The burden of caring for dementia patients: caregiver reports from a cross-sectional hospital-based study in China

Abstract

The impact of dementia care on caregivers' professional, personal, emotional and social well-being was measured in a cohort of 1,387 caregivers in seven regions across mainland China, using a Chinese version of the Zarit Burden Interview (ZBI) and four supplementary questions. Caregivers also estimated costs of care and medical resource utilization. Caregiver burden was generally low to moderate. Dementia care had the greatest impact on caregivers' professional lives, with 25.5% reporting a reduced work schedule in the past month. Lost work time was greater for caregivers of patients with previously diagnosed dementia than for those with newly diagnosed dementia. Average monthly out-of-pocket costs of dementia care exceeded national average monthly incomes of rural and urban residents. These findings highlight the obstacles facing the country with the fastest-growing elderly population in the world.

Keywords::

• caregivers
• cost of illness
• dementia
• personal satisfaction
• quality of life

Acknowledgements

The authors thank study principal investigator, J Jia, and the research team at Xuan Wu Hospital and Capital Medical University. Additional thanks to R Kaminsky, who contributed to the study design and the development of the caregiver questionnaire instrument.

Financial & competing interests disclosure

B Tang, E Harary, R Kurzman, J Mould-Quevedo, S Pan, J Yang and J Qiao are Pfizer employees; B Tang, J Mould-Quevedo, S Pan and J Qiao additionally own stock in Pfizer. J Yang, R Kurzman and J Qiao were involved in study design and also developed the supplementary caregiver questionnaire instrument. All authors were involved in the collection, analysis and interpretation of data as well as the writing of the manuscript and the decision to submit the manuscript for publication.This study was sponsored by Pfizer, Inc.

Editorial and medical writing support was provided by Caroline J Hoang at ACUMED (NY, USA) and was funded by Pfizer, Inc.

Key issues

• • China has the fastest-growing elderly population in the world and will soon have as many people with dementia as the rest of the developed world combined.

• • This multicenter, cross-sectional, hospital-based study in China demonstrates that caring for demented patients has a profound impact on the caregivers' professional lives, particularly in lost work time.

• • The average financial costs of dementia care exceeded national average income for both rural and urban residents. The highest expenses were related to paid housekeepers, hospital care and antidementia drugs.

• • Most respondents said that caregiving had little impact on their well-being and was not a severe burden; however, this may reflect cultural expectations about family responsibilities.

• • These findings should be considered when allocating resources as China's healthcare system and infrastructure are expanded to meet the needs of the senior population.

Notes