Bringing Light to Families Touched by Younger-Onset Dementia
Bringing Light to Families Touched by Younger-Onset Dementia with Lorenzo's House
Imagine, for a moment, your world is turned upside down—how do you find the light? In 2017, the life of Diana Shulla Cose and that of her family took an unforeseen turn when her husband was diagnosed with younger-onset dementia. The roles within their house transformed rapidly; her young sons, just 11 and 14 at the time, became caregivers, and Diana, balancing being a primary care partner and the family's sole provider. They faced a journey with many challenges, yet, in adversity, they were not alone. Across the world, families like theirs face a similar path—misunderstood, under-resourced, and often shrouded in the shadows of stigma. Diana learned that there needed to be a place for families to gather to share their unique experiences, be encouraged and find support.
In 2021, after her husband's diagnosis, Diana envisioned and created a sanctuary for families navigating younger-onset dementia, named Lorenzo’s House in honor of her husband. With an extraordinary background in educational leadership and a profound personal connection to the cause, Diana is steering Lorenzo's House towards a future where no family walks this path alone. Lorenzo’s House stands as a testament to the collective resilience, carrying the banner, ‘We Bring Light.’ Here, they reimagine support for families touched by younger-onset dementia through their holistic care model that includes Youth Initiatives, Carepartner Connections, Memory Academy, and Respite & Healing Spaces. Their mission is to transform the narrative from one of isolation to one of profound connection, from sorrow to joy, and from shadows into light. They empower families to navigate this challenging journey with strength.
The heart of their mission shares the stories of the youth—they are the compass, guiding us with their resilience and truth. Along with Diana, Patti LaFleur, Lighthouse Outreach Lead, former care partner and a torchbearer of hope and guidance within their community, helps light the way forward. Today we have the opportunity to hear from Diana, Patti and our youth. Meet Shylah, 27, who finds solace in the shared experiences and coping strategies she gains through their community, Jaelyn, 15, whose love for art and literature becomes a bridge connecting her to peers, and Mattia, a 9-year-old with a passion for cooking, and who wants connect to others who have a parent who has dementia and know what it feels like. Their journeys are unique, yet they share a common thread: a life touched by younger-onset dementia. Their stories not only inform their approach but are integral to the pulse of Lorenzo’s House. Together, they shine a light!
I’m honored to share this podcast and for us to hear the courage and the challenges, the insights, and the innovation that steer Lorenzo’s House. As you listen to the voices of Diana, Patti, and the youth ambassadors, you'll discover how Lorenzo's House is more than a care model—it's a movement. A movement that's redefining what it means to live with younger-onset dementia, one story, one connection, one moment of joy at a time.
In our opening conversation, you’ll hear Diana share with the youth how much their voice means to us- here is my interview with Lorenzo’s House. Thank you, to all of my guests at Lorenzo's House for entrusting me to share your story. It's an honor.
Learn more at https://lorenzoshouse.org/
*Please register today for their free virtual event on Tuesday, November 28th from 6-7:30 pm CT. Join them and be inspired by the voices of our Lorenzo's House community! Register HERE!
Listen to our episode HERE.
Lorenzo's House shares about:
Understanding Younger-Onset Dementia: Exploring the complexities of dementia affecting individuals under 65, challenging common perceptions about who the disease affects.
The Whole Family Diagnosis: Delving into how a diagnosis of younger-onset dementia extends beyond the individual to the entire family, affecting dynamics, roles, and future planning.
Youth as Navigators and Storytellers: Highlighting the experiences of young family members (ages 9, 15, and 27) who serve as both guides and witnesses to the evolving story of dementia within their family.
Support Systems for All Ages: Discussing the importance of age-appropriate support mechanisms for family members dealing with the impacts of dementia.
Coping and Resilience: Sharing strategies and personal stories of resilience from families who are adjusting to life with younger-onset dementia, focusing on maintaining relationships and quality of life.
Action and Advocacy: Encouraging conversation about how to advocate for more resources and better understanding of younger-onset dementia, emphasizing the importance of community, research, and policy support.
About Diana Shulla Cose & Lorenzo's House
Diana Shulla Cose
Founding Executive Director, Lorenzo’s House
In 2021 Diana founded Lorenzo’s House, in honor of her husband and to support families navigating younger-onset dementia. Her family personally experienced feeling under-resourced and misunderstood as a younger family, and so she imagined a place that would fill this care and connection gap for families like her own. In just a few years, this small startup has garnered enthusiasm from experts in the field, respect from families walking this journey, and passionate interest from donors - raising $1.3M in just a few months. Diana has gathered an international Board of Directors and Innovation, Medical & Science Advisors (IMSA) to guide strategic design. She has developed partnerships and collaborations with UChicago Medicine, Yale University Arts Gallery, HFC, Youth Movement Against Alzheimer's - just to name a few.
With over 30 years of experience in education, Diana served as co-founder & president of a network of public schools in Chicago, scaling from 40 students and 2 teachers to 2,300 students and over 250 staff - across 5 schools. She co-designed an innovative experiential learning model, co-created a social, emotional & ethical competencies curriculum, culture & guidebook - earning a dissemination grant from the U.S. Department of Education and was highly skilled in building and empowering dynamic staff teams. Diana successfully served as lead fundraiser for the organization, attracting more than $50M over her 25-year tenure as president through championing campaigns and special events, designing strategic corporate and foundation partnerships, and forming meaningful relationships with individuals.
Patti LaFleur is the former care partner to her mom, Linda, who had young-onset mixed dementia and passed away in March of 2022. Patti brings a wealth of knowledge after caring for both parents, volunteering with people living with neurocognitive disorders in art classes, and serving as a community educator for the Alzheimer’s Association. Patti also has a Masters in Instructional Leadership and is a Certified Dementia Practitioner. She is a member of the Lorenzo's House team, leading their vision as their Lighthouse Outreach Lead, where she connects with families, designs and implements programming, and supports their young professional board. She shares her mom's story on social media to advocate for people living with dementia and to change the stigma around dementia.
*This episode is brought to you by Gigi Betty co. A boutique gift shop raising awareness and funds for caregivers and care partners. Show now at www.gigibettyco.com. Use the special code WILLGATHER20 for 20% off your order- Just for our podcast listeners!
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