Defining Informal Caregiving and Caregivers for Persons Living With Dementia

To present an overview of current definitions of informal caregiving and informal caregivers for persons living with dementia (PLWD). We suggest definitional criteria of informal caregiving for dementia caregiving research that incorporate current dementia caregiving policy and programs.

A multi-pronged review and analysis was performed of the scientific literature from 2014 to 2024 and online documents from professional, public advocacy, and government organizations for definitions of informal caregiving and applications to informal caregiving of PLWD.

Definitional inconsistencies in informal caregiving center primarily on parameters around compensation ("unpaid") and relationships that are not in keeping with state, federal, and long-term care insurance programs that provide financial assistance, compensation, or stipends for caregiving. These inconsistencies extend to public policy and advocacy websites as well as peer-reviewed dementia and family caregiving literature.

In general, contemporary applications of the term "informal caregiver" for PLWD include relatives and non-relatives (kin/nonkin) who provide a broad array of assistance to PLWD. Informal care activities may be provided in residence with or near PLWD or at a distance. Definitions and inclusion criteria for informal caregiver should specify relative or unpaid non-relative, having some prior relationship or social ties to the PLWD, and not receiving compensation for care for the PLWD from a caregiving institution. [Journal of Gerontological Nursing, 50(12), 41-45.].