Spotlight on Care: Alzheimer's Caregiving

Steve and Virginia sit down with Andrea Hughes, a dedicated caregiver whose mother was diagnosed with early-onset Alzheimer's Disease. Featured in the PBS documentary Matter of Mind: My Alzheimer's, Andrea shares her personal journey navigating the challenges of caregiving at a young age, balancing work and family responsibilities, and finding strength through community and storytelling. To learn more, visit the PBS documentary page, follow Andrea on Instagram @itsandreakrystal, and explore her work at candidcaregiverscollective.com.

Steve and Virginia explore the vital role that geriatricians play in diagnosing and managing dementia and other cognitive symptoms in older adults. The co-hosts are joined by Valerie George, a certified physician assistant with UCI Health, and Sonia Sehgal, MD, a board-certified geriatrician and internist with UCI Health, who discuss how geriatric care should take a whole-person approach—addressing cognitive impairment, chronic conditions, and social factors while actively involving caregivers. Valerie and Dr. Sehgal explain the difference between geriatricians and gerontologists, share their experiences supporting families, and highlight the benefits of seeking an early diagnosis and team-based care. Together, they emphasize the importance of compassionate, proactive support for both patients and caregivers throughout the aging journey.

In this episode, Steve and Virginia explore the emotional and practical differences between caring for a parent versus a spouse with dementia. Virginia emphasizes the role reversal and challenges of managing her mother's daily needs and finances, while Steve opens up about the loss of companionship and adapting intimacy in his relationship with his wife, Patty. They discuss the importance of communication with family members, the struggle of accepting help, and the emotional weight of caregiving tasks. Their conversation highlights the complexities of long-term caregiving and the importance of maintaining connection, patience, and open dialogue throughout the journey.

Virginia and Steve are joined by Ruth Ann Rousseau, a caregiver and support group leader, to discuss the vital role that support groups play for dementia caregivers. Ruth Ann highlights how these groups provide resources, confidence, and community while addressing the challenges of participation. She compares online and in-person meetings and encourages caregivers to seek support, stay open to learning, and prioritize self-care. The discussion concludes with a reminder to persist in finding the right support system and advocating for personal well-being.

In this episode of Spotlight on Care, Steve and Virginia explore the complex and often distressing experience of delusions in dementia with David Sultzer, MD, the Clinical Research Director at UCI MIND and professor of Psychiatry & Human Behavior. Dr. Sultzer explains how and when delusions, such as paranoia and misidentification, develop in individuals with dementia and the impact they have on caregivers. He discusses practical approaches for managing these false beliefs, including reassurance, environmental adjustments, and structured routines. The conversation also covers available medications that may help prevent or reduce delusions, along with its potential risks. Resource: What Are Delusions? These false beliefs can be a symptom of delusional disorder or another condition by Amy Morin, LCSW; Medically reviewed by Steven Gans, MDhttps://www.verywellmind.com/definition-of-delusion-4580458docdd

Virginia and Steve discuss the legal concerns that arise after a dementia diagnosis with Orange County probate attorney, Stephen Magro, JD, who has 30 years of experience in elder law.  Mr. Magro outlines the legal steps needed to help protect loved ones with dementia including setting up a will and trust and establishing an advanced health care directive.  For more information about Stephen Magro's law firm, visit www.smagrolaw.com. What would like to hear about next? Email us at mwitbrac@uci.edu.

Co-hosts Virginia and Steve are joined by Renée Brown Harmon, MD, a retired family physician, who shares her eight-year journey as a caregiver for her husband, Harvey, diagnosed with early-onset Alzheimer's at age 49. Dr. Harmon discusses the challenges of caregiving, the stages and types of grief, and the coping strategies she used. She also highlights the emotional and physical toll caregiving can take. Her book, Surfing the Waves of Alzheimer's: Principles of Caregiving that Kept Me Upright, provides practical guidance and emphasizes the importance of accurate information, community, and self-care for caregivers.Renée's website can also be found here: https://www.reneeharmon.com/about/

In this episode of Spotlight on Care, co-hosts Steve and Virginia are joined once again by caregiving expert Pamela D. Wilson to discuss the challenges adult children face when caring for parents who were absent, abusive, or neglectful. They explore emotional struggles, complicated family dynamics, the importance of setting boundaries, and the question of whether total forgiveness is necessary. Pamela also provides practical advice on navigating these difficult caregiving situations and emphasizes the importance of prioritizing your own well-being.Social MediaYouTube Channelhttps://www.youtube.com/c/PamelaDWilsonCaregivingExpertFacebookhttps://www.facebook.com/pameladwilsoncaregivingexpert/Twitterhttps://twitter.com/CaregivingSpeakFacebookhttps://www.facebook.com/pameladwilsoncaregivingexpert/Website, Consultations, Free Online Programs, Speaking, & PodcastWebsitehttps://pameladwilson.com/Pamela D Wilson Eldercare Consultanthttps://pameladwilson.com/elder-care-consultant-aging-parent-consultation-managing-senior-care-needs-meet-with-pamela-d-wilson/Caring for Aging Parents Online Programhttps://pameladwilson.com/support-caring-for-elderly-parents-overwhelmed-caregiver-support-online-course/ Power of Attorney Online Programhttps://pameladwilson.com/power-of-attorney-webinar-program/Guardianship for Aging Parents Online Programhttps://pameladwilson.com/how-to-get-guardianship-of-a-parent-obtain-legal-guardianship-online-course-pamela-d-wilson/Caregiving Speakerhttps://pameladwilson.com/caregiving-speaker-aging-parents-expert-advocate-keynotes-presentations-digital-caregiver-programs/The Caring Generation Podcasthttps://pameladwilson.com/caregiver-radio-programs-the-caring-generation/

In this episode, Diana Marquez-Siemers and Rachel Smyth from the Caregiver Resource Center (CRC) provide expert insights on the challenges and solutions for families caring for loved ones with dementia. Join Steve and Virginia as they learn about the CRC's commitment to supporting caregivers. They also discuss the development of their personalized care plans to address each caregiver's unique needs, offering coaching, training, and ongoing support to ensure quality care. With over 60% of caregivers in Southern California caring for someone with cognitive impairment, this episode highlights the importance of reaching out for help early in the caregiving journey as well as connecting with a supportive community.From the Caregiver Resource Center OC: The Caregiver Resource Center OC is a trusted partner for Orange County families, who are coping with the physical, emotional, and financial responsibilities of caregiving. By providing families with individualized supportive services, the Caregiver Resource Center stands apart as the only Orange County agency focusing exclusively on the needs of caregivers, who are coping with a loved one's chronic illness. The Caregiver Resource Center provides family consultation, support groups, assessment and care planning, counseling, respite planning and community education. Since 1988, the Caregiver Resource Center has assisted thousands of families who care for an adult with a brain-impairing condition such as Alzheimer's, stroke, Parkinson's, Multiple Sclerosis, head injury, or Huntington's disease, or for someone who is over the age of 60 and requires daily assistance. The Caregiver Resource Center works collaboratively in the community with other service providers and community providers in the aging and disability network. Services are free. For more information, call 800-543-8312 or 714-446-5030 or go to our website: www.caregiveroc.orgThe materials or product were a result of a project funded by a contract with the California Department of Aging (CDA), as allocated by the Orange County Board of Supervisors and administered by the Office on Aging. Supporting data is available by contacting Caregiver Resource Center OC at 130 W. Bastanchury Road, Fullerton, CA 92835 (714) 446-5030. The conclusions and opinions expressed may not be those of the CDA and that the publication may not be based upon or inclusive of all raw data. Services are provided free of charge. Voluntary contributions are gratefully accepted, and no one is denied for inability to contribute. 

Virginia and Steve are joined by Pamela D. Wilson, MS, BS/BA, NCG, CSA.– an international resource for caregivers with over two decades of experience in aging and caregiving– known for her consultations, advocacy, and her book, "The Caregiving Trap: Solutions for Life's Unexpected Changes," as well as her own podcast called “The Caring Generation.” Together, they discuss the challenges of caregiving for parents with dementia, where Pamela delves into common issues such as resistance to advice, navigating difficult conversations, and managing complex family dynamics. She also emphasizes the importance of involving parents in planning, setting boundaries to maintain emotional well-being, and understanding the reasons behind a parent's unwillingness to cooperate. Pamela's links to her social media and programs are provided below: Social MediaYouTube Channelhttps://www.youtube.com/c/PamelaDWilsonCaregivingExpertFacebookhttps://www.facebook.com/pameladwilsoncaregivingexpert/Twitterhttps://twitter.com/CaregivingSpeakFacebookhttps://www.facebook.com/pameladwilsoncaregivingexpert/Website, Consultations, Free Online Programs, Speaking, & PodcastWebsitehttps://pameladwilson.com/Pamela D Wilson Eldercare Consultanthttps://pameladwilson.com/elder-care-consultant-aging-parent-consultation-managing-senior-care-needs-meet-with-pamela-d-wilson/Caring for Aging Parents Online Programhttps://pameladwilson.com/support-caring-for-elderly-parents-overwhelmed-caregiver-support-online-course/ Power of Attorney Online Programhttps://pameladwilson.com/power-of-attorney-webinar-program/Guardianship for Aging Parents Online Programhttps://pameladwilson.com/how-to-get-guardianship-of-a-parent-obtain-legal-guardianship-online-course-pamela-d-wilson/Caregiving Speakerhttps://pameladwilson.com/caregiving-speaker-aging-parents-expert-advocate-keynotes-presentations-digital-caregiver-programs/The Caring Generation Podcasthttps://pameladwilson.com/caregiver-radio-programs-the-caring-generation/35th Annual Southern California Alzheimer's Disease Research Conference Join UCI MIND, Alzheimer's Orange County, and Alzheimer's Association for the 35th Annual Southern California Alzheimer's Disease Research Conference. This year's conference will highlight the incredible advances being made in the diagnosis, treatment and care for people with dementia.   For more information: https://conference.mind.uci.edu/

Virginia rejoins Steve in this concluding 2 part series on caregiving strategies. In this episode, they provide insights into activities and products that can be utilized to enhance daily living and simplify routine tasks. Tune in for valuable information that aims to elevate the day-to-day experience for both caregivers and those living with Alzheimer's and other forms of dementia.  

Steve interviews Virginia  about tips she has compiled over the years to improve the caregiving journey. Listen along as they delve into topics on healthcare visits, money matters, safety, and mood changes. This is part 1 of a 2 part series of tips and tools that can help improve quality of care for loved ones living with Alzheimer's and other forms of dementia.Mentioned Episode in Podcast with Stephen Magro, an elder law attorney, can be found here: https://www.buzzsprout.com/1589794/episodes/8946153

Virginia and Steve are joined by Nathaniel Chin, MD, a geriatrician, associate professor at the University of Wisconsin Department of Medicine, Medical Director of the Wisconsin Alzheimer's Disease Research Center, and host and creator of the popular Dementia Matters podcast.  Dr. Chin recounts how his father's Alzheimer's diagnosis and dementia journey inspired his career choice.  He discusses the importance of getting an early diagnosis, keeping records, and the critical role that caregivers play in the diagnosis and treatment of people with cognitive impairments.  Dr. Chin also describes his involvement in dementia research at the Wisconsin Alzheimer's Disease Research Center and the Wisconsin Registry for Alzheimer's Prevention.  To learn more about the Wisconsin Alzheimer's Disease Research Center and Dr. Chin's podcast visit: https://www.adrc.wisc.edu/dementia-matters

Steve and Virginia sit down with Ahmad Sajjadi, MD, PhD, associate professor of Neurology at UC Irvine and research clinician at UCI MIND, to discuss some of the recent advances that have been made in Alzheimer's disease research and care. He discusses the newly approved drugs, diagnostic tests and coverage of some of those tests, and care navigator programs. 

Steve and Virginia are joined by Dr. Michelle McDonnell, a neuropsychologist at UCI MIND, who discusses the importance of cognitive testing. She discusses the process involved in the testing, tips to encourage your loved one to participate, and the benefits of tracking Alzheimers as it progresses. 

Susan Papiri, Community Relations Director for Dignity Memorial. She discusses involving loved ones earlier regarding their wishes, preferences and religious traditions. These conversations can give honor to their legacy and reduce family stress. If you are in the Orange County/San Diego area and wish to learn more about services offered, you can call their toll-free number at (949)-622-7171

Steve and Virginia are joined by Elizabeth Lonseth, an author and caregiver, who discusses the dangers of denial in Alzheimer's caregiving. She touches on the many ways that both patients and caregivers can suffer when caregivers do not come to terms with the realities of the disease.  Elizabeth also gives listeners a few tips to help improve the caregiver journey. To learn more about Elizabeth visit https://elizabethlonsethnovels.com/

Virginia is joined by Dr. Natali Edmonds, a board certified Geropsychologist and founder of Dementia Careblazers, an online resource for dementia caregivers. Dr. Edmonds talks about 4 mistakes caregivers make when dealing with their loved ones, and the steps we can take to avoid these behaviors. You can learn more about Dr. Edmonds and Dementia Careblazers at www.careblazers.com

Virginia and Steve are joined once again by Lisa Up de Graff, one of their first guests, who gives an update on her mother's Alzheimer's disease journey. Lisa describes new challenges she has faced as the disease has progressed and recounts how she has dealt with transitioning her mother into hospice care.

Virginia is joined by Irene Olson, author of the book, “Requiem for the Status Quo'' and a state long-term care Ombudsman. Irene shares tips and challenges she faced with being a long distance caregiver for her father. She emphasizes the importance of building a strong relationship with the staff at the care facility, which in her case, allowed her to remain involved in her father's care, even at a distance. Irene Olson is a member of AlzAuthors, a 501(c)(3) charitable organization that serves as a carefully curated resource for caregivers and family members of those living with dementia. Find them at: www.alzauthors.com To purchase her book, "Requiem for the Status Quo", visit:  https://amzn.to/3rnPK8F    

Dr. Joshua Grill, PhD, is a professor at UC Irvine in the departments of Psychiatry & Human Behavior and Neurobiology and Behavior, as well as the director of UCI MIND. Dr. Grill joins Steve to discuss risk factors for Alzheimer's disease, steps people can take to lower their risk and the promising investigational therapies. He also cautions listeners about the prevalence of pseudomedicine for dementia.

Virginia and Steve are joined by Patti Davis, author of the book, Floating in The Deep End, and daughter of former United States President, Ronald Reagan. She recounts several different experiences she had while caring for her father who publicly lived with Alzheimer's disease. She also provides the listeners with sage advice she learned from her caregiver journey and from her time with Beyond Alzheimer's, a caregiver support group she started at UCLA. To learn more about Patti's experience, purchase her book, Floating in the deep end: How caregivers can see beyond Alzheimer's visit: https://www.amazon.com/Floating-Deep-End-Caregivers-Alzheimers/dp/1631497987

Dee Ransom joins Steve and Virginia to discuss some of the adjustments she has had to make being a caregiver for her husband, John, who lives with Alzheimer's disease. Dee shares her experience learning to advocate for her husband, adapting to changes in their relationship and the difficulty and hidden blessings involved in placing him in a residential facility.

Erin Light, MA, is a gerontologist and a senior administrator at Silverado Senior Living, a memory care company based in Southern California. She joins Steve and Virginia to discuss how to manage wandering in a loved one with dementia. Erin begins by giving an overview of what wandering is and provides some early signs to look out for. She also discusses what precautions caregivers should take to help keep their loved ones who wander, safe.

Steve and Virginia are joined by Lindsay Hohsfield, PhD, a neuroscientist at UCI and co-founder of a non-profit organization called Youngtimers, to discuss the role that our genes play in Alzheimer's disease. She helps the audience understand the difference between sporadic and familial Alzheimer's, early- versus late-onset Alzheimer's disease, and gives advice to those who are concerned about their genetic risk of developing the disease. To learn more about Lindsays organization, Youngtimers, please visit https://www.youngtimers.org 

Steve and Virginia are joined by Heather Kruse, a licensed RN who specializes in dementia and hospice services. Heather was the hospice nurse for Steve's wife, Patty at the time of her passing. She discusses the different services offered during hospice care and the things to keep in mind when deciding on hospice for a loved one.

Our hosts are joined today by LA Times writer Jeanette Marantos and Virginia's brother, lawyer Bob Simpson, to tell us how they knew it was time to stop their loved one with Alzheimer's Disease from driving. They share stories on the challenges they faced and the clever ways they were able to get around them. 

Jeanette Marantos joins Virginia and Steve to discuss her experiences traveling with her husband, Steven, who had Alzheimer's disease, as well as sharing her tips on making travel manageable. 

In this episode, Virginia and Steve are joined by Cindy Weinstein, Ph.D., who co-authored a book with neurologist, Dr. Bruce Miller titled, Finding the Right Words: A Story of Literature, Grief, and the Brain. Dr. Weinstein talks about the guilt and grief she dealt with after her father was diagnosed with Early-Onset Alzheimer's Disease. She describes the challenges of being away from him while in graduate school, and the different strategies she used to stay connected and to manage her sadness.

Virginia and Steve are joined by Jim Russell, MBA, PhD, who shares his emotional story of being a caregiver to his mother with Alzheimers and then to his daughter, Lynne,  who was diagnosed with early onset Alzheimer's disease at 48 years old. He describes the challenges in managing his daughter's finances and her family as the disease has progressed.   

Virginia and Steve are joined by UCI Senior Health Center physician and UCI MIND researcher, Steven Tam, M.D., who describes some of the early symptoms of cognitive impairment, and the general approach he takes when assessing a patient.   He answers questions about current treatments.  He emphasizes the importance of gathering a complete history of the patient prior to making a diagnosis. 

In this episode, Steve and Virginia are joined again by friend and caregiver, Roger Lisabeth who describes his experience in end-of-life planning while his wife Lucy is still alive. Roger emphasizes the importance of being properly prepared when the day arrives and describes some important details many of us may overlook when planning a funeral.

Mark Wilson is back with co-hosts, Virginia and Steve to share his tips on outfitting your loved one's home to be safe.  He reflects on his experience caring for his mom  who lived at home with him for the entirety of her Alzheimer's dementia journey.  Mark provides low cost solutions to many of the unique challenges that caregivers face in a home environment like protecting against hard slippery surfaces in the bathroom or curtailing wandering at night .  

Virginia and Steve speak with Dr. Galindo, who cared for her father with Alzheimer's disease and helps the listeners understand the importance of simplifying the holidays to maximize enjoyment for everyone.  She gives tips on focusing on one or two traditions and recruiting help  instead of trying to balance caregiving with all of the pressures of maintaining family traditions.  For more caregiver resources  at the holidays and throughout the year visit www.alzoc.org or call the helpline at 844-373-4400. Happy Holidays! 

The co-hosts are joined by business owner and friend, David Willke who recently lost his wife Jill to early-onset Alzheimer's disease.  David shares his experience raising his children while serving as a caregiver to his wife and the challenges he faced trying to create a normal childhood for his girls. 

Virginia and Steve are joined by Linda Abbit, an eldercare professional and caregiver with over 25 years of experience in dementia caregiving. She has authored a book called, The Conscious Caregiver: A Mindful Approach to Caring For Your Loved One Without Losing Yourself (Simon and Schuster, 2017). In this episode, the trio discuss the importance of prioritizing self-care for the caregiver, tapping in to mindfulness, how to identify burn-out, and utilizing respite care. To learn more about Linda's work visit her Facebook page at: https://www.facebook.com/TenderLovingEldercare/ If you like this episode, please rate, review, subscribe and share it with your friends. We're eager to hear topics you want us to discuss. Please email us at mwitbrac@uci.edu and let us know your thoughts. 

Virginia and Steve discuss the legal concerns that arise after a dementia diagnosis with Orange County probate attorney, Stephen Magro, JD, who has 30 years of experience in elder law.  Mr. Magro outlines the legal steps needed to help protect loved ones with dementia including setting up a will and trust and establishing an advanced health care directive.  For more information about Stephen Magro's law firm, visit www.smagrolaw.com. What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, the co-hosts sit down with Cleo Dougherty to discuss the importance of finding the right support group for patients and their caregivers.  Cleo shares her story caring for her husband, Tom who was diagnosed with Alzheimer's disease in 2006 and recalling her experience as both a member and a leader of a support group. For more information about support groups at the Alzheimer's Association, visit: https://www.alz.org/ or the Savvy Caregiver Program through Alzheimer's Orange County, visit: https://www.alzoc.org/events/savvy-caregiver/. What would like to hear about next? Email us at mwitbrac@uci.edu. 

In this episode, co-hosts Steve and Virginia have a conversation with Keith Swayne about the importance of communicating with family throughout the Alzheimer's journey.     Keith elaborates on his own process for sharing with his children and extended family about his wife, Judy's journey from diagnosis to her passing  in 2014.  What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, Virginia and Steve chat with Joe Gonzalez about tips for finding the right care facility for someone living with dementia.  Joe shares his experience caring for his wife, Barbara as he navigated the transition from caregiving at home to a memory care facility.

Roger Riley, author of the book, Lifelines: A Care Partner's Survival Guide, joins Steve and Virginia for a discussion about letting go of the past and making new memories with your loved one.  Roger gives the listeners a few tips for using hobbies and games from your past to engage your loved-one and improve everyone's quality of life.  What would like to hear about next? Email us at mwitbrac@uci.edu.

Guest Pam Ostrowski joins Virginia and Steve for a conversation about compassionate communication.  She recalls her own experience caring for her mom with Alzheimer's and relays some of the experiences that she has had with her clients as she helps them navigate dementia caregiving.   Pam emphasizes the importance of  prioritizing being happy over being right when communicating with loved ones living with dementia.  To learn more about what Pam does, visit her website at www.itsnotthatsimple.com. What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode,  Virginia Naeve and Steve O'Leary interview retired HR executive Mark Wilson, who cared for his mother with Alzheimer's disease, about in-home caregiving. He gives the listeners his expert tips on finding the right caregiving team  to support in-home care.  What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, Virginia Naeve and Steve O'Leary are joined  by husband and wife team, Don Wendorf and Lynda Everman who discuss their journeys as caregivers for their loved-ones with dementia.  They introduce the concept of Person-Centered Care  and help us understand how empathy is critical to dementia care.  What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, co-hosts Steve and Virginia interview Denny Barker about his caregiving journey with his wife, Kay.  He recalls an incident at his wife's memory care facility and the consequences that followed.  Steve and Virginia reflect on their own experiences of dealing with their loved ones' dementia induced personality changes.  What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, Virginia Naeve and Steve O'Leary interview Kim Bailey, MS, Gerontology who is the Education and Programs Specialist at Alzheimer's Orange County.  She provides tips for getting the most out of doctor visits for loved ones with dementia.  Kim also discusses her person-centered approach to medication management.   For more information about the resources at Alzheimer's Orange County, visit: www.alzoc.org or call the help line at 844-373-4400. What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, Virginia Naeve and Steve O'Leary interview Chelsea Cox, Associate Director of Education at UCI MIND, whose father was diagnosed with early-onset Alzheimer's disease when she was in high school. Chelsea shares an honest account of her family's journey through diagnosis, assisted living placement, end-of-life, and coping with loss. What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, co-hosts Steve O'Leary and Virginia Naeve address the topic of anger, a common emotion experienced by many Alzheimer's disease caregivers.  Their guest, Roger Lisabeth shares some tips for developing patience from his own experience  in caring for his wife, Lucy.  What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, co-hosts Virginia Naeve and Steve O'Leary discuss their experience getting an initial diagnosis of Alzheimer's disease for their loved ones. Guest Lisa Up de Graff shares personal challenges and successes in navigating diagnosis and care for her mother, who was diagnosed with Alzheimer's disease five years ago. What would like to hear about next? Email us at mwitbrac@uci.edu.

In this episode, co-hosts Steve O'Leary and Virginia Naeve share some early signs and symptoms they observed in their family members with Alzheimer's disease. Guest Bill Edwards discusses his personal experience with early-onset Alzheimer's disease in his wife, Nancy. What would like to hear about next? Email us at mwitbrac@uci.edu.

Co-Hosts Steve O'Leary and Virginia Naeve share their personal caregiving journeys, provide an overview of the series, and offer some initial caregiving tips. What would like to hear about next? Email us at mwitbrac@uci.edu.