Understanding Younger-Onset Dementia: An Interview with Lorenzo’s House on Supporting Families

An interview with Grania Mckittrick of Lorenzo's House

Welcome to this special edition of the Simon Cares blog! Daniel Brown, CEO and Founder of Simon, spoke with Grania Mckittrick, the Global Outreach Lead at Lorenzo's House, a global virtual organization supporting families affected by younger-onset dementia (showing symptoms before age 65).

Daniel Brown (DB): Thank you so much for sitting down with me today, Grania. Before jumping into your work, could you tell us about younger-onset dementia (YOD)?

Grania Mckittrick (GM): At Lorenzo's House, we define younger-onset dementia as someone who shows symptoms of dementia before the age of 65.

The stigma is so thick for families from the point of showing symptoms. Our families often come to us after having a multi-year, multi-doctor, and multi-diagnosis journey. Younger-onset dementia comes in many different forms, including younger-onset Alzheimer’s disease, frontotemporal dementia, Lewy body dementia, vascular dementia, and many more. Although it is considered “rare,” more than 28 million family members are navigating younger-onset dementia worldwide. Younger-onset dementia is a diagnosis of the family, and its impact extends beyond the person living with the diagnosis to spouses and children as well.

Part of the stigma is also individual denial when the word dementia comes in. This is because of the stigma around how society thinks about, experiences, and responds to dementia. We want to shift this narrative and bring a bit of light to all those navigating this journey.

DB: That multi-year, multi-doctor, multi-diagnosis story is quite common in dementia, but with YOD I could see that being infuriating and discouraging and multiplying exponentially. There must be a huge need for your education and advocacy work around this.

GM: Exactly. And not just with the general public.

From an education perspective, we need to better educate neurologists, social workers, researchers, and other professionals, and our families with lived experience have critical wisdom to share in that education. Too often, people who begin showing symptoms are misdiagnosed with depression or menopause before younger-onset dementia is even considered. This can extend years of misdiagnosis and creates a ripple effect, delaying access to support and, in some cases, disease-modifying treatments.

Because dementia is too often considered just an older person’s condition, families affected by YOD are frequently left in the shadows, excluded from or denied access to traditional dementia support systems, particularly children and youth. YOD often happens while a family is still at the height of their careers and has life-changing physical, financial, and mental health implications.

DB: I can’t imagine. And particularly when people aren’t at an age to think about retirement or the future in that way. As with other dementias, I’m sure the transition for family members from romantic partner or child to care partner is quite difficult.

GM: This is such a real subject, and dementia changes relationships in many different ways, either bringing people closer together or further apart. The transition from loving to caring is real.

At Lorenzo's House, our adult groups and clubs offer spaces where questions are always welcome and there is no judgment. Our adult spaces, including our male care partner group, have developed a subgroup to open up conversations around love and dating, because this is often taboo, especially with younger-onset dementia.

We want to ensure that these taboo subjects and the stigma around relationships and dating have a space to be discussed. Knowing there is someone else who understands the journey you are walking, the challenges you are navigating, and can possibly offer advice from lived experience is the space we want to create.

DB: Absolutely, and that community is so important. Thank you for bringing us into your work. Could you tell us more about Lorenzo’s House and what drives you to do this every day?

GM: Lorenzo's House is a global virtual organization. We formally describe our mission through three things: we heal in community, we advocate for dementia justice, and we educate for a younger-onset dementia-informed society.

Within our healing work, we have our direct support programs:

• MATCH: Our one-on-one carer-to-carer connection that pairs individuals with a peer of a similar profile. When a family member walks through our virtual doors, they are met with what we call a Lighthouse, a trained volunteer, often with lived experience, who welcomes them into our virtual home. They are then matched with someone navigating a similar journey, whether through texts, Zoom calls, or even in-person meetups.

  
  

• CLUBS: Monthly virtual group support spaces for sons, daughters, and children who have a parent living with or who has lived with younger-onset dementia, offering connection and shared understanding.

  
  

  • Adult Spaces: Including Bright Brunch for female adult care partners and spouses, and Light Lounge for male adult care partners and spouses of a person living with younger-onset dementia. These virtual spaces are designed to foster understanding, shared stories, exchanged resources, and reduced isolation.

    
    

  • ShineOn: A group for those whose parent or partner has passed after living with younger-onset dementia, focused on connection, community, and healthy expressions of grief and loss.

    
    

• SUMMIT: Our global virtual annual event exclusively for sons, daughters, and children who have a parent living with or who has lived with younger-onset dementia. In 2021, 21 young people met in a Zoom room. In 2025, we welcomed over 250 participants from 16 countries.

  
  

• NEXTGEN: Our global advocacy movement built by our community for sons, daughters, and children, alongside passionate allies, to raise awareness, end stigma, and inform policy around younger-onset dementia.

  
  

• Our education piece is our Light Academy that is coming out in 2027.

  
  

My “why” is personal. I was introduced to younger-onset dementia through my amazing partner, Will, who supports his mom, Ronnie. Ronnie was diagnosed when Will was 16 and she was 49. Will’s sister was 19 at the time when she became Ronnie’s primary care partner. The unique hope, love, and challenges of this journey made me say “yes” every day to Lorenzo’s House and our mission.

DB: Thank you for sharing that personal side, Grania. Lorenzo’s House is doing such meaningful work. Within your healing community, what do you think people are looking for when they join?

GM: It comes down to the unique challenges of younger-onset dementia and the stigma that surrounds families. With this diagnosis often comes isolation.

Our founding executive director, Diana, shared that when she was walking this journey with her family, she “knew no one who was like her, young, with younger children, navigating dementia.” Lorenzo’s House was founded on the belief that we could build a global community that shines light on this journey, one that understands. We want to ensure that every family navigating YOD has access to a community walking beside them at every stage.

Younger-onset dementia lives in the shadows, and there is still deep stigma around dementia only affecting older adults. We are working to create a global movement of advocacy to dismantle this stigma and make this the first generation where dementia is met, 'without silence, shame, or invisibility.' We currently have over 200 global members in our NEXTGEN movement, having launched only in July 2025.

DB: Lorenzo’s House unapologetically puts light at the front of its mission. It is such a beautiful contrast to so much of the darkness and doom and gloom others rely on to talk about dementia. Could you tell me more about the light that you want to bring into this journey? Could you give me some examples or some stories around that?

GM: Our tagline is "We Bring Light." This journey carries a lot of darkness and isolation, so we hope that even one connection or one shared story can bring a slight bit of light into our families' lives. For example, a few years ago a young person joined our ‘Light Clubs’ (monthly groups) and wasn't very involved, but with some time, he became the most incredible MC at our Youth Summit for 250 young people. To see his confidence, growth, and leadership speaks to the testament of our mission to empower sons, daughters, children and families of YOD.

There is also my partner, Will, who initially didn’t want to talk about his mother’s diagnosis. Today, his career revolves around dementia advocacy, and he is completing a fellowship at the Global Brain Health Institute at Trinity College Dublin.

Last year, we also had a 17-year-old serve as the youngest panelist at the Milken Institute Future of Health Summit, telling her story alongside CEOs and experts.

DB: That is beautiful, Grania. This work is so personal, and I love how much you all lean into that. Do you have any final thoughts or calls to action for our audience?

GM: I’ll leave you with three calls to action:

1. Connect us to families always. If you know of a family or hear of a family, please know that they have a global community out there that is here for them as and when they are ready. Our virtual door is always open.

2. Join our NEXTGEN movement. If you care about dementia, this movement is for you, and you can grow it with us.

3. Advocate. If you are aware of younger-onset dementia, advocate and raise awareness, because as a society we need to dismantle the stigma and inform policy to truly build a younger-onset dementia informed society.

   
   

DB: Thank you so much, Grania, and a big thank you to Lorenzo’s House for sitting down with us.

Readers are always welcome to respond with questions, comments, feedback, or stories to share. At Simon, we are always open to learning alongside our community.

Lorenzo's House empowers young people and their families walking with younger-onset dementia through an array of holistic support- shifting the narrative from isolation to connection, stigma to strength and darkness to light.

Whether you’re just beginning this journey or already deep in it, you don’t have to figure it out alone. Download the Simon App or Join our community of Simon App Testers.