Category Archives: Ideas to Float on

Changing the Dementia Care Model

If you’ve ever visited a dementia care site, you’re bound to wonder how things got the way they are. Not because it’s all bad, but because many features of both day and residential care programs don’t seem to benefit the patients. Reliance on drugs leaves many people barely alert and the aesthetics of care sites are often distracting for lucid patients filled with anxiety. Family caregivers may know better ways to treat loved ones, but they can’t always manage care during the long course of the disease. Finally, better alternatives are emerging!

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It’s exciting to learn that new treatment models are being used successfully in the field. In the May 20 issue of The New Yorker, author Rebecca Mead describes evolving care strategies that have provided residents with significant relief at the Beatitudes Campus in Phoenix, Arizona. Beatitudes describes its approach as one that “focuses on the comfort of the individual with dementia and empowers staff members to anticipate the needs of the resident.” Beatitudes trains professional caregivers to use a “person-directed approach to care.”

This strategy sits at the opposite end of the spectrum from most nursing homes. Even the finest, high-end dementia facilities organize everything — from administration of drugs, to deployment of staff — around the needs of the institution rather than those of the patient. Facility administrators might argue that people with dementia are often unable to communicate their needs when pressured for an explanation of what ails them. But staff members at Beatitudes engaged in deep study of their patients — and themselves — to create a service model that relies more on empathy than assumptions. Beatitudes caregivers took the extraordinary steps of spoon feeding each other and wearing incontinence diapers so they could learn what residents really experienced during a typical day.

After these experiments, lots of practices — including use of diapers — were thrown out the window. Staff members also began to realize something that most family caregivers learn early. Although words may fail dementia patients, “all behavior is communication.” This phrase is a mantra repeated by Tena Alonzo, Director of Education and Research at Beatitudes, who now uses quiet, calming methods for getting patients to disclose as best as they can what is causing their agitation.

The work of the Beatitudes Campus is based on ideas developed by British educator and psychologist, Thomas Kitwood.  Not long before his death, he published his 1997 theories under the revealing title “Dementia Reconsidered: The Person Comes First.” His ideas have been influential in England and Belgium. Details will be featured in future posts here. For now, you can learn more about Beatitudes Campus care concepts by clicking here for background on their training model. May you discover some ideas that buoy you up.

Memories and Mothers

Peel back the exhaustion, stress, and worry. Inside each caregiver you’ll find someone else: a child, husband or wife who gave and got love, never knowing they’d be sharing the future with dementia. Mother’s Day awakens the girl inside me whose mom looked cool in a mini dress, dancing the Jitterbug with my dad.

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On Saturday nights, she was a tiny, blonde in heels and sparkly earrings. For church on Mother’s Day, she dressed my sister and me in pink skirts that matched her own. We sat in the pew like a row of tulips, bowing and raising our heads when she did.

Spring brings many reminders of those times. It might be the pastel flowers that make me think of Easter hats. But simple celebrations made Mom happy too. There was a long patch of grass that bordered an old garage near our house. Every May that strip of land gave birth to zillions of bluebells. On the way home from school, I often stopped to pick some for my mother. Sometimes I stayed ’til my tiny fingers couldn’t pluck another flower. Then I carried them up the hill to a woman who was worried sick because I was half an hour late. Sorry, Mom, I wanted that bouquet to be big as a meadow, grand as my love. When you’re six years old, that takes a long time.

This year we had fake Mother’s Day a little early. For a Mom with dementia, a Wednesday is just like a Sunday. It was the only time my sister and I could merge our schedules to bring us all together. We took Mom out to dinner and she was quite happy. Being fed by two daughters at once made her feel like a queen.

On fake Mother’s Day, we were caregivers. Dutiful, organized, and protective while other people stared at the mashed potatoes we spooned into her mouth. But today, as I spied a patch of bluebells, I felt like her child again. Remembering the race into the kitchen, flowers in hand, wanting to make her laugh with joy.

Those days are long behind us, but I picked some bluebells for my own pleasure. They remind me that being her child was a privilege; caring for her is sometimes like that, too.

Dementia and the Animal Planet

As a child I begged my parents for a dog. My mom was dead set against it because she knew that, despite my promise to look after a puppy, she’d end up taking care of it. Though her parents and siblings loved pets, my mother did not. So it surprised me when dementia turned her into an animal lover.

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Her transformation was sudden. Maybe it was triggered by the prevalence of wildlife in my Pocono environment. Mom had been living in the suburbs for decades before she came to stay with me in the mountains. Shortly after arriving, she started laughing with delight at the sight of bunnies on the lawn or deer in the yard.

Animals’ abilities to calm dementia patients are now being explored in many settings. Mara M. Baun, DNSc, a coordinator of the doctoral nursing program at the University of Texas Health Sciences Center at the Houston School of Nursing in Houston, has been researching the benefits of therapy animals for over ten years. Her work is described in Everyday Health by Madeline Vann. One of Baun’s studies compared adult social interaction in an Alzheimer’s unit — with and without the presence of a dog.

Baun’s research showed that patients displayed more interactive behaviors when they were with the pet. Though some of the behavior was aimed at the dog, rather than a human, the effects were similar whether the dog and dementia patients were one-on-one or in a group setting.

Lots of elder care and residential living programs are also trying to harness the power of animal therapy in their programs for dementia patients. The Life Care Center of Nashoba Valley in Massachusetts includes animal therapy as part of its program. They use a llama and several golden retrievers to help soothe Alzheimer’s patients in various stages of the disease. Residents who become agitated are often calmed by contact with these animals.

Of course, the animals also require care. If residential programs “forget” about the health or nutritional needs of their therapy animals, that should be a red flag for families. As my mother often reminded me in childhood, “A dog should be as clean and healthy as its owner.” It took me years to fully understand what she meant. But I did finally earn the right to live among some beautiful animals.