Patrick Stewart, the actor who played Captain Jean-Luc Picard and Professor X, has died at 86. His death followed “a brief and poignant journey with Alzheimer’s Disease and Lewy Body Dementia,” his spokesperson’s statement said, CBS News reported.

The second diagnosis is the one many readers are now looking up. Lewy body dementia is the second most common degenerative dementia after Alzheimer’s, the Lewy Body Dementia Association says. It affects more than 1 million people in the US. Yet federal health researchers say its early signs are often mistaken for something else.

A diagnosis he had not made public

Stewart had not publicly disclosed either diagnosis before his death, TODAY reported. ABC News said it is not clear when he received them.

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The statement came from Kelly Bush Novak, his longtime spokesperson, and was shared on his social media accounts. “We announce with great sorrow the passing of Sir Patrick Stewart yesterday at his home in Los Angeles,” it said, according to NBC News. His survivors include his wife, Sunny, and his children.

It also described his last days, in words quoted by ABC News. Family and friends surrounded him with “live music, prayer, tears, laughter,” the statement said.

The statement did not go further into his illness. What follows is what federal health agencies and patient groups say about the disease itself.

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One protein, clumping across the brain

Lewy body dementia, or LBD, involves abnormal deposits of a protein called alpha-synuclein, the National Institute on Aging says. Those deposits are the Lewy bodies. They take their name from Friedrich Lewy, a German neurologist who found them in 1912 in people with Parkinson’s.

Inside nerve cells, the protein forms clumps that make neurons work less well and eventually die. The damage reaches areas that handle thinking, memory, movement, sleep, emotion and smell. It can also reach nerves in the gut and heart. That explains why constipation and dizziness on standing appear on the symptom list.

LBD is an umbrella term for two diagnoses. In dementia with Lewy bodies, thinking problems come first.

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In Parkinson’s disease dementia, movement problems come first. Doctors make that diagnosis when thinking changes appear more than a year later, the NIA says. Over time, people with either form develop similar symptoms.

The disease usually begins at 50 or older and affects slightly more men than women.

From diagnosis to death, it lasts five to seven years on average, the NIA says. The range runs from two to 20 years. There is no cure.

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Why it gets mistaken for Alzheimer’s

Dementia with Lewy bodies is “often misdiagnosed or missed altogether,” the NIA says. Its early symptoms can look like Alzheimer’s or a psychiatric illness. The clearest difference is where the trouble starts. Memory loss may not be obvious at first, while attention, planning and visual judgment slip earlier.

The NIA lists the signs that set LBD apart.

• Swings in alertness. A person may stare into space, sleep for hours in the daytime or seem sharp one day and confused the next.
• Visual hallucinations. They occur in most people with LBD, often early, and are typically realistic and detailed, such as children or animals.
• Acting out dreams. REM sleep behavior disorder can involve yelling, punching or falling out of bed, sometimes years before other symptoms.
• Parkinson-like movement. Slowness, stiffness, a shuffling walk, a tremor at rest or smaller handwriting.
• Body-function changes. Blood pressure drops, fainting, falls, constipation and a weak sense of smell.

Families and doctors can blame each of those on something else. Fluctuations “are not always easy for a doctor to identify,” the NIA says. Early movement signs “may be very mild and easily overlooked.” Sleep disorders are common in LBD but often go undiagnosed.

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Part of the problem is the doctor’s office. Many physicians are unfamiliar with LBD, so patients may see several doctors before getting the diagnosis, according to the agency. No single scan or blood test can confirm it in a living person; certainty comes only from a brain autopsy.

That gap is narrowing. Certain PET and SPECT scans have shown promise in telling the two diseases apart, NINDS says. So have spinal fluid tests and skin biopsies. LBD is also closely tied to Parkinson’s, the disease Hall of Famer Marshall Faulk disclosed this month.

Having both diseases at once is common

Stewart’s statement named two diseases, and that combination has a name: mixed dementia. The Alzheimer’s Association defines it as brain changes from more than one cause of dementia at once. Alzheimer’s changes “often coexist with Lewy bodies,” it says.

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Mixed dementia may be far more common than doctors once thought. The association cites an NIA-funded study at Rush in Chicago.

Researchers followed volunteers through life, then examined their brains after death. Of participants with a dementia diagnosis, 94% had an Alzheimer’s diagnosis. But 54% of those brains showed other disease alongside Alzheimer’s, and Lewy bodies were the second most common.

Put plainly, many people with Lewy body changes carry an Alzheimer’s label. Often only an autopsy reveals the Lewy part.

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That matters for families because it changes which medicines are safe.

The medication warning families are told to carry

The sharpest practical difference between LBD and Alzheimer’s is a drug warning. People with LBD can react badly to antipsychotic medicines, says the National Institute of Neurological Disorders and Stroke. Doctors sometimes use those drugs for hallucinations, agitation or delusions.

The reactions include more confusion, worse parkinsonism, extreme sleepiness and blood pressure drops, and some are permanent. The agency says doctors generally should not prescribe older antipsychotics such as haloperidol for LBD. In rare cases, a reaction called neuroleptic malignant syndrome can be deadly.

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Emergency room and long-term care staff may not know about that sensitivity, the NINDS page says. It advises caregivers to tell hospital staff about the diagnosis. They should ask staff to consult the person’s neurologist before giving any drug to control behavior. People with LBD should talk with their doctor before reducing or stopping a medicine, the agency adds.

Some Alzheimer’s drugs, called cholinesterase inhibitors, may help thinking and behavior. The FDA has approved one, rivastigmine, for cognitive symptoms in Parkinson’s disease dementia, according to NINDS. Hallucinations that are not disruptive may not need treatment, the NIA says. Because some medicines can make symptoms worse, NINDS stresses working with a health professional who knows the disease.

For families sorting out symptoms, the NIA advises telling a doctor about any sudden or major change in ability or behavior. A separate BreezyScroll explainer looks at what a Johns Hopkins study found about daytime napping and dementia risk.

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From the Royal Shakespeare Company to the Enterprise

ABC News gives his birthplace as Mirfield, England, and his birth date as July 13, 1940. He joined the Royal Shakespeare Company in 1966, NBC News said. His Broadway debut came in 1971 in “A Midsummer Night’s Dream.”

He played Picard on “Star Trek: The Next Generation” from 1987 to 1994. He returned for “Star Trek: Picard” from 2020 to 2023. He first played Charles Xavier in the 2000 “X-Men” film.

CBS notes a 1995 Grammy for a spoken word album for children. Queen Elizabeth II knighted him in 2010, and he published a memoir, “Making It So,” in 2023, according to NBC.

Most recently, he appeared in a trailer for “Avengers: Doomsday,” which is due in theaters in December, NBC reported.