We use the same definition of family caregiving today that originated in 1997. 30 It’s also a definition about the caree. A better definition shifts the complexity of experience to the family caregiver.
AARP and the National Alliance for Caregiving define family caregivers as “adults providing ongoing care to adults or children with complex medical conditions or disabilities.”
That same definition of family caregiving has been used for nearly 30 years, since the first national caregiving study in 1997.
It’s a definition about the caree. The complexity belongs to the caree.
When we shift the definition to how an individual manages a complex experience, the complexity belongs to the family caregiver. That’s a different definition and it produces entirely different research.
For nearly 30 years, researchers have been collecting data about the caree and calling it caregiving research. The family caregiver was the reporting tool, not the subject.
Our Non-Reimbursed Family Caregiver Savings Calculator asks family caregivers about their own experience across 8 categories and 49 types of caregiving: Assessing, Advocating, Communicating, Deciding, Managing, Planning, Providing, and Sustaining.
325 family caregivers have responded. 77% selected 7 or more categories. The average respondent selected 32 of 49 care types.
That’s the complexity of the family caregiver’s experience. It has nothing to do with the caree’s diagnosis.
When we define the complexity of a family caregiver’s reality — their worries, their decisions, their stress, their definition of peace of mind — we finally collect data about a caregiving experience.
That’s caregiving research.
That’s not the research that’s been happening.
We’d love to know more about your experience and your value. Calculate your caregiving value.
