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Documentary Release on Lewy Body Dementia

On January 28, 2025, the Susan and Charles Berghoff Foundation made waves with the public release of its much-acclaimed documentary, Sue's Story: A Journey with Lewy Body Dementia. This release coincided with World Lewy Body Dementia Day, an initiative that seeks to bring attention to this often-overlooked condition. Approximately 11 million individuals globally are affected by Lewy body dementia (LBD), making it the second most prevalent form of dementia after Alzheimer's disease.

The documentary, now available on YouTube, chronicles the experiences of Sue Berghoff, who was diagnosed with LBD in 2017. In her own words, Sue illustrates how she transformed her diagnosis into a powerful tool for advocacy, helping others who are navigating similar challenges. The film also features insights from her husband and caregiver, Chuck Berghoff, alongside notable experts in neurology and neuroscience, including Dr. Kathleen Poston from Stanford Medicine, Dr. Geoffrey Kerchner from Roche, and Dr. Elena Call from Kaiser Permanente.

Lewy body dementia is a broad term that encompasses two interconnected diagnoses: Dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD). Despite its significant impact on individuals and families, LBD remains under-researched and inadequately funded. The advocacy efforts of the Berghoffs have led to the establishment of the Sue Berghoff LBD Research Fellowship at Stanford University in 2019, the formation of the Susan and Charles Berghoff Foundation in 2021, and the initiation of a support group for LBD caregivers in 2024.

The documentary has gained substantial recognition, clinching the award for Best Documentary Film at the Poppy Jasper International Film Festival in 2018. It has been integrated into Continuing Medical Education programs by institutions such as Kaiser Permanente and nursing programs at the University of California and California State University. Organizations like AARP have also included the film in their community education initiatives.

Understanding Lewy Body Dementia

LBD is characterized by a range of cognitive and physical symptoms that can significantly affect the quality of life. Symptoms include cognitive decline, behavioral changes, hallucinations, sleep disturbances, movement issues, and dysfunction of the autonomic nervous system. Currently, there is no cure for LBD, which makes it crucial to promote awareness and support for those affected. As the second most prevalent neurodegenerative dementia in the world, LBD commands urgent attention and advocacy efforts.

About the Susan and Charles Berghoff Foundation

The foundation is firmly rooted in providing education, resources, and funding for research centered on Lewy body dementia. Their commitment extends to supporting families grappling with the challenges posed by this condition, and their documentary stands as a testament to their dedication. To learn more about the foundation and to view Sue's Story: A Journey with Lewy Body Dementia, visit their official website or connect with them on social media platforms.