“You’re the med student right? We have a new patient for you when you’re ready,” the night call resident informed me as I clicked my pen and pulled a blank piece of paper from the printer tray to jot notes. She began, “Ms. Jones is a 70 year old woman with dementia, but she’s really pleasantly demented. You’ll like her.” Wow, I thought. I hadn’t realized there were stages of pleasantness in dementia.
Ms. Jones appeared thin and weak, but a colorful freshly knit hat covered her wispy white hair. As I knocked on the door and asked how she was doing today, she flashed a bright smile with big white teeth and tossed back a lively retort, “Never been better, but where am I?” I let her know why she was in the hospital, and she replied, “Oh now I see…” then proceeded to flirt with me, “My, I’d sure like to stroke that handsome beard of yours,” at which we both laughed. I took a clinical history, which was limited by her cognitive abilities, examined her, and, before I left the room, asked if she had any further questions. She said, “Oh one more thing, where am I again?” and she made the same borderline risqué comment about my beard.
Whenever I was in the room with Ms. Jones, her optimism and joviality shown through. When I needed her to sit upright so I could place my stethoscope under her hospital gown, she cheerily obliged. When we chatted about the baseball game on TV, she joked, “I don’t care much for baseball, I like basketball!” Much of our time together in the hospital room was spent with smiles on our faces.
Yet underneath the compensatory smiles, Ms. Jones suffered from significant dementia. Every time family members walked into the room, she was unable to recognize them. She did not know the date or her location, and one minute after receiving her daily knee medication, she requested the medication just given to her. It was true; she was pleasantly demented.
Dementia has a predilection to strike specific zip codes of the brain, targeting cognitive functions like memory or disinhibition, tasks associated with hippocampus and cerebral cortex, for example. Yet dementia can also spare parts of us like humor or the ability to play the piano. The personality that emerges from this piecemeal degeneration of cognitive function can seem like a new person. At some point, the patient suffering from dementia may no longer be “themself,” but where we draw that line is often challenging and painful.
The scientific literature, rife with trials studying therapies to improve dementia, produces few studies that address the fundamental question of the relationship between dementia and self-identity. The research field is hampered by the fact that dementia is difficult to quantitate, but measuring self-identity poses an even greater challenge. For example, self-identity can be measured by the ability to recall how someone met their husband; if a dancer remembers how to dance the tango; or if one can recognize themself in the mirror. These all can be measured scientifically, but fundamentally, how we measure our self-identity is a subjective, personal, and spiritual decision.
Ms. Jones’ actions were generous and light-hearted, but not infrequently the actions of dementia patients can be hurtful and prejudiced. And that is why dementia is so frightening. When spiteful sentiments come from a loved one, it can be devastating. Watching the body of a family member morph into something mean is one of nature’s cruelest tricks, in large part because we worry that the personality emerging from dementia reveals deeper truths about who that person was.
But dementia is not a truth serum. It is a disease process with a tropism for the brain, our most personal bodily organ. Dementia leaves us incomplete, and to draw conclusions from this process would be akin to judging a book with swaths of pages ripped out.
As Ms. Jones was preparing to leave the hospital, I sat on her bed and wished her a safe trip home. She made her daily jokes, and I promised to get her knee medication on time. I felt I had the privilege of getting to know a part of Ms. Jones, but I wished I had the opportunity to meet her whole.