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INTERESTING STUFF – 25 May 2013

Better Treatment for Dementia

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


Comments

I wonder how much it costs to be a patient there?

Exactly Kenju -- I'm sure the cost of providing comfort and dignity is astronomical. Yet how can we be a society that does anything less for our elders?

I'll get to the New Yorker -- meanwhile the excerpts here made me cry.

Hopefully this model will inspire other facilities to adopt similar practices. Thanks for reporting on this.

What a heart-warming facility and a benchmark standard for the increasing number of people who have trouble thinking clearly.

Am very impressed by the staff's willingness to experience what their residents were previously put through. And how they benefited in insight.

I'm off now to research if there is anything similar available in Europe.

Thank you Ronni. You have come up trumps again with this post.

Just, thank you.

Treating dementia patients with kindness and patience, with minimal drugging or restraint, is what we would all aspire to. It is what we owe these people.

Having said this, it is an extremely difficult standard to live up to. For example, how many people reading this comment have ever changed the poopy diaper of an adult stranger? Not a fun experience, I assure you. Ditto to dealing with physically or verbally aggressive adults. Unpleasant, and injuries to staff occur frequently.

Add to this the fact that nursing home aides are among the lowest paid employees, so staff quality turnover is always an issue.

staff quality AND turnover.

A wonderful post that made me cry. I cared for a husband with Alzheimer's for 9 years before I finally put him in a care facility. Step by step, my love for him had evaporated as his fury and confusion grew. Thank God there are people who can do this. As a society, we must find better answers.

This is the most tragic disease for patient and family, but mostly for family. I am very afraid that the cost will be prohibitive for most families. I wonder if Medicare covers part of it.

This bears further study in how a patient gets admitted to a place like the Beatitudes Campus or the Green House project. Both are wonderful, but money will probably prevent the idea for becoming common.

Thank you, Ronni. As the caregiver for my mother-in-law, I can relate to everything in this post. My greatest lesson was the discovery that she looks to the facial and physical expressions of those around her for guidance. If I'm showing stress, she becomes anxious and irritable. A simple smile puts her at ease and makes us both feel more comfortable. I fear the day when we might have to put her in a facility where she would be medicated and largely ignored. It's wonderful to know there are facilities like Beatitudes. We can only hope others will follow their lead.

Thank you so much for this! We take the New Yorker but I had not read the article. I'm so glad you called it to my attention. My father had Alzheimer's and I could so relate to the simple logic of this approach. I thought of cost as well but the more I considered it the difference is mostly one of attitude and slight modification of environment. Maybe difficult to change but not necessarily expensive. People deserve no less than the humane respect this embodies.

My father and my mother each had some form of dementia before they died. And I think that I am getting it or have it.

I found a website written by a medical doctor who has been diagnosed with early onset AD. It's called "Watching the Lights Go Out." Because he is a doctor he's a little pompous and impatient, although he doesn't think he is! He writes of how his life is changing...

My husband does all the shopping, driving, housework and I basically do little but read, go on the internet, and keep my husband company. I think he'll take care of me for the rest of my life, as long as he is physically able. I don't want to leave him alone and lonely, but in my present frame of mind, I wouldn't mind if I died tomorrow. He, of course, doesn't like it if I say that, so don't tell him.

I don't think we have the money for a nursing home, good or bad. And I understand there are plenty of bad ones out there. When I was in my early twenties I worked in hospitals and I have changed diapers and cleaned up patients and it's no fun, especially if the patient is angry and combative.

Thank you, Ronni, for approaching the subject...

Until an end to funding closed us down three years ago, I directed a day care program for frail elderly. Many of our clients had been diagnosed with Alzheimer's. Yes, it often was a struggle, difficult and heartbreaking.

In time I began to understand that people with Alzheimer's have entered into a different world, and that in order to work with them we must step into that other world along with them. They are people who live with a giant eraser always following behind, so that the only possible goal can be to connect, to resonate in the moment, because only that moment exists. Ronni's quotes from Kitwood and Alonzo are exactly right.

I'm very glad to see facilities like Beatitudes begin to develop, as many of my clients were taken into nursing homes after we closed. There is much that needs to be done, both for them and for the rest of us.

"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."

"At Beatitudes, part of learning to do that is having the staff experience what the residents have been subjected to ..."

Answers and solutions are often the simplest ones

Great post and gratifying to be reminded there is at least some innovation in dementia care. My Dad lived to 97 and had significant dementia. I was his FT cg for six years. I've also worked as a paid cg, many or most of my clients have had at least some dementia. I've also worked in facilities (not in direct care, as receptionist) and seen the level of care, which another writer indicated is pretty much meds and being ignored. It isn't the fault of the staff on a personal level, they are too understaffed to provide 1:1 care for a needy dementia patient. It is a sad state of affairs and as another writer said, "the money" will preclude innovation. No, it isn't paid thru Medicare, it's all private pay at the custodial care level which is mostly what dementia patients require.

Ronni, I came back to your post to read the NYer article, and it seems to be gone, or a broken link. I've been trying to Google NYer and Rebecca Mead. I'll keep trying. Thanks for a great post.

As stated in my story, the New Yorker is behind a paid firewall. If you don't subscribe and/or don't still have that issue, your only choice is the library.

My mom was in a home that did many of these simple things. She held and caressed a baby doll and/or a stuffed dog for a long time. I did not even realize that it was revolutionary! I am SO glad she was in a compassionate place.

Someone said it is the simple things that provide happiness. Once I "went where mom was" it was easier to just "be" with her....simply and in the moment.

Before my Mom passed in '97 I taped her speaking about the past - "coming to America" and truly was grateful that her memory was in tact despite her failing heart and health. On the other hand, Syd's Mom developed Als. and it broke our hearts to see this bright capable extremely smart woman (she could sure play cards) not even react when her husband of near 60 years died. It has bothered me for so many years and I only hope that neither Syd or I develop that....because... ????

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