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Navigating Younger Onset Dementia: Insights from a Youth Advocate Olivia and Patti from Lorenzo's House

  1. Navigating Younger Onset Dementia: Insights from a Youth Advocate Olivia and Patti from Lorenzo's House Natalie Elliott Handy and JJ Elliott Hill 50:57

This episode highlights the impactful work of Lorenzo's House, supporting youth and families dealing with younger onset dementia. Featuring Olivia Compton, a 15-year-old youth leader, and Patti LeFleur, who leads the organization's youth programming, the discussion delves into empowering young caregivers.

Olivia shares her journey, explaining how she found support and community through Lorenzo's House after her father was diagnosed with Lewy Body Dementia. She describes the transformative impact of the organization's “light club” groups, which provide a safe space for young people to connect, share experiences, and learn mindfulness techniques. Patti elaborates on Lorenzo's House's three core programs – the match, clubs, and youth summit – all aim to combat isolation, build alliances, and drive dementia justice. The discussion highlights the organization's commitment to centering youth voices and experiences and empowering young caregivers to advocate for change.

Olivia's Wisdom and resilience shine through as she offers advice to other youth navigating the challenges of having a parent with dementia. The episode underscores the critical need to support Caregiving youth, who often face stigma and struggle to find resources tailored to their unique experiences. Lorenzo's House emerges as a beacon of hope, providing essential services and fostering a growing community of young advocates determined to make a difference.

About:

Olivia:

Olivia, a 15-year-old 9th grader, is a vital part of Lorenzo's House. After her father's Lewy Body Dementia diagnosis, she found community in the Teen Light Club and served as a Youth Lead at the 2023 and 2024 Youth Summit. Olivia leads mindfulness sessions, openly shares her story, and warmly welcomes others. A talented pianist, cellist, and choir singer, she enjoys video games, reading, crafts, and anime. Passionate about helping peers through similar challenges, Olivia cherishes the connections and friendships she's built at Lorenzo's House.

Patti: 

Patti is the former carepartner to her mom, Linda, who had younger-onset dementia – and a former elementary educator of over 10 years. Patti designs and leads our youth programming with intentionality, knowledge and love. Her capacity to connect with family members through lived experience and profound generosity of spirit sets the tone for how Lorenzo’s House shows up for families. Patti has a Masters Degree in Instructional Leadership and is a Certified Dementia Practitioner, has spent countless hours Volunteering with people living with neurocognitive disorders, and as a community educator for the Alzheimer’s Association.

Social Media: 

Website: https://lorenzoshouse.org/

Facebook: https://www.facebook.com/lorenzoshouseofficial/

Instagram: https

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Tune in on Whole Care Network

JJ Elliott Hill Confessions of a Reluctant Caregiver

Known since childhood as “The Elliott Girls” or simply, “The Girls”, it makes sense that we work together to support our mother, and each other. Our trio begins with Jenefer Jane “JJ” who was and always will be “in charge”. She’s the peacekeeper. The responsible one, ensuring Natalie and Emilie remain alive. Next is Natalie, the middle child, who was and always will be Miss Congeniality. She’s the athlete. The rebel responsible for three babysitters exiting the summer of ’84. Then there is Emilie, the youngest, who was and always will be “the baby”. At 6’1”, she is the sensitive and quiet soul. The one responsible for the guinea pig that begged for lettuce and the stray dog we adopted from the bus stop.

After high school we went separate ways, from New Mexico to North Carolina. JJ would go on to get her Master’s in Business Administration and work in the finance world before partnering with her now husband, Dexter, to run a variety of businesses. Natalie would go on to get her Master’s in Social Work degree, and work in the mental health field, advocating for children and families to receive the most appropriate services. Natalie would marry and divorce early on but later marry Jason. Emilie would exit college early to marry and gift us with Owen and twins, Maxx and Natalie Jane aka “The Kids”. Emilie would later divorce and work with county government, focusing much time on caring for the kids.

The source of the sisterhood falls to Jim aka “Big Jim” and Connie, small town high school sweethearts married for almost 40 years.

In 2005, at the age of 52, mom would be diagnosed with Parkinson’s Disease. She hid the disease for years behind dad’s 6’2” frame. The tremors and sudden inability to move were both calmed and steadied by his arm and simple presence. He was her rock. Our rock. Close family and friends knew of her chronic illness, but to the rest of the world, everything was “fine”. Life would turn upside down when our dad unexpectedly passed in 2011 of a massive heart attack at the age of 58. The assumption was Dad would always be mom’s caregiver but that wasn’t God’s plan.

Mom would spend the years following our father’s death desperately seeking a cure for Parkinson’s while trying to manage her symptoms. As the years went by, the cruel symptoms associated with the disease increased, negatively impacting her body while her mind remained clear and in tune. We lived our lives checking in to make sure she was “okay” but knowing the day would come when we had to do more. And then it did. The summer of 2019 changed everything. That’s where the real caregiver story begins for us. Little did we know she would be only the beginning of our caregiving journey.

In March 2022, Natalie’s husband, Jason, was diagnosed with head and neck cancer. From the first time Jason detected something off about the swollen lymph nodes in his neck, to the formal diagnosis, and the decision to move to New York City to participate in a clinical trial at Memorial Sloan Kettering Cancer Center, the journey would push them to their limits. The silver lining of his diagnosis was the cancer brought them closer to God, restoring their faith in Him while also experiencing a myriad of blessings through the kindness of family, friends, and strangers. Their story is a testimony that will inspire and offer hope.

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