Andrea E Daddato, Kathy S Gleason, Blythe A Dollar, Tobie E McPhail, Courtney R Kraus, Rebecca S Boxer

Understanding Experiences of Caregivers of Spouses with Dementia During Caregiver Healthcare Emergencies

  • Geriatrics and Gerontology
  • Gerontology
  • General Medicine

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 peri-caregiver hospitalization. Research Design and Methods Mixed methods were used. Caregivers of spouses with dementia (n=1000) were surveyed to determine their perceived preparedness for their own hospitalization. Journey mapping interviews (n=18) were used to map caregivers’ experiences during five phases: 1) their spouse with dementia (SWD)’s dementia diagnosis, 2) their SWD’s dementia progression, 3) their own health event, 4) their own hospitalization, and 5) their own return home from hospital. Results Among the 452 (45%) eligible caregiver survey respondents, 75 (17%) had experienced a 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 three 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.

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