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The Sue's Story Project Team conducted a seven-city Dementia Awareness & Response Tour in 2019. Advisory Group members Jennifer Tate and Nick Gaich; Dr. Haritha Rachamallu and Jane Coppola from Kaiser Permanente; Sue and Chuck Berghoff; Robin Shepherd; Diana Miller, Santa Clara County Department of Aging & Adult Services; and Denise Dagan, Brain Support Network. Photo courtesy of The Sue's Story Project. firsthand how coordination of care can help patients with neurodegenera- tive diseases like LBD. In Sue’s case, she benefits from having a care team that brings expertise in the fields of Neurology, Geriatric Psychiatry, Movement Disorders, Internal Medicine, and Palliative Care. Another Advisor, Jane Coppola, is Manager of the Palliative Care and Transitions Program at Kaiser Permanente. “LBD patients are quite aware of their diminishing cognitive abilities, which can make them anx- ious or resistant to transitions. Early on, Sue’s palliative care team guided her through a discussion of what’s important to her and how she’d like to receive care as her disease progresses. This helped Sue and Chuck talk with their family about what to expect so they can be supportive,” Jane said. According to Advisor Jennifer Tate, “The advocacy of the Sue’s Story Project team inspired the formation of South County’s first caregiver support group dedicated to Lewy Body Dementia. “The group is underway as a pilot program under the guidance of Dr. Rochelle Woods, a Geriatric Psychiatrist with Kaiser Permanente and a nurse practitioner with clinical nursing expe- rience in Gerontology. It was Dr. Woods who first diagnosed Sue with Lewy Body Dementia after Sue struggled for several years without answers. She now serves as an Advisory Group member. “A trusted support group facilitated by someone with experience of LBD’s disease trajectory can help caregiv- ers who often lack the knowledge or resources to be effective and can become overwhelmed as the disease progresses,” Jennifer said. “The pilot program goal will provide a replicable model so that a caregiver support network can take root, sup- porting families who are members of Kaiser Permanente and other health systems in South County and beyond.” Peggy Martin is co-founder of Family Wealth Consulting and an Advisory Group member. “We all should have family conversations about issues like health and caregiving,” Peggy said. “Heads of families should speak with their children about what quality of life means to them and how they want to be cared for in the event of a serious disease. It can be difficult or impossible to express these things in later stages of dementia-related diseases. If nothing else, an Advanced Healthcare Directive should be in place that designates a health agent and an alternate who will uphold those wishes,” Peggy noted. “This Project has given Sue and me purpose and hope. We’re proud to be part of The Sue’s Story Project team, making progress toward our goals,” Chuck said. At every event, Sue’s there to help others. When someone in the audience shares a tearful story about dementia, Sue offers a hug and encouragement. Everyone in the room can see it’s from the heart. The Sue’s Story Project is organized under the Morgan Hill Community Foundation, a 501(c)3 nonprofit. Learn more at or follow their progress on Facebook. GILROY • MORGAN HILL • SAN MARTIN SPRING 2020 15