The primary source of suffering for people with dementia is loneliness. While we are inclined to attribute their emotional and social isolation to changes occurring in their brains, the more decisive factor in their estrangement from companionship occurs in our imaginations. Upon hearing that someone we know “has dementia,” we are apt, however unconsciously, to imagine that something about that person is categorically different now. Whereas before he or she was our friend, neighbor, colleague, or spouse, he or she is now our friend, neighbor, colleague, or spouse “with dementia.” The label “with dementia” affects the way we attend to the person with whom we associate it. We begin attending to him or her in ways that are increasingly functional and decreasingly relational. We look for signs and listen for symptoms so that we can deal with a situation. And while that kind of attention can be helpful in many instances, if that is the lion’s share of the attention a person receives, he or she will cease to feel that he or she belongs and matters.
Because of the loss of that feeling, millions of people—our friends, neighbors, colleagues, and spouses—are suffering in a way that no medicine will ever alleviate. The hope there is in this vastly under-explored dimension of the experience of dementia lies not in technology finally but in the human spirit. Here too is a frontier calling out for explorers and pioneers—for people willing to attend to their friends and loved ones with dementia free of the assumptions that label promulgates. Learning how to listen, especially to someone who cannot communicate “normally,” is an act of spiritual courage. It is also an act of love.
Memory Bridge is a community of people around the world taking up the challenge of learning how to listen to people with dementia in the absolute unique ways that each particular person with dementia needs and desires. We are a community of people who are learning, from people with dementia, what community, communication, and communion really mean.