关键词: 阿尔茨海默病, 寄养家庭照护, 主要家庭照顾者, 患病代价, 疾病管理, 质性研究

Abstract: Background　Alzheimer's disease is commonly seen in older people in China，in particular，its prevalence reaches 5.14% in those aged over 65 years，bringing huge management burden to primary family caregivers of the patient.It has received extensive attention worldwide.Objective　To investigate the sources of management burden and major solutions among primary family caregivers of the Alzheimer's disease patient，providing a basis for further development of the family management system for such patients.Methods　By use of purposive sampling，the primary family caregivers of 12 re-examined outpatients with Alzheimer's disease were recruited from Hangzhou Seventh People's Hospital and Zhejiang Provincial Hospital of TCM from September to December 2018 were recruited，and were interviewed intensively using a phenomenological approach.Colaizzi's seven-step analysis was performed to analyze the interview results.Results　Five subthemes of management burden sources of the primary family caregivers for the Alzheimer's disease patient were summarized as follows： lack of sufficient care knowledge to cope with the patient's complex conditions，social burden，emotional burden，physical burden and unappreciated care.For the solutions to the management burden，two themes of caregiver self-management strategies and patient family management strategies with six subthemes such as rational acceptance and active accommodation and so on arose.Conclusion　Medical professionals and others need to provide effective emotional support and adequate care knowledge for primary family caregivers for the Alzheimer's disease patient to help them form effective family management strategies.At the same time，the diversified long-term care system should be improved to reduce the burden of care.
Alzheimer disease；Foster home care；Primary family carers；Cost of illness；Disease management；Qualitative analysis