Lay Caregivers' Experiences With Caring for Persons With Dementia: A Phenomenological Study.

Today, biomedical advancements allow older adults, including those with dementia, to live longer, with most living at home with a lay caregiver. Recent research details the stressful role of caregiving to persons with dementia (PWD). The current qualitative phenomenological study describes the lived experience of caregivers caring for PWD, including their experience with palliative care. A community sample of lay caregivers (N = 11) underwent recorded individual interviews. Interviews were analyzed following van Manen's approach to isolate thematic statements. Most caregivers were older (mean age = 71, SD = 9.6; range = 53 to 84 years) and female (n = 10). Study themes included: (a) Uncertainty: The Slippery Slope, (b) The Sense of Loneliness, (c) Complexities of Frustration, and (d) On the Other Side of the Spectrum. Findings show these caregivers are dealing with a dynamic range of feelings about their experiences. Opportunities exist for health care professionals to discuss such feelings and refer caregivers to supportive services, including palliative care.