Overlooked threats to person‐centered dementia care: An imperative to explore the family terrain

Background Adoption of person‐centered care practices for older adults has increased considerably across the United States in recent years. This momentum is due largely to the dissemination of evidence‐based models including those delineated in both the Alzheimer’s Association® Dementia Care Practice Recommendations (2018) and the Age‐Friendly Health System initiative (2018). Both frameworks call for health care providers to work collaboratively with patients and their families to deliver care in accordance with what matters most to the patient. The role of family, particularly in person‐centered dementia care, generally involves informing, interpreting, and advocating for the patient. In healthy, well‐functioning families with strong attachment bonds and clear, open communication, the family is likely to know the patient’s wishes and to act in their best interest. In fractured, wounded families, however, this is less often true. Limited knowledge and understanding of the patient’s family dynamics preclude consideration of the complex, interdependent nature of family relationships and how those relationships influence not only the patient information that family members share, but also how they interpret information that gets exchanged with health care providers, and how the dynamics shape the goals of care for which families advocate. Family dynamics also influence whether and how care plans are implemented, which inevitably affects patient quality of life along with health care outcomes and costs. Evidence suggests that patients with dysfunctional families often require more careful monitoring regarding care compliance. Family history and relational dynamics pose threats to effective delivery of person‐centered care in a number of important ways including, for example: whether a family member will commit to step into the caregiver role and to what extent; whether, how, and when advance care planning takes place; and whether interdependent family relationships create power dynamics that lead to misrepresentation of the patient’s wishes, elder mistreatment, or family violence. This presentation will provide evidence to support a call for person‐centered care approaches to incorporate screening and assessment of patient and family relationship history as a means to better ensure the delivery of person‐centered dementia care that promotes safety as well as compliance with legal and ethical standards.