Family caregivers: the experience of Alzheimer's disease

This qualitative, interpretive study generated a model to describe the course of Alzheimer's disease (AD) as experienced by family caregivers in interaction with an afflicted relative. Stages of experiencing AD from a family caregiver's perspective were identified. These included Stage 1: noticing; Stage 2: discounting and normalizing; Stage 3: suspecting; Stage 4: searching for explanations; Stage 5: recasting; Stage 6: taking it on; Stage 7: going through it; and Stage 8: turning it over. Since describing typical stages of Alzheimer's dementia by focusing on the patient's symptoms has generated controversial results, this study shifted the focus to the lived experience of family caregivers. It supports prior contentions that patterns and progression in patients themselves are variable; however, families can be offered knowledge about the disorder's course to ease their fears and their difficulties in interpreting interactions with their demented relatives. The study is based on "methods for discovering" theory. A purposeful sample of 20 caregivers was interviewed for at least 2 hours in their own homes. All caregivers held primary responsibility for home care for a demented relative and had consented to participate in the study.