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

Disability and Rehabilitation
Kristina M KokoreliasJill I Cameron

Abstract

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. 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. 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 su...Continue Reading

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Citations

Jun 4, 2021·Health & Social Care in the Community·Kristina M KokoreliasJill I Cameron
Nov 16, 2021·The Journal of Spinal Cord Medicine·Jill I Cameron

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