"The Only Thing Certain About This is Uncertainty": Exploring Informal Care Coordination Practices Among Older Adults with Mild Cognitive Impairment

Abstract

Older adults aging in place often have informal support systems to help them maintain independence and quality of life. As they age, many older adults deal with the onset of Mild Cognitive Impairment (MCI), which introduces a new set of functional and cognitive changes that affect their ability to manage daily routines. The approach to arranging and coordinating support for everyday activities for older adults with MCI varies across informal care networks, but typically involves a primary care partner and a network of family, friends and others. In this paper, we present a thematic analysis of in-depth interviews with older adults with MCI and their primary care partners to gain a holistic picture of their day-to-day lived experience. Our analysis uses a multi-dimensional lens of people (“who”), activities (“what”), and tools (“how”) to reveal insights about the nature of informal care coordination in MCI. Our results characterize informal care for MCI as a set of complex orchestration tasks by a primary care partner that support the practical, cognitive and emotional needs of the diagnosed individual and mediate the involvement of the broader care network. We uncover that coordination is not solely a matter of logistical organization, but also a deeply relational process shaped by negotiation with technological tools and evolving roles. Through this work, we reframe care coordination for MCI as a distinct and underexplored design space, one that demands systems capable of scaffolding autonomy, adapting to shifting capacities, responding to socio-emotional needs, and fostering collaborative caregiving.