Understanding Experiences of Caregivers of Spouses With Dementia During Caregiver Health Care Emergencies

Abstract

Background and objectives: Caregivers of persons with dementia are frequently spouses. Caregiver hospitalization causes disruption to caregiving. The goal of this research was to understand the preparedness and stress trajectory of peri-caregiver hospitalization.

Research design and methods: Mixed methods were used. Caregivers of spouses with dementia (n = 1,000) were surveyed to determine their perceived preparedness for their own hospitalization. Journey mapping interviews (n = 18) were used to map caregivers' experiences during 5 phases: (a) their spouse with dementia (SWD)'s dementia diagnosis; (b) their SWD's dementia progression; (c) their own health event; (d) their own hospitalization; and (e) their own return home from the hospital.

Results: Among the 452 (45%) eligible caregiver survey respondents, 75 (17%) had experienced hospitalization in the previous 12 months and 51 (68%) hospitalizations were unexpected. Twenty-three (31%) of hospitalized caregivers indicated they did not have prior plans in place for the care of the SWD. When asked about an unexpected hospitalization in the future, 233 (52%) felt somewhat prepared and 133 (29%) felt not at all prepared. Journey mapping revealed 3 groups of caregivers: Group 1 (n = 7) rated their stress lower during their hospitalization, Group 2 (n = 7) rated their stress highest during their hospitalization, and Group 3 (n = 4) were at a sustained high-stress level.

Discussion and implications: Many caregivers are not prepared for their own hospitalization. The stress trajectory through important phases of dementia caregiving and a caregiver's own hospitalization is not universal. Meeting the needs of caregivers' peri-hospitalization should be tailored to the individual caregiver.

Keywords: Hospitalization; Journey mapping; Mixed methods.