Lewy Body Dementia (LBD) is the most common of the four atypical parkinsonism disorders and exists in two forms: Dementia with Lewy Bodies and Parkinson’s Disease Dementia. LBD is also classified as a non-Alzheimer’s dementia. It is not a rare disorder. Depending on the study referenced, LBD is the second or third most common form of dementia in seniors.
LBD Symptoms
Lewy Body Dementia (LBD) is an umbrella term that refers to two diagnoses:
- Dementia with Lewy Bodies (DLB)
- Parkinson’s Disease Dementia (PDD)
source: Neuroscience News
The terms DLB and PDD are of primary interest to researchers and less to families and clinicians. Whether someone is diagnosed with DLB or PDD is largely determined by the arbitrary “one-year rule.” (See below.)
LBD symptoms include:
- Dementia: Everyone with LBD must have progressive dementia. Find our definition of dementia here.
- Fluctuating Cognition: This refers to variability–on the basis of a minute, hour, or day–of attention and alertness. Unfortunately there is no consensus in the medical community how fluctuating cognition is objectively measured. This is part of the diagnostic criteria for DLB, but not PDD.
- Visual Hallucinations: In DLB, usually hallucinations are complex and recur. Note that hallucinations are different from delusions, which can also occur in LBD. A hallucination is where an individual sees something that is not there – often children or animals. A delusion is where there is an entire story and emotional response to something that isn’t real such as thinking the house is on fire, thinking a family member is an “imposter,” or believing a spouse is unfaithful.
- Parkinsonism: This term includes rigidity, bradykinesia (slow movements), tremor, and postural instability. If someone has a Parkinson’s Disease diagnosis, by definition the person has parkinsonism. Find our definition of parkinsonism here.
- Rapid Eye Movement (REM) sleep behavior disorder (RBD). This is sometimes called “dream enactment behavior” because dreams are acted out.
Other important symptoms that are suggestive of LBD include:
- Extreme sensitivity to antipsychotic medication (also called neuroleptics)
- Low dopamine transporter (DaT) uptake in the basal ganglia as demonstrated by SPECT or PET scans
Note: these symptoms are for what we might refer to as “pure” LBD. In most brain bank studies, those with Lewy Body Dementia also have Alzheimer’s pathology, vascular pathology, or other co-occurring pathologies.
What about memory problems? Note that many people with DLB receive a high score on the Mini-Mental Status Exam (MMSE) so that test is often not relevant in DLB. Those with PDD may have more memory impairment than those with DLB. It could be that if memory problems are present, Alzheimer’s pathology is to blame.
What’s the one-year rule? If the onset of dementia or psychiatric symptoms (such as hallucinations) are within one-year of parkinsonism, the disorder is called DLB. Whereas, if parkinsonism occurs for more than one year before the onset of dementia or psychiatric symptoms, the disorder is called PDD. Unfortunately, the one-year rule ignores the possibility that parkinsonism may never be part of DLB.
LBD Treatment
source: Mpelletier1
Pharmacological treatment of LBD is complex given how sensitive many people are to all kinds of medications.
Cognitive issues: Those with LBD are prescribed Alzheimer’s medications as a first-line treatment for dementia and hallucinations. Current Alzheimer’s medications include donepezil, rivastigmine, galantamine, memantine, and memantine/donepezil (combination). Rivastigmine is the only FDA-approved medication for treating dementia in Parkinson’s Disease.
Motor issues: There can be a tricky balancing act with Parkinson’s medications (carbidopa/levodopa) as a treatment for parkinsonism symptoms. Parkinson’s medications can cause hallucinations and delusions, yet many with LBD are extremely rigid without PD medications. Zonisamide is sometimes used.
Psychiatric issues: For hallucinations and delusions, initial consideration is made to reducing Parkinson’s medications. Next, experts try Alzheimer’s medications. Next, are atypical antipsychotics (such as clozapine, quetiapine, or pimavanserin). Note that there is an FDA black-box warning on all antipsychotic medications for those with dementia. That said, many in our local support group find these medications to be life-savers.
Sleep issues: Melatonin and clonazepam are the medications typically used for RBD.
What not to take? Experts warn against taking anticholinergic medications (such as many bladder/incontinence medications) and typical antipsychotics (such as haloperidol). Also, given the risks of falls, experts encourage caution for all medications, especially those that can cause sedation (i.e. other-the-counter cold or allergy medications, sleep aids, cough syrups). We always recommend that you consult your physician prior to administering any medication other than what has been prescribed.
Go-To Organizations for LBD Education
A handful of organizations consistently deliver quality information about LBD. Click the link for each organization to review their web sites:
| Organization Name | Country | Focus | Web Address |
|---|---|---|---|
| Lewy Body Dementia Association | USA | Information, awareness |  |
| Lewy Body Dementia Resource Center | USA | Helpline, Support |  |
| Alzheimer’s Association | USA | Research, information |
|
LBD Top Resources
Brain Support Network continually reviews most of the resources available on LBD. In our opinion, these web pages, documents, and videos are the most helpful resources for families:
LBD Caregiving Symposium
In this 4.5-hour event from October 2023, a movement disorder specialist provided an overview of Lewy body dementia and a social worker described communication challenges those with LBD experience. A highlight is the five LBD caregiver panelists who addressed hallucinations, the need for support, in-home care, care facility placement, etc. This webpage includes recordings, speaker slides, notes, resource list, and an LBD quiz.
> brainsupportnetwork.org/2023-1014-lbd-caregiving-symposium
Lewy Body Dementia: Future Directions
In April 2025, Stanford’s Carla Abdelnour, MD, shared recent research findings and future research that may affect treatment of those with LBD. She also provided a short overview of Lewy body dementia (LBD), which is an umbrella term that includes Parkinson’s Disease Dementia and Dementia with Lewy Bodies.
> Webinar recording: youtube.com/watch?v=lfdwYKnnXUs
Orthostatic Hypotension in Parkinsonian Syndromes (MSA, PD, and LBD)
In this hour-long webinar moderated by BSN’s Candy Welch in August 2025, John Miglis describes the causes of neurogenic orthostatic hypotension (nOH), how nOH is diagnosed, symptoms, and both non-drug and medication-based management strategies.
> Webinar recording: youtube.com/watch?v=Z54ncPQW5Js
Alzheimer’s Association Overview of Dementia with Lewy Bodies
This webpage provides a straightforward explanation of DLB symptoms, diagnosis, causes, and treatments. It includes a list of key differences between Alzheimer’s and DLB.
> alz.org/dementia/dementia-with-lewy-bodies-symptoms.asp
Facing Lewy Body Dementia Together (includes a Medical Alert Card)
This September 2020 publication of the Lewy Body Dementia Association is for newly diagnosed. It used to be titled “An Introduction to Lewy Body Dementia.” It includes a Medical Alert Card.
> lbda.org/wp-content/uploads/2020/09/facing_lewy_body_dementia_together_brochure.pdf
Caregiving Brief – Behavioral Changes in LBD
In 2013, the Lewy Body Dementia Association published its “Care Briefs” series. This care brief, written by Rosemary Dawson, on behavioral changes is especially helpful. There are also care briefs on sleep, medication, and polypharmacy.
> lbda.org/wp-content/uploads/2013/02/2016caregivingbrief_behaviorchanges.pdf
Lewy Body Dementia: Information for Patients, Families, and Professionals
This 50-page booklet was updated in December 2023 by the National Institute on Aging. It describes the main symptoms of DLB and PDD, treatment and management, along with advice for patients, caregivers, and how to support LBD/PDD families.
> order.nia.nih.gov/sites/default/files/2024-04/lewy-body-dementia-nia.pdf
LBD Caregiver and Expert Discussion
This recording of a panel discussion after the movie “SPARK” about Robin Williams, featured UCSF’s Bruce Miller, MD, and Brain Support Network local LBD support group members Dianne and Denise. (Both Dianne and Denise donated their loved one’s brains upon death and received a confirmation of the LBD diagnosis.) BSN’s Robin Riddle moderated. This June 2021 webinar was co-hosted by Family Caregiver Alliance and Brain Support Network.
> Webinar recording: youtube.com/watch?v=tOHXqZDyobs
> Brain Support Network notes:
brainsupportnetwork.org/spark-panel-featuring-dr-bruce-miller-and-brain-support-network-recording/
Parkinson’s Disease: Mind, Mood & Memory
This 100-page publication from the Parkinson Foundation has a terrific chapter on Dementia with Lewy Bodies.
> parkinson.org/site/DocServer/Mind_Mood_Memory.pdf
Psychosis: A Mind Guide to Parkinson’s Disease
This 36-page publication from the Parkinson Foundation offers a description of psychosis, its causes, treatments, and tips for caregivers. Also available in audio form. Published 2018.
> parkinson.org/library/books/psychosis
The Reality of LBD – Hallucinations & Delusions and How to Manage Them
This hour-long webinar in July 2017 is a terrific introduction to the psychiatric and behavioral problems in DLB by Dr. James Galvin. He addresses the challenges in assessment and management of these symptoms.
> Webinar recording: youtube.com/watch?v=zGSS4qNaJH0
> Brain Support Network notes:
brainsupportnetwork.org/
Dementia with Lewy Bodies
This webpage, on the Family Caregiver Alliance website, offers details on symptoms, diagnosis, treatment, and caregiving. Also available as a downloadable PDF.
> caregiver.org/resource/dementia-lewy-bodies/
Is it Lewy?
This tri-fold pamphlet from the Lewy Body Dementia Association lists symptoms to differentiate LBD from Alzheimer’s and Parkinson’s. It used to be called “Lewy Who?”
> lbda.org/wp-content/uploads/2020/09/is_it_lewy.pdf
LBDA’s Youtube Channel: “Ask the Experts”
The Lewy Body Dementia Association’s Youtube channel delivers videos on a variety of topics presented by leading experts on Lewy Body Dementia.
UCSF Memory & Aging Center Overviews of DLB and PDD
These webpages examine causes, relationship with age, symptoms, and treatment.
> memory.ucsf.edu/education/diseases/dlb
> memory.ucsf.edu/dementia/parkinsons/parkinson-disease-dementia
Understanding Lewy Body Dementia
This thorough presentation on LBD and its treatment, with an extensive Q&A, was presented by Dr. Bradley Boeve in October 2018 in Michigan.
> youtube.com/watch?v=wCJPv0eXeQk
10 Things You Should Know About LBD
This short publication of the Lewy Body Dementia Association provides key facts.
> lbda.org/10-things-you-should-know-about-lbd/
Seminario web sobre la demencia con cuerpos de Lewy
En febrero de 2024, la Dra. Carla Abdelnour, investigadora postdoctoral de la Stanford University, ofreció una visión general de los síntomas y el tratamiento de la demencia causada por ambas enfermedades. El seminario web fue moderado por Linda Higueras, de la Brain Support Network, cuyo padre padecía demencia por cuerpos de Lewy.
> youtube.com/watch?v=aI1cNiolCB0
Top Resources – Oldies but Goodies
These are all older resources that we hate to give up on because they are well-done summaries of LBD. However, because of the publication dates, there may be outdated information.
Orthostatic Hypotension (OH) in Parkinson’s Disease (PD), Multiple System Atrophy (MSA), and Lewy Body Dementia (LBD)
Dr. Veronica Santini describes the symptoms of OH, lists the conservative and medication interventions, and answers questions. This September 2017 webinar was co-hosted by Brain Support Network and Stanford.
> Webinar recording: youtube.com/watch?v=-FzsgUfQ_xIBrain
> Brain Support Network notes:
brainsupportnetwork.org/notes-orthostatic-hypotension-pd-msa-lbd-webinar/
Lewy Body Dementia: The Under-Recognized but Common Foe
This 2013 article was written by Drs. Meera Balasubramaniam and James Galvin. It addresses diagnostic challenges. Originally in “Cerebrum,” a publication of The Dana Foundation.
> ncbi.nlm.nih.gov/pmc/articles/PMC3999867
Life in the Balance: A Physician’s Memoir of Life, Love and Loss with Parkinson’s Disease and Dementia
This memoir by Thomas Graboys, MD and Peter Zheutlin, was published in 2008. Many caregivers in our local support group have read aloud parts of this book with their family member with LBD.
> abebooks.com/first-edition/Life-Balance-Physicians-Memoir-Love-Loss/31732699495/bd
New Insights Into Lewy Body Dementias
Dr. James Galvin, one of the US’s top experts on DLB, reviews the diagnostic criteria for both DLB and PDD, and treatment options. This one-hour webinar in October 2011 was hosted by the LBDA.
> youtube.com/watch?v=bGviUzZBISA&index=6&list=PLoWh_nzWJNnc_7JG8irqKMOPUEZdjnhIr
Treatment of and Research on Dementia with Lewy Bodies
This helpful update on DLB was given by Dr. Geoff Kerchner, a behavioral neurologist, at an October 2012 Stanford University event, that was recorded. Brain Support Network was one of the organizers.
> youtube.com/watch?v=UGtcvz2yT8M
Dementia with Lewy Bodies and Parkinson’s Disease Dementia: Patient, Family, and Clinician Working Together for Better Outcomes
This very useful guidebook by Dr. J. Eric Ahlskog, a neurologist with years of LBD experience, is written for the lay audience. Published in September 2013.
> amazon.com/Dementia-Lewy-Bodies-Parkinsons-Disease/dp/0199977569
DLB Diagnostic Criteria
The source of the diagnostic criteria for DLB is Diagnosis and Management of Dementia with Lewy Bodies: Fourth Consensus Report of the DLB Consortium, McKeith et al, Neurology, July 2017.
Chart from: Dementia Insights: Diagnosis and Management of Dementia With Lewy Bodies, Practical Neurology, Daniel L. Murman, MD, 05/17/2024. Based on McKeith, et al, 2017 criteria.