Field Evaluation of a Collaborative Memory Aid for Persons with Amnesia and Their Family Members
Mike Wu, Ronald M. Baecker, Brian Richards · 2010 · Proceedings of the 12th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS 2010) · doi:10.1145/1878803.1878815
Summary
This paper presents Family-Link, a collaborative memory aid designed through participatory design with people with amnesia (PwAs) and their families. The system was built as a shared calendar running on Palm Treo smartphones that synchronised events across all family members' devices via a central server. Unlike standard calendar applications, Family-Link was specifically designed for the collaborative nature of memory management in families affected by amnesia — caregivers could add events to the PwA's calendar, view other family members' schedules, and track the PwA's activities. The system was evaluated in a six-month field deployment with four families (two pilot, four in the main study) using an ABAB single-case experimental design, alternating between baseline phases using the Palm Calendar and intervention phases using Family-Link. Participants included people with amnesia resulting from stroke, ruptured aneurysm, temporal lobe resection, and hippocampal impairment. Data collection combined electronic logs of calendar interactions, face-to-face interviews, phone calls, and questionnaires administered at the end of each phase.
Key findings
Participants shared significantly more events during Family-Link intervention phases compared to Palm Calendar baseline phases. Mean shared events rose from 4.4 during baseline 1 to 13.6 during intervention 1, dropped back to 13.6 during baseline 2, then increased to 22 during intervention 2 — a statistically significant effect (F(1.43, 15.77) = 9.78, p = 0.003). Paired t-tests confirmed that intervention means were significantly higher than baseline means (p = 0.011 and p = 0.004). Qualitative findings revealed three important benefits: increased awareness of family members' schedules (PwAs could see caregivers' plans and vice versa), a greater sense of security for caregivers who could track PwAs' activities remotely, and reduced coordination effort — one caregiver reported that monitoring the shared calendar replaced constant phone calls every 20 minutes. PwAs and caregivers valued different features: PwAs rated the ability to interact with critical information (alarms, seeing completed events) most highly, while caregivers most valued viewing and adding to other family members' calendars. An important design implication was that PwAs should be allowed to actively manage and change their own information, not merely be passive recipients.
Relevance
This study makes a strong case that assistive technologies for memory impairment must be designed as collaborative tools for the whole family, not just individual aids for the person with the disability. The finding that shared calendar use tripled event sharing and reduced caregiver phone calls has direct implications for modern smartphone-based care coordination. The research also highlights a tension in assistive technology design: balancing the caregiver's need for oversight and security with the PwA's autonomy and dignity. For accessibility practitioners, the participatory design methodology — involving both PwAs and family caregivers throughout — provides a model for designing technology that addresses the needs of an entire support ecosystem rather than a single user.
Tags: amnesia · memory aid · collaborative technology · caregiving · participatory design · cognitive disabilities · assistive technology · family support