A grounded theory study to identify caregiving phases and support needs across the Alzheimer’s disease trajectory

Abstract

Purpose Caregivers of individuals with Alzheimer’s disease require support across the full disease trajectory. The aim of this study was to develop a conceptual framework of caregiving phases across the Alzheimer’s disease and caregiving trajectories and the corresponding caregiver support needs. Materials and methods Constructivist grounded theory informed data collection and analysis. 40 spousal (n = 20) and adult children (n = 20) caregivers were interviewed. Recruitment was completed when theoretical saturation was achieved. Member-checking interviews occurred with 10 participants. Results Participants described five phases of caregiving related to their responsibilities to support people with Alzheimer’s disease including monitoring initial symptoms, navigating their diagnosis, assisting with instrumental activities of daily living, assisting with basic activities of daily living, and preparing for the future. Support (i.e., informational, emotional, instrumental, and appraisal) needs were often specific to the phase of care. For example, during the initial symptoms phase, caregivers reported needing information to assist them to distinguish normal aging from cognitive impairment. In contrast, during the preparing for the future phase, caregivers emphasized support for accessing institutional long term-care placement. Conclusions Findings highlight caregiver-identified phases of caregiving and corresponding support needs across the Alzheimer’s disease trajectory. Findings can inform the development, evaluation and implementation of programs and services to meet caregivers’ changing needs across the disease trajectory. IMPLICATIONS FOR REHABILITATION Caregivers for individuals with Alzheimer’s disease can experience distinct caregiving phases across the disease trajectory with corresponding support needs. Rehabilitation clinicians can use these findings to help caregivers navigate available supports at appropriate times to ensure that their needs are addressed across the disease trajectory. Occupational therapists and other rehabilitation professionals can enable caregivers with timely education and support as they progress across the disease trajectory.