When our father was diagnosed with Lewy Body Dementia in 2020, we entered a landscape that was far more complex than we anticipated.

We were introduced to Lewy Body Dementia WITHOUT treatment plans, WITHOUT medication regimens, and WITHOUT anything but a diagnosis. His neurologist said "I can diagnose, but I don't live it." We are that connection. We lived it with his diagnosis all by ourselves.

Once we left the clinic with our diagnosis, a different reality emerged and with it, a different set of questions.

What does this disease look like on a day-to-day basis?
How should we respond when symptoms shift unexpectedly?
How do we communicate this diagnosis to children, extended family, and colleagues?
How do families live well alongside a progressive and unpredictable condition?

It became apparent that even the most thorough clinical care cannot fully prepare families for the lived experience of Lewy Body Dementia. The disease impacts cognition, movement, sleep, behavior, and emotional regulation, often fluctuating in ways that challenge standard care models. Strategies that are effective one week may be ineffective the next. What appears manageable in theory can prove difficult in practice.

As caregivers, we needed more than medical guidance. 

We needed support translating clinical insight into practical, sustainable caregiving strategies. 

We needed validation that what we were observing at home was both real and shared by others. 

We needed access to individuals who had navigated this journey and to professionals who understood Lewy Body Dementia beyond its diagnostic criteria.

Over time, we recognized that some of the most impactful support came through shared experience. Practical insights from fellow caregivers, meaningful peer connection, and the reassurance of being understood filled a critical gap between clinical care and daily life.

This realization became the foundation for the community we are now building.

We serve as a conduit between the advancements occurring in laboratories and clinics and the realities faced by families at home, helping ensure that knowledge is not only generated, but effectively translated.

Our father’s journey profoundly shaped our family and revealed a critical unmet need. In response, we are building the community we wish had existed from the outset. One that bridges clinic and home. One that values both scientific rigor and human experience. One that supports families in navigating this disease with clarity, dignity, and connection.

Our Foundation operates at the intersection of research, clinical practice, and lived experience. 

We didn’t start out looking for a dementia diagnosis. We started out looking for explanations. As daughters caring for our dad, we entered a season filled with appointments, referrals, second opinions, and more questions than answers. We became note-takers, researchers, medication trackers, and advocates. We documented patterns. We compared “good days” and “bad days.” We printed articles. We learned how to describe symptoms clearly and concisely to doctors.  Eventually, we learned we were navigating Lewy body dementia (LBD). But getting there took time.

Lewy body dementia shares symptoms with both Alzheimer's disease and Parkinson's disease. In fact, it is the second most common type of progressive dementia after Alzheimer’s, yet it remains one of the least recognized. Because no single test confirms LBD, diagnosis depends heavily on clinical observation and detailed symptom history.

Early LBD symptoms can also mimic:

• Depression
• Anxiety
• Bipolar disorder
• Stroke
• Medication side effects
• Sleep disorders
• Thyroid dysfunction
• Vitamin deficiencies

Because the symptoms overlap so widely, families often spend months — sometimes years — searching for answers.

If You’re in the Early Stages

If you’re noticing unusual cognitive fluctuations, vivid hallucinations, sleep disturbances, or unexplained movement changes in someone you love, document everything. Patterns matter.

If a diagnosis doesn’t fully explain what you’re seeing, ask again. Seek specialists. Research clinicians familiar with Lewy body dementia. Not all providers are equally trained in recognizing it. If you are walking this road, keep asking, keep documenting, and keep advocating.

What Advocacy Can Look Like

• Bringing a notebook to every appointment.
• Emailing follow-up questions.
• Requesting second opinions.
• Researching specialists familiar with LBD.
• Reading clinical articles late at night.
• Comparing symptom timelines.
• Trusting your gut when something doesn’t add up.

The emotional toll is real. The uncertainty is heavy. The constant questioning can feel relentless. But when the diagnosis finally came, there was clarity. Not comfort - but clarity.  And clarity matters.

If you or someone you love is navigating Lewy body dementia, our organization is here to provide trusted resources, education, and compassionate support so you don’t have to walk this journey alone. We would also be honored to mail a complimentary care package to families who need encouragement and practical tools during this season. 

https://lewybodyawareness.org/care-package/ 

 

Caregiving is an act of love. It is rooted in commitment, compassion, and the desire to show up for someone who matters deeply. At the same time, it can be exhausting, isolating, and often invisible to those on the outside.

For those caring for someone with Lewy Body Dementia, the challenges are especially complex and, at times, overwhelming.

This is not a condition that follows a predictable path. It changes frequently and often without warning. One day may bring clarity, conversation, and connection. The next day may bring confusion, fatigue, or distress. Caregivers are left to navigate these shifts in real time, often without a clear roadmap.

In the middle of it all, caregivers are constantly adapting to new realities. They are anticipating what might come next and giving more of themselves than they ever expected. This level of responsibility is not occasional. It is continuous.

Caring for someone with Lewy Body Dementia often includes sudden changes in cognition that can alter plans within minutes. It can involve sleep disruptions that affect not only the individual but the entire household. It also brings emotional strain, especially when hallucinations or changes in personality begin to appear.

This experience is not only physically demanding. It is mentally and emotionally consuming as well. Despite this, many caregivers carry the weight quietly. They hesitate to ask for help because they do not want to burden others. They tell themselves they can manage on their own. Over time, that belief can lead to deep exhaustion.

Practical Ways to Lighten the Load

If you are currently in a caregiving role, there are small but meaningful ways to create space for yourself. 

• Build a support network.
  Think in terms of a team rather than a single person. This may include a friend who can spend time with your loved one, a family member who can help with errands, or a group of people who understand what you are experiencing. 
• Adjust expectations when needed.
  Not every day will unfold the same way. It is okay to shorten an outing, reschedule an appointment, or change a plan entirely. Flexibility is not a failure. 
• Prioritize rest whenever possible.
  Sleep disruptions are common with Lewy Body Dementia. If nights become difficult, consider options such as sharing responsibilities with another person, speaking with a healthcare provider, or creating a calming evening routine. 
• Find a space where you feel understood.
  Having a place where you do not need to explain your experience can provide relief and reassurance. 
• Accept help without guilt.
  This is often one of the most difficult steps. Accepting help does not mean you are failing. It means you are creating the ability to continue. Sustaining your own well-being allows you to keep showing up with care and presence.

Caring for the caregiver is not optional. It is essential.

If this message resonates with you or someone you know, consider it a reminder that you do not have to carry this alone. Even the most dedicated caregivers need support. That support may come in the form of education, resources, care packages, or simply the reassurance that someone else understands.

The Larry Gross Lewy Body Dementia Awareness Foundation mails care packages all over the world. We recently mailed one to a woman caring for her husband with LBD. These packages are designed to offer resources, comfort, and a small sense of relief to those facing the challenges of caregiving. However, this particular package became something much more than we could have imagined.

A Twist of Fate

Initially meant for a caregiver’s mother, the care package was misdelivered—sent to an entirely different town due to a labeling mix-up. The woman who received it had just lost her husband to LBD one month ago and was having a particularly difficult day. When she opened the package and saw the book inside, she was momentarily stunned. Who could have sent her this now, of all times?

Then, she noticed the handwritten address and realized the package wasn’t meant for her. Instead of mailing it back, something inside her urged her to deliver it in person. She knew what it was like to feel lost in this journey, and she wished she had received something like this when she was caring for her husband.

With tears in her eyes and shaking hands, she knocked on the door of the woman who was supposed to receive the package.

The two women—both strangers, both deeply affected by Lewy Body Dementia—stood on the porch, talking, crying, and bonding over their shared pain and experience. Their conversation ended in a hug and the exchange of phone numbers. In that moment, two caregivers found comfort in each other, connected by loss, love, and an illness that had reshaped their lives.

The Power of Connection in Caregiving

Caregiving for someone with Lewy Body Dementia is often an isolating experience. It is filled with long days, difficult moments, and a deep longing for the person who is still physically there but slipping away. 

This story is a powerful reminder that small acts—like sending a care package—can have a ripple effect beyond what we can ever predict. The packages we send are more than books, and resources. They are lifelines. They remind caregivers that they arenot alone, that their struggle is seen, and that there are others who understand their pain.

Continuing the Mission

Our nonprofit, founded in honor of our father Larry Gross, aims to support, educate, and provide resources for caregivers and families affected by Lewy Body Dementia. We do this because we know firsthand how difficult this journey can be. 

We don’t want any family to feel as lost as we once did.

This story is just one of many that show the profound impact of community, support, and sometimes, what feels like divine intervention. It reminds us why we must continue to spread awareness and be there for those walking this path.

If you or someone you know is caring for a loved one with LBD, we encourage you to seek support, reach out, and remember: you are never alone.

Join us in raising awareness for Lewy Body Dementia. Share this story, support a caregiver, and help us continue making a difference.

Caring for a loved one with Lewy Body Dementia (LBD) is a journey filled with unexpected challenges, emotional struggles, and heartbreaking decisions. Here we follow one family’s story—one that reflects the experiences of so many others walking this path. We’ll share a pivotal moment in their journey, from the first signs of change to the final goodbye. We hope their story brings awareness, comfort, and a sense of community to those who have been or are currently on this journey.

When we knew something was different

The changes were small at first. Dad would forget things—nothing major, just little details, like where he left his keys or the name of a neighbor he’d known for years. We chalked it up to aging. But then, things became harder to ignore. He started losing track of conversations, repeating the same questions, and getting frustrated when we pointed it out. Then came the nights—when he’d wake up confused, seeing things that weren’t there.

One evening, he looked at Mom, his wife of two decades, and asked, "When are you taking me home?" That was the moment we knew. Something was wrong. Something was different.

The first doctor’s visit—searching for answers

The first trip to the doctor was supposed to ease our worries. We were hopeful. Maybe it was stress, maybe a vitamin deficiency, maybe something easily treatable. Dad was polite and charming, answering every question with confidence. The doctor barely noticed what we saw at home—the confusion, the fear, the changes.

"Sounds like normal aging," the doctor said. "We’ll keep an eye on it.". We left that day with more questions than answers, but deep down, we knew this wasn’t normal.

The first misdiagnosis—a confusing detour

A few months later, Dad’s symptoms had worsened. He was seeing things that weren’t there, struggling to walk, and getting lost in his own home. A new doctor ran some tests and diagnosed him with Alzheimer’s.

We finally had an answer—except, it didn’t quite fit. Why were his symptoms coming and going? Why was he suddenly unable to recognize Mom but fine the next day? Why did he seem so aware one moment and lost the next? Something still didn’t feel right, but we trusted the doctors. We had no idea we were about to face another heartbreaking truth.

The final diagnosis—a name for the unknown

It wasn’t until we saw a neurologist that things became clearer. He listened to everything—not just the memory loss, but the vivid hallucinations, the shuffling walk, the unpredictable good and bad days.

After a long evaluation, he said the words we had never heard before: "Lewy Body Dementia." We had a name for what was happening, but the reality of the diagnosis hit hard. There is no cure. It would only get worse.  Dad squeezed Mom’s hand. "We’ll figure this out together," he said. And so, we began preparing for the journey ahead.

Telling others—explaining the unexplainable

How do you tell your family and friends that the person they love is disappearing in front of them? Some people understood. Others didn’t. "But he looks fine," they’d say. "Are you sure?" Dad’s old friends stopped calling. They didn’t know how to react.

We learned that not everyone will understand, and that’s okay. The ones who stayed, who listened, who offered help—those were the people who became our lifeline. If you know someone caring for a loved one with dementia, be there. Even if you don’t know what to say.

Accepting the end—finding peace in goodbye

In the final weeks, Dad rarely spoke. Some days, he recognized us. Most days, he didn’t. We sat by his bedside, holding his hand, telling stories, playing his favorite music. One evening, as Mom whispered, "I love you," he opened his eyes for the first time that day and said, "I love you too."

Lewy Body Dementia takes so much—but it cannot take love. That remains, even when words fade. Even when goodbyes are whispered. To every family walking this path: You are not alone.