A substantial amount of analysis has been dedicated to understanding the individual journeys of the “patient” and the “caregiver” in Alzheimer’s disease. This work has provided valuable insights, but a few priorities remain:

how is the lived experience journey in Alzheimer’s shaped by the complexities of agitation and other behavioral aspects of the disease;

how can insights from “social listening” analysis structure our understanding of these journeys;

how can we understand the dyad journey of the person with Alzheimer’s and the care partner as well as the interactions therein, particularly through the lens of agitation.

This project, “Mapping the Lived Experiences” recasts the Alzheimer’s journey to better reflect these priorities. We offer a visual interpretation of the journey with the rationale and proof points that underpin it.

“Mapping the Lived Experiences” prioritizes agitation and other behavioral aspects of Alzheimer’s as pivotal, enduring challenges on the disease journey. We frame the journey into two overarching phases: “the first loss,” which accounts for the more widely recognized symptoms of the disease, such as memory loss and declining cognitive function; and “the second loss,” which is characterized by agitation and behavioral aspects of the disease. We structure the journey around “milestone moments” – moments when both the person with Alzheimer’s and the care partner recognize that the disease has taken a major progression.

The “milestones” moment framework reflects an interpretive framework developed through an ongoing “social listening” research project. This social listening research allows analysis of the online conversation as it is happening in social channels and discussion boards, and it provides a poignant counterpoint to quantitative market research insofar as it illuminates the unfiltered, unmitigated experiences as articulated by the people who are learning in real-time to manage and live with Alzheimer’s. From social listening insights and analysis, our research posits that journeys – for both the person with Alzheimer’s and the care partner – are not linear, straight-line trajectories, but jagged, fragmented paths marked by “milestone moments” that shape thinking, understanding, and behavior.

“Mapping the Lived Experiences” offers a dyad visualization and articulations, as it fuses the journeys of the person with lived experience and the care partner together in the same visual space. This approach reveals how, over time, these journey relate, inform, and ultimately depart from one another. This dyad offers new insights into both the lived experience and care partner journeys.