Lewy body dementia (LBD) is a brain disorder that causes advanced memory loss, movement problems and mental decline. LBD (sometimes called Louie body dementia or Louis body dementia) severely affects daily life activities like bathing, cooking, or walking. If someone you love has been diagnosed with LBD, this guide covers what to expect at every stage, and what financial support may be available to you as their caregiver.
Lewy body dementia (LBD) is a type of dementia that affects memory, thinking, movement, and behavior. It's caused by abnormal deposits of alpha-synuclein proteins, called Lewy bodies, in the brain. These proteins damage brain cells, leading to distinctive symptoms that can confuse family caregivers.
The exact cause of Lewy body dementia is unknown, but scientists think it might involve:
While there's no cure, treatments can help manage symptoms and improve the quality of life for you and your loved one.
LBD symptoms differ from person to person. Your loved one may have symptoms like restlessness, hallucinations, tremors, and balance issues. Someone else might struggle with sleep disorders and mood changes.
Because of the complex symptoms, LBD is sometimes misdiagnosed as Alzheimer’s disease or Parkinson’s disease. There are several hallmark symptoms to look out for to tell the difference:
Compared to Alzheimer’s disease, Lewy body dementia starts slowly and might look like a little bit of confusion. Your loved one might forget small things, can’t concentrate or plan, or has difficulty problem-solving. These are the most common first signs of LBD memory loss.
It can be scary when your loved one starts seeing animals or people who aren’t there. This is another early symptom of LBD. The Lewy Body Dementia Association found 8 in 10 people with LBD hallucinate. Hallucinations unrelated to lighting could be a sign of LBD, not sundowning. Lewy body dementia symptoms can even be triggered by bathing.
The biggest difference between LBD and Alzheimer’s disease is the unpredictable changes in alertness and concentration. Unlike Alzheimer’s disease, where patients may have steady mental decline, in LBD your loved one might act perfectly normal one day, then the next day shows signs like staring into space, drowsiness, or extreme confusion.
Does your loved one talk in their sleep or often fall out of bed? With REM sleep behavior disorder, your loved one has vivid dreams that they act out. Sleep disorders are sometimes caused by Parkinson’s disease or Lewy body dementia symptoms. Family caregivers should report any nighttime acting out to their doctor.
Dementia with Lewy bodies, like Parkinson’s disease and LBD, share common movement symptoms like tremors, stiffness and slowness. Both diseases are caused by Lewy bodies - clumps of the protein alpha-synuclein in the brain. However, LBD usually starts with cognitive decline and hallucinations before noticeable problems like a shuffling walk, difficulty swallowing (dysphagia), or lack of coordination.
Family caregivers are the first to see drastic mood changes. You might notice increased anxiety or depression. Or your family member starts accusing visitors of stealing their things. They might repeat themselves or can’t rest. With sundowner’s syndrome they may show anxiety in the afternoon or at night.
The autonomic nervous system controls everything from bladder control and blood pressure to digestion and temperature sensitivity. If your loved one faints when standing because their blood pressure drops, LBD might be causing autonomic dysfunction. Other signs of autonomic dysfunction include dizziness, constipation, and urinary incontinence, as well as heat and cold sensitivity.
Each person's symptoms are different. If you notice several of these signs, speak to a doctor.
One of the most common questions families ask when their loved one gets a LBD diagnosis is how LBD is different from Alzheimer’s disease. Lewy body dementia often looks like Alzheimer’s disease.
Hallucinations are much more common in Lewy body dementia than in Alzheimer’s disease, and they start appearing earlier. They can be simple or complex, visual or auditory. What does this look like?
Your loved one might tell you they saw a crowd of people in your empty living room. Or they may experience a negative hallucination and can’t see what is literally right in front of them! Hallucinating figures right outside their line of sight is also typical.
LBD affects visual perception. The brain gets mixed signals and misinterprets what the eye sees. If your loved one is hallucinating, just keep them calm and talk them through the hallucination. Lewy body dementia will also cause movement and balance problems earlier than in Alzheimer’s disease.
Another striking difference between Alzheimer’s disease and LBD is the rapid change in symptoms. The rollercoaster of mood swings in LBD quickly stresses out family caregivers. It’s different from the more predictable day-to-day routine of Alzheimer’s disease. You don’t know if your loved one will be irritable or joyful, restless or drowsy.
Knowing whether your loved one has Lewy body dementia or Alzheimer’s disease impacts medications and treatment plan. Before you give your loved one any medicine, talk with their doctor about their most prevalent symptoms.
Antipsychotic medications have dangerous risks in over half of LBD patients, like worsening motor skills or psychosis. The same medications affect Alzheimer’s patients differently.
If you're not sure which type of dementia your loved one has, ask their doctor. They will let you know the best and safest treatment plan for their diagnosis.
Lewy body dementia can be tricky to diagnose. Why? Symptoms often overlap with other medical conditions like Parkinson’s disease, Alzheimer’s disease or psychiatric disorders.
Your loved one’s doctor will also know the difference between delirium vs dementia. For example, delirium often happens days or weeks after an infection or severe medical condition. LBD gets steadily worse over several years.
First, the doctor will ask about your loved one's medical history, symptoms, and medications. They'll also do a physical exam to check for movement problems. Diagnosis of LBD is mostly based on clinical symptoms, not tests.
Doctors might recommend tests to rule out other conditions like Parkinson's disease or depression. While not a standard test, a dopamine imaging test may offer clues about LBD.
Unfortunately, there's no single brain function test for LBD. Doctors diagnose it based on cognitive symptoms, medical history, and blood test results. It can be a frustrating process, but know that doctors are working to find a better way to diagnose LBD.
Treating Lewy body dementia involves a multifaceted approach to manage symptoms and improve the quality of life for your loved one. Here's a detailed look at treatment options and strategies:
According to the Lewy Body Dementia Association, LBD progresses faster than Alzheimer’s disease, with an average of 5 to 7 years from diagnosis to end of life. However, the timeline can be as short as two years or as long as two decades.
Family caregivers should prepare for hospice and end-of-life plans within five years of LBD diagnosis. This is also why an earlier diagnosis is so important for your family.
Healthcare teams often use the FAST scale (Functional Assessment Staging Test) to track how dementia is progressing. This helps family caregivers understand what stage their loved one is at and what to expect next.
Your loved one has mild mental decline and slight motor skill issues, but still has independence. At this stage, you monitor their health, attend doctor appointments, manage their medicine, and watch for early safety concerns in activities like driving or cooking. You notice they have more anxiety, depression, and forgetfulness.
You step in and drive them to appointments, handle finances, and plan medical care. Your family member needs help with daily activities like bathing or cooking. You manage their hallucinations or quick mood changes. They might forget family and friends. Prioritize fall prevention and monitoring sleep disorders.
At this stage, you provide 100% of care. They have complete memory loss, can’t do basic daily tasks like bathing, and may not walk or sit up alone. You may need to consider palliative or hospice care or a memory care facility. Talk about end-of-life plans early. Don’t wait until a crisis.
Build up your support network. As Lewy body dementia progresses, the pressure on caregivers can lead to burnout. You need a trusted team of fellow caregivers, medical professionals, and community resources like respite care or financial support. Don’t be afraid to reach out for help.
Lewy body dementia requires a team effort to manage symptoms and ensure your loved one's well-being.
Doctors, nurses, and specialists, like neurologists and psychologists, collaborate to diagnose LBD, prescribe medications, and recommend therapies. They also provide ongoing guidance and support.
You are vital in daily care, helping with medication management, meals, hygiene, and emotional support. Join support groups to connect with others facing similar challenges.
Support groups, social workers, and home care services offer emotional support, practical guidance, and respite care, giving you a much-needed break. Find help from these support networks:
As LBD progresses, falls and wandering become concerns. Fall-proofing the home, using safety aids, and keeping medications out of reach are important.
Eventually, seniors who have memory-related disorders like Alzheimer’s disease or Lewy body dementia may need specialized care in assisted living facilities, hospice care, or memory care units. Discussing these options with your loved one and family early allows for informed decisions.
Watching a loved one change can be heartbreaking. Remember, empathy and understanding are your superpowers. Try to put yourself in their shoes and see the world from their perspective.
Communication might be tricky, so use simple sentences and positive reminders. Focus on activities they still enjoy, even just folding laundry together or enjoying a family meal. These shared moments create happy memories and make the caregiving journey more meaningful for both of you.
Caring for someone with Lewy body dementia can become a full-time job. It affects not only your mental and physical health, but also your finances. You may have to take time off from your regular job, reduce your work hours, or hire additional help to care for your loved one.
Many states offer Medicaid self-directed programs that pay family members for the care they provide at home, including care for spouses and adult children. Figuring out recent eligibility changes in your state can seem confusing. Don’t worry, you aren’t alone. Givers helps caregivers like you navigate the complicated enrollment process.
The Census Bureau Report showed the median household income for adults age 65 and up was $56,680. And that number dropped to $47,790 for Americans over 74. Yet the national median monthly full-time memory care in 2026 was $6,690, or $80,280 a year. LBD care typically costs more due to increased support in later stages.
Care costs differ per state, and some memory units cost closer to $8,000 a month for dementia patients. Round-the-clock in-home care costs are often double or triple that amount. Costs in the northeast and Hawaii rank among the highest. Here is a quick state comparison.
Professional in-home care in Georgia averages $9,359 a month. Eligible family caregivers may receive up to $1,987/month. See what caregivers earn in Georgia or check Medicaid eligibility in Georgia to find out if you qualify.
Professional in-home care in Connecticut averages $15,973 a month. Eligible family caregivers may receive up to $2,040/month through Connecticut caregiver pay rates programs. Check Medicaid eligibility in Connecticut to find out if you qualify.
Professional in-home care in Michigan averages $11,294 a month. Eligible family caregivers may receive up to $1,680/month. See what caregivers earn in Michigan or review Medicaid eligibility in Michigan to see if you qualify.
Professional in-home care in Ohio averages $9,584 a month. Eligible family caregivers may qualify for up to $1,680/month through Ohio caregiver pay rates programs. Look up Medicaid eligibility in Ohio to get started.
