Callahan LF, Samsell B, DiBenedetti D, Frangiosa T, Slota C, Biggar V, Paulsen R, Lappin D, Herring WL, Romano (DeMuro) C. Evaluating elements of the care partner experience in individuals who care for people with Alzheimer's disease across the severity spectrum. Neurol Ther. 2024 Feb;13(1):53-67. doi: 10.1007/s40120-023-00558-6

INTRODUCTION: Non-professional care partners play an important and often evolving role in the care of persons living with Alzheimer’s disease (PLWAD). We investigated two elements of the care partner experience, time and strain incurred by care partners providing care to PLWAD, across the severity spectrum.

METHODS: Data gathered from the Alzheimer’s Disease Patient and Caregiver Engagement (AD PACE) What Matters Most (WMM) study series were analyzed to determine how much time care partners spent providing care to PLWAD based on where the care recipients lived. Additionally, quantitative assessments of weekly hours providing care and the strain experienced by care partners were conducted using the UsAgainstAlzheimer’s A-LIST Insights Series survey, which included the Modified Caregiver Strain Index (MCSI). Finally, a targeted literature review was conducted to contextualize findings and characterize the existing literature landscape.

RESULTS: Care partners in the AD PACE WMM studies (n=139) spent significantly more hours providing care for recipients who lived with someone (mean±SD= 57.3±44.3 hours/week) than for recipients who lived alone (mean= 26.0±12.0 hours/week) (P=0.0096) or lived in assisted living/nursing home (mean= 23.6±14.4 hours/week) (P=0.0002). In the A-LIST Insights Series survey, care partners provided an overall mean 58.1±53.0 hours of direct care each week, with caregiving hours increasing by AD/AD-related dementias (ADRD) severity. Additionally, care partners for recipients with mild (n=14), moderate (n=111), and severe AD/ADRD (n=91) had overall MCSI scores of 9.0±3.8 (range, 2-14), 13.3±4.8 (range, 4-23), and 17.5±5.3 (range, 4-26), respectively, with higher scores suggesting greater care partner strain.

CONCLUSIONS: Persons living with AD require increasing levels of care along the spectrum of disease, and even individuals with early disease need care from partners. Early interventions that slow progression of AD and programs that improve family function may have beneficial impact on the experiences of care partners for recipients with mild, moderate, or severe AD.

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