Tag Archives: dementia

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.

Memory Pools

Memory pools . . .  I wrote the term on the back of a bank deposit slip because I read it somewhere and liked the idea. My note said, “These are places like hospital waiting rooms, where memories accumulate in vast amounts because of the deep, grazing experiences people have there.” The bank slip ended up in the bottom of a laptop bag and I never re-read the note to myself until weeks later when I got home from vacation. I wondered where the magical phrase came from. The only legible author information was “Joyce”.  Was it James Joyce?

Thank heaven for Google. A search engine remembers so many things that I can’t. It’s even harder to keep track of details lately because my mom’s care needs have surged dramatically. Figuring out new ways to meet them feels like a part-time job. To this harried person, memory pools sound like cool, tranquil bodies of water where caregivers should swim a few laps before autumn sets in. Or they might be watery regions of the brain where the beautiful recollections of your life gather to keep each other company.

To solve the mystery of the memory pools I typed my three clues — “memory pools Joyce” — into the Google search bar. In less than one second, I found out that this concept comes from Joyce Carol Oates’ memoir, “A Widow’s Story.” The book chronicles the author’s devastating experience of unexpectedly losing her husband after nearly 50 years of marriage.

Suddenly, I remembered that I was attracted to the idea of “memory pools” because it seems to me that caregivers spend huge amounts of time in them. Until Joyce Carol Oates gave me a name for these places, they were just abstract experiences. A memory pool could be the doctor’s office where hundreds of worried families try to swallow the word “Alzheimer’s” or “dementia” when it’s delivered as a diagnosis. They could be the corridors where our loved ones sit while waiting for an MRI. All summer I felt like I was diving into a memory pool every time I entered my mom’s former home to pack up her belongings. How many cups of tea did we drink there at my grandmother’s oak table? How many times did we huddle under quilts in front of the TV while George Bailey discovered he’d had A Wonderful Life?

Then it occurred to me that caregivers may be the lifeguards watching over memory pools. As the details of their lives slip away from our loved ones, we strive to preserve them in some form that can be cherished and passed along. Memory pools are places where the tides of our lives rise and fall and push our wobbly boats toward the sea.