Higher Patient Activation Levels May Mitigate Alzheimer’s Caregiving Burden in Europe

OBJECTIVES: Patient activation (PAM) refers to an individual’s knowledge, skill, and confidence in managing their health, which is associated with better health outcomes. 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 in Europe by PAM levels.

METHODS: The EU (France, UK, Spain, Italy, Germany) 2021 National Health and Wellness Survey, an internet-based, cross-sectional survey of adults (≥18 years) was the data source for this analysis. Comparisons of caregivers’ four PAM levels (higher levels=higher activation), their socio-demographic and patient-reported outcomes were conducted using chi-square and ANOVA tests.

RESULTS: Among caregivers of patients with Alzheimer’s (N=1,199), 9.7% were PAM1 (n=116), 31.0% PAM2 (n=372), 39.7% PAM3 (n=476), and 5.9% PAM4 (n=71). Compared with PAM1, PAM4 caregivers had better SF-12 mental component summary scores (45.21 vs. 42.65, p<0.05). PAM4 had 1.4 times less work productivity loss than PAM1 (53.1% vs. 71.8%, p<0.05). PAM4 vs PAM1 were less likely to have visited an ER (36.6% vs. 61.2%, p<0.05) or had a hospitalization (33.8% vs. 56%, p<0.05). On the Caregivers Reaction Assessment scale, 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, visited the emergency room less, 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.