The elderly couple arrives almost an hour late. “We are sorry, we tried to get here in time.” My patient's husband is catching his breath. “We are not used to driving in a big city.” His wife is looking around, as if she is trying to find something familiar to hold on to in the main lobby of our memory clinic. She is in her early 80s, a fragile person, and the first of several patients scheduled today to learn about the results of the diagnostic procedures they underwent.
Minutes later my patient and her husband are sitting in my office. Before I can start, something slips out of his pocket. It is an appointment book. A few loose notes are falling on the floor, and I can see the two open pages. There is just one word: my name. It is the only entry for the entire week.
“We did not sleep well last night, Doctor,” he says. “We were wondering what the results would be.”
He reaches for the hand of his wife. I am beginning to feel uncomfortable. This schedule consisting only of my name on a blank page seems to reflect expectations. For the first time since my early months in the department, I have difficulties finding the right words. Nothing seems to sound appropriate.
“Your memory is not as good as it should be.”
Her husband nods his head in agreement, but I am struggling. Even this simple statement makes me feel like I am saying the truth and being dishonest at the same time. Her neuropsychology data are showing severe impairments in almost every cognitive domain.
“Does it mean it's Alzheimer's?” her husband asks.
Should I say that it is the most probable diagnosis? Would it be helpful for them to hear that this is not just about memory? Would any discussion about diagnostic specificity change her treatment options?
“Yes, it is.”
My patient does not show any emotional response. Over time I am losing her attention. She is getting slightly agitated, although her husband's presence still seems to comfort her.
“Your husband's support is more important than anything else. Do you often need his help?”
She looks at him and smiles.
“We are OK,” he answers, smiling back. We both know that it is not true. There are no children, no other relatives. They may soon need professional assistance.
On my way home that evening, I reflect on how with all of that day's patients, Alzheimer's was the only diagnosis I had to talk about. Given its high prevalence, developing a routine procedure for discussing this disease would seem to be a simple consequence: summarize the individual clinical symptoms; present the neuropsychology, MRI, and laboratory testing results; use specific wording optimized to enhance understandability before mentioning the diagnosis; then discuss implications and therapeutic options. But how many patients may have difficulties finding sleep after this discussion because of what lies ahead? Thinking about my first patient this morning, about how she and her husband may feel tonight, I realize that my difficulty in finding the right words was because there are no routine procedures.
