Category Archives: Alzheimer’s Disease

Local chapters split from national Alzheimer’s Association

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alzheimer's alzheimers association logoBy Anna Gorman
KHN

The Los Angeles-area chapter of the Alzheimer’s Association is splitting from the national organization, the latest in a string of departures that could impact the national group’s bottom line.

The chapter, which covers Los Angeles, Riverside and San Bernardino counties, announced its decision Thursday to separate and form its own organization.

Chapters in San Diego and Orange County, California announced similar plans late last year, as did chapters in New York City and New Jersey.

The departures come after the Alzheimer’s Association voted last fall to consolidate into one national organization that will centrally manage the funds and programs for people living with the disease throughout the United States.

Currently, local chapters are affiliated with the umbrella national group and help fund its operations and research. But they are independent nonprofits that keep about 60 percent of the money they raise and largely set their own priorities on how to spend it.

Under the new structure, the Chicago-based national headquarters will be the only legal entity of the Alzheimer’s Association.

The Los Angeles-area chapter decided to go out on its own because of concerns that the consolidation would take away local flexibility and make it harder to provide services tailored to the diverse population of Southern California, said Susan Galeas, president and CEO of the new organization, known as Alzheimer’s Greater Los Angeles.

Galeas said she and the local board also feared the national organization wouldn’t place as much of a priority on funding direct care for people with Alzheimer’s and their families as the local chapter does. Continue reading

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Dementia taks toll of unpaid caregivers, study

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And younger man's hand holds an elderly man's handBy Michelle Andrews
KHN

Unpaid caregivers and family members spend more than 100 hours a month, on average, assisting elderly people with dementia who live in the community and not in residential care or nursing homes, according to a new study.

As people live longer, the number with dementia will increase, further straining caregiving resources.

The time commitment was significantly higher than for similar caregivers who helped elderly people without dementia, who themselves put in an average 73 hours each month.

Overall, people with dementia make up 10 percent of noninstitutionalized adults age 65 or older, but they account for more than 40 percent of unpaid caregivers’ time. Continue reading

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As Alzheimer’s symptoms worsen, hard conversations about how to die

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As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die
September 19, 2015 • Six years after he was diagnosed with both cancer and Alzheimer’s, Greg O’Brien is beginning to talk to his doctor, and to his family, about his “exit strategy” for the final years of his life.

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Calming dementia patients without powerful drugs

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By Rachel Dornhelm, KQED

Diane Schoenfeld comes every Friday to the Chaparral House nursing home in Berkeley, Calif. to spend time with her aunt, Lillie Manger.

“Hi Aunt Lill!” she says, squatting down next to her aunt’s wheelchair, meeting her at eye level.

Manger is 97. She has straight white hair pulled back in a neat bun today. It’s tied with a green scarf, a stylish reminder of the dancer she used to be.

Diane Schoenfeld, left, shows a family photo to her 97-year-old aunt, Lillie Manger. (Photo by Rachel Dornhelm/KQED)

Diane Schoenfeld, left, shows a family photo to her 97-year-old aunt, Lillie Manger. (Photo by Rachel Dornhelm/KQED)

They go together to the dining room to look over family pictures. Manger needs to be reminded who is in them. Including one of herself. “That’s me?” she asks. “That’s you,” her niece confirms.

“Am I supposed to remember?” says Manger.

Schoenfeld smiles at her encouragingly: “I don’t know if you’re supposed to. It’s OK either way.”

Manger has dementia. Schoenfeld is her “surrogate decision maker” meaning that legally, she is the person who makes decisions about Manger’s health care. Continue reading

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Some dementia can be treated, but my mother waited 10 years for a diagnosis

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Pauline Rabin with granddaughters Emma and Aviva Rabin-Court near the C&O Canal in Great Falls, Md. (Photo courtesy of Roni Rabin).

Pauline Rabin with granddaughters Emma and Aviva Rabin-Court near the C&O Canal in Great Falls, Md. (Photo courtesy of Roni Rabin).

By Roni Caryn Rabin
KHN

When my mother, Pauline, was 70, she lost her sense of balance. She started walking with an odd shuffling gait, taking short steps and barely lifting her feet off the ground. She often took my hand, holding it and squeezing my fingers.

Her decline was precipitous. She fell repeatedly. She stopped driving and she could no longer ride her bike in a straight line along the C& O Canal. The woman who taught me the sidestroke couldn’t even stand in the shallow end of the pool. “I feel like I’m drowning,” she’d say.

A retired psychiatrist, my mother had numerous advantages — education, resources and insurance — but still, getting the right diagnosis took nearly 10 years. Each expert saw the problem through the narrow prism of their own specialty. Surgeons recommended surgery. Neurologists screened for common incurable conditions.

The answer was under their noses, in my mother’s hunches and her family history. But it took a long time before someone connected the dots. My mother was using a walker by the time she was told she had a rare condition that causes gait problems and cognitive loss, and is one of the few treatable forms of dementia.

“This should be one of the first things physicians look for in an older person,” my mother said recently. “You can actually do something about it.” Continue reading

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Do you really need counseling on your Alzheimer’s gene test?

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From WBUR’s CommonHealth:

A new Brigham and Women’s Hospital study finds that we may not need quite as much genetic counseling as we’d thought. Particularly on relatively cut-and-dried findings, like test results on a common gene that raises the risk of Alzheimer’s disease. Listen to WBUR host Anthony Brooks speak with Dr. Robert C. Green:

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Value of routine dementia screening questioned

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Illustration of the skull and brainMichelle Andrews
KHN
MAY 06, 2014

For the millions of seniors who worry that losing their keys may mean they’re losing their minds, the health law now requires Medicare to cover a screening for cognitive impairment during an annual wellness visit.

But in a recent review of the scientific research, an influential group said there wasn’t enough evidence to recommend dementia screening for asymptomatic people over age 65.

What’s a worried senior to think? Continue reading

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Alzheimer’s support model could save states millions

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And younger man's hand holds an elderly man's handBy Lisa Gillespie

As states eye strategies to control the costs of caring for Alzheimer’s patients, a New York model is drawing interest, and findings from a study of Minnesota’s effort to replicate it shows it could lead to significant savings and improved services.  Continue reading

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UCLA memory program offers ‘gym for your brain’

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UCLA Memory 1

Vikki Helperin, 84, dances with her husband Sidney, 88, a retired anesthesiologist, at the Longevity Center at the University of California Los Angeles Medical Center. He was diagnosed with Alzheimer’s about four years ago, and the couple is hoping the memory sessions will slow the progression of the disease (Photo by Anna Gorman/KHN).

 

By Anna Gorman
KHN Staff Writer
MAR 15, 2014

This KHN story was produced in collaboration with wapo

Just as they had so many times during the past 60 years, Marianna and Albert Frankel stepped onto the dance floor. He took her hand in his, and smiling, waltzed her around the room.

“I remembered how it used to be and we could really do the waltz and he would whirl me around until I got dizzy,” said Marianna Frankel, 82, who is 10 years younger than her husband.

For just a few minutes as the music played, she didn’t think about her husband’s memory loss, the long days of silence or how much he had changed.

The Frankels and about 20 others had come to the University of California Los Angeles Medical Plaza on a breezy Tuesday afternoon to learn ways to boost the memory and help both patients and caregivers cope with what already had been lost.  Continue reading

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