADE study is an ongoing, federally funded, 5-year prospective cohort study of nursing [nursing home (NH)] residents with advanced dementia and their health care proxies (HCPs) initiated in February 2003. Subjects were recruited from 15 facilities around Boston. The recruitment and data collection protocols are described. The demographic features, ownership, staffing, and quality of care of participant facilities are presented and compared to NHs nationwide. To date, 189 resident/HCP dyads have been enrolled. Baseline data are presented, demonstrating the success of the protocol in recruiting and repeatedly assessing NH residents with advanced dementia and their HCPs. Factors challenging and enabling implementation of the protocol are described. The CASCADE experience establishes the feasibility of conducting rigorous, multisite dementia NH research, and the described methodology serves as a detailed reference for subsequent CASCADE publications as results from the study emerge.

FIGURE 1

The CASCADE study data collection protocol. Assessments of residents with advanced dementia were conducted at baseline and quarterly intervals thereafter for up to 18 months or until death. If the resident died, a death assessment was completed within 14 days. HCP assessments were conducted by telephone interviews at baseline and on a quarterly basis thereafter for a maximum of 18 months. If the resident died, HCPs were interviewed 2 and 7 month postdeath.