Factors associated with caregiver burden in early onset dementia: the LEAF study

Abstract

AbstractBackgroundEarly‐onset dementia is often predicted to have a greater care burden than late‐onset dementia. Indeed, previous studies have reported that caregivers of early‐onset dementia suffer more than those of late‐onset dementia. We explored the factors that determine care burden in early‐onset dementia.MethodCaregivers whose patients participated in a longitudinal study of early onset dementia and family members (LEAF) were asked to respond to questionnaires regarding caregiver features and care burden such as CAS‐K (Korean Version of Caregiver Activity Survey), ZBI (Zarit Burden Interview), and SF‐36v2® (Short‐Form Health Survey 36 version 2). Correlation and linear regression analyses were conducted to clarify the factors affecting care burden, using commercial software (SPSS 23.0;SPSS Inc. Chicago,IL,USA).ResultA total of 255 caregivers (54.5±25.3 years old, 54.9% female) were divided into three groups depending on the clinical diagnosis of the patients they cared for (EOAD 181; FTD 53; other EOD 21). There were no statistical differences of demographic characteristics and care burden related variables among three groups of caregivers. The general burden for caregivers and time spent in caregiving were higher in patients with shorter education years, lower mini‐mental state examination(MMSE) scores (‐0.381, p<0.001), higher clinical dementia rating(CDR) (0.359, p<0.001), higher CDR sum of boxes (0.418, p<0.001), decreased level of activities of daily living (ADL, basic ‐0.334, p<0.001; instrumental 0.527, p<0.001), higher geriatric depression scale (GDS, 0.245, p<0.001) and higher body mass index(BMI, 0.149, p<0.05). Caregivers with a high Beck depression inventory(BDI) (0.218, p<0.001) spent more time for caring patients. The general care burden was greater in younger caregivers (‐0.142, p<0.05) and in caregivers with lower average monthly income(‐0.166, p<0.001), decreased physical function (‐0.142, p<0.05), poorer mental health (‐0.150, p<0.05), and more physical/emotional role limitation (‐0.464, p<0.001).ConclusionThis study is expected to have implications in that it also reviews the economic status of caregivers and ongoing personal and social changes according to the care burden. Demographic and clinical factors of patients and caregivers predict care burden in early‐onset dementia. This suggests that it is possible and necessary to attempt to reduce care burden through adjustment and support for related factors.