OBJECTIVES: Patient activation (PAM) refers to an individual’s knowledge, skill, and confidence in managing their health, which has been shown to improve health outcomes. It is widely understood that caregivers of patients with Alzheimer's carry substantial burden however, little is known about how caregiver’s PAM levels may mitigate their burden. This study compares the burden of caregivers of patients diagnosed with Alzheimer’s by PAM levels.

METHODS: This analysis used the US 2022 National Health and Wellness Survey, an internet-based, cross-sectional survey of adults (≥18 years). Comparisons of caregivers’ PAM levels (higher levels=higher activation), their socio-demographic and patient-reported outcomes (RAND-36, Work Productivity and Activity Impairment, Caregiver Reaction Assessment Scale [CRA], healthcare resource use) were conducted using chi-square and ANOVA tests.

RESULTS: Among caregivers of patients with Alzheimer’s (N=1608), 8.5% were PAM1 (n=138), 10.4% PAM2 (n=167), 49.7% PAM3 (n=799) and 7.9% PAM4 (n=127). Compared with PAM1, PAM4 caregivers had better RAND36 physical (38.83 vs. 35.07) and mental health (38.65 vs. 32.87) composite scores (both p values<0.05). PAM4 had 1.4 times less work productivity loss than PAM1 (47.2% vs. 66.4%, p<0.05). Additionally, PAM4 vs. PAM1 utilized less emergency room visits (mean=1.8 vs. 2.34, p<0.05). On the CRA, PAM4 scored higher on self-esteem and lower on health problems even though they scored higher on disrupted schedule and lack of family support subscales (all p values <0.05) relative to PAM1.

CONCLUSIONS: Study findings demonstrate the substantial burden among caregivers of patients with Alzheimer’s, however, higher patient activation mitigates some of the burden. Caregivers with higher PAM levels had better quality of life, work productivity, had less emergency room visits, and scored higher on self-esteem and lower on health problems. There is an opportunity to meet the needs of the Alzheimer's caregivers’ population with clinical assessments and complex interventions tailored to their activation level to help reduce their burden.