Coping with an Unwelcome Disorder: Lewy Body Dementia

For Dean Jennings, neurological disease arrived cloaked in disguise. It began with memory problems at work, which he hid from his wife and co-workers, then revealed itself with balance problems, a shuffling walking pattern and an unexpected fall on the tennis court. Dean’s initial diagnosis was “possible Parkinson’s disease,” and later he was treated with medications for Parkinson’s disease. But Dean’s true problem, which was diagnosed after Dean began experiencing hallucinations, was Lewy body dementia, which is related to both Parkinson’s and Alzheimer’s diseases.

Judy Towne Jennings, PT, MA

The story of Dean Jennings, a former patient of Andrew Duker, MD, a UC Health neurologist, is told in a new book for caregivers, Living with Lewy Body Dementia, by Dean’s widow, Judy Towne Jennings, PT, MA , of Cincinnati. Dr. Duker, who treated Dean at the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders at the UC Gardner Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health, served as one of Ms. Jennings’s editors.

Although Lewy body dementia, or LBD, does not receive as much publicity or attention as Alzheimer’s disease or Parkinson’s, it is the third most common cause of dementia after Alzheimer’s and vascular dementia, accounting for 10 to 25 percent of cases, according to the Alzheimer’s Association.

The hallmark of the disease is the presence of Lewy bodies, normal proteins that become abnormally clumped together inside neurons, or brain cells. They are named after Dr. Frederick Lewy, the neurologist who discovered them while working in Dr. Alois Alzheimer’s laboratory and who first described them in 1912. Dr. Lewy discovered Lewy bodies in the brains of people with Parkinson’s disease.

Lewy body dementia is typically diagnosed via symptoms, medical history and a complete laboratory workup that can rule out other causes of cognitive problems. Brain imaging does not reveal changes until the patient is in advanced stages of the disease.

Individuals with Lewy body dementia can have difficulty in any of the cognitive domains, especially memory, visuospatial skills, and the ability to plan, anticipate and think abstractly. Other symptoms may include parkinsonism, visual hallucinations, fluctuations in attention and alertness during the day and sensitivity to temperature changes. Lewy body dementia also can be associated with sleep symptoms, such as acting out dreams at night.

The diagnosis of Lewy body dementia, Ms. Jennings writes, “felt like a torpedo piercing my chest.”

Families facing this diagnosis receive the unwelcome news that Lewy body disease, unlike Parkinson’s, often involves a rapid, cognitive decline. How caregivers cope becomes an important part of the patient’s overall healthcare scenario.

Andrew Duker, MD

“Just as with Parkinson’s disease, every patient has his or her own version of Lewy body dementia, and each person will be affected differently by the disease,” Dr. Duker notes. “There will be good days and bad days, and with LBD the good and the bad can fluctuate even over hours within the same day. I advise caregivers to hold on to the good periods when they come and use them to help get through the bad periods.”

The hallucinations that frequently occur can be especially traumatic for family members. Dr. Duker advises patience when a loved one is hallucinating.  “Their brain is feeding them incorrect information, but to them what they are seeing is quite real,” he says. “If the hallucination is not frightening or threatening, choose your battles as to when or when not to try to explain what is real.  If the hallucinations are frightening to them, tell the doctor, as there are medications that can help.”

Dr. Duker strongly encourages caregivers to take respite time for themselves. “You cannot expect to care for your loved one 24 hours per day, seven days per week, without burning out.”

Dr. Kelley stresses that treating contributing factors, including underlying medical disorders, psychiatric conditions, and sleep issues, is essential. “Exercise and other physical activity may be helpful, and patients are encouraged to remain socially and cognitively active,” he says. “Because both cognitive changes and parkinsonism can increase the risk of falls in those with Lewy body disease, taking steps to reduce the risk of falling is vital.”

Ms. Jennings worked to maintain an “I-can attitude” for both her husband and herself. To help him navigate the household after his retirement from his work as an engineer, she writes that she “circled the start buttons on the dishwasher, labeled the stove burner and painted an arrow on the clothes dryer controls to help him visually see how to operate the appliances.”

She also made the days more precious by scheduling outings, watching sporting events that her husband enjoyed, encouraging him to resurrect old hobbies (including his high school band instrument) and listening to audio books. “I always had a vacation looming in the future to keep my sanity,” Ms. Jennings writes. “Mostly, I was trying to encourage Dean to keep moving … We found many ‘carrots’ that inspired both of us to get out of bed each morning and make the decision to celebrate life.”

— Cindy Starr

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