As a nurse who works with people with dementia, Jordan Bauer says his own presentation is one he would have appreciated early in his career. He recalls working at a care home in high school and being intimidated by patients with dementia.
"Individuals with dementia may actually reveal something to the rest of us, which is an important theme to me and also intuited in my own practice, in my own experience as a nurse," Bauer said in a CHA webinar in early April.
The webinar covered the conventional perceptions of dignity, what is considered intrinsic dignity versus attributed dignity, how that applies to the common good, and perceptions of people with dementia and their caregivers.
Bauer, who lives in Fort Wayne, Indiana, is a hospice nurse, an adjunct professor of nursing, theology and philosophy, and a Ph.D. candidate in health care ethics and theology at Saint Louis University.
He said that people often perceive that dignity is incompatible with dementia. People might say they value their independence and don't want to depend on others or there is no purpose or meaning in life with dementia, or they fear they may lose their dignity. Some people say, "If I ever get to a certain point in my decline, take me behind the barn out back and shoot me."
"Unfortunately, I have personally heard this phrase expressed more times than I like to admit," Bauer said. "It's meant as a joke, of course, but it also indicates what we often consider to be a dignified human life versus life incompatible with dignity."
He cited researcher Nancy Jecker's "hang in there!" model, which she identifies as the typical depreciative approach that people take toward caring for those with dementia, seeing the goal as "holding on."
"And so our job (as caregivers), according to this paradigm, is to help them hang on to who they used to be, rather than again, in Jecker's words, to 'a fuller picture of humanness, one that includes but is not limited to the capacity for rational thought and agency,'" Bauer said.
"It takes a significant amount of training and understanding and sometimes patience, sometimes quite a bit of patience, to enable that reasoning to flourish. The point is that it is different, but not gone."
— Jordan Bauer
Intrinsic and attributed dignity
On the contrary, a big part of a caregiver's job is to help align someone's intrinsic worthiness or dignity with their attributed dignity, or a subjective value people confer upon themselves or others based on actions, accomplishments or social interactions, he said. Intrinsic dignity, according to the Catholic tradition, says that an individual is made in the image and likeness of God. Another source of intrinsic dignity has to do with the ability to flourish as a human being through capabilities such as practical reasoning, an ability that does not outright disappear with dementia.
"It takes a significant amount of training and understanding and sometimes patience, sometimes quite a bit of patience, to enable that reasoning to flourish," Bauer said. "The point is that it is different, but not gone."
Attributed dignity can have many sources, and it can reflect a kind of social worth that mingles with a person's sense of internal and personal worth, he said. He recalled the Dr. Seuss story about the Sneetches, who place value in having stars on their bellies, but eventually learn that the stars aren't very important.
He spoke about the dignity of identity, defined as the status each person holds in relation to others and reflects both past experiences and aspirations for the future. The key point, he said, is that "harm to dignity of identity is not an inherent symptom of dementia."
Caregivers can offer the materials and discourse to help a person embrace their own dignity, such as a personalized space, mementos, and ways to engage their imagination, he said. "I want to note that some nursing homes have staff that are dedicated to this kind of work, this kind of engagement, and it is truly beautiful, and I think it's truly meaningful work," he said.
Other factors that affect attributed dignity include people with dementia feeling like they are part of a community, having family relationships, being part of society, and having dignified care. "Dignified care (as a factor) is not a surprise, but it also reiterates that individuals assess their own dignity based on how others treat them," he said.
Giving and receiving
From a Catholic perspective, he added that attributed dignity can be considered a common good, an example of which is the delight that a group of sailors takes in arriving at the safety of their destination. The delight is shared and creates a goal throughout the journey.
"We need to set this common experience (of attributed dignity) as our goal," he said. "And given the perceived threat to dignity posed by dementia and the conventional perceptions of dignity and dementia, we do have a lot of work to do."
Those with dementia have something to teach others, Bauer said, "because they recall for us that we are all on this spectrum of giving and receiving."
He added that "when we look into the eyes of someone with dementia, we can see our own embodied dependence."
Further reading: CHI Health St. Francis in Grand Island, Nebraska, has a program that makes staff aware when a patient has dementia.