Emma Heming Willis, the wife of actor Bruce Willis, is using her YouTube channel to raise awareness about frontotemporal dementia (FTD) and celebrate the people who have supported her family on their FTD journey since Bruce’s diagnosis. Emma shared the news of Bruce’s FTD diagnosis in February and has been actively highlighting the disease on her channel during World FTD Awareness Week (September 24 – October 8).
In a recent episode of her Make Time to Connect series titled “Celebrate,” Emma interviewed the founders of the podcast “Remember Me,” Maria Kent Beers and Rachael Martinez. Both Beers and Martinez are caregivers who took care of a parent with FTD while also being moms of young children.
Emma Heming Willis explained that she discovered the “Remember Me” podcast during the challenging period when they learned about Bruce’s condition. She mentioned that there was not a lot of information available about FTD at that time, but the podcast provided a valuable source of support by allowing her to hear other people’s stories and experiences, as she was ‘freaked out’ after discovering Willis had dementia.
The “Remember Me” podcast, initiated by Martinez and Kent Beers in August 2020, provides a platform for caregivers and family members to share their stories about loved ones with FTD. The podcast aims to remember individuals for who they were before the disease and to create a space for connection and understanding.
Kent Beers expressed the importance of remembering individuals affected by FTD for who they truly were before the disease robbed them of their identity. FTD is known for changing a person’s behavior, personality, and cognitive abilities, making it challenging for caregivers to witness the transformation.
Rachael Martinez emphasized the podcast’s goal of bridging the gap between the medical and scientific community and individuals affected by FTD. They want to make the FTD journey more comfortable and filled with connections for caregivers and families.
Emma Heming Willis thanked Beers and Martinez for their podcast, emphasizing the invaluable support and connections she has found through it. She noted that FTD is a condition that levels the playing field, and connecting with others who understand the challenges without needing extensive explanations has been a lifeline for her.
The heart of this podcast is to remember people for who they were before this awfulness,” says Kent Beers, who lost her mother, Lia, to the disease in December 2020, “One thing people do not understand about FTD – it literally robs people of who they truly are. It’s very hard when you are caregiving every day and you’re seeing this different version affected by FTD. Sometimes it’s hard to remember what they were like before. So that’s the best way to celebrate them. Let’s talk about who they really truly are, not what FTD turned them into.”
Martinez, whose father died of FTD in November 2020, says the goal of their podcast is “to bridge the gap between the medical and science community and people. We want to make this journey as comfortable and as full of connection as possible.”
Bruce Willis was diagnosed with frontotemporal dementia, a rare and progressive neurodegenerative disease that affects behavior, language, and decision-making. Emma Heming Willis has been actively sharing their journey and advocating for FTD awareness to help others going through similar experiences.