The needs of informal caregivers and barriers of primary care workers toward dementia management in primary care: a qualitative study in Beijing

BACKGROUND: Informal caregivers of people with dementia in Beijing are increasingly called upon to provide home-based care for their patients due to the increasing number of dementia patients and the shortage of standardized institutional solutions of care for patients in China. This study aimed to clarify the needs of informal caregivers and barriers of primary care workers toward dementia management in primary care in Beijing to provide references that may help to improve the care and services provided to individuals with dementia and their family caregivers residing in urban China. METHODS: A mixed-methods approach was used in this study. We performed individual in-depth interviews with 10 informal caregivers. Moreover, we carried out focus group interviews with 29 primary care workers. Content analysis was used to separately identify themes and codes. Discrepancies were discussed until final agreement was achieved. RESULTS: Three themes representing the core attitudes of informal caregivers and primary care workers were identified: care knowledge and skills, psychological counseling, and collaborative management. Most primary care workers believed that the management of dementia patients in primary care was necessary. However, due to the heavy work load and different medical specialties involved, these workers were unable to manage it. CONCLUSIONS: Professional training focused on dementia for primary care workers should be strengthened. At the same time, the establishment of a community-based dementia team management model that includes specialists, community health service centers (CHSCs), and community committees should be explored.