Patrick Stewart, the classically trained stage actor known for his roles in the “Star Trek” franchise and “X-Men” films, died at age 86, his family announced Thursday.
His death followed what his spokesperson called “a brief and poignant journey” with Alzheimer’s disease and Lewy body dementia.
Stewart’s diagnoses had not been previously disclosed, the Associated Press reported.
Alzheimer’s disease is the most common form of dementia in the U.S., affecting more than 7 million Americans. Lewy body dementia is the second most common neurodegenerative dementia in the country, affecting more than 1 million people.
“Lewy body dementia is more common than many people realize; however, it is often overlooked or mistaken for Alzheimer’s or Parkinson’s disease,” Michael Okun, MD, of the University of Florida Fixel Institute in Gainesville, told MedPage Today earlier this year.
“Awareness matters because recognizing the diagnosis early can change care, safety, and quality of life for families,” he added.
Lewy bodies are abnormal clumps of alpha-synuclein, which is also associated with Parkinson’s disease. Lewy body dementia is an umbrella term that includes two disorders: dementia with Lewy bodies and Parkinson’s disease dementia. No single test can diagnose Lewy body dementia in living people.
Symptoms of Lewy body dementia can include memory and problem-solving deficits, hallucinations and delusions, slow or rigid movement, balance problems, sleep disorders including restless leg syndrome and dream enactment, anxiety and depression, and autonomic dysfunction. Loss of smell is often an early sign.
Because these symptoms overlap with those of other neurodegenerative disorders, Lewy body dementia can be difficult to diagnose. The process can be frustrating for patients and families, a challenge Susan Schneider Williams described in a Neurology essay about her husband, actor and comedian Robin Williams, who developed Lewy body disease and died by suicide.
“One of my early research studies involved interviewing former caregivers of individuals with dementia with Lewy bodies and asking them about the last 3 months of life,” Melissa Armstrong, MD, MSc, also of the University of Florida, told MedPage Today. “I was surprised when — even though the questions were about the end of life — over a third of interview participants started by talking about how misdiagnosis, delays in diagnosis, or conflicting diagnoses remained important parts of their experiences.”
Several factors might explain this, Armstrong noted. “Some key clues, like dream enactment, might be missed,” she said. “Some clues, like hallucinations, might be misattributed to other issues like a psychiatric diagnosis — for example, schizophrenia. Dementia with Lewy bodies requires clinicians to put a bunch of different pieces together. That can make the diagnosis more challenging.”
Complicating the problem is the fact that abnormal alpha-synuclein and Alzheimer’s pathology can co-exist, which may affect outcomes. About 30% to 60% of Alzheimer’s autopsy cases show concurrent alpha-synuclein pathology in brain tissue.
“When families hear ‘Lewy body dementia’ for the first time, many say something like ‘we knew something was different.’ The combination of memory, movement, sleep, and behavioral symptoms can be confusing,” Okun said.
“Lewy body dementia is not rare in older adults,” he added. “We need better recognition, better tools, and more conversations about symptoms like hallucinations, dream enactment, and fluctuating thinking.”
Reporting from the Associated Press contributed to this story.
