Living with Lewy Body Dementia: Early Signs, Famous Stories, and Support for Caregivers

When most people think of dementia, Alzheimer’s usually is the first thing to come to mind. But another form of dementia—Lewy Body Dementia (LBD)—quietly affects more than a million Americans and their families.

It’s complex, it’s often misdiagnosed, and it takes a heavy toll not just on the person living with it, but also on caregivers who struggle with exhaustion and compassion fatigue.

Recently, two well-known families—those of comedian Robin Williams and Amazon founder Jeff Bezos—have been touched by this disease. This reminds us how devastating and far-reaching the condition can be—and that nobody is immune.

In this post, we’ll explore the early signs of Lewy Body Dementia, the challenges for patients and caregivers, the importance of compassion fatigue prevention, and how inclusion works to ameliorate some of the challenges when we embrace dignity and support.

What Is Lewy Body Dementia?

The National Institute on Aging (NIA) describes Lewy Body Dementia as a “complex and challenging” progressive brain disorder caused by abnormal protein deposits called Lewy bodies that disrupt normal brain functioning. These deposits affect memory, movement, sleep, and thinking.

Lewy Body Dementia Early Signs

Some of the most common early warning signs for LBD include:

• Changes in mood
• Fluctuating alertness—someone may be clear and engaged one moment, then deeply confused the next
• Vivid visual hallucinations
• Parkinson’s-like motor symptoms such as tremors and stiffness
• Sleep issues such as insomnia, acting out dreams in sleep, and restless leg syndrome
• Memory loss
• Trouble planning
• And decreased attention

Because these symptoms overlap quite a bit with Alzheimer’s and Parkinson’s, an accurate Lewy Body Dementia diagnosis is often delayed. Unfortunately, some medications given for misdiagnosed conditions can make the symptoms of LBD even worse.

Challenges for People Living with Lewy Body Dementia

Obviously, the physical symptoms of Lewy Body Dementia are challenging. But the emotional and social challenges are just as disruptive to patients’ lives—and that of their caregivers.

Medical and physical challenges

• Delayed or incorrect initial diagnosis (usually as Alzheimer’s or Parkinson’s) can result in harmful medications and unnecessary suffering.
• Medication sensitivity often accompanies an incorrect diagnosis (some drugs for Parkinson’s or antipsychotics can worsen LBD symptoms).
• Movement and sleep disturbances often progress quickly, adding to frustration.

Emotional challenges

• Many people are aware of their own cognitive decline, leading to depression and anxiety.
• Hallucinations or delusions can create fear and distress.
• Loss of independence can be a devastating blow for people who have been highly independent previously.

Social challenges

• Stigma caused by hallucinations and misunderstanding of their symptoms often lead patients to withdraw.
• The lack of awareness in the public about LBD compared to Alzheimer’s means there are fewer resources and less support.

This is why awareness matters so much—and why the stories of famous people like Robin Williams and Jackie Bezos are so important for promoting public understanding.

My Experience with a Lewy Body Dementia Patient

In my work as a Speech Language Pathologist, I’ve sometimes worked with people dealing with Lewy Body Dementia. I have a current client suffering from LBD that I’ve worked with on and off for the past three years.

Her memory, most of the time, is vivid and concise. For example, she usually remembers what she ate recently, remembers conversations she’s had with her daughter about family, and remembers hurting her back because she was stooping over, looking for her keys.

She remembered vividly when her leg vein burst and blood was all over and she pushed the emergency button. She could recall that incident to me three or four days later with specific details.

Previously, she also always knew the month, date, and year and the name of the facility she was in. Recently, though, she usually knows what month it is, but struggles with the date and sometimes the year, and she can’t say the name of the facility she’s in.

She also sometimes calls her daughter “he” when she refers to her and sometimes calls her by the name of her other daughter, who is deceased.

She knows she’s messing up when she struggles to remember the date or year and she admits it, so she has some insight into her deficits.

A bigger challenge, not only for her but also for her caregivers, is that she fluctuates in and out of reality at times. As noted previously, hallucinations are a common symptom of LBD, and my patient has frequent hallucinations, especially in the afternoons.

Usually, these consist of “This is not my apartment. I live on a different floor.” For months, she insisted that she had a different apartment in the assisted living facility where she lives. When she was in the apartment, she would acknowledge that “this is my stuff,” but she would nevertheless insist that she had another apartment and that’s where she needed to go.

It took much effort from the care staff, me, and her family to redirect her—usually by encouraging her back to the dining room, then asking, “From here, show me where your apartment is.” Then, using her spatial memory system, she would navigate back to her “real” apartment.

If you tried to argue with her, she would become very angry and verbally abusive, and it would turn into a knock down fight. If you just talked softly to her, though, and asked her to retrace her steps, she would eventually be satisfied—most of the time.

She has always been independent. She does her own laundry (there are written notes and instructions on the washer and dryer as reminders), she knows when to go down to eat her meals and where to go. She takes her own showers, washes her hair, irons her clothes, and sweeps her main room floor.

At times, she gets angry because she wants to go home, and yet she knows she can’t.

I hope you can see from this portrait of my patient how challenging it can be to help someone with Lewy Body Dementia. At times, they can act so normal, but then one of the deficits caused by the condition rears its head to make life difficult for both patients and caregivers alike.

Challenges for Caregivers

As you can see from my description of my client’s situation, patients aren’t the only ones with challenges to face. Caregivers often face an equally difficult road. Challenges include:

• Compassion fatigue: The emotional toll of constant vigilance, managing unpredictable behaviors, and disrupted sleep can lead to burnout.
• Isolation: Because fewer people are familiar with LBD, caregivers may feel alone in their journey. Unless you actively reach out to others for help, you’ll be stuck dealing with everything yourself.
• Financial stress: The cost of long-term care and specialized medical support can be overwhelming. When added on the top of the pile of other challenges, this can be “the straw that breaks the camel’s back.”

Luckily, there are things you can do to make the situation more manageable. See the “Supporting Caregivers” section below.

Lewy Body Dementia: Famous People Can Get It Too

Recent examples of famous people suffering from Lewy Body Dementia in the past few years has brought the condition of the public’s attention.

Robin Williams

Robin Williams’ death in 2014 shocked the world. At first, media reports caused many to assume that depression alone was to blame. But his autopsy revealed something else: diffuse Lewy Body Dementia.

In his final months, Robin experienced paranoia, hallucinations, and drastic shifts in cognition. At the time, doctors believed he had Parkinson’s, but the true cause was hidden until after his death.

His widow, Susan Schneider Williams, later wrote an article in the journal Neurology called “The Terrorist Inside My Husband’s Brain,” describing the nightmare of watching him lose himself.

His story has become one of the most publicized examples of Lewy Body Dementia, raising awareness of the disease’s stealthy nature.

Jackie Bezos (Jeff Bezos’ Mother)

In 2020, Jeff Bezos’ mother, Jacklyn “Jackie” Gise Bezos, was diagnosed with Lewy Body Dementia. She battled the illness for five years before passing away this year at the age of 78.

Jackie was an educator, philanthropist, and leader of the Bezos Family Foundation. Her story reminds us that dementia does not discriminate—it affects people from all walks of life.

Jeff Bezos called her fight one of “dignity and courage.” Her passing brought new attention to Lewy Body Dementia, inspiring more families to seek help and support earlier.

Ways to Improve Quality of Life for People with LBD

While there’s no cure for Lewy Body Dementia and it’s a progressive disease, there are things you can do to improve the quality of life of people suffering from the disease.

Here are a few action steps you can take:

• Medical Support–Seek out specialists familiar with Lewy Body Dementia diagnosis and treatment. Careful medication management is critical.
• Communication support–When speech becomes difficult (as it does for some patients with LBD), Augmentative and Alternative Communication (AAC) apps like APP2Speak can help people stay connected and independent.
• Daily structure–Consistent routines reduce anxiety and provide comfort.
• Creative engagement–Music, art, or storytelling can lift spirits and spark memory.
• Physical activity–Gentle movement such as walking or yoga supports both body and mind.
• Social connection and inclusion—As I mentioned earlier, inclusion works—encouraging safe, meaningful interactions helps people feel valued and reduces isolation.

Supporting Caregivers

While those suffering from Lewy Body Dementia are obviously the most affected, caregivers need care, too. Preventing compassion fatigue for caregivers is vital, as doing so allows them to provide the best support they’re capable of.

Here are some effective strategies to reduce the burden:

• Get Educated: Learn as much as you can about LBD’s unique symptoms, so they feel less overwhelming when you’re confronted with them.
• Compassion Fatigue Prevention: Practice self-care by building in breaks, setting boundaries, and asking for help to protect your long-term sustainability.
• Seek Mental Health Care: Therapy or counseling can help you process grief, stress, and exhaustion.
• Don’t Put Off Future Planning: Early legal and financial planning reduces long-term stress by taking those worries off your plate.
• Join a Lewy Body Dementia Support Group: Share stories, gain insights, and find emotional relief through community.

Most importantly, remember that compassion fatigue prevention isn’t selfish—it’s what allows caregivers to continue supporting their loved ones with strength and empathy for as long as they’re needed.

Conclusion

Lewy Body Dementia is a complex, often misunderstood disease that impacts every part of life—thinking, movement, sleep, and relationships. Recognizing the early signs of Lewy Body Dementia can lead to better outcomes, but too many families face years of uncertainty before getting the answers they need.

The stories of famous people with Lewy Body Dementia like Robin Williams and Jackie Bezos highlight both the devastation of this disease and the urgent need for awareness.

Most importantly, for people living with LBD, life can still hold joy, dignity, and connection when families establish routines, embrace social inclusion, and use tools like AAC apps where needed.

For caregivers, seeking out a Lewy Body Dementia support group, practicing compassion fatigue prevention, and leaning on others can make the journey more sustainable.

Together, with greater awareness and compassion, we can make life with Lewy Body Dementia more fulfilling for both patients and caregivers.