 A logbook of an individual with amnesia. The spouse highlighted the tasks to indicate which ones she felt were important.

 

 Everyone participates equally by writing their schedules onto a family calendar.

September + October 2008

 A caregiver copies the appointments of her relative into a second day planner and keeps it with her to know what her relative is doing.

Memory-Link is a unique outpatient service offered by Toronto-based Baycrest, a geriatric care center. Memory-Link helps to assess, support, and train the use of memory aids for adults with amnesia. Although they may not be able to recall how, a person with amnesia can acquire new skills (such as riding a bicycle or playing a musical instrument) through painstaking repetition and practice. This is because amnesia spares their procedural memory system.

A number of years ago, I began collaborating with clinical researchers at Memory-Link to design a new memory aid. While working closely with amnesiac clients, I learned that from time to time they completely forgot where they were, who they were with, and what they intended to do. When this happened in public places, it resulted in anxiety and panic—not only for those with the memory problem but also for their family, who worried that their relative would get lost. To address this, I gathered a design team that included persons with amnesia. We developed an orienting tool that enabled users to instantaneously access key information to help them remember where they were going and what they were doing [ 1]. This tool, like many other external memory aids, was designed for individual use. However, my experiences since the orienting tool suggest that an individual focus is not sufficient. Family members often play a crucial role in the day-to-day functioning of individuals with cognitive deficits.

There are a few memory aids that involve caregivers (e.g., NeuroPage) [ 2], but they typically facilitate the flow of important information in one direction. Caregivers take on the role of inputting appointments, while persons with cognitive impairments primarily act as recipients of such information. A more powerful vision may be to enable a bidirectional flow of information—also allowing persons with cognitive impairments to actively exchange information they find relevant with their caregivers. Unfortunately, it is hard for designers and practitioners to develop such tools, because not much is known about how families coping with cognitive impairments work together.

interactions

Families Collaborating to Combat Memory Impairment I teamed up with colleagues from my university to carry out a field study of individuals with amnesia and their families [ 3]. Through observing them in