Lewy Body Dementia Research Center of Excellence
We are proud to announce the Lewy Body Dementia (LBD) Research Center of Excellence (RCOE) at Stanford University! In December 2017 researchers from across the country joined in the first-ever comprehensive network of research centers to conduct LBD clinical trials, provide community outreach, and expand professional continuing medical education. Representing 24 of medicine’s most prestigious academic medical research centers, these Research Centers of Excellence will help to streamline and standardize LBD science while connecting patients and families with the latest opportunities to participate in LBD clinical trials.
LBD Research Center of Excellence Directors
Kathleen Poston, MD, MS
Dr. Kathleen Poston is the Edward F. and Irene Thiele Pimley Professor of Neurology and the Neurological Sciences and Professor, by courtesy, of Neurosurgery. She completed her Movement Disorders fellowship training at Columbia University and a post-doctoral research fellowship at the Feinstein Institute, joining the Stanford faculty in 2009. In addition to LBD RCOE Co-Director, she is the Pacific Udall Center Clinical Core Leader at Stanford and the ADRC Clinical Core Co-Leader. Dr. Poston’s research lab is focused on understanding the cognitive and other non-motor impairments that develop in patients with Lewy body pathology. With this, the bulk of her clinical practice is caring for parkinsonian patients with cognitive impairments and, for her research studies, she has recruited over 200 parkinsonian patients with a wide range of memory impairments (PD with mild cognitive impairment, PD dementia, and LBD).
Sharon Sha, MD
Dr. Sharon Sha is a Clinical Professor at Stanford University. She completed her Behavioral Neurology fellowship training at the UCSF Memory and Aging Center and joined the Stanford Faculty in 2013. In addition to LBD RCOE Co-Director, she is the Medical Director of the Stanford Neuroscience Clinical Trials Group, Co-Director of the Huntington’s disease and Ataxia Clinic, clinical core co-leader of the Stanford ADRC, the founding Director of the Stanford Behavioral Neurology Fellowship and leads the clinical trials for the Memory Disorders division. The majority of her clinical and research time is devoted to caring for patients with behavioral neurodegenerative disorders, finding treatments for them, and training the next generation to do the same.
LBD Research Center of Excellence at Stanford University
The Research Center of Excellence is located in the Stanford University Department of Neurology & Neurological Sciences, as part of the Division of Memory Disorders and the Division of Movement Disorders, which have rapidly grown into world-leading programs that are highly integrated and uniquely collaborative. Our Center includes both Memory disorders and Movement disorders Physicians, Neuropsychologists, a Psychiatrist, Nurse coordinators, Social Worker, Genetics counselor, and Physical/Occupational/Speech Therapists.
Highlights of our integrated Center include:
The Stanford Alzheimer’s disease Research Center (ADRC) started at Stanford in 2015. Our ADRC is the only national Center with a dual focus on cognitive impairments due to Alzheimer’s and Lewy body pathologies. We are actively recruiting patients with Lewy Body Dementia (LBD), Alzheimer’s disease (AD), Parkinson’s disease (PD), and healthy adults.
The Poston Lab conducts translational research that bridges basic science with patient care. We study biological biomarkers, imaging biomarkers, and clinical biomarkers to understand the neural underpinnings of dementia and cognitive impairments in people with Lewy Body dementia (included Parkinson’s disease dementia and Dementia with Lewy Bodies.
What is Lewy Body Dementia (LBD)?
Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. LBD is the second most common neurodegenerative cause of dementia, after Alzheimer’s disease.
Is LBD different from other causes of dementia?
Diagnosing LBD can be extremely difficult. Patients can present with problems in movement, cognition/memory, or behavior. Therefore, LBD can be difficult to distinguish from other neurodegenerative diseases, like Alzheimer’s disease and Parkinson’s disease. Confusing the matter further, the terminology used for these different disorders can overlap. In general, there are two types of LBD – dementia with Lewy Bodies (often abbreviated DLB) and Parkinson’s disease dementia. The earliest signs of these two diseases differ but reflect the same biological changes in the brain. Over time, people with dementia with Lewy bodies or Parkinson’s disease dementia may develop similar symptoms.
Who is affected by LBD?
LBD affects more than 1 million individuals in the United States. LBD typically begins at age 50 or older, although sometimes younger people have it. LBD appears to affect slightly more men than women. LBD is a progressive disease, meaning symptoms start slowly and worsen over time. However, how quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms.
What are Lewy Bodies?
Lewy bodies are named for Dr. Friederich Lewy, a German neurologist. In 1912, he discovered abnormal protein deposits that disrupt the brain’s normal functioning in people with Parkinson’s disease. These abnormal deposits are now called “Lewy bodies.”
Lewy bodies are made of a protein called alpha-synuclein. In the healthy brain, alpha-synuclein plays a number of important roles in brain nerve cells, especially at synapses, where nerve cells communicate with each other. In LBD, alpha-synuclein forms into clumps inside neurons. This process causes neurons to work less effectively and, eventually, to die. The activities of brain chemicals important to brain function are also affected. The result is widespread damage to certain parts of the brain and a decline in abilities affected by those brain regions.
Lewy Body Clinical Trials
The expansive Stanford Neuroscience Clinical Trials Program, under the direction of Dr. Sharon Sha who serves as Medical Director, includes clinical trials related to Neurology, Neurosurgery, and Neuroradiology. All of these clinical and research activities are on site at our new state-of-the-art Stanford Neuroscience Health Center (SNHC) where participants can obtain brain imaging (PET, MRI, CT), treatment infusions, lab tests, cognitive testing, and neurological evaluations. Our clinical trials are expanding and have approximately 100-200 clinical trials ongoing at any given time.
Sponsor: Cognition Therapeutics Inc.
Indication: Mild or moderate Dementia with Lewy Bodies
Age: 50-85 years old
Brief Summary: A Randomized, Double-blind, Placebo-controlled, Phase 2, 6-month Study to Evaluate the Safety, Tolerability and Exploratory Efficacy of CT1812 in Subjects with Mild to Moderate Dementia with Lewy Bodies
Clinicaltrials.gov identifier: NCT05225415
PI: Sharon Sha, MD
Contact: Stephanie Tran; firstname.lastname@example.org; 650-521-7287
Who can participate
1) Subjects must have a caregiver/ study partner
2) Men or women 50-85 years of age (inclusive), meeting criteria for probable DLB .
3) MMSE 18-27 inclusive.
4) If receiving acetylcholinesterase inhibitors (AChEI), memantine or a combination of the two, must have been on a stable dose for at least 12 weeks before the screening visit.
Making a Donation
Support Stanford research into the causes of Lewy Body Dementia.
A gift to the Sue Berghoff LBD Research Fellowship Fund will support the work of a post-doctoral Research Fellow dedicated to biomarker discovery in people with Lewy Body Dementia (LBD), the second most prevalent cause of dementia.
Stanford's Poston Lab leverages research infrastructure from the Stanford Alzheimer’s disease Research Center and the Pacific Udall Center for Excellence in Parkinson’s Research. These Centers collect in-depth clinical, biological, and imaging data on people with Alzheimer’s, Parkinson’s, and Lewy Body Dementia diseases; and older adults with no neurological problems.
Our dedicated Research Fellow would use this data, aiming to identify a biomarker to improve diagnostic accuracy, predict clinical symptoms, or identify underlying pathology. Such a biomarker is critical to the success of future LBD-specific clinical trials, which are critical to the development of potential therapies and a cure.
If you’d like to make a donation for this purpose, choose from the following two options.
Donate online here and follow these steps:
- Select Stanford Medicine
- Select Stanford Medicine (other)
- In Special Instructions, type “Sue Berghoff LBD Research Fellowship Fund”
- Click "Continue As Guest" to enter your contact and payment information and submit your donation
Donate by mail
- Make your check payable to Stanford University
- Add "Sue Berghoff LBD Research Fellowship Fund" on the memo line
- Enclose a letter stating: "this donation is a gift to be used for the Sue Berghoff LBD Research Fellowship Fund"
- Mail your donation to:
ATTN: Anne Longo
485 Broadway Street, 4th Floor
Redwood City, CA 94063
For questions about giving, please contact:
Stanford University is a non-profit organization and gifts are tax deductible.
Lewy Body Dementia Resources
The Sue's Story Project works to increase awareness, caregiving resources, and funding for research toward a cure for Lewy body dementia (LBD), the second most common type of progressive dementia after Alzheimer's Disease. Our mission is inspired by co-founder Sue Berghoff who has LBD. We provide dementia education workshops and seminars to medical professionals, university students, social services organizations, professional and family caregivers, and communities. Our documentary, "Sue's Story: A Journey with Lewy Body Dementia," provides a basic understanding of LBD through the perspectives of patient, family caregiver, researcher, physician, and provider of caregiving services. Our film is regularly featured in CME/CE presentations. Sue and Chuck Berghoff established the Sue Berghoff LBD Research Fellowship, which is focused on LBD biomarker research at Stanford.
Learn more about The Sue’s Story Project LBD workshops and seminars.
Lewy Body Dementia - Best Local Resources
Bay Area LBD Caregiver Support Group has caregiver-only support group meetings on a Sunday evening, from 5-7pm, about every six weeks at a San Francisco Bay Area restaurant in San Mateo, CA. An email list for updates on LBD research and resources is available for Northern Californians and Central Californians coping with DLB and PDD. Plus Brain Support Network helps LBD group members donate a loved one's brain for research. Contact group leader Robin Riddle by phone 650-814-0848 or email to be added to LBD email list or for meeting schedule.
Belmont, Daly City, Los Altos, and Menlo Park Parkinson's Caregiver Support Groups, organized by Stanford University. These caregiver-only support group meetings are held on weekdays, generally from noon to 2pm, once a month. While these groups are focused on caregivers for those with Parkinson's Disease (PD), many caregivers are also coping with dementia in the context of PD. Visit the Stanford Parkinson's webpage of PD caregiver-only support group meetings to learn the contact info for the group leaders.
Gold River Lewy Body Support Group has caregiver-only support group meetings on the second Thursday of each month, from 10-11:30am at Eskaton Lodge in Gold River, CA. Contact group facilitator Denise Davis by phone 916-930-9080 or email for meeting information.
North Bay Lewy Body Dementia Support Group has caregiver-only support group meetings on the second Tuesday of each month, from 4:30-6pm at the Alzheimer's Association office in Santa Rosa, CA. Contact group facilitators Helen Medsger or Carrie Healy, LCSW by email for meeting information.
Lewy Body Dementia - Best National Resources
- list of "Top Resources" on Lewy body dementia (LBD)
- LBD blog, including posts with webinar notes and important LBD research
- email list for LBD caregivers
- brain donation for those diagnosed with Lewy body dementia around the US
Lewy Body Dementia Association, based in Georgia.
Contact: phone 404-935-6444, tollfree caregiver support hotline
- downloadable publications on Lewy Body Dementia for those with LBD and their families
- archived recordings of webinars and interviews
- tollfree support hotline for LBD caregivers
- downloadable publications for healthcare professionals, including information on emergency room treatment of psychosis
For more information please contact:
Robin Riddle, APDA Coordinator
The LBD RCOE are sponsored by the Lewy Body Dementia Association
RCOE Articles for Community Education
All articles have been drafted and edited by members of the Community Education and Support Working Group, as well as edited and approved by Angela Taylor, LBDA, and Brad Boeve, MD, Mayo Clinic.
Renee Gadwa, MBA
Henry Paulson, MD, PhD
LBDA Research Center of Excellence
University of Michigan
Michigan Alzheimer’s Disease Center
Lewy body dementia (LBD) is the second most common form of progressive dementia. An estimated 1.4 million Americans in the United States have LBD. The symptoms of LBD overlap with other more well-known diseases, like Alzheimer’s and Parkinson’s disease. This leads to misdiagnoses, with only 30-50% of LBD cases being accurately diagnosed. Read on to learn more about what makes LBD unique and the importance of receiving an early and correct diagnosis.
Imagine dementia as a fruit bowl…
“What’s the difference between Alzheimer’s disease and dementia?” This is one of the most common questions we receive. It’s an important question because the terms are often used in place of each other. However, they mean different things.
In brief dementia is a broad ‘umbrella’ term. It means cognitive (thinking) symptoms interfere with a person’s normal daily functioning. Dementia can affect behavior, decision-making, memory, language, visual or spatial perception, and attention. Typically, more than one of these abilities is impaired. However, one category may be most obviously affected.
There are many reasons why someone might have dementia. Alzheimer’s disease is one cause, and accounts for about 75 percent of progressive dementia. Therefore, the words are often used interchangeably.
Consider the following visual image:
Imagine the fruit bowl in your kitchen represents the various causes of dementia. While many kinds of fruit are in the bowl, the fruit found most often -- perhaps a large bunch of bananas -- is Alzheimer’s disease. Other fruits are causes of dementia that aren’t as common. These are LBD (orange), vascular dementia (peach), and frontotemporal dementia (pear). Dementias that are rarer still, such as Huntington disease, also are in the bowl (starfruit, anyone?). They all look and taste different, but they’re all fruits. Sadly, distinguishing the various forms of dementia is not as easy as knowing a banana from an orange.
What makes LBD different?
“Lewy bodies” are abnormal clumps of the protein “alpha-synuclein” that build up in the brain. These deposits are the biological process that sets apart LBD from other dementias. Lewy bodies are found inside brain cells. They are also found in Parkinson’s disease (PD), but the number of cells containing Lewy bodies in PD is far lower than in LBD. Researchers still don’t know exactly how, but Lewy bodies impair the function and health of brain cells. In time, they lead to loss of the cells (“degeneration”).
There are no tests, like brain imaging or other technology, which can detect Lewy bodies in living people. We can only see Lewy bodies by looking at brain tissue under a microscope. Researchers are actively looking for biomarkers (biological measurements) that can distinguish LBD from other dementias. Examples include blood or spinal fluid.
For now, however, we rely heavily on clinical clues. Alzheimer’s disease often starts with decline in memory. In comparison, people with LBD often have a wide range of other symptoms. These symptoms include:
- Visual hallucinations
- Significant day-to-day fluctuations in abilities or alertness
- Stiffness and slowness of movement (parkinsonism)
- Acting out dreams (REM sleep behavior disorder)
By themselves, none of these symptoms is sufficient to make the diagnosis. Not everyone with LBD develops all of them. Visual hallucinations and parkinsonism, for example, are well recognized hallmark features of LBD. However, they are not always the first symptoms.
As LBD progresses, the intensity of symptoms may change over time, getting better or worse. What a person with LBD experiences this month may not happen next month. This uncertainty and fluctuation can be stressful for everyone affected by LBD.
Accurate diagnosis of LBD is critical.
Putting a name to this disease helps people with LBD and their families. They move beyond what can be an emotionally draining search for a diagnosis. Accurate and early diagnosis of LBD is critically important. It allows individuals and families to understand current symptoms and plan for future issues that might arise. Such knowledge can be empowering.
Making the right diagnosis also ensures that potentially helpful medications are offered. For example, medications developed originally for Alzheimer’s disease may help cognitive symptoms in LBD. The stiffness and slowness of LBD may improve with medications typically used for PD.
Equally important, medications that could be dangerous are avoided. Many antipsychotic medications used to treat behavioral symptoms can cause problems in LBD. This includes worsening of stiffness and slowness.
A diagnosis of LBD is made after a thorough evaluation. This includes a review of symptoms and current medications, a neurological exam, brain imaging, and blood tests. Some of these tests rule out other medical conditions that, if not properly treated, can mimic the signs of dementia. (Examples include vitamin deficiencies or thyroid disease).
Additional cognitive testing, spinal fluid analysis, brain wave study (EEG) and/or a sleep study may provide further clues to diagnosis. Sometimes it is necessary to monitor clinical change over time to be more sure of the diagnosis.
For more information:
The Lewy Body Dementia Association: www.lbda.org
The National Institute on Aging: www.nia.nih.gov
A Caregiver’s Guide to Lewy Body Dementia: Empowering Today’s Dementia Caregiver
Helen Buell Whitworth, MS, BSN, and James A. Whitworth (2008)
This book is written in everyday language and filled with personal examples that connect to the readers’ own experiences. It provides an accurate, detailed view of the disease in easy to understand terms.
Dementia with Lewy Bodies and Parkinson's Disease Dementia: Patient, Family, and Clinician Working Together for Better Outcomes
Dr. J. Eric Ahlskog (2013)
In Dementia with Lewy Bodies and Parkinson's Disease Dementia, Dr. J. Eric Ahlskog draws on 30 years of clinical and research work at Mayo Clinic to arm patients and families with crucial information that will enable them to work in tandem with their doctors.
Lewy Body Dementia: The Under-Recognized but Common Foe
Dr. James Galvin and Dr. Meera Balasubramaniam (2013)
Treatment of Behavioral Symptoms: When to Consider Antipsychotic Medications in LBD
Lewy Body Dementia Association
Matthew Barrett, MD, MSc
Carol Manning, PhD
LBDA Research Center of Excellence
University of Virginia Memory and Aging Care Clinic
The terms often used in association with Lewy body dementias are different from other dementias and can sometimes be confusing. This article may be helpful in understanding terms commonly used to describe features of the Lewy body dementias.
Two related causes of dementia are dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). Together, these dementia syndromes are considered Lewy body dementias, because individuals that have either of these disorders have Lewy bodies in their brain cells. Lewy bodies are abnormal clumps of protein which are primarily made of a protein called alpha-synuclein. Lewy bodies cannot be observed during life yet but are associated with certain clinical symptoms that occur in Lewy body dementias.
What differentiates dementia with Lewy bodies and Parkinson’s disease dementia is when symptoms of Parkinsonism occur in relation to dementia. If motor (movement) symptoms seen in Parkinson’s disease begin more than a year before dementia develops, then the diagnosis used is Parkinson’s disease dementia. However, if dementia develops before or around the same time as motor symptoms seen in Parkinson’s disease, then the diagnosis given is dementia with Lewy bodies.
So what other terms are commonly used when talking about LBD?
Dementia describes a change in thinking that interferes with performing daily activities of everyday life. A history of cognitive decline and impairment in daily activities are necessary to make a diagnosis of dementia. Bedside cognitive testing and often neuropsychological testing can be helpful for confirming the presence of cognitive impairment, as well as revealing the strengths and weaknesses across the main areas of cognition. Neuropsychological testing consists of an interview of the patient and informants (often family members), assessment of mood, and comprehensive cognitive testing. Dementia with Lewy bodies and Parkinson’s disease dementia are associated with certain patterns of cognitive changes that help differentiate them from Alzheimer disease.
Motor symptoms - Individuals with Parkinson’s disease dementia and sometimes dementia with Lewy bodies have the motor symptoms of Parkinson’s disease. These symptoms are also called parkinsonism and include 4 types of changes in function.
- Resting Tremor -The tremor more often occurs at rest rather than with movement, affects the arms, and is usually asymmetric (affecting one side of the body more than the other).
- Rigidity - Stiffness in the limbs and neck occur during movement.
- Bradykinesia - Bradykinesia describes slowed movement.
- Postural Instability - Postural instability describes the loss of reflexes that ensure balance while walking and standing.
Other symptoms of the Lewy body dementias include:
- Visual Hallucinations – Common visual hallucinations are of people and animals and may be more prominent in conditions of reduced visibility or at night.
- REM Sleep Behavior Disorder (RBD) - RBD describes the tendency to act out dreams during REM sleep. Normally, individuals have no motor activity during dreaming, but with REM sleep behavior disorder, a person may move their limbs or vocalize, sometimes to the point of falling out of bed, yelling, punching, etc.
- Fluctuations in Attention - A characteristic of the cognitive decline in Lewy body dementias is unpredictable changes in the level of attention and alertness. When severe, individuals may be largely unresponsive for periods of time. This lack of responsiveness needs to be distinguished by healthcare providers from orthostatic hypotension and syncope.
- Orthostatic Hypotension - Orthostatic hypotension describes a decrease in blood pressure while standing, walking, and perhaps sitting, that can lead to feeling lightheaded or fainting.
Biomarkers in LBD
Biological tests that prove the presence of a disease process, or its progression, are called biomarkers. Increasingly, biomarkers are helpful in diagnosing LBD. For example, brain imaging with head CT or brain MRI and laboratory tests are often performed during the initial evaluation for cognitive impairment to eliminate other causes of dementia. Tests that are very helpful in making the diagnosis of dementia with Lewy bodies include:
- Polysomnogram - Often called a sleep study, a polysomnogram can determine if an individual has increased motor (movement) activity with or without the presence of complex motor behaviors during REM sleep. This is a finding consistent with REM sleep behavior disorder.
- Nuclear Imaging Tests – Specialized scans using nuclear medicine, such as dopamine transporter SPECT imaging or fluorodopa PET imaging, can identify changes in dopamine function in the brain that may parallel the presence of parkinsonism.
- MIBG myocardial scintigraphy - MIBG myocardial scintigraphy may show loss of function of nerves to the heart, which may be related to changes in a certain part of the nervous system that regulates blood pressure.
Hopefully the definitions above make the terms specific to the Lewy body dementias more understandable and will help improve understanding of future articles on these dementias.
Melissa J. Armstrong, MD, MSc
LBDA Research Center of Excellence
University of Florida (Gainesville)
Fixel Center for Neurological Disorders at UF Health
It’s the most wonderful time of the year…
But it may take some extra planning and new ways of celebrating, if you live with someone with memory and thinking problems (dementia). Traveling, large family gatherings, and long days of celebration can be particularly challenging for people with Lewy body dementia (LBD). Here are some ideas for making the holidays easier.
1. Celebrate in familiar places. It is easy for people with dementia to become confused in new places. It is often best to have family visit the person with LBD. Keeping a familiar home environment makes gatherings easier.
If you need to travel, try to pick a familiar destination. Limit the number of new situations (e.g. airports). Make use of opportunities for travelers with illnesses, such as wheelchairs and pre-boarding. Tiny airport bathrooms are hard for people with Parkinson’s-like movement problems. Use bathrooms in advance, use family bathrooms when feasible, and consider disposable undergarments as a safety measure. Request assistance from airport staff if you need to use the bathroom and the person with LBD is not able to join you in the bathroom; this will minimize the likelihood of the person walking away and getting lost. Make sure medications are in a carry-on bag.
If you’re hosting, consider whether family should stay with you. It can be helpful for visitors to stay at a nearby hotel or rental. This allows the person with LBD to have a place to retreat from visiting crowds. Visiting family should pitch in so that caregivers aren’t overburdened.
2. Prepare visiting family members. If family members haven’t seen the person with LBD recently, let them know the changes that have occurred. Make sure visitors have realistic expectations. Even with advance discussions, family can be surprised or upset about changes since their last visit. Be honest with family members about the difficult emotions they may experience when they see the person with LBD and what has changed.
3. Keep a schedule. Having a daily routine is important for people with LBD. Keeping to this schedule even during the holidays can be helpful. Often mornings are the best time of day for people with LBD. Plan family activities for those best times. Make sure the person with LBD gets breaks during the day for naps or time alone. Plan activities for other family members during these times. Avoid evening celebrations.
4. Involve the person with dementia. Plan activities that the person with LBD can do. People with dementia often connect with music – have a family sing-along. Decorating cookies is an easy activity to do seated. Have grandchildren play musical instruments or read a favorite Christmas book aloud. Look at old photographs. Ask the person with LBD to share a favorite holiday memory.
5. Expect a post-gathering letdown. People with LBD can sometimes rally themselves for big events or family gatherings. Afterwards, though, they may be more fatigued or more confused than usual.
The holidays are a great time to make special memories. Thoughtful planning can help make family celebrations a success.