EDITOR Allison Druin [e-mail]

As all of us know, whether we are seven or 77, each of us can have challenging needs when in good health or when we are suffering from any number of ailments. The reality of understanding users is that health issues can color our lives in ways we might never expect. In this issue’s forum, Mike Wu discusses the pressing needs of adults with severe memory impairments and what can be done to support them and their families through technology. What this article reminds us is that even when we consider our older or younger users, we must also consider the people that live with them. Their care-givers, whether they be grown-children or parents, can play a critical role in the lives of family members at any age. This forum on life-long interactions celebrates not just one age of user, but all ages working together to make life a little better for all of us. —Allison Druin

Memory Impairment
Is a Family Affair
Mike Wu

University of Toronto | [e-mail]

Amnesia is often used as a cinematic device to advance a movie’s plot. Heroes lose their memories after a bump on the head, only to recover them following a subsequent bump. Yet what makes for popcorn-filled summer blockbusters rarely parallels how amnesia is truly experienced.

Before I began designing aids for people with severe memory problems, I couldn’t begin to imagine what having amnesia would be like. Everyone forgets things from time to time, but how is having amnesia different? Through working with real people suffering from amnesia, I quickly learned the harsh answer. Amnesia deprives individuals of the ability to remember new information, leading to a profound forgetfulness. A person with amnesia will appear perfectly fine and can carry on an interesting conversation with you, but the next time you see them, they won’t remember the conversation— or even who you are. Fortunately, those who suffer from the debilitating effects of amnesia are not alone in their fight against it.

While working in this domain over the past few years, I’ve been struck by the countless times family members step up to provide support for loved ones suffering from amnesia. Yet breakdowns in this support can be catastrophic. Consider the example of Fred, a man with amnesia who is at a doctor’s appointment by himself. When the appointment ends early, Fred does not remember that his daughter intends to pick him up and decides to walk home, not realizing that he does not know the way. Fred then gets lost and his family members find themselves in a situation where

it is not just Fred who’s grasping for information— they all are.

Amnesia

For much of the last century, researchers conceived memory to be a single entity that was either intact or damaged. In the case of a damaged memory, the predominant view was that the patient was untreatable. No one tried to rehabilitate for memory deficits, and there were few services available for sufferers of permanent memory loss. Patients with amnesia often had to deal with the issues on their own.

Two decades ago discoveries in neuroscience and psychology led to a better understanding of amnesia. Amnesia results from an injury to a structure in the brain responsible for processing new memories; this injury can occur following a heart attack, stroke, aneurysm, cyst, or encephalitis.

What is interesting about amnesia is that it does not affect a person’s memories before the brain injury, nor does it impair other cognitive abilities such as intellect, problem solving, and communication. Despite this, persons with amnesia have extreme difficulty doing basic things like remembering an appointment. Their inability to recall what they need to do from one moment to the next typically results in their being unable to return to work.

September + October 2008

Challenges

There are still very few services for people with severe memory problems, but this is changing.