Ted Turner Dies: What to Know About Lewy Body Dementia

Few people exit a life quite the way Ted Turner entered it: loudly, on their own terms, and impossible to ignore. The man who bet everything on a 24-hour cable news channel when no one believed the idea would work, who sailed across the Atlantic and raced in the America’s Cup, who owned more land than many small nations and kept the world’s largest private herd of bison, spent the last years of his life in a quieter fight. A fight against a disease that slowly erodes the brain, clouds the mind, and takes with it everything a person once took for granted.

In his final years, Turner retreated from the public eye, and he publicly acknowledged his affliction with Lewy Body Dementia in 2018. He was characteristically direct about it. In an interview shortly after his diagnosis, he spoke openly about living with LBD, saying: “It’s a mild case of what people have as Alzheimer’s. It’s similar to that. But not nearly as bad. Alzheimer’s is fatal. Thank goodness I don’t have that.” He then paused, apparently struggling to recall the name of his own illness before eventually landing on it: “Dementia. I can’t remember what my disease is.” It was equal parts poignant and telling.

Turner’s death at 87 came eight years after he first announced his diagnosis. He had also been hospitalized with pneumonia in 2025 and required recovery at a rehabilitation facility. His early diagnosis may have played a role in extending both his life and his quality of life. For everyone else who may be facing this disease, as a patient, a spouse, a child, or a caregiver, his story is both a warning and a blueprint.

What Is Lewy Body Dementia?

Lewy body dementia is a brain disorder that can lead to problems with thinking, movement, behavior, and mood. More than 1 million people in the United States are diagnosed with LBD, making it one of the most common forms of dementia, and it is a progressive disease, meaning symptoms start slowly and worsen over time.

The disease is named for the abnormal protein deposits it leaves behind. Lewy bodies, named after Dr. Friedrich Lewy who first discovered them in 1912, are deposits of abnormal proteins inside brain cells, according to the Lewy Body Society. More precisely, these are abnormal clumps of a protein called alpha-synuclein that accumulate in areas of the brain involved in thinking, memory, and movement. They build up and affect chemicals in the brain, which can lead to problems with thinking, movement, behavior, and mood.

LBD includes two related diagnoses: dementia with Lewy bodies and Parkinson’s disease dementia. The distinction between them hinges almost entirely on timing. In dementia with Lewy bodies, problems with thinking, unpredictable changes in attention and alertness, and visual hallucinations develop early in relation to movement symptoms. In Parkinson’s disease dementia, movement symptoms start first, and problems with thinking and changes in mood and behavior develop later, though not everyone with Parkinson’s disease will develop dementia. Think of them as two roads leading to the same destination, but with different starting points.

How Common Is It, Really?

The honest answer is that LBD is far more common than most people realize, partly because it is so routinely missed. Dementia with Lewy bodies alone is estimated to affect 1.4 million people in the United States, and accounts for about 5 percent of all dementia cases in older individuals, making it the second most common dementia after Alzheimer’s disease. Some clinical estimates place the figure even higher. LBD is an under-diagnosed condition because it is poorly understood and its clinical features overlap with other more common disorders like Parkinson’s disease and Alzheimer’s disease, though studies have shown it may account for up to 20 to 30 percent of all dementia cases.

LBD accounts for about 10 to 25 percent of all dementia cases, making it quite common even though it is not as well known as Alzheimer’s disease. Symptoms typically begin after age 50, but the condition can affect adults at any age. Many families go through months or even years of uncertainty before getting the right diagnosis, partly because LBD is less familiar to many doctors than other types of dementia.

Recognizing the Symptoms

Although younger people can have LBD, it typically begins at age 50 or older. Being older is the greatest known risk factor, and men are more at risk than women. The warning signs span several categories, and it’s the combination of symptoms, not any single one, that tends to point toward LBD rather than another condition.

Cognitive and Psychiatric Symptoms

People with dementia with Lewy bodies have a decline in thinking ability, especially in the areas of attention, visual perception, and planning and organization. Unlike Alzheimer’s, where memory loss typically dominates early on, LBD may not cause short-term memory loss in the same way. People with both conditions have trouble with thinking, alertness, and paying attention, but in LBD, those problems come and go.

Visual hallucinations, or seeing things that are not there, are a common symptom and tend to happen early on. Most people with dementia with Lewy bodies experience visual hallucinations, which often involve people or animals. This distinguishes LBD sharply from Alzheimer’s: hallucinations often appear in the first few years of LBD, whereas people with Alzheimer’s usually don’t have hallucinations until the later stages.

Movement Symptoms

People with Lewy body dementia commonly have symptoms of Parkinson’s disease, which may include rigid muscles, slow movement, trouble walking and tremors. These movement symptoms create real day-to-day risk: stiffness and balance problems raise the likelihood of falls, which in someone with a progressive brain disease can spiral quickly into more serious complications.

Sleep Disturbances

One of the most diagnostically useful, and often overlooked, features of LBD is what happens at night. REM sleep behavior disorder may be the first sign of dementia with Lewy bodies. It can occur years before other symptoms appear, and individuals with the disorder act out their dreams, talking and moving in their sleep when they should be still. This condition may include vivid dreaming, talking in one’s sleep, violent movements, or falling out of bed. The dreams often involve the perception of being chased or attacked. This can be challenging for both the person with LBD and the caregiver.

Research covered in The Hearty Soul’s guide to early dementia signs notes that sleepwalking, shouting during sleep, or physically acting out dreams can emerge years before other symptoms of Lewy body dementia appear, a critical window for early intervention.

Autonomic Dysfunction

One feature of LBD is the presence of orthostatic hypotension, which is often seen early in the disease. Orthostatic hypotension means a sudden drop in blood pressure when standing up, which causes dizziness and significantly increases fall risk. Beyond that, LBD can disrupt many other automatic body functions, including heart rate, temperature regulation, bladder control, digestion, and sweating.

Why LBD Is So Frequently Misdiagnosed

Ted Turner initially described his symptoms as similar to “a mild case” of Alzheimer’s. That framing wasn’t unusual. It’s how many people first understand this disease, and often how doctors first frame it too. Dementia with Lewy bodies is often hard to diagnose early because symptoms may at first look like Alzheimer’s or a mental illness such as schizophrenia.

The case of Robin Williams is perhaps the most striking illustration of this problem. Robin and his wife, Susan Schneider Williams, sought help from numerous medical specialists, but were unable to obtain a correct diagnosis before his untimely death. After his death, an autopsy revealed advanced stages of Lewy body dementia, a less common form of dementia that affects an estimated 1.4 million people in the US. His autopsy revealed one of the most severe LBD cases pathologists had seen. Williams had been living with what appeared to be Parkinson’s disease and depression.

Lewy body dementia is often misdiagnosed as Alzheimer’s, but the two conditions have different causes and symptoms, according to Dr. James E. Galvin, a professor of neurology at NYU Langone Medical Center. Diagnosing LBD can be challenging, and early LBD symptoms are often confused with similar symptoms found in other brain diseases like Alzheimer’s disease.

Only an autopsy can provide a conclusive diagnosis, but doctors can recognize the symptoms with the help of physical and neurological examinations, mental status tests, and brain imaging. A specialist team may also use DaTscan imaging to assess dopamine transporter activity in the brain. Reduced activity suggests LBD or Parkinson’s, though no single test can confirm the diagnosis with certainty during life.

The Medication Risk Every Family Member Must Know

This is arguably the most critical piece of practical information for anyone who has a loved one with LBD, or who suspects they might. People with Lewy body dementia have a serious and life-threatening sensitivity to a class of drugs called antipsychotics (also called neuroleptics).

Antidopaminergic medications, including antipsychotics, are known to worsen motor and neuropsychiatric symptoms, including cognition and psychosis, in patients with dementia with Lewy bodies. The intensity of worsened clinical symptoms may vary and can result in mortality in certain situations.

First-generation antipsychotic medications, such as haloperidol (Haldol), should not be used to treat Lewy body dementia. They may cause severe confusion, severe Parkinsonism, sedation and sometimes even death.

Even some newer antipsychotics carry significant risk. Atypical antipsychotics, especially those with high D2 receptor antagonism such as olanzapine and risperidone, should also be avoided due to the risk of severe neuroleptic sensitivity reactions, neuroleptic malignant syndrome, worsening parkinsonism, somnolence, and orthostatic hypotension, according to the Lewy Body Dementia Association.

It is estimated that a high percentage of DLB patients exhibit worsening parkinsonism, sedation, immobility, or even neuroleptic malignant syndrome (NMS) after exposure to antipsychotics. NMS is a rare, life-threatening medical emergency characterized by fever, generalized rigidity, and breakdown of muscle tissue that can cause renal failure and death.

Why does this matter for families? Because LBD is so commonly misdiagnosed as psychiatric illness or as another form of dementia, many patients end up in emergency rooms or general hospital wards where the attending staff are unaware of the diagnosis. This is even more important to be aware of if a loved one hasn’t yet received a Lewy Body Dementia diagnosis, because since LBD is often challenging to diagnose, many individuals with the condition are misdiagnosed in the early stages and given medications that cause adverse effects.

Families should carry a written medication list to every hospital visit and make sure emergency physicians are informed of the LBD diagnosis before any antipsychotic is administered. If surgery is planned, talk with the anesthesiologist in advance to discuss medication sensitivities and risks unique to LBD. People with LBD who receive certain anesthetics may become confused or delirious and have a sudden, significant decline in functional abilities, which may become permanent.

Treatment: What Is Available Today

There is no cure for Lewy body dementia. Although LBD currently cannot be prevented or cured, treatments may be able to help with some of the symptoms, and a treatment plan may involve medications, physical and other types of therapy, and counseling.

Physicians may offer different medications, including cholinesterase inhibitors, such as rivastigmine, galantamine, and donepezil, to improve thinking and memory. Cholinesterase inhibitors work by slowing the breakdown of acetylcholine, a chemical messenger in the brain. LBD depletes acetylcholine more aggressively than Alzheimer’s does, which is one reason this drug class tends to show stronger benefits in LBD patients. Acetylcholinesterase inhibitors that only marginally help Alzheimer’s disease may be more effective in treating dementia with Lewy bodies. Those who tolerate them show improved cognition, improved activities of daily living, and reduced behavioral disturbance, and these effects may be more durable than in Alzheimer’s, lasting at least one year.

Although symptomatic treatments remain scarce, emerging evidence supports a multipronged approach that integrates pharmacological and non-pharmacological interventions targeting different signs and symptoms, according to a 2025 review published in The Lancet Neurology.

For movement symptoms, physicians may cautiously use low doses of carbidopa-levodopa (a Parkinson’s medication). For sleep disorders, melatonin or very low-dose clonazepam may be considered for REM sleep behavior disorder. Management often requires a multidisciplinary approach that includes neurologic, psychiatric, rehabilitative, and caregiver support interventions.

The Lewy Body Dementia Association stresses that early diagnosis is not just emotionally valuable. It is clinically essential. LBD is a multisystem disease that usually requires a comprehensive treatment approach, with a team of physicians and other health care professionals. Early diagnosis and treatment may extend quality of life and independence. Many people with LBD enjoy significant lifestyle improvement with a comprehensive treatment approach, and some may even experience little change from year to year.

Prognosis and What Families Should Realistically Expect

People with LBD live on average five to eight years, but may live as few as two years or as long as 20 years, from the time of diagnosis to death. How fast symptoms develop and change varies depending on the person’s overall health, age, and level of symptoms. Ted Turner, diagnosed at 79 and dying at 87, lived eight years with the disease, consistent with that average and a reflection of what comprehensive care and early detection can achieve.

Knowing which type of LBD a person has is important to tailor treatment to symptoms and to understand how the disease will likely progress. Some people with LBD may not experience significant movement problems for several years, while others may have them early on. Knowing what to expect can help people with LBD and their families prepare for changes that may be needed, for example to help prevent falls.

Families should also understand that LBD does not progress in a straight line. Symptoms fluctuate with time and vary among different individuals. A patient may seem notably better on some days and significantly worse on others. This is not the disease improving. It is the characteristic unpredictability of LBD, and it can be disorienting for caregivers who may interpret a good day as a sign of recovery.

What This Means for You and Your Family

Ted Turner’s story matters not only as the obituary of a remarkable figure, but as a public health moment. LBD has affected more than one million Americans for decades, and yet most people learn about it only when a celebrity is diagnosed or dies. That gap costs lives, both through delayed diagnosis and through preventable medication errors.

No specific lifestyle factor has been proven to increase one’s risk for LBD. However, some studies suggest that a healthy lifestyle, including regular exercise, mental stimulation, and a healthy diet, might reduce the risk of developing age-associated dementias.

For individuals and families, the practical steps are clear. If a loved one over 50 is experiencing fluctuating confusion, visual hallucinations, unexplained movement changes, or is acting out their dreams violently during sleep, push for a specialist referral. Ask specifically for a neurologist or geriatrician with LBD experience, not a general practitioner alone. If a diagnosis is made, document it thoroughly and carry that information to every medical appointment, especially emergency visits. Working with healthcare providers who have experience with this condition is essential, because LBD requires special knowledge about which medications are safe and effective. With an accurate diagnosis, a healthcare provider can prescribe medications that help manage symptoms while avoiding those that may be harmful.

The medication risk alone makes early and accurate diagnosis one of the most protective things a family can pursue. There is no easy path through this disease. But families who understand it, who know what to watch for, what to ask, and what to refuse, are in a meaningfully stronger position than those who don’t. That knowledge, pursued early, is the closest thing to a safety net this disease allows.

Disclaimer: This information is not intended to be a substitute for professional medical advice, diagnosis or treatment and is for information only. Always seek the advice of your physician or another qualified health provider with any questions about your medical condition and/or current medication. Do not disregard professional medical advice or delay seeking advice or treatment because of something you have read here.

AI Disclaimer: This article was created with the assistance of AI tools and reviewed by a human editor.