Loss of dignity in dementia falls on the public, not the patient

Loss of dignity in dementia falls on the public, not the patient

An elderly man suffering from dementia soils himself while shuffling down a nursing home hallway. A nurse finds him and leads him back to his room, cleaning up the mess left behind while a young boy visiting his grandmother watches in disgust. Across town, two parents bend over their infant child on the changing table and celebrate the accomplishment of yet another dirty diaper.

The older man and the child are similar in some ways, but how society responds to them is quite different. And if people living with dementia are to do so with dignity, the responsibility of ensuring they do falls on those around them, Dr. Jason Karlawish said at the ADC Caregiver Workshop at the UC Davis MIND Institute earlier this month.

“If we’re going to find dignity in dementia…we’re going to have to confront our feelings of disgust and our failure to bestow dignity to persons with Alzheimer’s disease,” said Karlawish, co-director of the Penn Memory Center.

Alzheimer’s disease and other forms of dementia rob people of not only their memories, but also their ability to perform daily tasks and control their moods. Karlawish discussed research that suggests just this prognosis can lead to stigma, more so than an actual diagnosis of Alzheimer’s.

“Someday, we will discover drugs that might slow the disease, but short of a cure, we will have to accept that we are going to have to decide not just how to live with some degree of cognitive impairment, but how we are going to die of it,” Karlawish said.

Some patients are choosing to take control over that last point, as doctor-assisted death is growing in acceptance in the United States. A 2013 New England Journal of Medicine report observing Washington state’s “Death With Dignity Act” found that 75 percent of participants cited “loss of dignity” as a reason.

“Loss of dignity. This phrase makes dignity seem like something we own, a possession, like our keys or wallet or eyeglasses, something we can lose, and if we search hard enough and remember the right steps right up until we last saw it, we might recover it and get on with our dignified lives,” Karlawish said. “And if we can’t find it — and we’re terminally ill and competent — we’ll end our lives.”

But loss of autonomy does not necessarily lead to loss of dignity, Karlawish pointed out. He recalled his days as a fellow of geriatric medicine, when he was puzzled by the sole bearded patient in a nursing home’s special care unit. Though the man needed assistance with nearly every aspect of daily life, his facial hair was trimmed, clean and full. Karlawish discovered that the man’s wife, who had cared for him for five years before moving him to the Special Care Unit, had maintained the responsibility of keeping up her husband’s beard. Though the man didn’t remember his wife’s name, he “does recognize me as someone who is good,” Karlawish recalled the woman saying.

“All disease is lousy and Alzheimer’s disease is uniquely lousy, but even in its advanced stages there is some dignity to be had. We just have to give it,” Karlawish said.