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 thesuesstoryproject.com
or follow their progress on Facebook.
GILROY • MORGAN HILL • SAN MARTIN
SPRING 2020
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