Perspectives on Disease Burden Among Informal Care Partners of People With Mild Cognitive Impairment or Dementia Due to Alzheimer's Disease: A Real-World Survey

OBJECTIVES: To evaluate the characteristics of informal care partners (CPs) of patients with mild cognitive impairment (MCI) or dementia due to Alzheimer’s disease (AD), and the level of burden experienced, as reported by CPs.

METHODS: Data were drawn from the Adelphi Real World AD Disease Specific Programme™, a cross-sectional survey, with retrospective data collection, of CPs of patients with MCI or dementia due to AD conducted in France, Germany, Italy, Spain, the United Kingdom (UK), the United States (US), and Japan from December 2022 to March 2024. CPs reported sociodemographic characteristics and their experiences caring for the patient, including level of burden experienced via Zarit Burden Interview (ZBI; 0–88 scale, higher scores indicate greater burden). Analyses were descriptive and sample size varied among variables.

RESULTS: Overall, 768 CPs of patients (France n=88; Germany n=155; Italy n=68; Spain n=176; UK n=37; US n=99; Japan n=145) completed the questionnaire. Overall, CPs had a mean (standard deviation; SD) age of 61.1 (14.2) years (n=757/768), 65.7% (n=501/763) were female, and 66.3% (n=501/756) lived with the patient. Of the 758 CPs who stated their relationship with the patient, 42.4% reported to be their child, and 41.6% their partner/spouse. Amongst the 747 CPs who reported their employment status, 34.3% were not working due to retirement, 29.7% were working full-time, and 15.1% were working part-time. Overall, 712 CPs reported a mean (SD) ZBI score of 36.5 (16.5), on aspects including feeling stressed, feeling the money will not be enough to cover the expenses, feeling they do not have enough time for themselves.

CONCLUSIONS: Patient care falls primarily on the family. ZBI results show that CPs experience a mild-to-moderate care burden. However, it is important to identify areas of struggle or need for CPs so that relief strategies can be implemented, thus benefitting both CPs and patients.