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“ I wanted to reach out to let you know I received my care package yesterday. THANK YOU! Within a few minutes of just glancing through it yesterday I have seen a lot that grabbed me. I am now sitting here reading the packet. I have it ready to carry every where I go.” - Mickey “I received my package yesterday. What a sweet surprise! I needed a mile on my face. trying to stay strong but sometimes I just break down. What a horrible disease this is. I’m afraid we have a tough road ahead of us. My honey is only 61 years old. No one deserves this!!” -Janice “I just got done reading all the information in your care package, next I will pass this along to my mom and my sister! This is great information and is extremely helpful. I’m eagerly starting the book today too! You both are doing such a wonderful job in spreading awareness and I too plan to do the same in the future. I believe my dad is in the late stage, coincidentally his name is Louie (thankfully spelled different than “screwy Lewy”). My mom had a stroke 3 years ago yet she loves to read so having this in writing is going to help her understand. I’m sure your dad was an amazing dad, it shows in all the work you are doing to help others manage this horrible disease! THANK YOU!” - Lisa “Our package arrived today. Thank you so much. It’s such a wonderful thing you are doing. I truly appreciate all of the information. Hopefully my daughters will find it helpful too. We’re all still trying adjust to this new life we have and it’s hard on all of us but arming ourselves with as knowledge as we can will help.” - Carolyn “I received you box of resources. It’s tremendous what you have done and all that you have put together. This book, is the same one that I had been eyeing. I’m thrilled to have it. I’m flying to see my parents tomorrow and taking these items with e to share. Thank you!!” - Candy “Just got my package. It is a lovely presentation. I am grateful to you. I was just planning on printing out the GEMS chart and to m delight you have included it in your folder. I am excited to share this information with my HomeHelpers. Again, thank you.” - Bo “Good Morning! Thank you again for your care package! I finally sat down and got through some and not only is it valuable information but it helped us, my sisters and I, not feel so alone. Thank you for everything!” - Amy “I just received the care package. I cannot thank you enough! I cried just browsing through the contents, it means so much that you and your family care enough to create all of this to help others. Thank you ever so much. What a wonderful thing you are doing!” - Beth
When a family begins the journey of caring for someone with Lewy Body Dementia, the hardest part is often not just the symptoms themselves. It is the confusion that comes when you know something is wrong, but you do not yet have the language to explain it.
You may notice memory problems one day, followed by moments of surprising clarity the next. You may observe their vivid dreams in the middle of the night, sudden movements during sleep, or times when your loved one appears to see things that are not there. When trying to explain these experiences to friends, family, or healthcare providers, it can be difficult to find the right words.
That is why shared language matters.
When families can name what is happening, they often feel less overwhelmed and more empowered. Words create understanding. Understanding creates confidence. Confidence helps families advocate for the care and support their loved one needs.
Cognitive fluctuations refer to changes in attention, alertness, and thinking that can vary from hour to hour or day to day. A person may seem clear, engaged, and focused one moment, then confused or withdrawn later.
For many families, this can feel frustrating or puzzling until they learn that fluctuations are a common part of Lewy Body Dementia. Once named, these shifts often make more sense.
Hallucinations involve seeing, hearing, or sensing things that are not present. Visual hallucinations are especially common and may include seeing people, animals, or objects.
Without context, hallucinations can be alarming for both the person experiencing them and the caregiver. Knowing this symptom can be part of the disease helps families respond with calmness and compassion rather than fear.
REM Sleep Behavior Disorder occurs when a person physically acts out dreams during sleep. This may include talking, shouting, kicking, punching, or sudden movements during the night.
Many families notice sleep changes long before a diagnosis is made. Learning this term can help connect seemingly unrelated symptoms and lead to more informed conversations with healthcare providers.
Parkinsonism describes movement symptoms such as stiffness, slowed movement, shuffling gait, tremors, or balance issues. These symptoms can resemble Parkinson's disease and are often part of the Lewy Body Dementia picture.
Recognizing these physical changes as part of the condition can help families better understand why mobility and safety may need increasing attention.
Delusions are fixed beliefs that are not based in reality. A person may believe someone is stealing from them, that a spouse is an imposter, or that danger is present when it is not.
These experiences can be deeply emotional for everyone involved. Having language for them helps caregivers respond with patience and seek appropriate support.
Learning these terms does more than expand vocabulary. It gives families tools to navigate uncertainty.
When caregivers can say, “These are fluctuations,” or “This may be REM Sleep Behavior Disorder,” they are better prepared to communicate with doctors, explain the situation to relatives, and make informed decisions about care.
Knowledge also reduces self-doubt. Many caregivers spend months wondering if they are imagining things or overreacting. The right language validates what they are seeing in real time.
One of the most powerful parts of community is hearing someone describe your experience before you had words for it yourself.
A support group, educational resource, or nonprofit community can help families realize they are not alone. It can introduce terms that bring clarity and confidence. It can transform confusion into action. That confidence matters because advocacy often begins with language. When you understand what is happening, you can ask better questions. You can seek better care. You can protect your loved one with greater confidence.