World Lewy Body Dementia Day

Today is World Lewy Body Dementia Day. Lewy body dementia is the second most common type of dementia, with the Lewy Body Dementia Association estimating it is the cause of up to 16% of dementia cases. The day is held on the birthday of Dr. Frederic Lewy, the doctor who discovered Lewy body dementia, and offers an opportunity to acknowledge and support those living with LBD.

In the video above, Let This Be a Symphony highlights six advocates who are raising awareness for Lewy body dementia. They share their own experiences with Lewy body dementia as those living with the disease, care partners, and family members. Together, they share hope action and community.

The Mayo Clinic Alzheimer’s Disease Research Center is a Lewy Body Dementia Association Research Center of Excellence, committed to conducting research into Lewy Body Dementia. We also wanted to highlight a couple of research studies focused on LBD, as well as support opportunities for those caring for someone with LBD.

Studies

DLB Spectrum Study

DLB Spectrum uses imaging and biomarkers to study how the brain changes as Lewy body disease progresses. Scientists want to better understand how the changes inside the brain relate to symptoms of cognitive and functional decline.

The purpose of this study is to determine the paths of change in imaging and other biomarkers of persons with Lewy body disease and related conditions, and their associations with rates of cognitive and functional decline.

NAPS2 Study

REM Sleep Behavior Disorder (RBD) is a disorder in which an individual acts out their dreams, physically and verbally. It is sometimes associated with Lewy body dementia. Through NAPS2, scientists want to gain a better understanding of how RBD progresses over time, by comparing information between those who do and do not have RBD.

Both DLB Spectrum and NAPS2 are currently looking for those without cognitive impairment to participate. If you would like to join the study, please reach out to Elizabeth at Abrahamson.Elizabeth@mayo.edu.

Resources

Caring for Lewy is a virtual support group offered by Mayo Clinic that meets virtually on the 2nd Thursday of each month at 2:00pm CT. It is tailored to those caring for someone with Lewy Body Dementia. If you are interested in joining the mailing list, please fill out this form.

Lewy Body Dementia Association: The leading organization for Lewy Body Dementia. The Lewy Body Dementia Association provides avenues for research and support to improve the lives of those with Lewy Body Dementia. They provide a list of Lewy Support Groups in each state and have a helpline, which can be reached at 1-800-539-9767.

Lewy Trial Tracker: A service offered by the Lewy Body Dementia Association that helps connect people living with Lewy body dementia, family members, and care partners to clinical research. The tracker provides quarterly updates of active and new studies.

Dementia Action Alliance: The Dementia Action Alliance is an organization dedicated to supporting those living with dementia. They created a comprehensive guide to dementia called Pathways to Well-Being with Dementia, which is free to download.

National Council of Dementia Minds: The National Council of Dementia Minds provides peer support and education led by people living with dementia and create resources that empower individuals, care partners and others that life with dementia can be lived fully, with meaning, purpose, connection, and joy.  They host groups designed for people living with dementia.

Lewy Body Life: A Minnesota-based podcast created to help care partners, family and friends understand and navigate the often complex and unpredictable Lewy body dementia journey.

Lewy Body Dementia: This NIH-produced booklet offers an overview of Lewy body dementia including the basics of the disease, advice for those living with Lewy, caring for someone with Lewy, and supporting families of people with Lewy body dementia.

Facing LBD Together: this booklet from the LBDA provides an overview of Lewy body dementia and includes medical alert cards for the person living with Lewy, which inform doctors and others about Lewy body dementia.