Caregiver decisions along the Alzheimer's disease trajectory

Abstract

Despite the rising prevalence of Alzheimer's disease (AD), there is limited systematic evidence about disease specific decisions. The aim of this qualitative descriptive study was to identify decisions across the AD trajectory using focus groups of past and present caregivers. Qualitative content analysis revealed three main categories with corresponding categories and sub-categories. Main Category One-Decisions pertaining to self-yielded two categories: decision pertaining to the offering of self and care for the caregiver. Main Category Two-Decisions pertaining to the patient-yielded three categories: decisions about care and treatment, living arrangements, and protecting the patient from harm. Main Category Three-Communication and relationships in decisions-yielded two categories: navigation and negotiations. The results of this study will inform healthcare providers and caregivers as they work together to anticipate, prepare, and plan for care management decisions over the AD trajectory.