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Local advocates meld professional, personal approaches to dementia


Photo By: Colleen Ryan/ Special to the Town Crier
Photo Colleen Ryan/ Special To The Town Crier

A panel of seasoned elder-care advocates, from left, Bonnie Bollwinkel, Dr. Ronda Macchello and Karen Duncan, supports new trends in dementia and Alzheimer’s care that emphasize a personal approach.

A panel of local elder-care advocates endorsed David Troxel’s “Best Friends Approach” to dementia at the May 4 “New Trends in Dementia and Alzheimer’s Care” forum.

Long-term support

It’s personal for Los Altos resident Bonnie Bollwinkel, professional education specialist for the Alzheimer’s Association of Northern California and Northern Nevada.

Bollwinkel’s family cared for her father with Alzheimer’s disease for 14 years before he entered a nursing home. She knows firsthand what it’s like to need support over the long term. Troxel and his collaborator Virginia Bell are “some of my heroes,” she said.

Dementia treatment is evolving, according to Bollwinkel, from a medical model to a “psycho-social-spiritual” model.

“We’re trying to change the culture of care,” she said, adding that the newer approach is “person-centered – it’s personal.”

The Alzheimer’s Association sponsors educational programs, support groups for caregivers, a 24/7 helpline and the annual Walk to End Alzheimer’s fundraiser to generate money for research. Bollwinkel touted the association’s TrialMatch program, which pairs volunteers with clinical studies to promote the discovery of new drugs, therapies and diagnostic tools.

“It is thrilling to be a part of moving science forward,” said Bollwinkel, who currently participates in two trials at UC San Francisco. “Who’s going to do it if not me?”

Bollwinkel urged the audience to explore available resources and support networks.

“Get involved,” she said. “Learn more about the disease. You will find tremendous support for your family and friends. This disease is going to touch all of you.”

Outside-the-box approach

Ronda Macchello, M.D., an internist who specializes in hospice and palliative medicine at the Palo Alto Medical Foundation and serves as medical director at Pathways Home Health & Hospice, said Troxel’s Best Friends Approach to dementia care inspires her.

“These trends, these changes in the way we approach patients, are very, very welcome,” she said. “The traditional medical model fails us when we approach patients with dementia.”

In the traditional model, a patient visits the doctor, who then reviews the symptoms, issues a diagnosis and prescribes medication. That approach doesn’t work with dementia patients, according to Macchello.

“We have to be creative,” she said of the medical profession. “We have to move and think outside the box and to approach the people we’re serving that have these diseases … as healers and not as curers.”

Calling for a culture shift, Macchello said physicians should promote attitudes and environments that result in healing as an affirmation of the “intrinsic wholeness” of the human being, nurturing a sense of well-being and dignity. She added that doctors should focus on dementia patients’ unique histories, life stories and relationships.

Drugs that treat dementia are “woefully inadequate,” Macchello said, and fail to stop the inexorable, underlying pathology that causes brain disease.

In a memory-care setting like The Grove at The Terraces at Los Altos, for which Macchello serves on the advisory board, the emphasis is not on medication. Macchello said staff at The Grove would provide comfort, safety, companionship and support for caregivers; encourage exercise, social interaction, sensory stimulation and outdoors time; and optimize residents’ hearing and vision.

“We treat the person, the unique person, and we care for the person, not the disease,” she said.

Commitment to kindness

Karen Duncan, director of the Los Altos Community Foundation’s PrimeTime Project and a patient advocate focusing on quality-of-care reform for seniors, said the Best Friends Approach is largely targeted to early-stage dementia, but the condition is not “one-size-fits-all” and thus requires different strategies as it progresses.

In the middle stages, she said, when loved ones begin to lose touch with reality or their reality becomes more internal, it’s important for caregivers to enter into that reality with them.

“A caregiver must deepen understanding,” she said, “because if the patient cannot articulate what they want, then you already need to know a lot about the patient to be able to anticipate what’s going to make them relax and have a smile on their face.”

When patients enter the late stages of dementia, Duncan emphasized touch – backrubs, applying lotion, handholding – as a way to maintain contact with their humanity.

Duncan listed the three most important qualities for caregivers dealing with dementia sufferers: “kindness, kindness, kindness.”

“A cross word can undo two hours of loving care,” she said.

When looking for care for a loved one with dementia, whether in a facility or at home, Duncan underlined the importance of an institutional commitment to kindness.

“Find out if every single staff member is trained to be kind, through simulations and role-playing – that their automatic response in every situation is kindness,” she recommended. “You want everyone speaking kindly to your mom or husband.”

Duncan, whose mother spent four years at The Terraces, praised the community’s calm and serenity.

“There’s not a malaise there,” she said. “The Terraces is such a contrast to other places.”

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