Development of a self-management support program for caregivers of relatives with dementia in Shanghai

The purposes of this study were to develop a caregiver-education booklet and to elicit intervention strategies for a self-management support program for caregivers of relatives with dementia in Shanghai. Two focus groups with 32 eligible caregivers were conducted to clarify the knowledge and information about the scope and main points of, as well as the barriers to and support for caregiver self-management. Content analysis revealed that the main challenges caregivers faced were a lack of reliable and accessible information about dementia care, frustrations related to communication with the care recipient, disturbances in daily routines, and unfamiliarity with and/or difficulty in balancing the caregiver's own health needs. Access to individualized and reliable instruction and/or group support were the major types of support the participants expected for their self-management. Based on the findings and relevant literature, an illustrated caregiver-education booklet was developed and the intervention strategies were also discussed for the program.