When Siân Jarrett’s husband, Hugh Lambert, began to lose his ability to communicate, she witnessed firsthand the heartbreak of watching someone you love slowly slip beyond words.
“He was still there, the same person, but he just couldn’t express himself anymore,” she shared. “It was devastating. You feel so helpless.”
Hugh had been intelligent, articulate and deeply engaged with the world around him. A healthy and active person he changed careers going from working in an office to becoming a firefighter. As Siân talked about him, it became apparent that Hugh lived a life full of conversation and connection. But with a diagnosis of frontal temporal dementia in 2015 at the age of 57, his and Siân’s lives changed forever. As his carer, Sâan saw the isolating toll of the illness and the glaring gaps in the system meant to support them.
“There’s just not enough available for people in this situation,” she said. “It’s hard enough dealing with the disease itself, but then to have nowhere to turn - it’s heartbreaking.”
Siân continued to be Hugh’s carer while also working part-time as a flight attendant. Hugh’s demise due to his illness was rapid and sadly he passed away in 2017. “He died at home, which was my one thing,” Siân said. “I knew he would never want to be taken into anywhere for care.”
After Hugh’s death, Siân began to reflect on how she might honour his memory in a way that truly reflected who he was. “I thought, what would Hugh have wanted? What mattered to him?”
Research that resonates
Hugh had been a student at the University of Sydney and continued to have a strong affiliation during his adult life with the work being done there.
That’s when Sian came across the work being done at the University of Sydney’s Brain and Mind Centre (BMC). “The Brain and Mind Centre were doing the sort of research I thought Hugh would want to support.”
Determined to help others navigating the same journey, she chose to direct her gift to the work of speech pathologist Dr Penelope Monroe (MSLP '18, PhD '23) and the clinic supporting people with Primary Progressive Aphasia (PPA), a form of frontotemporal dementia that progressively impairs language.
“Supporting this work just felt like the right thing to do,” Siân said. “It felt like the right way to honour him and help others.”
Hugh Lambert after his diagnosis, on campus at University of Sydney. Photo: Supplied by Siân Jarrett.
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LinkPhilanthropy lets you start from the ground up - listening to families, understanding what’s needed, and building services that actually work.
Dr Penelope Monroe (MSLP '18, PhD '23)
Her ongoing gifts have been instrumental in supporting Dr Penny Monroe’s work at the PPA Communication Project which was originally established by Professor Kirrie Ballard as a student-led clinic during the COVID pandemic. Professor Ballard continues to serve as the clinic director.
Dr Monroe works directly with individuals diagnosed with PPA, providing intensive, long-term therapy - an approach rarely available in community care.
“People with neurodegenerative communication impairments are woefully underserved,” Dr Monroe said. “There’s still this outdated idea that because they’re deteriorating, there’s no point intervening. But we know that’s not true.”
She explains that people with PPA are often excluded from support services, despite research showing that maintaining communication can significantly improve quality of life and even slow deterioration.
“Our job is to keep people communicating as long as they can,” she said. “And that means not just working with the person diagnosed, but with their family and social system too. Communication is relational — it doesn't happen in isolation.”
A clinic built on empathy and philanthropy
Unlike standard public health models, which often offer brief interventions, Dr Monroe’s clinic provides sustained, adaptive support over time. Her ability to do this has only been made possible through philanthropy.
“It allows us to do work the health system just doesn’t support - not because it isn’t needed, but because it doesn’t fit into existing structures."
Dr Monroe has been able to work intensively with families, adjusting therapy as symptoms evolve and helping both individuals and carers adapt. One part of that work involves addressing anticipatory grief and what she calls “ambiguous loss” — a unique emotional toll experienced by those watching a loved one change before their eyes.
“Our work sits in this grey area,” Dr Monroe explained. “It’s about communication, yes, but also about helping people come to terms with what’s happening. When people lose language, they can lose a sense of who they are. Our role is to help them adapt and hold on to their identity.”
A ripple effect of impact
The clinic’s reach extends far beyond therapy. Dr Monroe’s role has become a bridge between care and research. Her sessions with clients help to build protocols for future studies, providing a model of care that can be replicated more broadly. Philanthropy, she said, made this possible in a way traditional research funding could not.
“You can’t get funding to build a project until you’ve already proven its value,” Dr Monroe explained. “Philanthropy lets you start from the ground up - listening to families, understanding what’s needed, and building services that actually work.”
For Siân, the impact of her giving has been deeply personal, but she hopes it’s also a message to others.
“I think people often feel like they can’t contribute unless they have a huge amount of money,” she said. “But even a modest gift can make a profound difference.”
As Dr Monroe puts it: “When you can’t speak, people assume you’re no longer there. But they are. They’re still themselves. They just need a different way to be heard.”
Hero image: Hugh Lambert and Siân Jarrett about 20 years ago. Photo supplied by Siân Jarrett.