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
Is a Family Affair
University of Toronto | firstname.lastname@example.org
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.
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
September + October 2008
There are still very few services for people with
severe memory problems, but this is changing.