“We left the doctor’s office arm in arm – light-hearted, happy it wasn’t Alzheimer’s, sure we had dodged a bullet,” said Taylor, a Ferguson Township resident.

Instead, they faced a loaded gun.

Berrettini's mental struggles and sleep disruptions nine years ago were early symptoms of Lewy body dementia, a degenerative brain disease that progressively affects thinking, movement, behavior and sleep. It strikes about 1.3 million Americans, making it the second most-common form of dementia behind Alzheimer’s disease.

Despite its prevalence, LBD often is misdiagnosed as Alzheimer’s or Parkinson’s disease, though the medical community has become more aware of the dementia in the past decade.

For Taylor and her father, LBD led to two paths. Berrettini began a decline that stripped him of his reasoning powers and independence and ended with his death in March.

Taylor, a stay-at-home mother of two girls, became a caregiver – and then an advocate. Plunging into research about LBD, she wound up volunteering for the Atlanta-based Lewy Body Dementia Association, and later served two terms as its board president. Today, she’s the organization’s program director.

Her work started with an emotional task: helping a proud, literate man as his mind gradually crumbled.

“I was his voice,” Taylor said. “I think that’s what every LBD family needs to hear. They have to be their loved one’s voice.”

Downward spiral
Bruce Berrettini was an avid golfer in Allentown, an experienced world traveler and a robust Air Force veteran who enjoyed organizing his old squadron’s reunions.

He owned a personal computer when it was still a novelty and, as befitting his profession, was adroit at solving technical problems.

So when he needed help with basic tasks, such as using a word-processing program or installing software, his daughter was disturbed. Then he couldn't figure out his VCR connections.

Later, she learned that a failing executive function — the part of the brain that controls problem solving and analytical thinking — is one of the first signs of LBD. But at the time, she just knew something was wrong.

Her father began taking a dementia medication and seemed more his old self. He loaded programs and did his taxes.

“That told us there was something definitely neurological going on,” Taylor said.

In 2002, doctors said he had some cognitive impairment and a sleep disorder. It could have been normal aging; nobody seemed too concerned. A year later, though, he continued to deteriorate.

Strange locations disoriented him. Taylor had to make his travel arrangements. She came across LBD while researching dementia, and asked his doctor if he might have it. He might, she heard.

“The more I learned about LBD, the more I paid attention to what my dad was going through, and it became more likely that was what he had,” she said.

After he underwent back surgery in 2003, it all came to a boil. He drove himself home from the hospital, disregarding instructions, and jarred his back in a fall. Receiving an anguished call, Taylor rushed to Allentown to care for him for a week.

The truth hit her. He was alone, in pain and increasingly befuddled by daily life. Even with typed instructions, he couldn’t manage his various medications. No family lived nearby. She had to take him back.

During the next month, they talked about living options before he returned to Allentown. He finally decided to move near his granddaughters. He sold his house, and they made a down payment on a local condo.

But after he became delirious and confused in the hospital from new medication following a second back surgery, Taylor knew he had grown worse. The condo was out. She took him in.

The arrangement quickly consumed her.

“Emotionally, I think the most difficult part was the transition from daughter, the role reversal,” she said. “I went from his daughter to being his caregiver.”

Her father had lucid days. But then there were days when he would look out in the backyard and mistake a rock for a flag. Once, he puzzled over the difference between his eyeglasses and his watch. He could no longer balance his checkbook.

Finances had been the most private part of his life, so at first, he and Taylor struck a deal. She would organize his bills and he would write out checks. Then it shifted to her writing the checks for him to sign in a scrawl that became increasingly cramped as LBD reduced his fine motor skills.

“Everything took that very slow motion because that protected my dad’s dignity as much as possible,” she said.

Socially isolated, his hobbies gone, he stuck to her side. She leaned on her husband, Jim, for support but, even so, fell into depression that required counseling.

“Definitely, it was a hard time,” she said. “I felt like I had lost the balance that my husband and I had built for ourselves and our family. Dad had his progressive illness that was becoming more and more difficult.”

In March 2004, a full diagnostic test indicated he had LBD. Taylor suspected as much from the crippling dementia, sleep disorder, fluctuating cognition levels and Parkinson’s-like symptoms.

“Enough dots were beginning to connect,” she said.

Her father couldn’t care for himself any more, but he could still make decisions. Taylor explained to him that an assisted-living facility, after the numbers were crunched, made more sense than a full-time nurse. Still an engineer at the core, he agreed and moved to Brookline Village in State College.

Living with LBD
Taylor’s evolution into an advocate began out of a need for information.

In 2003, her research led her to an online LBDA forum for caregivers — and she found kindred spirits who immediately understood the “emotional tidal wave” of nursing a parent with dementia.

Learning how to react to erratic behavior takes a while, she said.

“Is it them or is it the disease?” she said. “Which one is it? You can’t get mad at them for something the disease is doing.”

LBD caregivers also struggle with the disease’s unpredictability. Not only can cognition vary from day to day, complicating plans, but outsiders may not fully understand what caregivers are going through. New situations and people may energize LBD sufferers into appearing normal and functioning.

“The LBD caregiver community calls it ‘showtime,’ ” Taylor said. “You bring your loved one into the doctor, and the doctor doesn’t see what you see at home. And the family members who stop in and have dinner with you may not see the extent of the decline you live with on a day-to-day basis.”

Once she realized that LBD knowledge was “very, very low” among physicians, she began volunteering for the LBDA, eventually becoming one of its leaders. The connection helped her care for her father and spurred her to do more.

“I could not have been more fortunate, and it was still hard for me,” she said. “So how the heck are other families managing with it?”

Currently, she said, the association is trying to teach family care physicians and mount public-awareness campaigns. Dr. John Duda, a State College native and LBD expert, sees recognition of LBD “gaining widespread acceptance in the general medical community” as more doctors realize that not all dementia is Alzheimer’s disease.

But there’s room for improvement, and he applauds the LBDA’s outreach efforts.

“I think the main message is to make sure patients and caregivers seek education regarding different diagnoses,” said Duda, the director of the federal Veterans Affairs Parkinson’s Disease Research, Education and Clinical Center in Philadelphia.

“The educated consumer is the best patient. There are resources, many of which are available from the LBDA, that can really help a patient and a caregiver with the management of the illness, and with their physician.”

In Taylor’s case, her father’s daily life improved even as his intellect deteriorated into paranoid delusions about thieves trying to steal his wallet and TV remote control, and his strength dwindled to the point of needing a wheelchair.

He adapted well to the facility, feeling comfortable with the staff and residents, Taylor said. Sunday dinners at her house and Thursday lunches out together became weekly rituals.
It was easier on both of them.

“I told him, ‘Dad, I want to be your daughter, not your nurse,’ ”  Taylor said. “ ‘I want to make your life rich, not just sustain it.’ ”

 Chris Rosenblum can be reached at (814) 231-4620