Factors associated with caregiver burden in early onset dementia: the LEAF study
Sun Min Lee, Hee Jin Kim, Na‐Yeon Jung, Kee Hyung Park, Hanna Cho, Yeshin Kim, Jae‐Won Jang, Heeyoung Kang, Jin San Lee, Sung Hoon Kang, Soo Jin Yoon, Hang‐Rai Kim, Kyung Won Park, Eunjoo Chung, Young Ho Park, Hyemin Jang, Jae Sung Lim, Geon Ha Kim, Jee Hyang Jeong, Seong Hye Choi, Su Hyun Cho, Seung Joo Kim, Jay Cheol Kwon, Juyoun Lee, Kyunghun Kang, Jaeho Kim, Hee‐Jin Kim, Si Eun Kim, Hyon‐Ah Yi, Ji Yoon Park, Eun‐Joo Kim, So Young Moon- Psychiatry and Mental health
- Cellular and Molecular Neuroscience
- Geriatrics and Gerontology
- Neurology (clinical)
- Developmental Neuroscience
- Health Policy
- Epidemiology
Abstract
Background
Early‐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.
Method
Caregivers 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).
Result
A 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).
Conclusion
This 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.