Men and women who act out their dreams at night may not face the same risks for dementia later in life.

A new international study finds that men with REM sleep behavior disorder (RBD)—a sleep condition linked to vivid, physical dream enactment—show greater early brain shrinkage than women with the same disorder. Those brain changes appear in the same areas that later deteriorate in dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). The discovery suggests that women’s brains may have natural biological protections that slow or reduce the damage that can lead from RBD to dementia.

The connection between RBD and dementia

 In healthy REM sleep, the brain turns off muscle activity so that dream content does not result in movement. In RBD, that “off switch” fails, and people may talk, punch, kick, or fall out of bed as they physically act out their dreams. On its own, RBD can be disruptive and even dangerous. But researchers have learned that it is also one of the earliest warning signs of certain brain diseases. More than 70% of people with RBD eventually develop a synucleinopathy—a disease marked by abnormal buildup of a protein called alpha-synuclein. The most common of these are Parkinson’s disease and DLB.

Because RBD can appear years or even decades before dementia symptoms start, it offers a unique window into the earliest stages of neurodegeneration.

A closer look at men’s and women’s brains 

The new study, led by scientists at the University of Montreal and published in Nature Communications, analyzed brain MRI scans from 888 people—408 with confirmed RBD and 480 healthy controls, meaning people with no known major brain disorders. The researchers examined the cortex, which is the thin outer layer of the brain that supports thinking, voluntary movement, and sensation. When the cortex becomes thinner, that signals a loss of brain cells, a process that researchers call atrophy.

The results showed clear differences between the sexes:

• Men with RBD had much more cortical thinning than women, particularly in the back and top parts of the brain—regions that help with movement, coordination, and visual processing.
• Women had far less thinning, even though they were similar in age and disease severity.
• Among healthy volunteers, there were no meaningful sex differences, suggesting the gap appears only once the disease process begins.

In short, men’s brains showed more early damage, while women’s brains seemed to resist it.

Searching for the reason behind women’s resilience

To find out why, the team looked at gene activity patterns in healthy brain tissue and compared them with the brain regions that stayed intact in women with RBD. They discovered that these protected regions had higher expression of genes linked to estrogen-related receptors. One of the genes, ESRRG, was especially active in brain tissue compared to other organs, suggesting it plays a brain-specific protective role. This kind of molecular activity could help female brains withstand early damage from toxic proteins such as misfolded alpha-synuclein, which accumulate in Lewy body dementias.

What this means for dementia risk

The findings support the idea that sex-linked biological factors influence the path from RBD to dementia.

• For men, more widespread cortical thinning could indicate a faster or higher-risk trajectory toward diseases like DLB and PDD.
• For women, estrogen-related genetic activity may provide some protection, delaying or reducing early brain damage.

This does not mean women are immune—many still develop dementia—but understanding these differences may help doctors identify who is most at risk and why. It also highlights potential targets for future therapies that could strengthen the brain’s systems in both sexes.

Key takeaways for the public 

• RBD is a powerful early warning sign for Lewy body–related dementias. Anyone who acts out dreams during sleep should be evaluated by a physician.
• Monitoring over time is key. Regular follow-up visits can help detect early cognitive or movement changes that suggest progression.
• Sex matters. Men and women may follow different paths from RBD toward dementia. Understanding these differences could lead to more personalized monitoring and treatment strategies.
• Research continues. Scientists are now studying whether targeting estrogen-related pathways could slow neurodegeneration.

Putting it all together

This large international study shows that men’s brains show earlier and more widespread atrophy in REM sleep behavior disorder, while women’s brains may benefit from protective, estrogen-related genes.

RBD remains one of the most important early clues to who may develop Lewy body–related dementia. By uncovering how sex differences shape that journey, researchers are getting closer to understanding why some brains are more resilient—and how that resilience might be shared with everyone.

REFERENCE:

Filiatrault, M., Ayral, V., Tremblay, C. et al. Estrogen-related receptor gene expression associates with sex differences in cortical atrophy in isolated REM sleep behavior disorder. Nat Commun 16, 9016 (2025). https://doi.org/10.1038/s41467-025-63829-w

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In recognition of National Family Caregivers Month we are spotlighting research studies for care partners. If you or someone you provide care for is participating in a clinical trial, you already know that care partners play a key role in research studies. In fact, the care partner is such an important source of information that many studies actually require a care partner to participate in addition to the person living with Lewy.

But did you know that there are many studies that are focused on the care partner rather than on the person living with Lewy? In these kinds of studies, researchers examine the caregiving experience and try to find ways to improve quality of life for the care partner and the person living with Lewy.

In many cases, these studies can be completed from the comfort of your own home. Often, you can connect with the study team via video conferencing rather than visiting a clinic.

A few examples of this kind of study include:

• The Lewy Body Dementia Caregiver Study is gathering information about day-to-day stressors associated with LBD caregiving, with an eye toward future development of strategies to reduce their impact on quality of life.
• The I-Care-Rural pilot study is evaluating an app for rural care partners with the goal of reducing care partner stress and improving certain symptoms of the person living with Lewy.
• The Caregiver Bootcamp study is testing a prototype educational program for family and friends of people who have been recently diagnosed with dementia.
• The LEAD study is trialing a guided tool designed to improve advance care planning by people living with Lewy and their care partners by focusing on communication and the development of mutual understanding.
• The FinLe study is developing a web-based tool that may help people with dementia and their care partners accomplish personalized financial management and legal planning.
• The CareEx study is focused on learning more about extended family care partners, such as grandchildren, siblings, nieces/nephews and step-kin.
• The PERSEVERE study is testing an educational program for family care partners of people living with Lewy.

You can see more information about these and other studies – either for care partners or for people living with Lewy – you can always visit the LBDA clinical trials page, which contains information on currently recruiting studies.

New studies launch frequently. To be kept up to date by email when new studies launch that match your characteristics and interests, consider signing up for the Lewy Trial Tracker.

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What is this study about?

The purpose of the study is to:

• Test how usable and acceptable Brain CareNotes is for rural caregivers.
• See if a larger trial in rural communities is possible.
• Estimate how much the app can reduce caregiver burden and patient symptoms compared to an education-only app.

What is involved?

• Participants will take part for 6 months.
• Participants will complete three assessments.
• Beginning of study
• At 3 months
• At 6 months
• Participants are randomly assigned to one of two groups:
• Group 1 – Brain CareNotes app: interactive app with caregiver support, educational resources, and access to a trained care coach.
• Group 2 – Dementia Guide Expert app: education-only app about dementia.
• Those in the Brain CareNotes group use the app every two weeks to track symptoms and access personalized advice. They can also message a care coach for support.

Who can participate?

Caregivers who are:

• Age 18 or older
• Able to read, understand, and communicate in English
• Unpaid rural caregiver of person diagnosed with Alzheimer’s disease or a related dementia (ADRD) at any stage
• Reside at a rural address
• Provide support for person with ADRD who resides in the community and is not a resident of a nursing home

Study Site

Study Funder/Sponsor

The study is funded by the National Institutes of Health and sponsored by the Indiana University School of Public Health.

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What is this study about?

The study is testing an online educational program designed to improve caregivers’ confidence and ability in caring for a loved one with dementia. It also explores how the program may improve caregivers’ overall well-being and quality of life for both caregivers and the person living with dementia.

What is involved?

Participants will take part in a 5-week online program that combines live sessions with self-paced activities. The program includes education, skill-building, and interactive exercises on topics such as coping with a diagnosis, daily caregiving, safety, building a support network, and self-care. Participants will also complete evaluations to share feedback about the program’s usability and effectiveness.

Who can participate?

A person may be able to participate if they:

• Are 18 years of age or older
• Are able to read and understand English
• Are actively caring for someone living with dementia or cognitive impairment
• Serve as primary or co-primary caregiver
• Have access to the internet, as program sessions will be held over Zoom

Study Site

Study Funder/Sponsor

This study is funded by the National Institute on Aging (NIA)

For more information, please contact Karah Alexander, Program Coordinator, 404.544.9916 or email boot.camp@emory.edu. You may also complete the screening form at https://forms.office.com/r/AZTW65Jbg5.

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Lewy body dementia (LBD) includes Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB). Lewy Body dementia it is the second most common form of progressive dementia after Alzheimer’s disease. It happens when abnormal protein deposits—called Lewy bodies—build up in the brain and disrupt how brain cells work together. LBD is unique among dementias in how widespread symptoms can be. LBD affects not just memory and thinking, but also movement, mood, sleep, and behavior, presenting ongoing challenges throughout the day and the night.

What We Need to Know about Care for People Experiencing LBD

All forms of dementia may involve good days and bad days, but LBD is unique in how rapidly things can change throughout the day. LBD also has more sleep disruptions than other forms of dementia, making nights demanding as well as days. But we know surprisingly little about patterns of symptoms throughout the day and night.  Understanding how and when symptoms change would could help caregivers effectively respond to those symptoms, and minimize stress. Caregivers for LBD need interventions in the moments when problems are occurring.

Researchers at the University of Texas at Austin have received funding from the National Institutes of Health/National Institute on Aging to study LBD caregivers’ daily experiences. By learning more about daily experiences, researchers may be able to develop more effective interventions to address challenges at the time they arise.

What is being done?

Dr. Karen Fingerman at the University of Texas at Austin, an expert in understanding older adults’ family lives, and how spouses, parents, children, and other relatives support one another in daily life, is leading a study called the Lewy Body Dementia Caregiver Study. This study examines challenges that occur in everyday life for LBD caregivers in real world settings.

Importantly, all participation is by phone and virtual and the study team is looking for volunteers from all around the US.

Caregivers first complete a phone interview (the baseline interview) where they are asked to share their overall experiences helping their family member with LBD.

Then, caregivers wear FitBits that track their heart rate, sleep cycles, and physical activity such as sitting or lying down, or being mildly or very active. The researchers also provide caregivers with a smartphone that is easy to use: It has only the apps needed to answer brief surveys about symptoms, caregiving, and stress throughout the day for 4 days. The research team helps walk the caregiver through the process of using the app. If the person experiencing LBD is also willing to participate, they wear a FitBit as well. This allows us to compare the stress that both people experience and their patterns of sleep.

Participants receive compensation for their participation in each component of the study in the form of gift cards of their choice or a check. The research team keeps in touch with the participants throughout the study. Caregivers who have participated report feeling supported throughout the daily data collection.

What has the study team learned so far?

The researchers have already learned several important things about caregiving for LBD. For example, caregivers sometimes experience feelings of isolation because the family member experiencing LBD does not wish to discuss their experiences with the disease. So far in the study, approximately half of the family members with LBD were willing to talk with their caregiver about the disease, but close to half were not at all, a little or only somewhat likely to talk about it.

Healthcare professionals also seem to lack information about LBD. Over 40% of caregivers in the study so far reported receiving little or poor quality information about the disease, and over 40% also reported that they had to provide health care professionals with information about LBD. The plus side of that is that 60% of caregivers were receiving adequate information from their health care providers.

Some participants also reported rewards from caregiving: 49% of participants agreed that caregiving made them feel more useful, and 73% of participants agreed that caregiving made them feel needed.

The research team has also found large swings in the frequency of agitation. On average family members with LBD were agitated 6 times per day, but the number of agitation events ranged from “not at all” on some days, to one participant who experienced 24 episodes of agitation in a single day.

How can I get involved?

To learn more about this study, you can call the study team at 512-471-0618.

You can also visit the LBDA page for this study or the study team’s webpage.

Or if you have questions about the study or wish to enroll, you can also email caregivers@austin.utexas.edu.

For more information on clinical trials and other studies that might be right for you, LBDA encourages you to visit our clinical trials page. To stay up-to-date on new studies when they launch, you can also sign up for LBDA’s Lewy Trial Tracker.

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What is the study about?

The purpose of this study is to assess the effects of treatment with pulsed electromagnetic treatment device on disease progression for those individuals living with mild to moderate dementia.

What is involved?

The specific device used in this study is called the ECHS AD Device (for Electro Cellular Health Solutions Alzheimer’s Disease Device), which looks like a headband connected to some electronics. Volunteers will be shown how to use the device at the beginning of the study and are asked to utilize it at home 2-3 times per day, 15 minutes at a time. Volunteers will visit the clinic (Comprehensive Center for Brain Health in Boca Raton, Florida) a total of five times, once every 45 days, making the total time commitment 180 days. During clinic visits, volunteers will complete a number of assessments and tests.

Who can participate?

A person may be able to participate in this study if they:

• Are 50 years of age or older
• Are diagnosed with mild to moderate dementia, including Lewy body dementia, Alzheimer’s disease, or vascular dementia
• Have at least an eighth-grade education level
• Are able to wear a headband-type device 2 to 3 times per day, for 15 minutes each time

Study Site

Study Funder/Sponsor

The study is funded by Electro Cellular Health Solutions and sponsored by the University of Miami.

For more information, please email Shanell Disla, Study Coordinator, at sxd1210@miami.edu or call (561) 869-6825.

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What is the study about?

The aim of this online study is to test the LEAD Guide advance care planning tool for its usability, whether it improves decision-making self-efficacy, relationship quality, and feelings of wellbeing or anxiety, and whether it improves mutual understanding of the wishes of the person living with or at risk for dementia.

What is involved?

The LEAD intervention is designed to be self-administered and delivered through an interactive, web-based platform. Through three modules over the course of approximately eight weeks, the intervention will facilitate the advance care processes of 1) defining the care recipient care values and preferences, 2) developing a shared understanding of the care recipient’s values and preferences through conversation(s), and 3) encouraging ongoing ACP conversation and documentation that can be shared beyond the pair. Both the person living with or at high risk for dementia and the care partner will complete periodic questionnaires during the eight weeks, then again at 6- and 12-week follow-up periods.

Who can participate?

The study is looking for pairs – that is, both people living with or at risk for dementia and their care partners.

If you are the person who has changes with their memory or is in the early stage of dementia, you may join if you:

• Are age 50+
• Have subjective cognitive decline, mild cognitive impairment, or mild dementia

If you are the care partner, you may join if you are:

• Age 18+
• The spouse/partner, family member, or close friend

Study Site(s)

This study is virtual. No clinic visits are required, and volunteers can participate from anywhere. 

Study Funder/Sponsor

The study is funded by the National Institute on Aging (NIA), an institute within the National Institutes of Health (NIH)

For more information, please email the study team at lead@utah.edu

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New data from the full 32-week open-label extension phase of the RewinD-LB trial continue to suggest that the study drug, neflamapimod, may slow cognitive decline in dementia with Lewy bodies (DLB). In addition, lab tests performed during the study suggest that the drug may work by slowing underlying degeneration of brain cells.

What was the RewinD-LB trial?

RewinD-LB was a Phase 2b trial of the experimental drug neflamapimod in people with DLB. A prior Phase 2a trial showed benefit on cognitive decline, particularly for people without evidence of co-existing Alzheimer’s disease (AD). The RewinD-LB trial sought to replicate the findings of the earlier trial, but focused only on people with DLB and no evidence of AD.

In the main phase of RewinD-LB, researchers did not find the same kinds of positive results as they did in the original trial. However, the researchers learned that the drug capsules used in the main phase of the trial were not delivering the same level of drug as they did in the prior Phase 2a trial, possibly explaining the discrepancy in findings.

After the main phase of RewinD-LB, all participants were offered a chance to take the study drug in a phase of the trial called an open-label extension. In the extension phase, all volunteers take active drug; there is no placebo group. The open-label extension lasted for 32 full weeks, and results from the halfway point were previously reported. The researchers have now presented data from the full 32 weeks at the Alzheimer’s Association International Conference, a major medical conference dedicated to dementia research and treatment.

What have researchers learned from the extension phase?

During the extension phase, some volunteers took the same capsules as used in the main phase. These are the “old” capsules. Other volunteers took new capsules that delivered the expected amount of the study drug – “new” capsules.

Measures of cognition and day-to-day function were repeated at the 16-week time point and at the 32-week time point. Volunteers who were taking the “old” capsules continued to worsen. But for volunteers taking the “new” capsules, the worsening was markedly slowed, suggesting that the study drug is effective at slowing cognitive and functional decline when delivered at the intended dose level.

In addition, the study team measured the levels of an important protein in the brain called glial fibrillary acidic protein, which is often considered an indicator that brain cells are undergoing degeneration. In volunteers taking the new capsules, GFAP levels fell during the extension phase, suggesting that treatment with the study drug may slow decline by reducing degeneration of brain cells.

What is next for this neflamapimod as a potential treatment for DLB?

While these results look promising, they are from a Phase 2 trial. The drug will need to be tested in larger, Phase 3 clinical trials before it can be considered for approval.

How can I get involved?

Finding safe and effective treatments for Lewy body dementia takes research, and research takes people like you.

For more information on clinical trials and other studies that might be right for you, LBDA encourages you to visit our clinical trials page. To stay up-to-date on new studies when they launch, you can also sign up for LBDA’s Lewy Trial Tracker.

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What is this study about?

The aim of this study is to address the unique needs of this population and promote sustainable improvements in sleep and overall well-being. This research will assess the feasibility and preliminary efficacy of a 6-week, virtually delivered, tailored CBT-I intervention for dyadic intervention for persons living with cognitive impairment and their care partners.

What’s involved? 

Participants will be asked to complete sleep diaries and weekly activity diaries during the intervention. The dyads will also wear an ACTi watch and complete questionnaires at three time points over a six-month period.

Who can participate? 

A dyad in this study will include:

• One person living with memory loss or cognitive changes and a co-residing care partner (e.g., spouse, adult child, sibling).
• Both members must report sleep difficulties and be able to participate in virtual sessions and wear an actigraphy device.

Study Funder/Sponsor

The study is funded by the National Institute on Aging (NIA), an institute within the National Institutes of Health (NIH)

For more information, please email Dr. Glenna Brewster at drbrewsterlab@emory.edu.

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This research study is designed to collect information that will help improve our understanding of risk factors and predictors of dementia with Lewy bodies (DLB). Volunteers DO NOT need to be diagnosed with DLB to participate.

The long-term goal is to support early detection/diagnosis and discover new treatment targets.

What’s involved?

This study involves an in-person visit to a specialty clinic with expertise in DLB. The procedures will last approximately a full business day but may be split over multiple days.

During the visit, volunteers will give a blood sample, complete a survey, and receive detailed clinical assessments. Participants will also be scheduled for a brain MRI, DAT SPECT (also known as DaTscan), MIBG Cardiac Scintigraphy (a measure of the nerve that connects to the heart), and skin biopsy.

The visit will also include a feedback session during which a member of the research team meets with the volunteer to review a summary of the results.

Who can participate?

An individual may be able to take part in the study if he/she:

• Is age 50 or older
• Is community dwelling (i.e., not in a skilled nursing facility, nursing home, or assisted living)
• Speaks English
• Has someone who can serve as a Study Partner to provide collateral information (this is usually also a care partner)
• Does NOT have insulin dependent Diabetes Mellitus
• Is able to have an MRI (i.e., does not have certain implantable devices, claustrophobia, etc.)
• Individuals without a history of drug abuse
• Individuals who have not had cancer within the past 5 years

People DO NOT have to have a diagnosis of DLB to participate in this study. The study team is especially interested in finding people who fit the following categories:

• Idiopathic REM sleep behavior disorder (RBD)
• Parkinson’s disease without cognitive impairment
• Mild cognitive impairment with Lewy bodies
• Mild dementia with Lewy bodies

Study Site

Study Funder/Sponsor

The study is funded by the National Institutes of Health (NIH).

For more information, please email healthybrain@miami.edu, or call (561) 869-6840.

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