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Breaking the stigma, reducing the fear of dementia - The Galveston County Daily News : Lifestyle

November 27, 2014

Facing dementia Breaking the stigma, reducing the fear of dementia

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Posted: Sunday, March 23, 2014 12:35 am

Born in 1925, Jo Anna Abschneider married her husband, Joe, when she was 20, and after the war, they raised four children in Santa Fe.

She had beautiful, shoulder-length auburn hair and was accomplished in fancy needlework and sewing.

In her early 70s, she sensed something was wrong and began to seek medical advice.

A neurologist diagnosed her condition as Alzheimer’s disease, a form of dementia, and Jo Anna began a long, slow decline.

Her husband cared for her as she became more agitated. She isolated herself in a dark home and wandered through the house at night.

She became confused and combative and eventually was placed in a secured nursing facility.

After she fell and fractured her hip, she was moved to another nursing home. About a year later, she died.

“It was very difficult for family members because no one understood how to relate to her,” said Patti Abschneider, her daughter-in-law.

Visits were short and uncomfortable. No one knew what to expect.

On one visit, she seemed to remember her son David.

“She had a funny response to his bushy mustache, and she had a good laugh,” Abschneider said. “We all did.”

This is a familiar story, a sad story; and it’s about to be multiplied by many thousands.

About 18 percent of the 79 million baby boomers in the United States are predicted to develop some form of dementia in their lifetime. That’s 14 million people.

Alzheimer’s is the most common form of dementia, a serious medical condition with no cure and few effective treatments.

Its cause is still a mystery and a specific diagnosis is difficult to make. It affects all races, income levels and even those with a healthy lifestyle.

By 2030, the number of people over 65 with Alzheimer’s is expected to approach 8 million, almost double the number affected today, according to the Alzheimer’s national association.

“Too many people and too many families are living with dementia in isolation,” said Helen Appelberg, a fellow at the Sealy Center for Aging at the University of Texas Medical Branch.

“They feel very much alone. It’s time to ask how can we better cope with dementia and how one can live and thrive with dementia,” she said.

To jump-start greater understanding and family support, Appleberg is hosting a series of learning dinner parties from 5 p.m. to 6:30 p.m. every Tuesday in April at Levin Hall.

The catered dinners are designed to bring together people with dementia, their families, caregivers and geriatric experts to enjoy an evening out, to hear pertinent information and to informally ask questions and seek advice from each other and attending professionals.

“If we talk to each other, if we share information, we can remove the stigma, reduce the fear and overcome embarrassment,” Appelberg said.

The lighthearted title for the series of dinner parties is “We may be different but we’re still thriving.”

“There is real value in knowing that you are not alone, and that you are not the only person experiencing this,” said Alice Williams, director of Libbie’s Place.

“Even to say, ‘I have Alzheimer’s,’ can be a relief.”

The value of these gatherings is to have access to experts and to people who are having a similar experience.

Topical discussions scheduled for each dinner are:

April 1: Spend a day in the shoes of a dementia caregiver

April 8: Learn to live and grow with dementia

April 15: Caregivers’ need for support and education

April 29: Working together to break the stigma

Special guests will vary at each dinner but will always include leaders in the aging community with special expertise in dementia. Experts will provide insight and information and be available to talk with families.

They include: Dr. Mukaila Raji, professor and chief of geriatric medicine at UTMB; Andrea Wirt, a nurse practitioner at the geriatric clinic; Adele Herzfeld and Lisa Moore, geriatric social workers; Ana Guerrero and Krista Dunn from the Alzheimer’s Association; Alice Williams, director of Libbie’s Place; Oma Morey, a faculty educator and author of “All the Way Home;” and Kristen Carlson, of Right at Home, among others.

Parking in the adjacent lot is free. Dinner is $5 per person. Call 409-266-9635.


Help

The Alzheimer’s Association: Call 713-314-1313 or 800-282-3900 or visit www.alz.org/texas has more available resources