When her husband John was diagnosed with Lewy body dementia, Pat Snyder learned it was the second-most common dementia but a complete mystery.
The UNC alumni had raised two children and built successful careers. John Snyder had been a criminal attorney and a Rutherford County prosecutor before going into private practice; Pat Snyder was a retired teacher then working as a manager and paralegal in John’s law office.
They didn’t recognize it, Pat Snyder said, but there had been signs of trouble: sleep apnea and REM sleep disorder in which John would act out his dreams. His thyroid surgery in 2001 brought new symptoms, she said. He became depressed and stumbled over his words. His blood pressure fluctuated wildly. His mind, always sharp, would grow foggy after a few hours, she said.
They consulted multiple doctors over the next seven years. Then she found John at home with the police, telling them about a bear in the back yard. Only there was no bear, she said, just a tree stump.
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A doctor finally diagnosed John, then 67, with Lewy body dementia but refused to treat him, Snyder said.
She then found UNC cognitive neurologist Daniel Kaufer, who gave the couple “that rare and wonderful thing called hope,” she said.
“It took me a while to acclimate to the fact that we had actually found some solutions, because I was almost burned out at that point, desperate to find what in the world was going on with my husband, because the symptoms were just all over the map,” Snyder said.
Lewy body dementia, or LBD, is a neurocognitive disorder that shares traits of both Alzheimer’s and Parkinson’s disease, said Kaufer, director of the UNC Memory Disorders Program. It affects the behavior, moods, motor skills and thinking of roughly 1.4 million Americans.
LBD garnered little public attention until actor and comedian Robin Williams died in 2014.
His widow, Susan Williams, wrote in a recent article that Williams was struggling with “a terrorist in his brain” that an autopsy later identified to be associated with Lewy body dementia.
Kaufer noted that the combination of sleep disruption, visual hallucinations and fluctuating cognitive deficits that are LBD hallmarks can wreak havoc on patients who haven’t been properly evaluated and diagnosed.
I was desperate to find what in the world was going on with my husband, because the symptoms were just all over the map.
Although Japan approved donepezil in 2014 for LBD, there are still no cures, no tests and very little research data in the United States, Kaufer said. U.S. doctors, if they understand the disease, can only treat the ever-changing symptoms.
“I think the fact that we’re doing (several) studies now will help the U.S. catch up to other parts of the world in understanding that Lewy body dementia is a widespread and common problem, and that it is a potentially treatable condition, and we need to identify the treatments for it,” Kaufer said.
One possible treatment, sponsored by Axovant Sciences, is the neurotransmitter intepirdine, or RVT-101. Phase 3 trials of intepirdine’s effectiveness in treating mild to moderate Alzheimer’s disease could lead to FDA approval, but the drug also is being tested for its safety and tolerability among LBD patients.
Axovant also is sponsoring Phase 2 trials looking at whether the drug nelotanserin can safely and effectively treat LBD hallucinations and REM sleep disorders.
Those symptoms can show up decades before a diagnosis, Kaufer said. Typical patients are 50 or older, and according to a Lewy Body Dementia Association survey, a quarter of them were diagnosed first with a mental illness, he said.
Kaufer praised Snyder’s work advancing LBD awareness since her husband’s diagnosis and his death in 2015. In 2012, Snyder published “Treasures in the Darkness,” in which she shared their story and tips for living with the disease.
Reducing stress at home was key, she said, through music, aromatherapy, massage and laughter. She planned ahead, relied on friends, and learned to reduce her expectations, communicate better and live in the moment.
She researched the disease and shared her knowledge with others, leading a Yahoo support group for LBD caregivers. She remained vigilant about John’s care, working closely with his doctors and guarding against the risk that medical staff with a limited understanding of LBD could do something to cause more harm.
“What you have to do is reach down and, like there are little pieces of rocks on the floor, you pick them up one at a time, and you just start creating a mosaic. You create a new life and a new normal, and it can have its own beauty,” she said.
A free online booklet about Lewy body dementia is available now at bit.ly/2iHbK8N. The newly formed NC LBD Advisory Group also plans to launch a website soon – LBD-NC.com – that will be a one-stop site for online and local resources.
Readers interested in UNC’s Lewy body dementia clinical trials should call 919-966-8612.