Voices from Down Home: Family Caregiver Perspectives on Navigating Care Transitions with Individuals with Dementia in Nova Scotia, Canada

Abstract

Increasing dependency on government resources in older populations and the high cost of long term care (LTC) have resulted in families being encouraged to provide home-based care for as long as possible, resulting in an increasing disparity between service requirements, user involvement, and service provision. Family caregivers are often referred to as 'in-formal' caregivers to distinguish them from paid caregivers like nurses and aides. The term informal suggests casual, unstructured, unofficial care, yet these individuals carry out medical tasks that if performed by a nurse would be considered skilled care. This categorization ignores demanding medical tasks, frequent lack of cooperation from care recipients with dementia, constant strain of managing behavioral disturbances, as well as the financial and managerial challenges of caregiving over long periods of time. Despite these factors, making the decision to relinquish the caregiving to health care providers can be a very difficult and stressful. Many family caregivers have made significant personal sacrifices lo keep their family members at home, and have often developed important patterns of coping, mastery, and hardiness over the course of their family caregiving role. Transitions between care settings—in which family members play an important role—bring the varied elements of health and long-term care together for fleeting but critical moments in time. Therefore, the contributions and experiences of family caregivers through the trajectory of care should be considered in gathering information lo shape policies and practice, training health care professionals, developing programs, and reforming financing. (PsycInfo Database Record (c) 2022 APA, all rights reserved)