Palliative Care Through a Dementia Lens
Seventy-five percent of people with dementia in the United States will spend time in a nursing home, most typically in the moderate and advanced stages of their condition. Ann Wyatt, MSW, has been observing the treatment they receive for years, and it has turned her into a champion of palliative care.
“There are some treatments available that will help some people with Alzheimer’s for a time, but there is no treatment yet that will prevent or cure the disease,” she says. “In this absence the best medicine is good care.”
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.”
Wyatt embraces this approach.
“Now the understanding is that basically from the point of diagnosis there may be, and is likely increasingly, a need for a palliative approach along with any treatment that is available and effective. That means that you could do both at the same time. Palliative care means that you may have a life-threatening illness, but there are things that you can do to be more rather than less comfortable.”
“Comfort is not something that caregivers decide. It’s something that’s conveyed by the person in a variety of ways. People with dementia do communicate comfort and discomfort through their actions. The goal here is to really work on figuring out what is the cause of the discomfort and help somebody become comfortable.”
She said it’s usually not dementia that causes the distress.
“It is the dementia that prevents the person from expressing the cause of their distress. Most of the time it means that somebody is in pain or has some other discomfort. Dementia just means they can’t explain what it is.”
In many care facilities the distressed person is prescribed antipsychotic drugs, which “may remove the person’s only means of communicating and still not be responsive to the underlying problem.” They will still have the pain, but they will not be able to let anyone know.
“Care settings often expect the person to conform to the needs of the setting, which means not only that the person’s needs may not be met adequately or in a timely manner but the setting itself may be causing the person’s distress.”
THE COMFORT APPROACH
Wyatt shared an example of a man who was admitted to a nursing home she worked with. He had been in a couple of other homes and a psychiatric unit. His wife was “at her wit’s end. She was terrified he’d be discharged from this home as well.”
Fortunately, the staff sat down with her to talk through what may be going on with him They learned that at home he had been in the habit of staying up until 4 a.m., then having a snack, going to bed and sleeping until around noon or 1 p.m.
“It was only when people tried to get him to go to bed before he was ready and then wake him out of a sound sleep in the morning when he was finally getting some rest that he became upset.”
The nursing home worked with the family, changed his schedule “and these behaviors disappeared.” He was also no longer on the antipsychotics that he had been taking when he arrived there.
LOOKING AT COMFORT FROM A DEMENTIASPECIFIC PERSPECTIVE
Wyatt says she’s regularly asked if the palliative care approach takes a great deal more time.
“My answer is to consider how much time it takes to try to get someone to do something they don’t want to do. It may take a little more upfront time to get to the root of the problem, but more often than not it will save time in the long run.”
She points to Beatitudes Campus, a retirement home in Phoenix, AZ, which about two decades ago revamped its dementia unit with a comfort approach. “Resistance to care there is rare. People eat, sleep and wake as they desire. Staff at Beatitudes are always assessing what’s working for the person, understanding that people with dementia, like everyone else, are experts on their personal comfort.”
This kind of detective work to understand an individual’s needs involves a process, with weekly interdisciplinary meetings bringing together nurses, nursing assistants, social workers, activities staff and all involved. Each might have a different observation and perspective. The process should also include a comprehensive assessment at the time of admission to understand the person’s history in terms of care needs, habits and comforts.
Wyatt cites an example of one woman who was regularly being written up for aggression toward other residents. When the staff began observing her closely, they realized she was trying to hug the other residents. The staff then began giving her frequent hugs throughout the day and the problem was solved. The woman wasn’t aggressive; she was loving.
Facilities that take the time to practice the comfort method report higher staff satisfaction, Wyatt said.
