{Reference Type}: Journal Article
{Title}: Understanding Experiences of Caregivers of Spouses With Dementia During Caregiver Health Care Emergencies.
{Author}: Daddato AE;Gleason KS;Dollar BA;McPhail TE;Kraus CR;Boxer RS;
{Journal}: Gerontologist
{Volume}: 64
{Issue}: 7
{Year}: 2024 07 1
{Factor}: 5.422
{DOI}: 10.1093/geront/gnad165
{Abstract}: 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.
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.
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.
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.