October is Lewy Body Dementia Awareness Month, a time to raise awareness about one of the most common causes of dementia and help families recognize its often-misunderstood symptoms.
When people think of dementia, memory loss is often the first symptom that comes to mind. But dementia can affect much more than memory. For people living with Lewy body dementia (LBD), changes in thinking, movement, sleep, mood, and behavior can all be part of the experience.
Understanding these symptoms can help families seek answers sooner, support their loved ones, and navigate the challenges of a diagnosis.
What Is Lewy Body Dementia?
Lewy body dementia is a progressive brain disease caused by abnormal deposits of a protein called alpha-synuclein inside brain cells. These deposits, known as Lewy bodies, interfere with how brain cells function and communicate.
LBD affects more than one million people in the United States and is one of the most common causes of dementia. Despite how many families it affects, the disease is frequently misdiagnosed because its symptoms can resemble those of Alzheimer’s disease, Parkinson’s disease, and other conditions.
Unlike some forms of dementia that primarily affect memory early on, Lewy body dementia can affect several aspects of daily life at once, including attention, movement, sleep, and perception.
What Are the Symptoms of Lewy Body Dementia?
Lewy body dementia affects each person differently. Some people experience prominent changes in thinking, while others first notice movement difficulties or sleep disturbances.
Common symptoms include:
1. Changes in Thinking and Attention
People with LBD may experience confusion, difficulty concentrating, or trouble completing familiar tasks. One distinctive feature is that their alertness and thinking abilities can fluctuate significantly. Someone might seem relatively clear and engaged at one point, then become confused or unusually drowsy later.
Memory loss can occur, but difficulties with attention, problem-solving, judgment, and visual-spatial skills may be more noticeable early in the disease.
2. Visual Hallucinations
Recurrent, detailed visual hallucinations are a common symptom of LBD. A person might see people, animals, or objects that are not actually present.
These experiences can feel very real to the person experiencing them. Rather than dismissing their concerns or arguing about what they see, caregivers can offer reassurance and focus on helping them feel safe.
3. Changes in Movement
LBD can cause symptoms similar to Parkinson’s disease, including:
- Muscle stiffness or rigidity
- Tremors
- Slowed movement
- Shuffling steps or difficulty walking
- Problems with balance and an increased risk of falls
Not everyone experiences these symptoms in the same way, and their severity can change over time.
4. Sleep Disturbances
Some people with LBD experience REM sleep behavior disorder, a condition in which they physically act out their dreams. They may talk, shout, punch, or kick while sleeping.
Sleep problems can sometimes appear years before other symptoms of LBD become evident. Excessive daytime sleepiness and other sleep disturbances may also occur.
5. Mood and Behavioral Changes
Depression, anxiety, apathy, and changes in behavior can accompany LBD. These symptoms may be distressing for both the person living with the disease and their family.
Recognizing that these changes may be related to a neurological condition can help families respond with understanding rather than frustration.
6. Changes in Automatic Body Functions
LBD can also affect the autonomic nervous system, which controls functions that happen without conscious effort.
Possible symptoms include dizziness when standing because of low blood pressure, constipation, urinary difficulties, and changes in the body’s ability to regulate temperature.
Not everyone with LBD experiences all these symptoms. The combination and severity vary from person to person.
What Are the Two Types of Lewy Body Dementia?
Lewy body dementia is an umbrella term for two closely related diagnoses:
Dementia with Lewy bodies (DLB): Cognitive symptoms develop before or around the same time as movement symptoms, or within about one year of their onset.
Parkinson’s disease dementia (PDD): A person has established Parkinson’s disease, with movement symptoms beginning first. Dementia develops later, generally more than a year after the movement symptoms begin.
Both conditions involve Lewy bodies in the brain and can cause overlapping symptoms. The distinction helps healthcare professionals describe the condition and guide care.
How Is Lewy Body Dementia Diagnosed?
Diagnosing LBD can be challenging because there is no single, simple test that confirms every case. Symptoms can overlap with other neurological conditions, and a person may initially be evaluated for Alzheimer’s disease, Parkinson’s disease, or another cause of cognitive changes.
A healthcare professional may use several approaches, including:
- Reviewing medical history and the timing of symptoms
- Talking with the person and family members about changes in thinking, movement, sleep, and daily functioning
- Performing cognitive and neurological examinations
- Reviewing medications and other possible causes of symptoms
- Ordering laboratory tests or brain imaging when appropriate
- Considering specialized tests when they may help clarify the diagnosis
Family observations are particularly valuable. Keeping a record of changes in alertness, visual experiences, sleep behaviors, walking, and everyday abilities can help clinicians identify patterns that might otherwise be missed.
If you notice persistent changes in memory, thinking, movement, or behavior, encourage your loved one to speak with a healthcare professional. Early evaluation can help identify possible causes and connect families with appropriate care.
Is There a Treatment or Cure for Lewy Body Dementia?
There is currently no cure for Lewy body dementia, and available treatments cannot stop or reverse the underlying disease. However, treatment and supportive care can help manage symptoms and improve quality of life.
Depending on the person’s needs, a care plan may include:
- Medications: Certain medications may help with cognitive symptoms, movement difficulties, or other specific concerns.
- Physical therapy: Exercise, balance training, and mobility support can help address movement difficulties and reduce fall risks.
- Occupational therapy: Practical strategies and adaptations can help people maintain independence in everyday activities.
- Speech therapy: Support may be useful for changes in communication, voice, or swallowing.
- Sleep management: Evaluating and treating sleep disorders can improve safety and quality of life.
- Caregiver support: Education, support groups, and respite services can help families navigate the demands of caregiving.
Medication decisions require particular care. People with LBD can be unusually sensitive to certain medications, especially some antipsychotic drugs, which may cause severe reactions or worsen movement symptoms. Families should make sure every healthcare professional involved in their loved one’s care knows about the diagnosis and should consult the treating clinician before starting or changing medications.
How Is Lewy Body Dementia Different From Alzheimer’s Disease?
Both Lewy body dementia and Alzheimer’s disease cause progressive changes in thinking and daily functioning, but some symptoms and patterns can help distinguish them.
With Alzheimer’s disease, memory difficulties are often a prominent early symptom. With LBD, early changes may involve attention, alertness, visual-spatial abilities, movement, sleep, or visual hallucinations. Fluctuations in thinking and alertness are also characteristic of LBD.
There can be considerable overlap, and some people have signs of more than one brain disease. Only a qualified healthcare professional can evaluate the full picture and determine the most likely diagnosis.
Understanding these differences matters because an accurate diagnosis can influence treatment choices, medication safety, and care planning.
How Can Families Support Someone Living With Lewy Body Dementia?
A diagnosis of LBD can bring uncertainty and difficult adjustments. Families cannot control every symptom, but they can take meaningful steps to support their loved one’s safety, dignity, and well-being.
Learn about the disease. Understanding how LBD affects thinking, movement, sleep, and perception can make changes easier to recognize and respond to.
Create a safe, supportive environment. Good lighting, clear walkways, consistent routines, and practical home modifications can help reduce confusion and the risk of falls.
Respond with patience and reassurance. When someone experiences confusion or hallucinations, acknowledge their feelings rather than arguing over what is real. A calm response can help reduce distress.
Build a healthcare support team. A primary care provider, neurologist, therapists, and other specialists may contribute to a coordinated care plan.
Make time for caregiver well-being. Caring for someone with LBD can be physically and emotionally demanding. Support groups, respite care, and help from family and friends can make a meaningful difference.
Families can also benefit from learning about the disease early, discussing future care preferences, and connecting with organizations that provide education and support.
Why Lewy Body Dementia Awareness Month Matters
October’s Lewy Body Dementia Awareness Month is an opportunity to move beyond general awareness toward a deeper understanding of this complex disease.
Recognizing the symptoms of LBD can help families seek an evaluation, encourage more informed conversations with healthcare providers, and reduce the stigma surrounding dementia. Awareness can also help caregivers feel less alone and connect people affected by LBD with reliable information and support.
Most importantly, people living with Lewy body dementia are more than their diagnosis. With informed care, appropriate support, and a community that understands their needs, individuals and families can find ways to navigate the disease while preserving dignity and quality of life.
This October, help spread the word about Lewy body dementia. Share what you learn, check in on caregivers, and encourage anyone noticing concerning changes in a loved one to seek medical guidance.
For more information, visit the Lewy Body Dementia Association and the National Institute on Aging.
The Alzheimer’s Alliance of Smith County provides education, resources, and support for people affected by dementia and their families. Contact us to learn more about available programs and support services.
