Dementia Untangled

In this heartfelt episode, we sit down with Jan Riggs, a dedicated caregiver navigating the transitions of caring for her husband, who is in the late stages of Lewy Body Dementia. Jan shares her deeply personal journey, offering insights into the emotional and practical aspects of caring for someone with advanced-stage dementia. She opens up about the joys and struggles of maintaining connection, prioritizing quality of life, managing her changing role, and finding resources in the community. Whether you're a caregiver, a loved one, or simply curious about the realities of dementia care, Jan's story is sure to resonate.  

At just 16 years old, Jaelyn Smith, a daughter and advocate, has been a pillar of support for her mom and dad, demonstrating incredible maturity and strength as she helps her dad manage the challenges of younger onset dementia. This journey, while deeply rewarding, also brings unique challenges and emotional struggles that many young caregivers face. She was able to find support through an online network that has given her the opportunity to shine a light on her dad’s disease and make connections across the country with other youth caregivers. 

Dementia can lead to a host of cognitive challenges, including disorientation and confusion. Among these symptoms, delusions—false beliefs that are strongly held despite evidence to the contrary—are particularly distressing for both the person diagnosed and their loved ones. We welcome Dr. Alvin Burstein, a psychiatrist renowned for his work in dementia care and mental health, to help us explore the complex interplay between dementia and delusions. Whether you’re a caregiver, a family member, or simply curious about the intersections of mental health and cognitive disorders, this episode promises to provide valuable perspectives and practical advice. 

Becoming a caregiver to someone with dementia isn’t always a smooth, planned process. Sometimes strained dynamics in a care relationship can be difficult to overcome, so we connected with Dr. Sheri L. Yarbrough, a former policy analyst turned family caregiver, to learn more about navigating this. She talks about her experience with her mother and offers her three lessons for caregivers, reminding us that “you may not have a choice in what you are experiencing, but you do have a choice in how you live the experience.” 

When Charnele Brown’s mom was diagnosed with Alzheimer’s disease, Charnele knew that as an actress, director and producer at the height of her career, she had a decision to make. Choosing to be her mother’s caregiver to ensure her comfort and happiness became her new priority, and like so many other caregivers, it consumed her. After her time caring for her mom, she chose to channel her experience into her play, “For All We Know,” sharing her stories and lessons learned about the journey and herself while ensuring others that they are not alone.  

Physical activity not only helps improve mood, increase energy levels, and decrease depression and anxiety, but could it be the most transformative thing you can do for brain health? After feeling the need to add more physical activity in her own life, Dr. Wendy Suzuki, dean of the College of Arts & Science at New York University, became interested in how powerful exercise could be for people with all levels of cognition. We explore the science behind her findings and how her personal experience inspires her to help us make our brains “fat and fluffy,” to stay as cognitively healthy for as long as we can. 

Exploring socioeconomic, environmental, and cultural effects on a person’s health can help us identify some of the contributing factors to what ails us. We investigate this topic further with medical anthropologist and Professor Emeritus at the University of Minnesota Medical School, Dr. J. Neil Henderson, to learn more about connecting non-biological factors like stress to dementia and other diseases, as well as cultural perspective on aging and cognitive changes. We learn about health disparities in Native Americans, and how Dr. Henderson has helped create culturally relevant resources for family caregivers across the country. 

Join us for an inspiring conversation from life partners on a shared dementia journey, Leonard Chayrez and Mark Garrity. When Leonard was diagnosed with early onset Alzheimer’s, the process was so long that once he had an answer about his health issues, he was ready to empower himself and get active in the community. Their experience led them to become local and national advocates for people living with dementia and their care partners, and led Leonard and Mark to embrace their decision to live social, enriched, happy lives. 

Season 9 has revealed interesting themes along with inspirational and educational stories. Our hosts with special guest Amber Ayers once again discuss which episodes surprised them, which ones they felt a connection with, and what they took away from the entire season. Don’t miss this special revisited episode to gain insight into what made this season so unique, and which surprises you will have to revisit for yourself. 

When Kathy Norris-Wilhelm's wife, Jean, was diagnosed with mild cognitive impairment, they knew how vital connecting with the dementia community would be for them to find their way. Kathy quickly became an Alzheimer’s ambassador and advocate, discovering the importance of building their own community of support and publicly sharing their story to raise awareness. Her inspirational story continues in her advocacy work as she honors Jean’s legacy.