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October 21, 2014

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Health Care :

Seeing patients as circles’ centers

Brain center seeks ‘best practices’ for serving families, caregivers

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Tiffany Brown

Graphic recorder Tom Benthin makes illustrated notes of discussions during a forum Thursday at the Palms in which experts invited by the Cleveland Clinic Lou Ruvo Center for Brain Health talked about meeting the social and logistical needs of people living with and caring for patients with Alzheimer’s and other brain diseases.

Ruvo Brain Institute planning forum

Maureen Peckman introduces herself to a diverse group of experts in dementia social services brought together by the Cleveland Clinic Lou Ruvo Center for Brain Health for a social services planning forum for the new Las Vegas center at the Palms Hotel in Las Vegas on Thursday, May 28, 2009. Launch slideshow »

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As the vision for the Ruvo Center for Brain Health evolved in the past decade, its most fantastic ambition became the curing of Alzheimer’s and other degenerative brain disorders.

But from the get-go, the founders knew they first had to provide emotional and logistical support for the patients, families and friends who deal with the repercussions of the grueling diseases.

Today, the Ruvo Center is moving aggressively on its quest to cure and treat the diseases, in partnership with the renowned Cleveland Clinic as the more expansive Cleveland Clinic Lou Ruvo Center for Brain Health. It will begin seeing patients in July at a facility that, for now, is best known for its daring Frank Gehry design.

Last week, the clinic turned its focus to the emotional and logistical needs of patients and caregivers.

Two dozen experts gathered as a sort of brain trust to help the Ruvo Center address the oft-forgotten social needs of caregivers and patients living with Alzheimer’s, Huntington’s, Parkinson’s and Amyotrophic Lateral Sclerosis (ALS).

The people who attended say the assembly was unprecedented, drawing experts from the likes of the Cleveland Clinic, Duke University, the Alzheimer’s Association. They came at the invitation of the Ruvo Center.

“We’re really starting at ground zero,” said Maureen Peckman, CEO of Keep Memory Alive, the fundraising and policy-making arm of the Ruvo Center. “We want to take best practices from existing organizations and incorporate all of them.”

The brainstorming session was the latest example of an emerging — and until recently, unlikely — role for Las Vegas: hosting reform-minded health care symposiums. The Ruvo Center has twice hosted its Leon Thal Symposium on the Prevention of Dementia, a gathering of world-class researchers to seek the best approaches, and a unified strategy, to attacking brain disorders. Like the Leon Thal sessions, last week’s social services forum will result in “best practices” guidelines that may help shape congressional legislation involving caregivers.

Jan Dougherty, director of family and community services for Banner Alzheimer’s Institute in Phoenix, said programs should provide more than a “diagnose and adios” approach — where doctors tell a patient he has a brain disorder but then provide little ongoing care.

Mary Guerriero Austrom, a professor at Indiana Alzheimer Disease Center at Indiana University, said her center cares for family and caregivers as well as patients, with social workers collaborating with experts in neurology, geriatric medicine and psychology. The program provides caregivers with information as they need it, instead of overwhelming them with an avalanche of material at the time of diagnosis, when they are most distracted. The Indiana Center also provides caregivers with round-the-clock access to help, she said.

“Knowing they’ve got a 24-hour number makes them feel better,” Austrom said.

Betsy Arnold, who was the primary caregiver for her Alzheimer’s-stricken mother, praised respite centers that provide caregivers hours of free time while providing patients exercise, socialization, art and ballroom-dancing activities.

“The patients enjoyed it as much as the caregiver enjoyed the time away,” said Arnold, daughter of legendary Arkansas University football coach Frank Broyles.

Darby Morhardt of Northwestern University’s Feinberg School of Medicine said community partnerships are essential because of the diverse needs of patients and their families. Physicians play an important role and can be educated on how to more accurately diagnose the diseases, she said.

Members of the group expressed frustration at the inability of primary care doctors to diagnose brain disorders.

Dr. Laurel Coleman, a geriatric physician at Maine Medical Center in Manchester, said that even after giving hundreds of talks on diagnosing brain disorders, “we’ll all be dead before there’s a significant improvement.”

A brain center should find middle ground, serving as experts in dementia while partnering with primary care doctors, she said.

Dr. Randolph Schiffer, director of Cleveland Clinic’s center for brain health, said the perspectives shared at the forum are valuable because they spring from proven programs elsewhere. It’s important for the Ruvo Center to integrate these ideas, he said, because “these disorders change the social fabric of these families.”

Whether the programs suggested at the symposium are incorporated at the Ruvo Center or will involve community partners remains to be determined, Schiffer said.

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