Researcher turned care partner: Perspectives on lived experience of navigating ADRD

Abstract

AbstractThis presentation will illustrate the lived experience of a health services researcher who was a care partner for her husband with ADRD. This couple engaged for 11 years with an academic Alzheimer’s center for clinical management and participation in several clinical trials. This care partner was motivated to care out of love and concern, learning by doing and taking on unfamiliar responsibilities. Few people understood the personal time commitment and challenges, and the hours of vigilance to ensure her husband was safe, healthy, and living at home with dignity. She was challenged to maintain her scholarly career.The needs of care partners are often unmet. Caring for a family member can lead to psychological and physical distress. Personal experience highlighted the need for information about ADRD progression, financial and legal advice, routine and respite care, and psychological support. Support programs did not address the advanced stages of disease. COVID‐19 reduced supports and increased isolation. This care partner learned to effectively support and care while navigating the Alzheimer’s disease delivery and research systems, and identifying relevant resources to support the family dyad. Since the husband’s death, the researcher has refocused her research agenda to study strategies, policies and mechanisms to enable care partners, clinicians and researchers to coproduce care systems that better support care partners.This researcher’s experience highlights the need to recognize and value the essential role the care partner plays in supporting the person with ADRD. Care partner resources are frequently determined and designed by expert health and social service providers. Person‐centered health initiatives are enhanced through coproduction where patients, partners, and clinicians develop, deliver, assess and improve the relationships and actions that contribute to the health of the person with ADRD.Coproducing care and support for a person with ADRD requires actively engaging the care partner to represent their personal dyad, and inviting them to articulate the resources, services and supports they need to navigate their journey as a care partner that will complement clinical care. This presentation will frame the context for the three presentations that follow, illustrating approaches to effectively coproducing ADRD care.