Biomedical advancements today allow older adults, including those with dementia, to live longer, with 15 million living at home with lay caregivers. Recent research documents the stressful role of these caregivers; but it is unknown if and how palliative care services might lessen that stress among caregivers.

This qualitative phenomenological study describes the lived experience of caregivers by exploring feelings about being a caregiver and using palliative care services. Using a community sample of lay caregivers (N=11), each underwent one recorded interview (one hour). Interviews were analyzed following van Manen’s approach to uncover thematic aspects and isolate thematic statements.

Most caregivers were older (M 71, SD 9.6; range 53-84 years), female (n=10), and provided care full time. Ten caregivers lived alone with their care partner. Care partners averaged 7 years with a diagnosis of dementia. Strikingly, no caregivers could explain the concept of palliative care services. Only one participant had ever heard the phrase palliative care. Salient themes included feeling frustrated, angry, and lonely regarding their role, and a lack of control over daily and future events. Few participants expressed positive feelings. Caregiver wives who were at least five years younger than their husbands with dementia, compared to wives who were close in age to their husbands, expressed disappointment and self-pity at having missed traveling and other activities during the younger retirement years because of caring responsibilities.

Study findings illustrate that these caregivers are dealing with a range of feelings. Opportunities exist for health care professionals to discuss and refer caregivers to palliative care services. Being in tune to differences in feelings among caregivers should allow for more personal and possibly effective plans of care to ameliorate sources of caregiver stress.