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Families, experts discuss Alzheimer's impact — Part 1

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Families, experts discuss Alzheimer's impact — Part 1

Picture of Frank Gluck

Experts estimate that as many as 55,000 Southwest Floridians have diagnosed or undiagnosed Alzheimer's disease. To better understand the disease's impact on the region, The News-Press in Fort Myers, Florida, interviewed experts on the disease and families now coping with it. These are some of their stories.

Frank Gluck reported this story, originally published by The News-Press, while participating in the 2014 National Health Journalism Fellowship, a program of USC’s Annenberg School for Communication and Journalism. This is the first of three parts.

The News-Press
Saturday, January 24, 2015

Experts estimate that as many as 55,000 Southwest Floridians — most over the age of 65 — have diagnosed or undiagnosed Alzheimer's disease.

To better understand the disease's impact on the region, The News-Press interviewed experts on the disease and families now coping with it. Following are some of their stories:

Joe and Kate Pre-Genzer, South Fort Myers

Joe Pre-Genzer, 86, was diagnosed with Alzheimer's disease several years ago, when he was in the very early stages of it. The disease's progression has been a slow one, allowing him to remain at home with his 81-year-old wife, Kate.

The couple, who own a two-bedroom condominium , hope to avoid moving to an expensive assisted-living facility or nursing home. Kate Pre-Genzer remembers all too well the expense of putting her mother in a nursing home many years ago.

They are considering downgrading to a one-bedroom condo to save money.

Kate Pre-Genzer says the 24/7 caregiving has been stressful. She said she feels alone and has started to take antidepressants to help cope with it all. Joe remains fairly lucid, she said, but she knows it's only a matter of time before he needs more expensive medical supervision.

They live comfortably, but they avoid spending money on anything other than what they absolutely need. Kate worries they will outlive their savings.

"We don't know what's in store for us. We don't know how long we'll live, and we don't want to outlive our money," she said. "So we're kind of hanging onto it."

Stuart and Helen Hodes, Cape Coral

Helen and Sturt Hodes on their wedding day.
Helen Hodes, 91, was diagnosed with Alzheimer's disease after visiting a memory care clinic in 2004. Today, she lives in a special Alzheimer's unit at the Gulf Coast Village senior community in Cape Coral, and needs around-the-clock care.

Stuart, 89, lives in a wing of the community for independent seniors, allowing him to visit his wife daily.

The facility has an "above average" rating from the Medicare system, but it does not come cheap. Hodes, a retired oil company executive, spends $13,000 a month for his wife to live in the unit. He also pays $6,000 to two private caregivers to supplement her supervision in the unit.

Helen is "pretty much out of it," Stuart Hodes said. But she does seem to recognize him when he visits.

Despite the high cost of care, Hodes said he believes they will have enough money to carry them through the rest of their lives. But, depending on how long that is, there may be little left to pass on to his family, he said.

"We'll go through what would have been the kids' money; we'll go through that in a period of years," Hodes said.

Dr. Fred Schaerf, Alzheimer's Researcher

Alzheimer's by race and age

Schaerf is a psychiatrist and founder/principal investigator at Neuropsychiatric Research Center of Southwest Florida. The private center, located near Gulf Coast Medical Center in Lee County, conducts outpatient clinical trials on drugs aimed at treating Alzheimer's disease and other brain disorders.

Schaerf, whom Gov. Rick Scott appointed this fall to sit on an advisory board overseeing a new state Alzheimer's research program, said he worries that not enough is being done to foster disease research. He said the only way to truly fight the disease is to find a cure.

He said community groups — hospitals, disease support groups and researchers — need to cooperate more to help provide better care to Alzheimer's patients. He said he particularly would like to see more patient referals to disease researchers, such as himself.

"We do need care-giver groups, we need support groups — we need all those things," Schaerf said. "But we (also) need cutting-edge neuroscience to try to find the cure. The only way to do that is to enroll people in studies."

Will and Mildred Needleman, Estero

Mildred and Will Needleman were married on December 20, 1949.

The Needlemans have been married 65 years. They continue to share a home, even as Mildred's dementia gets steadily worse. Will dreads the idea of putting her into a home, but he says the emotional toll of taking care of her has become increasingly difficult for him and his daughther, with whom the couple lives.

Mildred, 91, was diagnosed with Alzheimer's not long after she was in a minor car crash seven years ago. She had no memory of the accident hours after it happened, Will Needleman said.

"That's how it started," Will Needleman said. "How it's ending, I don't know. Her mental capacity at this time is nonexistent."

Mildred does not recognize Will as her husband, he said. She confuses him with her father, her mother and friends from long ago.

He said one of the hardest parts of the disease is the fact that there is so little social support for caregivers. Friends from the past no longer come around, as if they fear being around the disease. He said his once flourishing social life is all but over.

Lisa Sgarlata, Lee Memorial, Chief Administrative Officer

Sgarlata championed new ER screening guidelines at Lee Memorial Hospital that aim to better identify patients suffering from dementia.

The pilot program started in August and could eventually be expanded to Lee Memorial Health System's three other adult emergency departments in Lee County.

Screeners ask patients 65 and older a short series of questions about their memory to determine if they are mentally impaired. ER staff will also look for other problems that are not always obvious, including a history of substance abuse, delirium and depression.

More: Long-term care planning tough

Lee Memorial Health System treats an average 1,500 or so known Alzheimer's patients every year, records show. Hospital staff say that is likely an under-count because the disease is not always obvious in emergency situations.

"It's very hard to diagnose anything specific in an emergency room setting," Sgarlata said.

Saul and Doreen VanderWoude, South Fort Myers

Saul and Doreen VanderWoude have been married for 51 years.

Doreen, 71, was diagnosed with Alzheimer's disease six years ago. Her husband Saul, and their family help take care of her at home.

It's only the latest in a long list of hardships for the family. Doreen is a breast cancer survivor. She and Saul were the grandparents of 6-year-old Coralrose Fullwood, who was raped and murdered in 2006 in North Port.

The family believes the stress of the case, which garnered national media attention, may have helped lead to Doreen's illness.

Doreen recognizes family members but is distrustful of strangers. While receiving treatment at HealthPark Medical Center last year, she clashed with hospital staff trying to prevent her from wandering off. She was later sent to Park Royal psychiatric hospital in Fort Myers for evaluation under the state's Baker Act.

The VanderWoudes believe there are not enough mental health resources in Southwest Florida for Alzheimer's patients. They also believe hospital staff should be better trained in dealing with dementia patients.

"My biggest problem and concern: There's nothing around here that properly deals with dementia patients at an acute level," Saul VanderWoude said.

Sheila and Anton Pedisich, Bonita Springs

Anton and Sheila Pedisich live apart now that Anton, 79, has a room in the memory care unit.

Sheila Pedisich's husband Anton, 79, was diagnosed with dementia several years ago. The couple, who has been married for 53 years, live apart now.

Sheila lives in the independent living wing in The Terraces and visits Anton daily in the memory care unit there. She said the burdens of caring for her husband with dementia became overwhelming.

She eventually decided to move him into a special memory care unit in The Terraces. "By doing that, he gave me my life back," she said. "Because you don't realize that you're doing that 24/7. And, little by little, it drains you."