June is Brain Awareness Month—a good time to learn about dementia. Nearly nine million Americans have dementia, including more than 1 in 10 over the age of 65. Within the next decade, baby boomers will be the largest older adult population in U.S. history. Their risk of having dementia will double every five years. We have a public health crisis and we are not prepared for it.
Earlier this year, the California Department of Public Health awarded each of six counties, including Santa Clara County, $750,000 over three years to help address dementia as part of the Healthy Brain Initiative. County public health agencies are being called to respond in four ways: education, policies and partnerships, improved workforce competency and monitoring and evaluation.
According to Mayo Clinic, Lewy Body Dementia (LBD) is the second most prevalent cause of progressive dementia, yet it is still relatively unknown and therefore receives less research funding and caregiver resources than Alzheimer’s and Parkinson’s diseases.
Three years ago, The Sue’s Story Project was founded by Morgan Hill residents Sue and Chuck Berghoff and Robin Shepherd. Sue had just been diagnosed with Lewy Body Dementia, and her deep desire was to make something positive from her diagnosis. The project was created with a mission to increase LBD awareness, caregiver resources, and funding for research to find a cure. It is organized as a nonprofit sub-fund of the Morgan Hill Community Foundation. Since its founding, inroads have been made in several key areas.
Primary care physicians who have not received training related to LBD may not recognize early signs or refer their patients to a neurologist for testing and diagnosis. With this in mind, we are reaching physicians with LBD-specific information through the Continuing Medical Education programs they participate in to satisfy medical licensing requirements.
Because LBD is still not well known, it has not attracted the critical funding needed to support research. In 2019, we established the Sue Berghoff LBD Research Fellowship fund at Stanford University and raised $200,000 for focused LBD research.
According to our partner, Dr. Kathleen Poston at Stanford, “Our goal is to identify a biomarker for LBD to discover the underlying pathology, improve diagnostic accuracy, and predict clinical symptoms. This is critical to the success of LBD-specific clinical trials and to developing potential therapies and a cure.”
We are also supporting the formation of an innovative LBD caregiver support group pilot program led by Dr. Rochelle Woods of Kaiser Permanente. It is the first caregiver support group focused specifically on LBD in South Santa Clara County.
As a participant in the support group, Chuck Berghoff said, “Caring for someone with LBD is a heavy burden with a steep learning curve. Our group is led by a skilled facilitator who has created a safe space for us to express feelings and worries and to find out about caregiving resources.”
As of 2020, we are partnering with San Jose State University (SJSU) and other colleges and universities to co-host LBD information and resource events for students in nursing and allied health degree programs.
At the SJSU School of Nursing, Drs. Daryl Canham and Nancy Dudley are helping to educate students for roles in nurse-managed community health centers. Canham said this is especially important in serving people with dementia who “tend to be more comfortable and less anxious in familiar surroundings.” Regular nurse visits allow monitoring of dementia care outside of hospital settings.
As a society we need to talk openly about dementia and call on public officials to fund and create dementia-friendly legislation and programs. And we need to support focused research. Take some time to educate yourself. There’s a wealth of helpful information and resources:
Lewy Body Dementia Resource Center, lewybodyresourcecenter.org
Stanford LBD Research Center of Excellence, med.stanford.edu/poston-lab
Mayo Clinic, mayoclinic.org
Centers for Disease Control HBI Roadmap, cdc.gov
Brain Support Network, brainsupportnetwork.org
Family Caregiver Alliance, caregiver.org
Robin Shepherd is co-founder and Executive Director of The Sue’s Story Project, which advocates for increased awareness, caregiving resources and research funding to find a cure for Lewy Body Dementia.
