Of the common late-life diseases, Alzheimer's and other dementias are undoubtedly the most feared, both for ourselves individually and for our loved ones. Dementia steals the person's memory and with it, their selfhood making family members strangers to them and leaving them strangers to their families.
Last week journalist Rebecca Mead, writing in the New Yorker magazine, told a remarkable story of changes in treatment for dementia patients that are gradually being adopted in nursing homes and other care facilities because they are better for everyone – the patients, the care staffs and family.
The idea, at its most simple, is that instead of medication, restraints and rigid schedules found it most dementia care, comfort of the patients is paramount.
To a large degree, these advances in care are being spearheaded at the Beatitudes Campus, a retirement community in Phoenix, Arizona. The community's director of education and research, Tena Alonzo, has spent 28 years working with dementia patients which she prefers to call “people who have trouble thinking.” As Alonzo told Mead:
”'We can't change the way you think, but we can change the way you feel.”
Because dementia patients commonly become violent, Alonzo has re-created the physical space on Beatitudes' dementia floor, renamed it a “neighborhood” and trained the staff to concentrate on pleasant experiences for the residents throughout the day which has greatly reduced anger and violent behavior.
Meals are available around the clock, snacks are passed around by the staff, bedtime and waking times are not rigid, there is a sunroom that features wind chimes, patio furniture and a resident cat.
”'One of the things that create comfort for people who have trouble thinking is space,' Alonzo told me. 'If you are too blocked in, you feel frightened.'
“The sunroom overlooks a busy street; the hum of traffic, filtered through double-glazed windows, can be calming, as can the repetitive motion of the cars. 'We have men who adore watching the cars for hours,' she said.”
What the Beatitudes neighborhood does not have much of is television:
”In many nursing homes, televisions entertain the staff rather than the residents, who may find the programming too stimulating, or have trouble distinguishing between an onscreen drama and their own lives.
“(Talk shows that feature guests yelling at one another can provoke violence among residents.)”
“Back in 2001, the staff at Beatitudes had not yet learned to turn off the television, and on September 11th, Alonzo said, 'we had people crawling under their beds and trying to hide in their closets. Many of them felt like they were in World War Two again.'”
Beatitudes did not invent this new treatment. The Green House Project uses similar types of less instrusive care including fewer or no psychotropic drugs, as does the Pioneer Network in Chicago.
The principles are derived from the work of Thomas Kinwood,
“...a British social psychologist who died in the late nineteen-nineties,” writes Mead...
“In his landmark work, Dementia Reconsidered: The Person Comes First, published in 1997, Kitwood insisted that people with dementia, rather than being seen as debilitated, should be embraced for what they can teach the cognitively intact.
“Such people, he wrote, invite us 'to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct...'
“'The problem,' Kitwood concluded, 'is not that of changing people with dementia or of managing their behavior; it is that of moving beyond our own anxieties and defences, so that true meeting can occur and life-giving relationships grow.'”
At Beatitudes, part of learning to do that is having the staff experience what the residents have been subjected to:
”Alonzo underwent a public bed bath, in front of the entire staff of twenty-seven. She didn't allow herself to move her limbs, and behaved as if confused.
“Afterward, she was able to describe the nature of her discomfort, and the staff members analyzed their own activity in light of it. 'Let me tell you, it sucked – it was incredibly uncomfortable,' she told me.”
“...In the most radical experiment, the staff wore adult diapers. 'That was kind of life-changing for everybody involved,' Alonzo told me. 'We all recognized just how uncomfortable it was to sit in a wet brief.
“Some of our front-line staff, who really wanted to know how bad that felt, did not change them for a couple of hours.'”
The staff then began taking residents to the bathroom 20 minutes after meals reducing the need for diapers.
Alonzo has been taking the Beatitudes method on the road to teach staffs in dementia care homes around the U.S. what they have learned – the most amazing of which appears to be that the more humane the surroundings and living conditions are, the less need for heavy medication and – at Beatitudes since 2005 - no restraints at all.
There is this that is worth thinking about too:
”Alonzo told me that she regards the residents as being 'closer to the higher being. This is who they are: real, honest, and sometimes raw.
“'There is no ability to reason, or to cover up who you really are. And so, for much of the time, you see the loveliness of the soul – it is bare for everyone to acknowledge.'
“Valorizing dementia as a higher state of being may strike many people as bizarre, and such sentiments are unlikely to comfort the children or partners of people who must endure living in a state of perpetual confusion.
“Yet our society does tend to prize cognition and executive function at the expense of other essential human qualities: sensuality, pleasure, intimacy.
“For people who can no longer think clearly, a life of small sensory pleasures is a considerable achievement.”
Alzheimer's and other dementias are not unknown to some readers of Time Goes By who have cared (or are caring) for spouses and parents.
Statistics indicate that some of us who are reading this blog will, in time, become so afflicted and for me, I hope that such a place as Beatitudes can be found if I become one of the people who has trouble thinking.
Here is a short, little news video from a couple of years ago about Beatitudes' care:
There is so much I have had to omit from this report of Rebecca Mead's New Yorker story, "The Sense of an Ending," that I urge you to read it.
However, it is behind a paid firewall so if you are not a subscriber, you're stuck with having to track it down at the library. The issue is dated 20 May 2013.
There is a less thorough but still worthy The New York Times story about Beatitudes in Phoenix and this kind of dementia care from December 2010.
At The Elder Storytelling Place today, Karen Zaun Kennedy: Colby