Learning to Doctor in Dementia Land
2016; Wiley; Volume: 64; Issue: 8 Linguagem: Inglês
10.1111/jgs.14187
ISSN1532-5415
Autores ResumoI feel a tug on my sleeve. Deborah is standing beside me, fistfuls of blue nitrile gloves in her hands. She looks at me wordlessly: I know what she's expecting. I hold out my hand to accept the gloves. “Thank you,” I tell her. “Thank you,” Deborah repeats. She turns around abruptly and begins ambling back down the hallway, stopping now and again to pick up more gloves along the way. Yesterday, Deborah was stockpiling crayons. Why is she collecting gloves today? It's the third week of my medical school rotation in a unit caring for individuals with advanced dementia. Most of the patients are in their 70s and 80s, yet I often find myself several steps behind them as I struggle to adapt to the ever-changing reality they seem to inhabit. It is a world where yesterday is Tuesday, and today is Tuesday, and tomorrow might still be Tuesday, but why am I always asking what day it is? Time usually repeats itself, but once in a while, the calendar slides back to 1960, and sometimes there's nothing anyone can do about it until suddenly it's the present day again. What's more, each person has constructed a slightly different version of this reality. In Patrick's dementia land, neighbors sneak in to take his clothes and money and put them back when he's not looking. Dogs and cats race in and out of Jane's dementia land, and sometimes children play quietly in the corner, too. Roseanne's dementia land is a terrifying one in which someone is always trying to take her car away, even though she hasn't driven in ten years. If getting one's bearings in dementia land is challenging enough, learning to doctor there can be even trickier. I quickly found that much of what I had been taught in medical school about how to interview a patient was irrelevant. Nobody had taught me how to take a history from someone who undoubtedly feels but has lost the words to express it, who has lost the concept of space and time altogether. Anya never announced that her back hurt, and even if you asked her in a hundred ways whether she felt any pain, she would smile politely and say “no, no.” But one day she refused to eat and sat by herself in the corner of the room, fidgeting nonstop and pulling at the back of her shirt every few minutes. Remembering that she had osteoporosis and an old spinal compression fracture, we gave her some pain medication. Anya was already awake when I went to check on her the following morning. She asked me where breakfast was. “I'm hungry!” she declared. Through trial and error, I eventually learned to speak the language of Deborah's and Anya's dementia, but there was no guarantee I would even know where to begin with the next patient. For although each of the individuals in that unit had dementia, each experienced it so differently that I found I had to adapt my approach constantly to figure out what was actually going on. Rather than relying on the traditional physical examination by rote, every gesture and every grimace became a treasured glimpse through dementia's opaque veil, a vital clue to understanding the humanity within. Caring for people with dementia, I learned, means meeting them on their terms, in their time. It means discarding the formulas of medical training and instead embracing narratives of expression and movement. To learn to doctor in dementia land, I had to open my eyes to the ways people with dementia convey their vulnerability and open my ears to the stories they wished to tell. Deborah was playing with her favorite doll the morning she was about to be discharged. In her customary way of greeting me, she stretched her arms out to hand me the doll. This time, I did not accept her offering. “Deborah, the doll is for you to take home with you,” I said gently. She gave me a half-smile and hugged the doll to her chest, stroking its hair. I'm almost certain she did not understand my words. I can only hope that she understood my meaning and my appreciation for all that she taught me about the true meaning of doctoring. All identifying information has been changed to protect patient privacy. Conflict of Interest: The author declares no competing interests. Author Contributions: Connie R. Shi is the sole contributor to this manuscript. Sponsor's Role: None.
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