Tag Archives: dementia

Dementia Foils the Best Laid Plans

Some ideas nag at you until you finally act on them. Last September I was angry with myself because I never got around to driving my mom to the beach for a day. When she was younger, she loved the ocean.

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Every year she spent a week at Cape May before the Memorial Day tourists arrived. She returned again after the Labor Day crowds were gone. Over the course of her life, she went on whale watches and dolphin cruises around the Atlantic and North Pacific. Though she didn’t learn to swim until she was over forty, she was mesmerized by water.

One of Mom’s favorite expressions was, “Timing is everything.” If I had listened sooner to that little voice telling me to take her to the Jersey Shore, things might have worked out better. Instead, I took her this past week and the experience defied all expectations — in a negative sort of way.

I honestly thought I had it all figured out. Ice, cooler, water bottles, car snacks, beach chair, SPF 30, blanket, towels, sunglasses, etc. I played old Beatle songs on the drive to New Jersey and got her clapping along. By the time we arrived at the beach, she could almost sing the entire line: “We all live in a Yellow Submarine.” Success ended the minute we got out of the car.

Walking the plank ramp to the boardwalk took nearly 20 minutes. She just couldn’t see or understand how to walk on the boards that had once been so familiar. My arms were loaded with stuff, so I propped one of her hands on the metal bannister and took her other one in mine. Two very kind ladies stopped to carry some of my paraphernalia so I could focus my energy on helping mom. She barely made it to the railing where the ocean was visible at last. I sat her down to take a rest, then tried to figure out how I could possibly shorten her trip back to the car. I was so grateful for the help of passing strangers who sensed the weight of our distress. Finally, I got Mom to the car and took her to a beach restaurant for lunch.

From there she could see the waves and hear the seagulls. But she hated the cool breeze that was such a treat for all the other customers. Her meal of fresh fish was unfamiliar and I had to coax her to eat tiny bits of the flounder and potato salad she would have wolfed down in years past. Nothing about the day resembled the dream I’d harbored for so long. No bliss, no smiles, no final happy memory of a day at the beach with Mom.

By the time we started back, I felt like the demented one. My dream was too selfish and didn’t fully account for my mother’s limitations. About halfway through the drive home, she was happy again as the Beatles played. When one song ended, she turned to me and asked, “About the water…. the time with the water? Is that over now?” — as if she wanted to go back again. I thought I would scream. But I didn’t. I nodded my head and cranked up the Beatles. They were four guys from Liverpool with the world’s best sense of timing.

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.