Distance Caregivers of People with Alzheimer's Disease and Related Dementia: A Phenomenological Study

Abstract

Introduction: This research study focused on exploring the lived experience of people caring for someone with Alzheimer's disease and related dementia from a distance (defined as 2 or more hours' distance by car) to help shed light on this caregiving population. Method: Ten participants (all adult children caring for a parent with Alzheimer's disease and related dementia) were involved in this qualitative, phenomenological study. Each participant took part in two individual interviews, the first interview in person with a follow-up interview by telephone phone. After the interviews were transcribed, data were analysed using Moustakas's (1994) modified Van Kaam Method. Findings: Six general themes were derived from quotations from participants, revealing different aspects of the distance caregiving experience. Findings indicated that participants spent much time managing and coordinating the care of their relative. Participants indicated a wish to provide information on their relative that could help healthcare professionals provide effective care, and felt that the process of providing care to their relative impacted their professional and personal lives, including developing deeper connections with their relative and others. According to participants, the experience of caregiving, and balancing caregiving demands with other life demands, led to personal changes and growth. Conclusion: Occupational therapists and other healthcare professionals need to interact and communicate with distance caregivers of people with Alzheimer's disease and related dementia to better support the caregivers and the care being provided to the person with dementia.