Narratives of Older Adults with Mild Cognitive Impairment and Their Caregivers
Galina Madjaroff, Helena Mentis · 2017 · Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '17) · doi:10.1145/3132525.3132554
Summary
This paper examines how the narratives — the stories people tell about their lives and experiences — of older adults with mild cognitive impairment (MCI) and their spousal caregivers shape and are shaped by technology in the home. MCI is defined as a noticeable decrement in cognitive functioning beyond normal aging that is not yet clinically classified as dementia, affecting close to 15% of individuals over 70, with approximately 10% per year progressing to dementia. The researchers argue that most assistive technology for cognitive impairment is designed through a medical model lens focused on deficit, decline, and surveillance — monitoring falls, tracking medication, and managing safety — which inadvertently reifies an illness narrative that erodes both the care recipient's identity and the caregiver's autonomy. Drawing on the gerontology literature on life narratives, the researchers contrast the illness narrative (which casts cognitive impairment as loss of self and frames care as burden management) with the biopsychosocial (BPS) narrative (which brings empathy, therapeutic relationship, and dialogue into a holistic approach to care). Semi-structured interviews were conducted with five married couples where one partner had a clinical MCI diagnosis, recruited through the Integrace Institute. Interviews were conducted jointly with both partners, focusing on daily life, caregiving experiences, and the role of technology in the home.
Key findings
Two dominant narratives emerged from thematic analysis. When discussing everyday life and the diagnosis, an illness narrative predominated: couples described loss of identity, role disruption, caregiver burden, lack of medical empathy at diagnosis, and a tension between autonomy and safety that constrained both partners. Caregivers took on "helicopter" supervisory roles, sometimes gatekeeping their partner's identity by redirecting uncomfortable conversations or taking over tasks the care recipient could still manage. However, when discussions shifted to technology use, a markedly different biopsychosocial narrative emerged. Technology — including iPads, Kindle, Roku, Facebook, games like Lumosity, and even online banking — was framed not in terms of illness management but as a means of connection with family, cognitive engagement, personal enjoyment, independence, and relationship enrichment. Caregivers actively sought games and activities their partners would enjoy; care recipients took pride in accomplishments like booking vacations online. Technology provided "me time" for caregivers and a sense of competence for care recipients. The key insight is that autonomy and safety are interdependent for both partners: the illness narrative created a zero-sum dynamic (more safety = less autonomy), while the BPS-centered technology narrative allowed couples to negotiate both simultaneously.
Relevance
This paper offers a powerful critique of how assistive technology design for cognitive impairment can inadvertently harm the people it intends to help. When technology is conceived primarily through a medical model — monitoring, surveilling, compensating for deficits — it embeds an illness narrative into the daily home environment, constantly reinforcing the care recipient's declining identity and the caregiver's burden. The finding that everyday consumer technology (not purpose-built assistive technology) better supported biopsychosocial wellbeing is a provocative challenge to the accessibility research community. For practitioners designing for aging and cognitive impairment, the paper provides a clear framework: technology should support the autonomy of both the care recipient and the caregiver, avoid paternalistic catch-all safety approaches that override individual choice, and create opportunities for relational support rather than merely managing decline. The study's methodology — interviewing couples together to capture the dyadic caregiving relationship — is itself a valuable model for user research with this population.
Tags: cognitive impairment · dementia · caregiving · aging · home-based technology · disability models · qualitative research · autonomy · biopsychosocial model