Over the past thirty five years, there have been many research studies regarding service interventions, surveys and service delivery data on unpaid family caregivers. Much of what we know and practice in the field of caregiver services and supports result from these efforts.
Indeed, Family Caregiver Alliance (FCA) has been in the forefront of service development, delivery and evaluation of service systems since 1979. FCA has always combined services, research and policy to provide direct support to families, document service delivery and outcomes and advocate for changes in policies and practices to benefit unpaid caregivers.
The majority of these efforts have used standardized measures – now over 200 available according to FCA’s latest update (2012) – that rely largely on retrospective data gathered from unpaid family caregivers. While use of these measures provides a baseline for evaluating effects of different interventions and critical information for social work practice, they do not provide insight into the daily lived experience.
What we know about the extent of care in the home has grown during this time and has extended beyond ADLs and IADLs to include medical tasks undertaken by almost half of caregivers. We know that families are struggling with behavior and social issues related to cognitive impairments that are present 24/7. But we don’t know the extent of daily tasks and related stress for each because we have never measured these items for analysis.
These are just some of the reasons Family Caregiver Alliance is pleased to partner on the Atlas of Caregiving, a project being supported by the Robert Wood Johnson Foundation. At this point, the technology is starting to become available through wearable devices that hold the promise of capturing detailed information about daily activities and responses. While this project is in pilot test mode, the selection of families can be made representative through factors of intensity of care, diagnosis of care recipients, age and gender of family caregivers (and care recipients), ethnicity and other issues. With limited numbers, there can be no sweeping generalizations but it is an important first step in more fully understanding the lived experience.
As care is moved from facilities to the home community, unpaid family caregivers and extended family and friends, will have some, if not all, responsibility for care. What will be needed is information to better target services for families and to better advocate for unpaid family caregivers and their relatives. And as we seek ways to more efficiently provide assistance in the home through the use of technologies, better information is needed for developers of these tools so they can truly meet the needs of caregiving families.
A great team of advisors has been assembled to provide guidance, advice and practical assistance with the project. We look forward to an exciting year of new challenges, insights, and information that will be generated by the Atlas of Caregiving project.