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.

Memory and Anesthesia

Memory loss can be aggravated by many lifestyle factors. But  physicians are now finding that medical treatments requiring anesthesia may also have a sudden, negative impact on Alzheimer’s patients — even in early stages of the disease.

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In her recent article for InSight, a Memory Center publication,  writer Lisa Bain describes the case of Doris Reimann, who woke up after hip surgery unable to speak  clearly. Doris never walked again and failed to regain her mental faculties. Similar accounts of post-op cognitive decline prompted Dr. Steve Arnold  to look at the connection between surgery, anesthesia, and Alzheimer’s. Other Penn researchers have done the same.

Dr. Roderic Echkenhoff  has observed the results of studies done with lab animals. Anesthesia has been shown to produce “lesions in the brains of mice that mimic those found in brains of people with Alzheimer’s disease.” But surgery itself is a catalyst for the brain’s inflammatory response. It is difficult to determine which of the two factors carry the greatest risk.

While there is abundant anecdotal information from families and clinicians, Dr. Arnold explains that there is not enough data to suggest that surgery or anesthesia should always be avoided. After all, surgery is usually recommended when people are suffering pain that can’t be managed in other ways. Nevertheless, he urges families to talk to their “primary care physician, surgeon, and anesthesiologist about their concerns before surgery with anesthesia” is carried out. This kind of conversation can’t wait until after the operation!