Family Members Experiences of Being Identified as a Family Caregiver to a Person Living With Dementia

Globally, family members account for the main source of caregiving for people with dementia in ordinary housing. Providing informal care may have negative health consequences for relatives such as stress, reduced quality of life and depression. According to Swedish legislation, the social services should provide support to those who care for a relative who is elderly, has a long-term illness or a disability. However, it is not clear how family caregivers can be identified to be provided support. Identifying family caregivers is a challenge for social services and the healthcare system, especially since many family members do not primarily identify themselves as caregivers. This study describes family members' experiences of being identified as a family caregiver to a person living with dementia. Individual semi-structured interviews were conducted with 21 family caregivers, and an inductive content analysis was used to analyse the data. The analysis developed the main category "Personal resources and random inclusion during unsystematic processes", and the three generic categories "Self-identification as a caregiver", "Identified before cognitive assessment" and "Identified through cognitive assessment", illuminates the family members' experiences of being identified as a family caregiver. This study highlights that the identification of family caregivers to people living with dementia is often fragmented, inconsistent and dependent on individual circumstances rather than systematic processes. The identification was influenced by organizational factors, such as limited cooperation and collaboration between the healthcare system and social services. It also concerned the family caregivers' previous experiences from healthcare and social services, knowledge of Swedish legislation, and personal resources such as ability to navigate complex systems, as well as the psychological capacity to seek help during a period of uncertainty and emotional strain. The findings underscore the need for more proactive, preventive and coordinated approaches across the health care system and social services.