In Alzheimer's Disease, Maintaining Connection and 'Saving Face'

Part one in a series on how people with neurologic disorders open and utilize new channels of expression

I've decided that all older men with gray beards must look alike, because each week I am mistaken for someone else. But, if I were to shave my beard - which I have worn for over 40 years - I believe that my friends and colleagues would fail to recognize me. I would be a different person to them because of this small, physical change.

If such a small change affects the way people see me, then the larger mental changes that Alzheimer's patients experience must truly and deeply change the way their loved ones see them. Dr. Daniel Potts, a neurologist at the University of Alabama, has begun studying the concept of "saving face" and preserving the "person" in people with dementia.

Dr. Potts' father, Lester Potts, became an acclaimed watercolor artist after his Alzheimer's diagnosis. He had lost his verbal abilities but could express his feelings through his art. This bolstered his retention of self-worth and dignity. His paintbrush let him bypass the part of his brain that Alzheimer's blocked, and communicate in a new way.

But before we find out more about art and Alzheimer's patients, let's go back to the "face" part of saving face for just a moment.

How is it that most of us instantly recognize someone before they utter a sound? How can we can pick a certain individual out of a large group photo? Large portions of our brain are dedicated to facial recognition and interpretation. What we see may trigger whole sets of emotions, memories, feelings, sounds and even smells. A picture of my grandfather triggers the wonderful aroma of his ever present half-chewed-half-smoked cigar. I can't help but smile when I see his face.

We automatically interpret others' facial expressions, but as people age or develop neurologic disorders like Alzheimer's or Parkinson's disease, they lose their familiar range of facial expression. We look at or talk to our loved one and we no longer see what we saw before. People with Alzheimer's disease not only lose verbal abilities, but also lose the ability to truly express their thoughts and emotions with their faces. In turn, we lose the ability interact with them the way we did in the past.

So, how can we learn what lies behind their eyes? Has the light gone out? Dr. Potts insists, emphatically, "No." He says, "We have to assure ourselves that our loved one is still with us, even though they don't always act like themselves. We do this by meeting them in their present-day world. We have to be open to their new ways of communicating, and help them find novel avenues for this expression."

We tend to preserve a mental image of the person as they were prior to their illness, the way we've known them our whole lives. Think about when you reunite with someone you haven't seen in 20 years. Before you meet with them, you have an image of them from 20 years ago frozen in your memory. You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing. As our parents age, we continue to see them as the people that we love and in the roles that they played in our lives in the past -- strong, supportive, and knowledgeable.

On top of these innate feelings, we ground so much of our adult identity in our vocational accomplishments that without them, many of us lose all personal identity. Of course, we don't want to be known only for our prior achievements. We want to be respected and admired for who we are now and what we contribute to our friends, families, and society. Those with Alzheimer's are no different.

Dr. Potts insists that when illness strikes we must validate the person in the present and "learn to love and appreciate who they are in their now." The person with Alzheimer's disease will not return to who they were so we must meet them and accept them in their new role. Dr. Potts tells family members and health care professional that they must:

• Discover who the people were by taking the time to learn their story.
• Appreciate who they are now and see them as more than their illness.
• Demonstrate for them their current worth.
• Help them preserve their personhood and dignity.
• Find channels for expression that bypass those blocked by their disease.
• Help them "save face."

We must develop new "languages" to help those with cognitive disorders communicate with us, for they still have much to say. Dr. Potts asserts that people with Alzheimer's disease are still "rich" with thoughts and ideas, but need new channels to express those thoughts and ideas. His father used water colors while others have used music, poetry or dance. Rather than park them in front of a television, we must explore alternative channels of communication that bypass the blocked channels in their brain. Dr. Potts tell us that we must provide the tools that provide an environment that focuses on the person, not the disease, and offer a variety of opportunities for expression that bypass the person's disability.

When faced with a person with a spinal cord injury or amputation, their doctor or therapist focuses on their strengths and builds upon their "abilities." Unfortunately, in progressive neurologic disorders, like Alzheimer's disease, we are more likely to focus on the eventual outcome of the disease and not on the person's reservoir of abilities. Dr. Potts tells us that we must recognize "that personhood still exists, even in the presence of Alzheimer's disease and assist the person in saving face."