Dementia Untangled

We talk with Stephanie Brown, LMSW, a hospice and palliative care expert, to explore the delicate and compassionate world of dementia care. She helps us untangle the differences between home health care, palliative care and hospice care, and unpack the philosophies guiding these services. She sheds light on holistic approaches to dementia care, emphasizing the importance of addressing the emotional, psychological, and physical needs of both patients and their families. Learn how to navigate these critical stages with empathy and understanding. 

We welcome back to the podcast Dr. Jeremy Pruzin, a cognitive behavioral neurologist, to explore the modifiable lifestyle factors that can significantly reduce your risk of dementia. From exercise and nutrition to sleep hygiene and mental stimulation, he shares practical, evidence-based strategies to boost cognitive health and protect against neurodegenerative diseases like Alzheimer's. Whether you're looking to improve brain function, slow cognitive decline, or take preventive steps to lower dementia risk, this episode is packed with actionable tips for a healthier brain.  

We're joined by Cyndy Luzinski, an advanced practice nurse and the executive director of Dementia Together, for an enlightening conversation about dementia care. Cyndy introduces us to the SPECAL Method, a groundbreaking approach to dementia care that focuses on person-centered care and views dementia as a simple disability, rather than a complex and intimidating condition. We explore the concept of the SPECAL Photograph Album, a tool designed to enhance understanding, as well as the Three Golden Rules of dementia care, and how caregivers can positively improve their attitudes to provide better, more compassionate care. This episode emphasizes the importance of empathy in dementia care, where feelings take precedence over facts, offering insight into how this shift in perspective can transform both caregiving and the quality of life for those living with dementia. 

In this episode, we're joined by Sarah Martin, an experienced adult geriatric nurse practitioner, to discuss how to be the best advocate for your loved one with dementia and ensure they receive the best care possible. She shares invaluable advice on how to prepare for emergency situations and why it's essential to start planning immediately after a dementia diagnosis. We dive into practical strategies for building a strong care team, reducing the risk of falls, and offering essential tips for family members to ensure their loved one receives proper care during hospitalizations. With Sarah's expert guidance, you'll gain the tools to navigate the challenges of dementia care and help your loved one maintain a higher quality of life. 

In this episode, we sit down with Dr. Nicholas Ashton, senior director of Banner Research's Fluid Biomarker Program, to dive deep into the cutting-edge world of Alzheimer's biomarker research. We explore how advancements in diagnosing Alzheimer's without directly touching the brain are revolutionizing the field. Dr. Ashton breaks down the significance of clinical symptom analysis paired with innovative biological testing methods—ushering in a new era of Alzheimer's diagnosis. Breakthrough blood tests are creating new opportunities for earlier Alzheimer's detection, expanding beyond research to everyday clinical practices. We also discuss how these innovations are accelerating the recruitment process for clinical trials, speeding up the development of new treatments. 

We connected withJim Taylor, President and CEO of Voices of Alzheimer's, to discuss his personal journey as a care partner for his wife, Geri, who has Alzheimer's disease. Jim opens up about the challenges, triumphs, and the deep emotional bond that sustains him and Geri as they cope with the complexities of a new life with Alzheimer's. He shares his powerful advocacy for reducing stigma, emphasizing the importance of telling their story, and finding ways to create a "new normal" as a couple. Jim also speaks passionately about the critical need for community support, the role of clinical trials in advancing research, and the importance of participating in efforts to find a cure. Join us for an inspiring conversation about resilience, love, and the power of collective action. 

In this milestone 100th episode, Heather and Janice take a moment to reflect on the incredible journey of the podcast over the past ten seasons. This special episode brings a heartfelt look back at the conversations, insights, and stories that have shaped the show, with guest Amber Ayers joining them for an inspiring discussion. We celebrate all the shared voices, experiences, and knowledge, and look ahead to what's next as we continue exploring, educating, and untangling the complexities of dementia in the seasons to come. 

We have a lot of questions about brain health supplements and we knew that inviting Dr. Jaclyn Robinson back to the podcast was the best way to get them answered. Join us as we delve into the latest research on substances and strategies designed to boost brain function, improve memory, and enhance focus. Dr. Robinson, a geriatrician at Banner Alzheimer's Institute, shares insights on natural and synthetic options, including the potential benefits and risks. If you're curious about brain health and preventing dementia, this episode provides valuable information and resources to help you make informed decisions.  

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. 

In the second part of our conversation with Richard Lui, a veteran journalist, filmmaker, author, and family caregiver, we untangle the challenges and joys of being a working professional while caregiving for someone with dementia. His unique perspective creates an amazing storytelling experience for listeners. His advice for caregivers, and emphasis on acknowledging your role as one, give invaluable insight for balancing and managing those responsibilities. 

In this two-part conversation with Richard Lui, a veteran journalist, filmmaker, author, and family caregiver, we first discuss his documentaries “Unconditional” and “Sky Blossom,” in which he explores real stories of caregiving and mental health. Focused on closing a cultural gap and finding joy despite difficulty, he takes us through his evolving journey to bring these stories to the world, all while exploring his own caregiving experience for his father.  

As we age, safety becomes a growing concern – not only at home, but also out in the world. Creating a safe environment while maintaining our independence can be challenging, but not impossible. We invited back Lori Nisson, a social worker for Banner Alzheimer's Institute and Banner Sun Health Research Institute, to talk about how important considerations can be made for someone with dementia whose ability to assess risk and danger decreases as the disease progresses. She helps identify the top three possible scenarios to address first when making a plan with your loved one. 

Dementia is often referred to as a “family disease” because of the effect it has on not only the person living with it, but also the people who care for and about them. As the disease progresses, relationships and family dynamics can change. We connected with Dr. R. Amanda Cooper, a family communication researcher and an assistant professor at the University of Connecticut, to discuss this further. Through her research, she was able to identify four main stages of relational changes on the dementia journey and in turn, learn how to better manage them. 

The progression of dementia changes a lot in our day-to-day lives, but one of the most complicated affected areas is arguably how we communicate. We asked Dr. Michelle James, a licensed clinical psychologist at Banner Alzheimer's Institute with specialized training in clinical neuropsychology, to help us untangle these changes and learn what we can do to be prepared for them. She explains how we formulate language in our brain and why the progression of dementia directly affects how we talk.  

Families supporting someone with younger-onset Alzheimer's disease can sometimes feel isolated because of the lack of resources and support within their community. After her husband Lorenzo was diagnosed, our guest Diana Shula Cose, the founding executive director of Lorenzo's House, wanted to change that for all families on this younger-onset dementia journey. She discusses how she was inspired by children impacted by this experience and uses the youth as a compass to guide the group's mission. She works to use connecting stories to bring about healing, empathy, and fight isolation. 

As researchers push to find a cure for Alzheimer's disease, there are lots of new and exciting discoveries and drug approvals being made. We enlisted Dr. Parichita Choudhury, a cognitive neurologist at Banner Sun Health Research Institute, to answer some of our most-requested questions about what all of this means. She untangles the latest drug trial results, what the names of these drugs mean, and how healthcare systems implement the use of these breakthrough treatments. 

Inspired by his own experience with a movement disorder, Dr. David Shprecher, a neurologist and director of movement disorders at Banner Sun Health Research Institute, shares with us his passion for serving the dementia community and more specifically, those diagnosed with Parkinson's disease dementia. With about 50% of people diagnosed with Parkinson's developing dementia, concern is high for this population. Experts are working to determine what can be done to identify these changes early. Dr. Shprecher helps us untangle the unique aspects of this disease, as well as define characteristics that differentiate it from Alzheimer's disease. We also discuss how to care for your loved one on this journey. 

Season 8 has been full of inspirational storytellers and advocates for the dementia community. 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. 

The reactions of someone with dementia to certain situations may prove difficult for caregivers to appropriately respond. Psychologist and chief clinical officer of Taproot, Dr. Linda Buscemi, helps us untangle these situations of resistance and offers a technological solution that is like having a psychologist in your pocket. She explains her company's app “Ella,” and how it uses artificial intelligence to deliver a person-centered approach to care with non-pharmacological solutions. 

With the majority of older Americans desiring to age in place, it becomes challenging as dementia progresses to remain at home – especially if you live alone. We wanted to find out more about successful independent living with dementia, so we turned to Harbhajan Khalsa, the Dementia Capable Southern Arizona Program director. We talk about the negative effects of social isolation, how to encourage your local community to become “dementia friendly,” and what supportive resources are available to people on the dementia journey. 

Men are less likely to participate in Alzheimer's research and seek a diagnosis. This lack of representation extends more specifically to Black men. We enlisted Dr. Robert W. Turner II, an assistant professor at the George Washington University School of Medicine and Health Sciences, to help us answer questions about why these conversations are so important to have. We also discuss how to create a supportive community for men to talk about brain health and get involved in research. 

Managing the healthcare of older adults, especially those with dementia, requires a different approach. We connected with Dr. Nimit Agarwal, an associate professor and Chief of Geriatric Medicine at University of Arizona College of Medicine-Phoenix to talk to him about a “new philosophy” that physicians and healthcare workers are learning in age-friendly hospitals. The initiative is driven by focusing on treating the disease and connecting on what matters to the patient, focusing on the individual. 

Would you want to know if you have a higher risk of developing dementia? We asked Jamie Tyrone, an author, patient advocate, and research participant to share her personal journey of discovering her genetic status after being wrongly diagnosed with a life-altering disease. Her experience has driven her to not only become a research participant, but also to share her story in her book, “Fighting for My Life: How to Thrive in the Shadow of Alzheimer's.” Her story is inspirational and informative for anyone interested in dementia research and personal advocacy. 

Mind/body awareness can be a very powerful approach to achieving a healthy lifestyle. It can even have a positive effect on our cognitive abilities, according to Dr. Helen Lavretsky, a professor of psychiatry at UCLA. She joins us to discuss the benefits of mindful practices like yoga for people with dementia and dementia caregivers, and the different types of yoga. She also shares info about her ongoing studies to better understand the positive role yoga plays in overall health. 

The term “caregiver” can be interpreted in so many ways, so it's not always easy to accept the label. We wanted to dive deeper into the caregiver perspective, so we enlisted Licensed Clinical Social Worker Gerrie Jakobs from Banner Alzheimer's Institute. She shares with us the importance of identifying your role(s) to better navigate the journey - and preserve your own health - by using practical strategies to ask for help and focus on self-care. 

Men's and women's health issues can be very different from one another, but does that apply to our brains? We untangle this complicated topic with Dr. Geidy Serrano, director of the Neuropathology Lab at the Brain & Body Donation Program at Banner Sun Health Research Institute. We explore how dementia affects our brains differently depending on our biological sex, and how recent studies have exposed new information about the effects of longevity and hormonal changes on our chances of developing dementia. 

Everyone's dementia caregiving journey looks different, which means everyone has a unique story to tell. We explore Jacquelyn Revere's story as a dementia caregiver influencer who created “Mom of my Mom,” a platform that has allowed her to share her story with over a million followers across social media. She takes us through her story as a millennial caregiver who found an outlet for her passion to share what it was like to care for her mom and grandmother, while finding another side of herself in the process. 

Season 7 has been full of amazing stories and perspectives about the dementia journey and beyond. Our hosts with special guest, Amber Ayers, discuss which episodes surprised them, which ones they felt a connection with, and what they took away from the entire season. Listen in for their unique personal experiences with our guests and discover what inspires future seasons of the podcast.

Over half of all people with dementia never get a diagnosis. We untangle this issue with Dr. Parichita Choudhury, a Cognitive Neurologist at Banner Sun Health Research Institute, and discover why seeking a diagnosis is so important and how to proceed. She shares a little about the future of diagnosing and how much easier it will be to identify numerous brain dysfunctions and help people live a higher quality of life with dementia.  

Stimulating our senses like smell, sight, touch, sound, and taste can access memories locked away in our brains from years ago. We explore the power of olfactory stimulation with Dr. Jennifer Stelter, a clinical psychologist and creator of the Dementia Connection model, and how it can be used as a non-pharmacological approach to care. She explains how things like essential oils and touch can help caregivers to modify unwanted behaviors and create a supportive environment for their loved one. 

Heart health and brain health are often linked together, and damage can come to both of these areas due to build-up of plaques. To better define the difference between the two, we talk to Dr. Craig Weinkauf, a Vascular Surgeon and Immunologist at the University of Arizona. He warns us of the effects of Carotid Artery Disease on brain health, and how his collaborative research hopes to help us better understand the connection between heart health and dementia. 

The importance of enriching activities in our daily lives cannot be understated, but it can be challenging to find appropriate activities for your loved one with dementia. We talk to Missy Paschke-Wood, the Community Life Director at Hacienda at the Canyon in Tucson, about her passion of connecting the arts to the dementia community and how people can thrive with the appropriate stimulation and support. She shares her creative ideas for projects you can do at home, or ways to get out in the community and explore. 

Dementia is the most significant health issue for aging adults with down syndrome. Professor of Medicine and Director of University of Pittsburgh Adult Down Syndrome Center, Dr. Peter Bulova, helps us untangle the common brain concerns between down syndrome and dementia, how amyloid factors in, and someone with intellectual disabilities may be at higher risk for receiving a delayed diagnosis of dementia. He speaks to how his research findings can ideally be useful to people with dementia, outside of the down syndrome population. 

Everyone uses compensatory strategies in their daily lives, whether it's recognized as that or not, to help us perform tasks in an alternative manner or by using adaptive aids so that we can be more independent. Dr. Christi Belden, a Neuropsychologist at Banner Sun Health Research Institute, helps us untangle some of the top strategies to use if you are experiencing memory or thinking difficulties. She shares some of the most effective tips, tricks, and tools that we can use in daily life to make life flow for ourselves and our loved ones. 

The dementia journey often brings up the topic of advocacy - whether it's for family support, financial support, or sometimes just to get a diagnosis. Our guest, Nicole Bell, the author of What Lurks in the Woods and an entrepreneur in medical devices, shares her family's story of receiving a dementia diagnosis for her husband, and continuing to search for answers. Her honest portrayal of her caregiving journey is inspiring and educational, and her storytelling abilities will draw you into her unique experience. 

Quality rest isn't always easy to make a priority, especially when you are experiencing stress, loss, or overexertion. We talk with Dr. Joyce Lee-Iannotti, a sleep and stroke neurologist at Banner - University Medical Center Phoenix, about the importance of good sleep and the benefit for your brain. She highlights the importance of leveraging simple things on our own that can help reduce the risk of dementia as diagnosis rates continue to climb. At the top of her list: quality and quantity of sleep. 

Dementia caregivers often have complicated feelings around grief and loss throughout the dementia journey. We talk with Mary-Frances O'Connor, Associate Professor of Psychology at the University of Arizona and author of The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, about emotions and changes that come with grief. She talks us through the scientific process of understanding how our brains process grief and why we experience it, what can trigger painful emotions and sensitivities, and why it's important for us to acknowledge our expression of it. 

Each season we dive deeper into the dementia journey to untangle new perspectives, connections, and explanations for caregivers and the community. Season six blew away our expectations with passionate and informative conversations you won't want to miss. Heather, Janice, and Amber talk about some of the moments that really resonated with them, and what chats inspired them to take action.

The number of people diagnosed with dementia is far outpacing the number of specialists in the field. With more than 10 million new diagnoses each year, experts are getting creative on how to provide the best level of care to patients and their families. This week's guest is Carrie Langford, a Licensed Master Social Worker at Banner Sun Health Research Institute. She shares the creative approach she and her team have taken through Dementia Care Partners. The program strategically partners with primary care offices to provide those patients living with dementia resources, education, and skills training to family caregivers. By leveraging Health Coaches, the program can leave the clinical care to the physician but help with day-to-day concerns and provide support strategies at home, which have shown to reduce some caregiving burden and cost of health care.

The idea of marijuana being used for medical purposes has a storied past. As it becomes legal in more states, the stigma around it is being reduced and more are considering the applications to medical conditions. In this episode, Dr. Danielle Goldfarb, a double board-certified neurologist and psychiatrist at Banner Sun Health Research Institute, answers all our questions about marijuana. She even untangles possible benefits for those with dementia by reducing agitation and addressing other related issues.

Time and time again, we've heard how much of an impact music can have on our brains, so we're talking to Dr. Michael Thaut, a professor in the faculty of music and the faculty of medicine at University of Toronto, to learn more about improving our brain plasticity and cognitive performance by listening to our favorite music. Dr. Thaut untangles the science behind this method and shares with us his experience as a professional musician and how it crossed with his passion for brain processes that are connected to music to help people with dementia and their quality of life. We learn how music-based interventions can retrain some brain function and support neurodevelopmental brain function.

Creating a safe environment for someone with dementia is a top priority, especially when your loved one wishes to stay in their own home while they can. Jennifer Reeder, LCSW, the Director of Education and Social Services at Alzheimer's Foundation of America helps us identify simple, helpful ways to make your home more dementia-friendly. She shares some key elements to be mindful of that make it easier for someone living with dementia to stay safe and comfortable as their cognition declines.