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EP 164 :: Maintaining Dignity in People Living with Dementia :: Dr. Steven Sabat :: Part 2

As Dr. Steven Sabat says, “Look at those with dementia as people, rather than patients – just because they have certain difficulties doesn't mean they cease to be a person.” Amen! In part two of our interview, we continue our talk about the gross underestimation of the capacity of people with dementia. These are people with significant remaining social and cognitive strengths that can be engaged by care partners to the advantage of all. To paraphrase Maya Angelou: people might forget what you said and what you did, but they will never forget how you made them feel. This includes those with dementia.

Steven R. Sabat has been at Georgetown University since earning his doctorate at the City University of New York, where he specialized in Neuropsychology. The main focus of his research has been the intact cognitive and social abilities (including aspects of selfhood) of people with Alzheimer’s disease in the moderate to severe stages of the disease, the subjective experience of having the disease, and the ways in which communication between those diagnosed and their caregivers may be enhanced. In addition, his interests include the epistemological basis of our understanding of the effects of brain injury on human beings. He has explored all of these issues in numerous scientific journal articles, in The Experience of Alzheimer’s Disease: Life Through a Tangled Veil (Blackwell, 2001), and in his co-edited book, Dementia: Mind, Meaning, and the Person (Oxford University Press, 2006).

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EP 163 :: Maintaining Dignity in People Living with Dementia :: Dr. Steven Sabat :: Part 1

We know about the weaknesses of people with dementia, but what about their strengths? Dr. Steven Sabat, professor emeritus in psychology at Georgetown University, reminds us that these people retain awareness, thinking ability, and sense of self. He’s learned that those diagnosed with dementia have more in common with people who don’t than we generally assume; we have to remember the commonalities that we share. It’s a powerful lesson on how to facilitate communication even when one has great difficulty finding the words to speak.

Steven R. Sabat has been at Georgetown University since earning his doctorate at the City University of New York, where he specialized in Neuropsychology. The main focus of his research has been the intact cognitive and social abilities (including aspects of selfhood) of people with Alzheimer’s disease in the moderate to severe stages of the disease, the subjective experience of having the disease, and the ways in which communication between those diagnosed and their caregivers may be enhanced. In addition, his interests include the epistemological basis of our understanding of the effects of brain injury on human beings. He has explored all of these issues in numerous scientific journal articles, in The Experience of Alzheimer’s Disease: Life Through a Tangled Veil (Blackwell, 2001), and in his co-edited book, Dementia: Mind, Meaning, and the Person (Oxford University Press, 2006).

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EP 162 :: Health Education & Dementia Care :: Jennifer Woodruff

Low health illiteracy is a barrier not only to getting the right care but also to creating peace of mind for a caregiver. Thankfully, Jennifer Woodruff is helping to remove these barriers. She’s founder of the Patient Better Project, which helps patients and their families form an at-home care team, enhance communication with health professionals, strengthen health literacy skills, and organize the most individualized and effective health story possible. Oh, and it also reduces stress! Because of this project, caregivers can now have the essential healthcare knowledge and confidence to thrive in today's medical landscape.

Jennifer Woodruff obtained a Master of Healthcare Administration in June 2014. She has been working in medical device and pharmaceutical sales for 15 years with a career focal interest in patient education. In her career, all products (medication, diagnostic test, durable medical equipment, and capital equipment) and services required patient education. This gave her an empathetic eye and unique talent to analyze health consumers and evaluate health proficiency skills quickly. By performing these evaluations, she was able to catapult her career to leadership in product evaluation, market analysis, forecasting, and prospecting medical devices (and pharmaceuticals) to potential prescribers and device recipients.

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EP 161 :: Dementia Care & Respite for All :: Daphne Johnston

Sometimes caregivers just need a break. Daphne Johnson started Respite for All to help them and the ones they care for. RFA’s volunteers are helping improve quality of life for people with dementia while offering peace of mind and respite to their caregivers. It’s a great way to help offset growing social isolation for both patient and caregiver as the disease advances. Plus, the organization's volunteer model provides patients with variety, stimulation, and a welcome change of routine while reducing burnout among caregivers. Sounds like a win-win to us!

Daphne Johnston founded “Respite for All Foundation” to help individuals living with dementia find purpose and hope through new relationships based on a volunteer model.

The Foundation has inspired over 25 new community volunteer Respite programs across the USA.  The original “Respite Ministry” in Montgomery, AL, has logged over 100,000 hours of volunteer time in ten years. Collectively, her programs have served over 1000 people living with dementia, 1000 care partners and trained over 1200 volunteers. 

The program has been recognized by the U.S. Administration on Aging as an innovative initiative for dementia in for 2016 and 2019 and won the coveted 2021 Anne and Irving Brodsky Innovation Grant from the Alzheimer’s Foundation of America in 2021.

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EP 160 :: Botes Memory Method :: Sira Botes

Where flowers bloom, so does hope. And in Florida today, hope for delivering better care to dementia patients is growing thanks to Sira Botes. Her role as a home care clinician inspired her to create a communication platform, the Memory Bouquet, that helps everyone involved with dementia care by identifying the highest, safest cognitive level and establishing the most appropriate care plan. It’s an approach that meets patients where they are at. And more importantly, it elevates the quality of life and decreases the burden of this disease for everyone involved. 

Sira received her Occupational Therapy degree from University of Pretoria, being awarded the Elite Military Scholarship for being one of the top academics in the country.  Following graduation, Sira sought employment in the largest rehabilitation hospital in the southern hemisphere, First Military Hospital. Since relocating the US, Sira has worked in a variety of healthcare settings, including outpatient clinics, skilled nursing facilities, and home health care, where she has held clinical, operational, business development and leadership positions.

Dementia is no stranger to Sira, watching her Grandmother (“Ouma”) care for her husband/Sira’s Grandfather (“Oupa”), who suffered from Alzheimer’s Dementia. He passed when she was just 13 years old. Fast forward 21 years, Sira noticed cognitive changes in her mother during a trip to the US. Shortly thereafter, Sira’s mother was diagnosed with Dementia. Over the last 17 years, Sira has watched the challenges her mother and father have had, and continue to have, while living with dementia. 

The Blessings of Dementia

Sira’s heart continues to grow for persons living with dementia and their care partners, having a deep understanding of the burden on both sides of the care continuum.  Being introduced to cognitive decline at an early age, not fully comprehending what was happening until later in life, planted the seeds of passion for pursuing meaningful solutions for all people suffering from dementia. 

The challenges Sira experienced while working in senior living communities, in addition to her personal life, caring for her mother from a distance, fueled her passion to do dementia care differently, to simplify and demystify dementia.  Sira’s clinical practice revealed a significant gap in the health care provider demand and the knowledge, practical skills, and resources needed to provide optimal health care for persons living with dementia.  This realization began the building process, to bridge the gap between diagnosis and what to do next.  This was the birth of The Botes Memory Method. 

The Botes Memory Method 

The Botes Memory Method is a multifactorial clinical assessment tool that identifies the highest, safest cognitive level, while establishing the most appropriate care plan for persons living with Dementia and all involved in their care. To simplify, The Botes Memory Method begins with a clinical assessment, dementia staging, care plan development and implementation based on the Memory Bouquet™ 

Since the creation and implementation of The Botes Memory Method, Sira travels the state of Florida, teaching, coaching, mentoring, speaking, consulting, and supporting persons living with dementia, their care partners, and the communities in which live, cultivating a more dementia-sensitive culture, creating a universal language around dementia care, and empowering communities through connection. 

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EP 159 :: Navigating Life Changes Due to Caregiving :: Jillian McCleary

Caregiving can change everything and Jillian McCleary understands that first hand. Over a period of 6 months Jillian left her career to care for her mother with Dementia, bought a house that could accommodate her mother’s needs, started her business “Lovelind”, and got married! Listen in with Bobbi & Mike as they talk with Jillian about the ups and downs of caregiving and how to know when it’s time to reach out for help.

Jillian’s mother, Linda, was first diagnosed with Mild Cognitive Impairment (MCI) in 2018 and later diagnosed with Alzheimer’s. As she encountered each stage of the disease, both Jillian and Linda searched for products and knowledge that were difficult, or impossible, to find. The goal of Lovelind is to make products and provide information that will support those living with Alzheimer’s and other dementias, as well as their caregivers. 

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EP 158 :: Dementia Caregiving and the Well Spouse :: Laurel Whitman

When your partner or spouse has a dementia diagnosis it is so important to find support. That’s why Laurel Whitman joined Well Spouse, an organization that advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse or partner.  Join Bobbi, Mike & Laurel as they discuss the significant stress disability and illness can place on a marriage or partnership and how to find moments of joy and connection once again.

Laurel joined WSA as a member in 2014 and joined the Board in 2020 to focus on outreach for younger well spouses. She and her husband Eduardo have been married for 16 years. Eddie was diagnosed with MS in 1998 at the age of 24, and his disease course has been aggressive—he has needed 24-hour care for years. He currently lives at home but he also spent two years in an assisted living facility, so Laurel is familiar with a range of caregiving situations. Laurel has been a venture lender with Oxford Finance LLC since 2004, providing loan facilities to biotech, pharmaceutical, and medical device companies in the US, Canada, and Europe. She previously served as Treasurer for CLAW USA, a non-profit alliance of theatrical lady arm wrestlers focused on social justice. She has a BS in Commerce with a concentration in Finance from the University of Virginia. She and her husband reside in Falls Church, Virginia.

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EP 157 :: Younger Onset Alzheimer's Part 2 :: James Russell

It can often feel hopeless trying to engage with a loved one suffering from dementia. That's why it's important for not only family but also friends to share stories that connect with them. In part two of our talk with blogger James Russell, we discuss the wonders of the village that emerged to help him care for his daughter, how he goes about documenting her life on his blog, and how we can better support a loved one in assisted living by sharing stories of their life. After all, we are the memory keepers for those having trouble remembering their own lives.

James’ blog, “Nevertheless Dementia, We Persist,” began in January 2020 to record his daughter’s life with Alzheimer’s disease in an Aegis Living facility in Seattle. She and James are supported by love channeled to us from their family and many of Lynne’s friends. James is an 81-year-old widower who retired as Dean of Business and Computer Technology at a community college in 2001. He and his wife, Karen, and quickly moved to Wenatchee to enjoy many outdoor and community activities. They moved to Redmond in 2018 to better care for Lynne and her sons.  James’ wife died in September 2019 two months before their 56th anniversary.  James then returned to Seattle to give Lynne better care.

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EP 156 :: Younger Onset Alzheimer's Part 1 :: James Russell

Imagine being diagnosed with early onset Alzheimer’s at only 48 years old. This is what happened to Lynn Russell. Her father, James Russell, now helps care for her. He tells their story on his blog, "Nevertheless Dementia, We Persist," where he recounts the daily struggles, joys, and epiphanies of life with Alzheimer’s. In part one of this talk we speak with Jim about his daughter’s early symptoms and her transition from living at home to a care home where she was 20 years younger than the next youngest patient. His stories are a testament to the strength a family can provide amid such a difficult journey.

James’ blog, “Nevertheless Dementia, We Persist,” began in January 2020 to record his daughter’s life with Alzheimer’s disease in an Aegis Living facility in Seattle. She and James are supported by love channeled to us from their family and many of Lynne’s friends. James is an 81-year-old widower who retired as Dean of Business and Computer Technology at a community college in 2001. He and his wife, Karen, and quickly moved to Wenatchee to enjoy many outdoor and community activities. They moved to Redmond in 2018 to better care for Lynne and her sons.  James’ wife died in September 2019 two months before their 56th anniversary.  James then returned to Seattle to give Lynne better care.

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EP 155 :: Actors and Artists Unite Against Alzheimer's :: Nancy Daly

To look in the eyes of someone you love and have them not know you is heartbreaking. So, after losing four family members to Alzheimer’s, actor and playwright Nancy Daly knew she had to do something. She started Actors & Artists Unite to End Alzheimer’s – a national team for the Walk to End Alzheimer’s. Her touching stories of the loved ones she lost to Alzheimer’s and dementia are an inspiration. And now, thanks to her, thousands of artists and actors across the nation are walking in hope and strength for a future that all can remember.

Nancy Daly is an Actor, Alzheimer’s and Veterans Activist in honor of her father and grandfather who both served in the military. Nancy founded AA Unite in 2011 in honor of her family. She has lost four women in her family to the effects of Alzheimer’s- her great-grandmother, grandmother, mother and aunt.

In 2019- She lost her father to the effects of Dementia.  AA Unite was the first non-corporate Friends and Family National team for the Walk to end Alzheimer's for the Alzheimer's Association that has raised over $330,000 to date. She promised her father when she founded AA Unite in 2011- “ A cure in our lifetime. I promise you, Dad. We will find it.” Since his death, she works that much harder, walks that much further to keep her half of that  promise- a cure in hers. The motto of her AA Unite team is-"When Actors and Artists Unite- the world can shift!" 

Anyone can join the national team in any city that has a Walk to End Alzheimer’s. All are welcome!!!

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EP 154 :: Busy Minds Box for Dementia :: Kristina Lubofsky

One Alzheimer's diagnosis in one’s family is life-changing. But three? That's when Kristina Lubofsky knew she had to take action. She used her gerontology and caregiving backgrounds to create Busy Minds Box. The service helps dementia patients combat boredom, loneliness, and depression with a monthly activity box. Thanks to Kristina, older adults can boost their brain health and reinforce social connections through learning exercises, including arts & crafts, puzzles, and games. And have some fun in the process, too.

From Kristina: “Hi! I’m Kristina, a gerontologist and founder of Understanding Alzheimer’s and Busy Minds Box. 

After my dad’s mother was diagnosed with Alzheimer’s and vascular dementia, I went back to school to become a gerontologist and learn more about how to help her and my family navigate through everything. 

After my mom’s father was diagnosed with Alzheimer’s, I came up with the idea for Understanding Alzheimer's, a resource to help families like mine understand more about the disease. 

After my mother’s mother was diagnosed with Alzheimer’s, I used my gerontology and caregiving backgrounds in creating Busy Minds Box to combat her boredom, loneliness, and depression.

Busy Minds is dedicated to helping improve brain health. We offer monthly subscription activity boxes designed to promote brain health in older adults and help reduce the risk of cognitive decline. Each box features a different theme and opportunity to something new together each month, which is one of the best ways we can keep our minds healthy.

We also offer free weekly Mindful Monday practices on YouTube to raise awareness of how mindfulness meditation can help the brain, body, and spirit.”

EP 153 :: Thoughtful Hospitalization :: Michael Splaine

A trip to the hospital, planned or unplanned, with a person who has a memory disorder can be difficult to manage and risky. Not to mention stressful. But you can be ready for it, or even avoid it. Michael Splaine provides an online workshop for caregivers designed to equip them with the knowledge and skills to avoid preventable hospital or emergency room visits as well as navigate hospitalization, if needed. From keeping a notebook to having a "go" bag, he has all sorts of great advice to help remove some of the stress of a hospital visit for both the caregiver and the patient.

Michael Splaine is owner and principal in Splaine Consulting, a small advocacy and government affairs consulting firm based in Washington DC.  Immediately prior to starting this company, Mike was Director of State Government Affairs in the Public Policy Division of the US Alzheimer’s Association with whom he enjoyed a 23-year career, during which time he and his business partner Kate Gordon were the architects of the state AD plan strategy that started in 2007.  

Mike is a consultant to the US Alzheimer’s Association/CDC Healthy Brain Initiative and recently was the lead on behalf of the Association on its Road Map for Indian Country document and now its related outreach.  Mike also serves as a consultant to Alzheimer’s Disease International, the International Psychogeriatric Association and the International Indigenous Aging Association (IA²).

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EP 152 :: State Caregiver Resource Centers :: Stephanie Gunther

Caring for a loved one with dementia can have devastating effects on the lives of families and caregivers, including financial pressures, legal quandaries, health problems, and emotional turmoil. Fortunately, the California Caregiver Resource Centers offer free support. As one of the program's consultants, Stephani Gunther is helps families cope with all the burdens of caregiving. It’s a program that every state could learn from. Because as the incidents of dementia continue to grow, so does the importance of having support systems in place for the growing community of caregivers.

Stephani Gunther is a Family Consultant at Del Oro Caregiver Resource Center in Sacramento, which is one of the 11 CRCs in California. Stephani has a bachelor’s degree in Social Work from Fresno Pacific University and 17 years of experience in adult day programs. Stephani also worked as a Program Manager for Valley Caregiver Resource Center in Fresno where she managed two adult day programs for people with Alzheimer's and dementia. It is her passion to serve older adults and their families as they go through the caregiving journey. Drawing on her extensive background in adult day programming, she also enjoys educating caregivers about activities that they can implement in their homes. In addition to serving her clients, Stephani enjoys traveling and spending time with her family.

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EP 151 :: Dementia Affects the Whole Family :: Leillana Hernandez

When you have a mom who is a great cook, you notice when she's off her game and forgetting ingredients. For Lily Hernandez's mother this was an early sign that she might not be well. And when she was diagnosed with dementia, it changed her family's life overnight. Like so many caregivers, Lily is learning as she goes, including the power of playing her mother's favorite music. She also understands the importance of keeping her composure. Her attitude of making the best of a difficult situation should be an inspiration to all caregivers facing huge challenges every day.

Leillana says, “I never expected to be a caregiver to my mother because she was my support and helped raise my 3 boys.  I never expected her to need care due to how strong and self-sufficient she was.  My husband, my sons, my younger brother, his wife, his children, a daycare center, and providers are now all her caregivers. It takes all of us to care for her the way she deserves. Our lives were turned upside down overnight.”

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EP 150 :: Resources for Caregivers :: Carol Greco

Long-term caregiving has many emotional and physical impacts on the caregivers, including migraines, depression, hair loss, and a “short fuse”. But Carol Greco is helping to make the experience less stressful. She is founder and CEO of WeCare4, a global platform and community with a portfolio of resources for all caregivers. It has all the information caregivers need so they can better serve those who depend on them and better manage every aspect of day-to-day life. Best of all, it can relieve those headaches better than aspirin.

Carol is Founder and CEO of WeCare4®, (www.wecare4.com), a global and diverse platform, community, and portfolio of resources for all caregivers and other stakeholders interested in “Helping Those Who Care for Others™️”. Beginning with caregivers of the aging, she has expanded this model to caregivers of adults and children with special needs and will continue to expand to other care segments. WeCare4® was built based on years of Carol’s general business experience together with her personal experience of being the primary caregiver for both her aging parents and her in-laws and the underpinnings of her prior experience as Founder and CEO of Family Care Necessities™️, a very successful childcare and eldercare agency and consultancy, founded over 30 years ago. 

Carol is a senior level business professional with expertise in strategic planning, business development, competitive assessment, marketing/sales management, executive search, staffing, organizational design as well as significant experience relevant to the overall healthcare and caregiver industry sectors. The initial part of her career included key positions at AT&T in its Leadership Continuity Program and ITT. She is also Cofounder of the Marketing IMPACT Council™, focusing on “Big M” Marketing™, which involves all stakeholders in an organization’s marketing processes; and cofounder, President, and COO of Greco Associates, a strategic advisor and integrated solutions provider for for-profits and nonprofits. Carol has a BA from Iona College and an MBA from NYU.

The purpose of WeCare4® is “Helping Those Who Care for Others™️”. It provides a global and diverse platform, community, and portfolio of resources to serve all caregivers, including family, friends, and professional caregivers and the entire ecosystem that supports them. Beginning with caregivers of the aging, WeCare4® has expanded this model to caregivers of adults and children with special needs and will continue to expand to other care segments. WeCare4® also seeks to break down the existing silos of information that all caregivers and the people that they serve have to explore to find everything they need. WeCare4® enables and empowers this community as a curator, aggregator, and source of relevant news, information, and resources; products and services; jobs, career opportunities, and resources for employers (whether family, friends, agencies, or care facilities) and job seekers; as well as education, training, and professional development for caregivers to better serve those who depend on them and to assist caregivers with every aspect of day-to-day life management. WeCare4® social channels provide opportunities for networking, additional content, and comments.

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EP 149 :: Conflict Resolution in Dementia Care :: Kimberly Best

What do you do when you are concerned about your parents whose health is deteriorating but your siblings are not? This is just one of the many issues that can create conflict among family members dealing with eldercare. In some cases, a professional mediator can be extremely helpful. Kimberly Best, RN, MA, is a professional civil and family mediator and author. She helps reduce the emotion and conflict between family members so that decisions can be made in the best interest of the older adults involved. Because we all know that sibling relationships can be complicated – to say the least! – but all siblings want what’s best for their parents.

Kimberly Best, RN, MA, is a Tennessee Rule 31 Listed Civil Mediator and Tennessee Rule 31 Trained Family Mediator.  Kim’s practice focuses on Family Mediation, Health and Elder Care Mediation, Civil and Business Mediation and Conflict Coaching in Franklin, Tennessee. She is currently serving her second term on the board of the Tennessee Association of Professional Mediators.  

In addition to nursing school, Kim attended graduate school at the University of North Carolina Charlotte in Clinical/Community Psychology.  She obtained a master’s degree in Conflict Management from Lipscomb University in Nashville, Tennessee and a certificate in Conflict Management Consulting from Pepperdine University.   Kim also trained in Transformative Mediation at Hofstra University and Healthcare Mediation at the University of South Florida. 

She is a working member of the Association of Conflict Resolution Elder Mediation Professional Development Group as well as a working member of Mediators Beyond Borders, International, and a member of the American Bar Association Dispute Resolution development committee.  She is passionate about helping others resolve conflicts in a productive, non-litigious way and committed to finding the optimal solutions for all parties. Kim's unique, diverse experiences and her love of learning inform her work in conflict management.  She is the author of “How to Live Forever, A Guide to Writing the Final Chapter of Your Life Story" and is a speaker and trainer on the topics of conflict management, life transitions, and how to make difficult decisions - including end of life issues.  

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EP 148 :: Chatables for Aging Adults :: Amy Stapleton

We all need stimulating conversation. But what happens when we are isolated or spend lots of time alone? After a career at NASA, Amy Stapleton began designing interactive voice experiences for Amazon Alexa that use virtual characters to chat, entertain, and engage. After witnessing how covid lockdowns and social isolation negatively affected the health of her mother with dementia, Amy saw how this tech could benefit older adults by reducing feelings of loneliness, exercising the social and emotional brain, and potentially slowing the onset of mental decline. All we can say about this is, "Hey, Alexa. What a great idea!"

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EP 147 :: The Reluctant Caregiver :: Joy Johnston

Gen Xers may have been saying “OK, Boomer” since the 80s, but now more and more find themselves taking care of their Boomer parents. Guest Joy Johnston – digital journalist, author, and caregiver advocate – was in her 30’s when her father was diagnosed with dementia. Her collection of essays, The Reluctant Caregiver, is a realistic, humorous, and inspiring look at the challenges of dealing with a family health crisis while juggling a career and a marriage. With a unique Gen X perspective, her writings are an inspiration for younger generations facing caregiving challenges. 

Joy Johnston is an Atlanta-based digital journalist, author, and caregiver advocate. Her collection of essays about family caregiving, The Reluctant Caregiver, received a gold medal at the 2018 IPPY Awards. Her work has been published in Chicken Soup for the Soul and other anthologies. She writes about dementia and caregiving on her blog, The Memories Project.

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EP 146 :: Caregivers in the Workplace :: Denise Brown

About 40% of employees are also family caregivers, but not all employers recognize the daily challenges of this growing community. To help these caregiver employees and prevent burnout, Denise Brown develops and leads training programs for family caregivers and their employers. It all begins by starting a conversation with your manager. Employees have the power to help design coping strategies and support programs to reduce stress at the office and remain effective workers. After all, caregiving is a very noble thing, but you need to be well to care for someone else. 

Denise began supporting family caregivers in 1990 and launched a business to help them in 1995. She launched one of the first online caregiving communities in 1996 which she managed until its sale in 2020. She now creates and delivers caregiving training programs for the workplace and for individuals who want to coach family caregivers. More than 300 individuals from seven different countries have enrolled in her training programs offered through her company, The Caregiving Years Training Academy.

Denise began helping her parents in 2004 after her father’s bladder cancer diagnosis. Her parents, now 90 and 87, live near Denise in their own apartment.

Denise is the author of several caregiving books, including:

• The Caregiving Years, Your Guide to Navigating the Six Caregiving Stages;

• Take Comfort (a four-book series)

• After Caregiving Ends, A Guide to Beginning Again;

• The Daily Healing Plan, Support for Healing After Caregiving Ends.

Next Avenue named Denise a 2017 Influencer in Aging, one of “50 advocates, researchers, thought leaders, innovators, writers and experts who continue to push beyond traditional boundaries and change our understanding of what it means to grow older.” Her insights have been featured in The Wall Street Journal, The New York Times, US News & World Report, USA Today, SmartMoney.com, Time magazine and Chicago Tribune.

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EP 145 :: Caring While Black :: Dr. Fayron Epps

African Americans have the highest prevalence of Alzheimer's disease and related dementias, but many don't get the support they need. Dr. Fayron Epps is helping to change that. She's devoted her career as a nurse leader to reducing health disparities for underserved populations through innovative, culturally relevant programs for the Black community. She's building resources and awareness around dementia and developing a supportive environment that enhances the well-being of African American families affected by the disease. By changing the narrative around Black people and dementia, she’s helping to change lives for the better. 

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EP 144 :: Using Cannabis to Treat Dementia :: Sue Feldmeth

It’s time to clear the air about medical cannabis and dementia. Sue Felmeth – an RN, educator, and consultant – began to investigate medical cannabis after her mother's pain management doctor recommended it as a safer option to opioids. She was amazed to discover that it can be an effective way to safely cut back on other medications and improve quality of life. Now she provides guidance and education about cannabis to empower caregivers to make the best choices for their loved one's health. CBD, THC, hemp, cannabinoids – we really get into the weeds in this episode.

Sue Feldmeth is a registered nurse with a bachelor’s degree in nursing from UCLA and 30 years of nursing experience.  She is also a member of the American Cannabis Nurses Association. 

In an effort to help her mother manage her severe osteoarthritis pain, she has educated herself on the therapeutic use of cannabis medicine by attending classes and conferences.  Now she is an educator and consultant providing medical cannabis seminars and personalized guidance for those seeking to use cannabis and CBD as their medicine to treat pain, anxiety, sleep disturbances, dementia related issues and more.  Sue is based in Pasadena, CA and has given medical cannabis talks to various senior centers, churches and other interested groups in the area.  She is available for one on one consultations or to speak to a group on the emerging medical understanding of cannabis.

Learn more about Sue on her website.

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EP 143 :: Memory Detecting Using Found Items :: Steve Kiley

Sometimes metal detectors can also find old memories. Just ask Steve Kiley. He has a background in occupational therapy and a passion for history, metal detecting, and relic hunting. He’s created a unique and fun reminiscence program for seniors using the artifacts they find, which helps those with dementia feel valued, contented, and peaceful by recalling happy times from their past — Even something as small as a marble can spark big stories from childhood. Whether treasures or memories, you never know what lies just beneath the surface.

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EP 142 :: Kid Caregivers :: You Are Not Alone :: Hailey Richman

Young caregivers need to know they are not alone. After all, there are an estimated 1.4 million youths between ages 8-19 caring for a family member with dementia. Hailey Richman was one of them. She started Kid Caregivers, an organization which helps young people cope with their situation. It also enlivens the lives of adults living with Alzheimer's. From doing puzzles with seniors or just talking with them, by pairing youth with the dementia community Hailey is helping enhance lives – both young and old.

Hailey is 14 years old and lives on Long Island. She was a caregiver starting at age 4 for her grandmother who died of Alzheimer’s at age 96.

Hailey says, “There are 1.8 million kids in the United States who are acting as caregivers. I want other kids to know that they are not alone; there are many of us out there! I believe that kids need to be recognized as caregivers. I also want to benefit the lives of Alzheimer's patients, with intergenerational programs (Puzzle Time and Creative Arts). My goal is to pair youth with the dementia community to enhance lives.”

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EP 141 :: Sharing Dementia Stories for Better Understanding :: Frank Silverstein

Having a good story is nice, but it’s better when it’s told well. As someone who has told thousands of others’ stories over his long and successful career as a news producer, Frank Silverstein knows the power of good storytelling. And with his documentary film Lousy: Love in the Time of Dementia he tells of his personal experience as a co-caregiver for his parents. It’s a moving tribute to his mom and dad. And it shows how telling stories of our experiences with a loved one with dementia can not only be touching, but also educational.

He came to MSNBC in 2006, as part of the start-up team on Your Business— a program devoted to small business entrepreneurship. He was there for the full 12 years of the show until its run ended in January 2019. During that time he produced profile segments, makeovers, half-hour remote specials, podcasts, social media video, and print reports. 

He co-authored the book: It's Your Business, published by Hachette. It was based on his own reporting and the work of my his colleagues at the show, JJ Ramberg and Lisa Everson. Much of his career was at ABC News, where he was on staff at 20/20, Primetime Live, and Day One. As an associate producer, he developed and produced reports for Robert Krulwich, John Hockenberry, Bob Brown, John Stossel, Barbara Walters, Diane Sawyer, and others. He has also worked at CBS, CNN and CNBC, producing stories and investigative reports on business, the economy, politics, corruption, religion, medicine, and the military. Along the way he produced several independent documentaries, was an animator on Peewee's Playhouse, and began his career working for filmmaker William Greaves. He holds a master's degree in American History from Columbia University and a bachelor of arts degree from Yale. 

Learn more about Frank on his website and connect with Frank on LinkedIn.

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EP 140 :: The Financial Strain of Caregiving :: Amy Goyer

Long-term care can be very expensive, so planning ahead is one of the most important steps one can take to help minimize out-of-pocket expenses. Amy Goyer knows these challenges firsthand. She's AARP's national family and caregiving expert and has been a family caregiver her entire adult life. With proper care planning, individuals and their caregivers can access information and support that can contribute to a higher quality of life, not to mention a lower level of stress, and help better prepare them for the future. It’s never too early to start.

Amy has more than 35 years of professional experience serving and advocating for older adults, children and families, and people with disabilities. She has been a family caregiver her entire adult life, caring for her grandparents, parents, sisters and other relatives and friends.

She writes extensively for AARP about her experiences caring for her mother, Patricia, who died in 2013, and her father, Robert, who lived with Alzheimer's disease for 12 years before his death in 2018.

Amy has written three books and appears regularly as a caregiving authority on network news shows, including more than a dozen times on NBC’s Today. She has been a guest on Dr. Phil and The Doctors and been interviewed by CNN, NPR, the New York Times, the Washington Post, the Wall Street Journal and People, among other media outlets.

Amy Goyer is AARP's national family and caregiving expert and moderates AARP’s Family Caregivers Discussion Group on Facebook.

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EP 139 :: Family Caregiving and Ministry to the Forgotten :: Bishop Kenneth Carder :: Part 2

A diagnosis of dementia changes everything quickly, including how one loves. Our guest, Bishop Kenneth Carder, is a retired United Methodist bishop and seminary professor who cared for his late wife. He is now devoted to educating people on behalf of those living with dementia, both those diagnosed and their care partners, focusing on what faith communities offer them. He knows that loving a person with dementia can expand one's capacity to love without reciprocity. In fact, Bishop Carder has so many powerful insights, they couldn’t all fit into one episode. So make sure not to miss part two.

From Bishop Kenneth Carder’s Website:

“Throughout my more than half century of ordained ministry, I have felt called to ministry and presence among “the marginalized.” The imprisoned, the poor, and the hidden people in our communities have been critical to my life and ministry as a pastor, bishop, and seminary professor.

Additionally, an integral part of my sense of call is to work at the intersection of the church’s scholarship and its practices. For thirty-five years, I served as pastor of United Methodist local congregations in Virginia and Tennessee; and for twelve years I was an active bishop, serving the Nashville and Mississippi Episcopal Areas. Then, I joined the faculty of Duke Divinity School where I was named as the Ruth W. and A. Morris Williams Professor of the Practice of Christian Ministry.

A significant shift in my scope of ministry took place ten years ago. My wife and partner in ministry, Linda, was diagnosed with Frontotemperal Dementia, one of the neuro-cognitive disorders that fall under the umbrella we regrettably label dementia!

Since that dismal rainy day in November 2009 when we first heard the dreaded word dementia, my world and vocation have shifted.  I moved from bishop and professor to caregiver!

The global became very local! Major concerns dominating the denomination and academia receded to the margins of my preoccupation. My daily relationships shifted from the hyper-cognitive and hyper-productive to the cognitively impaired and productively diminished!

But being with people who live on the margins and with whose memories are fading and whose abstract thinking has disappeared and who may not know their own names shifts the margins of one’s thinking about God, about life, about the church and its mission, about what really matters.

Writing has always been important in my roles as pastor, bishop, and seminary professor. My daughters and several friends encouraged me to share my reflections, questions, and insights gained from current and past experiences through the medium of a blog.

I claim no superiority of thinking or insight. I have more questions than answers, for the years have taught me that each answer only expands and deepens the questions.  My reflections are invitations to dialogue, not dogmatic declarations of infallibility. I value and respect the perspectives of others, including those who disagree with me.  From my perspective, we are all ‘pilgrims on the way to God,’ as Thomas Aquinas declared.”

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EP 138 :: Family Caregiving and Ministry to the Forgotten :: Bishop Kenneth Carder :: Part 1

A diagnosis of dementia changes everything quickly, including how one loves. Our guest, Bishop Kenneth Carder, is a retired United Methodist bishop and seminary professor who cared for his late wife. He is now devoted to educating people on behalf of those living with dementia, both those diagnosed and their care partners, focusing on what faith communities offer them. He knows that loving a person with dementia can expand one's capacity to love without reciprocity. In fact, Bishop Carder has so many powerful insights, they couldn’t all fit into one episode. So make sure not to miss part two.

From Bishop Kenneth Carder’s Website:

“Throughout my more than half century of ordained ministry, I have felt called to ministry and presence among “the marginalized.” The imprisoned, the poor, and the hidden people in our communities have been critical to my life and ministry as a pastor, bishop, and seminary professor.

Additionally, an integral part of my sense of call is to work at the intersection of the church’s scholarship and its practices. For thirty-five years, I served as pastor of United Methodist local congregations in Virginia and Tennessee; and for twelve years I was an active bishop, serving the Nashville and Mississippi Episcopal Areas. Then, I joined the faculty of Duke Divinity School where I was named as the Ruth W. and A. Morris Williams Professor of the Practice of Christian Ministry.

A significant shift in my scope of ministry took place ten years ago. My wife and partner in ministry, Linda, was diagnosed with Frontotemperal Dementia, one of the neuro-cognitive disorders that fall under the umbrella we regrettably label dementia!

Since that dismal rainy day in November 2009 when we first heard the dreaded word dementia, my world and vocation have shifted.  I moved from bishop and professor to caregiver!

The global became very local! Major concerns dominating the denomination and academia receded to the margins of my preoccupation. My daily relationships shifted from the hyper-cognitive and hyper-productive to the cognitively impaired and productively diminished!

But being with people who live on the margins and with whose memories are fading and whose abstract thinking has disappeared and who may not know their own names shifts the margins of one’s thinking about God, about life, about the church and its mission, about what really matters.

Writing has always been important in my roles as pastor, bishop, and seminary professor. My daughters and several friends encouraged me to share my reflections, questions, and insights gained from current and past experiences through the medium of a blog.

I claim no superiority of thinking or insight. I have more questions than answers, for the years have taught me that each answer only expands and deepens the questions.  My reflections are invitations to dialogue, not dogmatic declarations of infallibility. I value and respect the perspectives of others, including those who disagree with me.  From my perspective, we are all ‘pilgrims on the way to God,’ as Thomas Aquinas declared.”

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EP 137 :: Memory Care that Focuses on the Person :: Part 2 :: Mary Underwood

Mary Underwood – a social worker of 33 years with a primary focus on memory care, and two-time Alzheimer’s Association Outstanding Caregiver of the Year Award winner – has learned a lot in her career. Most importantly, care facilities and caregivers need to always focus on the person, not the illness. Even if a person’s needs and conditions for living a good life change as a cause of dementia, their unique life story is always with them and should be reflected in their care. It's a philosophy that supports dignified, individualized care. Plus, it can make things easier for the caregiver as well, which is a win-win in our book.

Mary Underwood is the Vice President of Memory Care Services at Artis Senior Living and has dedicated her career to helping our elders who are impacted by the affliction of Alzheimer’s and other dementias. Mary has worked at Arden Courts, Masonicare, Benchmark Senior Living, and Atria in the positions of Executive Director, Resident Care Coordinator, Regional Director of Alzheimer’s Services, and Life Guidance Program Director respectively. Prior to joining Artis in 2015, Mary served as the Vice President of Memory Care Services and Resident Experience at Maplewood Senior Living. Since joining Artis Senior Living, Mary has successfully developed and implemented a mission and philosophy for the company that supports dignified, individualized care for those diagnosed with Memory Impairment.

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EP 136 :: Memory Care that Focuses on the Person :: Part 1:: Mary Underwood

Mary Underwood – a social worker of 33 years with a primary focus on memory care, and two-time Alzheimer’s Association Outstanding Caregiver of the Year Award winner – has learned a lot in her career. Most importantly, care facilities and caregivers need to always focus on the person, not the illness. Even if a person’s needs and conditions for living a good life change as a cause of dementia, their unique life story is always with them and should be reflected in their care. It's a philosophy that supports dignified, individualized care. Plus, it can make things easier for the caregiver as well, which is a win-win in our book.

Mary Underwood is the Vice President of Memory Care Services at Artis Senior Living and has dedicated her career to helping our elders who are impacted by the affliction of Alzheimer’s and other dementias. Mary has worked at Arden Courts, Masonicare, Benchmark Senior Living, and Atria in the positions of Executive Director, Resident Care Coordinator, Regional Director of Alzheimer’s Services, and Life Guidance Program Director respectively. Prior to joining Artis in 2015, Mary served as the Vice President of Memory Care Services and Resident Experience at Maplewood Senior Living. Since joining Artis Senior Living, Mary has successfully developed and implemented a mission and philosophy for the company that supports dignified, individualized care for those diagnosed with Memory Impairment.

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EP 135 :: The Need for Bilingual Caregivers in Dementia Care :: Zoila Ortega

Parlez-vous Français? Habla Española? Parli italiano? Speaking more than one language opens doors in many ways, especially for nurses and caregivers caring for a dementia patient who can no longer speak English. Dr. Zoila Ortega knows this firsthand. She learned a lot taking care of her mother with Alzheimer’s, including the importance of bilingual nurses. As a health care professional and teacher for more than 50 years, she founded a nursing school that makes it possible for ESL CNA students to more readily learn course material. It’s a critical skill, especially with a nursing shortage. And we think that’s muy bueno!

Zoila Ortega has been a health care professional for more than 50 years. She has taught at six major universities throughout the United States, established and administered numerous health promotion centers, and worked in non-profit, for profit, and governmental health agencies. Her areas of expertise include nursing education, educational psychology, cardiovascular health, childbirth education, home health, studying and test-taking strategies, and international health.

Dr. Ortega has an M.A. in Health Education from New York University, a Masters in Philosophy with a specialization in Health Administration from the Syracuse University Maxwell School of Public Administration, and a Ph.D. from American International University with a specialization in Human Behavior.

Zoila  was an adjunct professor in the Nursing Department at Germanna Community College where she taught in the R.N. and the Practical Nurse programs and created the Nurse Aide Program.

In May 2015, Dr. Ortega established the Career Nursing Academy in Locust Grove, Virginia which offers Virginia Board of Nursing approved  Nurse Aide courses. Personal Care Aide courses are also being offered at the Academy. She is the owner, director and an instructor. Most recently, in January 2019,  Dr. Ortega started the Kauai Career Nursing Academy which is now suspended due to COVID-19 restrictions. The Kauai Career Nursing Academy is expected to restart functioning in 2022.”

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EP 134 :: Integrating an End of Life Doula into Dementia Care :: Jane Euler

Wouldn’t it be nice if we each had by our side a personal advocate, cheerleader, companion, guide, ear, and rock? This is the role of an end-of-life doula. Similar to birth doulas, they are nonmedical professionals offering emotional, spiritual, informational, and physical support. In her role as a doula, Jane Euler talks with Bobbi & Mike about how she can be a listening ear, compassionate partner, and advocate for families on the journey of serious illness and end-of-life. 

Jane’s doula practice and life experiences with family and friends put her in a unique position to support families experiencing serious illness and the end of life. She sees her role as a compassionate guide and advocates to create a harmonious space for her families. She believes in equal access to care and acknowledging the human side of serious illness care. Jane has a Master's Degree in Palliative Care; she trained with the International End-of-Life Doula Association and has an End-of-Life Doula Certificate from the University of Vermont. She is a hospice, and No One Dies Alone.

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EP 133 :: Person Centered Care :: Don Wendorf

At the core of person-centered care is the person. And despite all the limitations dementia can bring, caregivers must remember that the person is still in there. So how do we reach them? Don Wendorf is a psychologist of 40 years who retired to become a full-time caregiver. He’s learned that focusing on a patient’s competencies – what they can still do – helps them feel safe, loved, and useful, while helping caregivers feel less frustrated and better handle their emotions. It’s a great lesson for those who are at wits’ end, which can be a daily experience for many of us.

Don Wendorf, Psy.D. is a retired Psychologist and Marriage & Family Therapist, who practiced over 40 years, specializing in marriage therapy. He retired in 2013 to be the full-time caregiver for his increasingly stroke-disabled wife, Susan, after taking care of her while working for 15 years. She passed away in March 2014. He also helped take care of his mother-in-law (cancer), father (Parkinson’s) and mother (Alzheimer’s). 

Don has been a professional musician since his high school days, playing in a variety of jazz and bluegrass bands as well as writing songs. He combined all these interests and experiences in two books, one on marriage (Love Lyrics: a Musical Marital Manual) and one on the emotional struggles in caregiving (Caregiver Carols: a Musical, Emotional Memoir), both written primarily in song lyrics to be more accessible and memorable and to ease the pain a bit. 

Don and his wife, Lynda, met when he contributed to her book, Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers, and together they have edited or written several additional books. They are advocates for increased funding for research on Alzheimer's and related dementias and regularly speak to conferences, churches and advocacy groups on topics relating to dementia and caregiving. They conduct weekly singalongs for several local respite and day care programs.

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EP 132 :: Adaptive Clothing for Dementia Care :: Andrea Wurster

A fashion designer once said that life’s too short for boring clothes. But any caregiver will tell you that life’s too short for complicated clothes, including our guest, Andrea Wurster. As the head of product and partnerships at Silverts, an adaptive clothing company, Andrea is helping provide easy dressing solutions with simplified, stylish designs for seniors and disabled people. From magnetic buttons to pull-on pant loops, this apparel reduces the risk of injuries for caregivers and those with disabilities getting dressed. Plus, it helps restore patients’ dignity with a wardrobe that has both function and fashion. Stress definitely doesn’t go with these outfits.

Andrea Wurster has been at Silverts for just over a year now, but her love and passion for adaptive started long before. While she was studying Gerontology and Health Studies in University, Andrea worked in therapeutic recreation in long-term care where her passion for supporting people with dementia, caregivers, and adaptive clothes began. Eventually her career lead her back to Adaptive, where she is thrilled to be the head of product and partnerships at Silverts.

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EP 131 :: Dementia Stories through Expressive Arts :: Breeda Miller

Being imperfect is perfectly human. And with so many unknowns for first-time caregivers, they should never be afraid to ask for help. Bobbi & Mike talk with Breeda Miller, whose story about helping her mother at the end of her life has resonated with millions. And now her one-act play tells the story of her mother, from a young woman to a spirited senior coping with dementia. Breeda’s stories are full of powerful insights that all family caregivers will find helpful.

An author, speaker, trainer and playwright, Breeda Miller has used her professional experience serving clients in health care organizations, corporations, academic institutions, and non-profit communities. Apart from her education, Breeda Miller came to her awareness of the value of self-care when she cared for her mother for nearly six years, including hospice care in her home. She is a graduate of the University of Detroit Mercy and has a variety of certifications and training programs. A skilled storyteller, her video stories have gone viral and she has appeared on The Moth Story Hour on NPR. Her acclaimed one-woman play, Mrs. Kelly’s Journey Home provides audiences with an entertaining and engaging theatrical experience that lifts hearts and provides memorable lessons.  

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EP 130 :: How Dementia Caregiving Affects Your Marriage :: Douglass Christensen

Marriage is bliss, right? Well, whoever said that was never a co-caregiver for a family member with their partner. In this episode, Douglass Christensen talks with Bobbi & Mike about the stress a marriage can undergo while caring for a loved one with dementia, but also the ways it can bring you closer together. His role as a co-caregiver Vincent Zappacosta, author of “Dementia-Mama-Drama”, helped add a new level to their relationship, and others can learn from their experience. With patience, humor, and a team approach, they brought hope to a seemingly hopeless situation. And are better off for it.

Douglass Christensen has a background in theatre and dance. He traveled the world extensively performing and felt lucky to experience many different cultures while doing what he loved. After moving to New York he worked in publishing and eventually met Vincent. 

Fast forward and twenty five years later they are still together and still able to make each other laugh. His role as co-caregiver for Vincents’ mother added another level to their relationship and experience together. 

Their journey is brought to life in the book “Dementia-Mama-Drama” which is available on Amazon Books. Douglass and Vincent were recently guests on the Inspired Memory Care webinar in NYC, a workshop for caregivers and social workers. They have also participated in several podcasts and interviews continuing their support for caregivers and Alzheimer’s by sharing their experience. Through social media they have remained strong advocates for dementia and Alzheimer’s. 

They continue their work on “Some Of These Daze” the script based on their thirteen year roller coaster ride with Mama. She will finally be on the stage and screen where she belongs.

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EP 129 :: Alz Buddies :: Friendships Between Students & Alzheimer's Residents :: Jillian Lee

For many students, the college experience involves 24-hour cramming sessions, annoying group projects, and partying for days. But for Jillian Lee of National Alzheimer’s Buddies (NAB), a nonprofit pairing students with Alzheimer’s patients, college is a time to build bridges towards a society with equitable dementia care. Like so many, she knows that there’s a special connection between seniors and young people as they are each reassessing priorities in life. This helps build a friendship and bring out the beauty of the individual patients while helping students discover who they are beyond the classroom.

Jillian is Chief Executive Officer for National Alzheimer’s Buddies (NAB), a nonprofit pairing college students with Alzheimer’s patients (Buddies). NAB is an intergenerational movement responding to the profound isolation and social disengagement experienced by people in the intermediate-to-late-stages of Alzheimer’s Disease (AD) who are living in long-term care facilities. We build meaningful, lasting relationships with residents during weekly one-on-one visits.

She is currently in graduate school at Wake Forest University. She is in the Neuroscience Ph.D. program with a primary focus in Alzheimer’s Research. She graduated her undergraduate studies at Boston College ‘21 studying Neuroscience and Philosophy. 

Get to know NAB a little better by viewing their annual report.

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EP 128 :: When Caregivers Change, Care Shouldn't :: Mike Michel

Is your fridge covered in sticky notes? Do you keep a notebook with enough highlighting that it looks like a coloring book? Or maybe your hand is covered in ink messages? You are not alone. Keeping all of your notes in order is a challenge and critical to providing accountability, continuity, and efficiency in care. Mike Michel, a former caregiver and case manager, developed Care Trainr, an app that is a modern solution for continuous caregiving and puts an end to confusing paper trails. He’s helping put the family at the center of personalized care by creating a single place to train for all in-home caregivers and helping ensure consistent, thoughtful, and purposeful care… not to mention fewer headaches. From med schedules to “no mashed peas,” there's an app for that!

Mike Michel attained a B.S degree in Health Science at Florida A&M University. Through his education in health science and physical therapy as well as his previous work with geriatric patients and in-home healthcare, Mike observed the inefficiencies that care families and their loved ones endure. Now, Mike educates families on two tenets: First, proactive care is always the best care—we don't have to wait until we need care to set standards for how we are cared for. Second, when caregivers change, care shouldn't.

In 2016, Mike Michel was providing care for his boss, Doc, when he noticed inefficiencies in the organization and the quality of his care. Doc’s care was provided for by his family and managed by two different agencies. Mike noticed Doc’s care suffering due to a lack of accountability, continuity, and efficiency in his care. “In 30 days, Doc would see 1-2 new caregivers a week or returning caregivers that would need to be reoriented to his care,” Mike stated it would take an hour to retrain each caregiver. With his education in health science and physical therapy and his previous work with geriatric patients and home healthcare, Mike realized he had all the tools to help Doc’s family improve his care. Mike became Doc’s case manager and took over the tasks of training caregivers, setting up doctor’s appointments, and transcribing information provided by the care providers for the family. Mike worked seven days a week for Doc ensuring he received the best available care. While taking care of Doc, Mike realized the family’s issues with caregivers, organization, efficiency, and continuity were common problems for family caregivers. It was a problem he wanted to solve. Mike wanted a way to help family caregivers provide the best level of care they could, keep track of care notes, and provide a more efficient way for family caregivers to train care providers.

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EP 127 :: ER Decisions for Those with Dementia :: Brittany Lamb

Due to the nature of dementia, it is likely that, at some point, the person you are caring for will need to be hospitalized. Unfortunately, hospitals are not typically well-designed for dementia patients and preparation can make all the difference. Dr. Brittany Lamb knows firsthand the frustration that overwhelmed caregivers encounter when visiting the emergency department. She is the founder of an online course offering personalized support and guidance for caregivers on how to make medical decisions for their loved one with dementia during a hospital visit, including the importance of always having an advocate nearby. Bobb in helping caregivers prepare for these decisions before a medical crisis happens.

For over 7 years Dr. Lamb has been helping families navigate decision making in the emergency department so they can feel their loved one’s wishes are understood and followed. Now she is helping caregivers prepare for these decisions before a medical crisis happens, through an online course with personalized support. She is most active on Facebook where she has a free private Facebook group to support caregivers in planning.

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EP 126 :: Caregiving and Mixed Dementia :: Nancy Poland

Tune in as Bobbi & Mike talk with author and caregiver Nancy Poland. Nancy teaches us the importance of caring for the caregiver and we learn how to “dance” with dementia behaviors.

Nancy Poland is a writer and speaker focusing on caregiving.  As a volunteer educator for the Alzheimer’s Association, she brings her experience as a caregiver for her dad, who was diagnosed with vascular dementia, and at the end of life, Lewy body dementia.  She published her first book, “Dancing With Lewy: A Father Daughter Dance Before and After Lewy Body Dementia Came to Live With Us”, narrating their experience. Her second book, “Remarkable Caregiving: The Care of Family and Friends” is based on interviews of six caregivers in various situations, both with children and adults. 

A life-long resident of the Twin Cities, Nancy and her husband John raised two sons and continue to contribute to their communities.  Professionally Nancy is a Contracts and Compliance Manager where she utilizes her writing and negotiation skills to support the mission of Be the Match®. She is a trainer and mentor, both professionally, and in a volunteer capacity. 

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EP 125 :: Recapturing Memories Through Dementia Choir :: Joshua Vickery

In this foot-tapping episode, Bobbi & Mike talk with Joshua Vickery, Executive Director of Encore Creativity for Older Adults. We learn how Joshua uses music to engage people living with dementia and tap into their memories of beloved songs.

Joshua Vickery is a vocalist, actor, teacher, producer, musical director, arts administrator and conductor. Joshua’s love of music and the arts has allowed him to have an incredible career thus far. He earned his Associate of Arts Degree in Vocal Performance at Indian River Community College, receiving the honor of Outstanding Fine Arts Graduate. He then earned a Bachelor of Arts Degree in General Education/Music at Palm Beach Atlantic University where he served in various leadership roles. Joshua grew up with a passion for music ministry and service. He served on several large church teams as music and worship director over vocal praise teams, orchestras, youth choirs, drama and pageants. He helped director the Palm Beach Singing Christmas Trees which was televised to thousands in South Florida. During his tenure in these churches, he founded and served as the Executive Producer of the Central Florida Christmas Celebration, in which he coached youth and adult vocal performers, developed shows and scripts, and managed hundreds of volunteers.

Joshua is the founder of Central Florida Community Arts, an organization in which he was the executive director for 11 years. This organization consists of thousands of artists in multiple choirs, an adult and youth symphony orchestra, children/youth arts program, theatre, School of Performing Arts and programs for seniors, vulnerable communities and arts and wellness. CFCArts strives to make the arts affordable and accessible, and uses the arts as a catalyst to create change in the community in a variety of ways.

Joshua is currently the Chief Executive Officer of Encore Creativity, the nation’s largest and fastest growing choral and arts organization for older adults. He leads the company and is focused on strategic partnerships, fundraising, strategic planning and the national expansion. He is working to leverage Encore to be the nation’s thought leader on creative aging.

Joshua has been a featured soloist in countless venues, produced musical recordings, and been a director of numerous productions. Joshua has been an entertainment leader, casting director, and vocal coach for Walt Disney Entertainment.

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EP 124 :: The Dementia Barber :: Lenny White

Tune in as Bobbi & Mike have a chat with Lenny, the dementia-friendly barber. We hear how Lenny uses a jukebox and an old-fashioned shave to bring a little joy and bit of fun into care homes. We also walk away with some valuable dementia caregiving tips. As Lenny says, “Laugh a lot and forgive often.”

An excerpt from Lenny’s website:

“I am the first mobile dementia-friendly barber to go around care homes in Northern Ireland and provide a service like mine. Before, the salons within the care homes of Nothern Ireland were mostly suited to women from the decor to the lighting to the general chit chat. With my service, I try and cater to the men and create the whole ‘barber shop’ experience by adding pictures, barber signs and playing music on my jukebox. I cut the men’s hair and trim their ears, nose and eyebrow hair and afterwards a good old fashioned shave followed by a head/face massage and a dash of lemon lotion to finish off.

Each person is different but I have learned that patience and talking my clients through what I am about to do really helps. I feel that my music is the thing that makes the most difference and I love to see the smiles on their faces as they sing along. I love what I do and I hope to bring my business into care homes across the UK.”

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EP 123 :: Cognitive Engagement for Those Living with Dementia :: Hayle Wilder

In this episode Bobbi & Mike talk with Senior Activities Coach Hayle Wilder. Hayle gives us tips on how to engage our loved ones living with dementia on a daily basis. We learn how Hayle applies a person-centered approach to design activity curriculum, and how caregivers can connect personally with those living with Dementia by understanding their interests and background.

Since 2014, Hayle Wilder has worked closely with seniors to support their life enrichment across many stages of cognitive abilities. Hayle's work has spanned a range of settings on the central coast of California, including an Adult Day Center, Assisted Living & Memory Care Unit, Independent Living Community, and Skilled Nursing Facility. During her senior endeavors, Hayle facilitated a social club for health and wellness featuring weekly curriculum and group discussions, designed and directed a monthly activities calendar for an Assisted Living and Memory Care building, and led life enrichment programs, including art, exercise, music, and cognitively engaging classes. Hayle's educational background and training includes a Bachelor of Science from California Polytechnic State University, San Luis Obispo, as well as an Activity Leadership Training and Seminar Certification recognized by the California Department of Public Health.

In 2020-21, the COVID-19 pandemic caused many seniors to experience extraordinary challenges due to social distancing regulations, isolating environments, and disengaging conditions which kept seniors from friends, family, and neighbors. Through the wonders of technology, Hayle saw firsthand how a little bit of creativity turned weekly sentiments of seclusion and solitude into meaningful programs and connections. With this new way of providing social and cognitive engagement, virtual communication emerged as an ideal way to incorporate recreation into the homes of seniors living throughout the United States. 

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Thank you to Artis Senior Living for sponsoring this episode.

EP 122 :: Wine, Women & Dementia :: Lickety Glitz

Tune in as Bobbi & Mike chat with the fun and fabulous filmmaker and caregiver Lickety Glitz. We learn the importance of surrounding ourselves with kindred caregivers who can pick us when dementia has us down for the count, and remind us we can get up tomorrow and “punch dementia in the face” once again. As Lickety says, “Until there’s a cure, there’s community.”

Lickety Glitz has been a former just about everything from non-profits arts administrator to cabaret performer to post-production professional to Crappiest Daughter of the Year award winner about 40+ years in a row. She broke that winning streak by stepping up to the plate, hand-in-hand with The Other Girl, to provide their dementia mom with the best end-of-life care possible. When her mother’s dementia journey ended, she found a new passion to tell the stories of dementia family caregivers, meeting for the first time the virtual caregiver friends who greatly impacted her family’s dementia journey.

Check out Lickety’s blog Stumped Town Dementia and stay tuned for the release of her documentary Wine, Women & Dementia.

Follow Lickety Glitz on Facebook and Twitter.

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Thank you to Artis Senior Living for sponsoring this episode. 

EP 121 :: Dementia and Palliative Care :: Dr. Robert Arnold

Dr. Robert Arnold joins Bobbi & Mike to guide us into the specialty of Palliative care and how we can help promote the quality of life for our loved ones living with dementia. We learn that Palliative care involves caring for the whole person—their pain, symptoms, depression, anxiety, confusion, living environment, social concerns, as well as existential and spiritual issues—and helping them find joy and meaning while living with a serious illness. 

Robert Arnold, MD is the Medical Director of UPMC Palliative and Supportive Institute and is a  Professor in the Division of General Internal Medicine at the University of Pittsburgh School of Medicine. He received his medical degree from University of Missouri, Kansas City School of Medicine and completed his residency in internal medicine at Rhode Island Hospital, Providence and was a Robert Wood Johnson Clinical Scholar, University of Pennsylvania, Philadelphia.

Dr. Arnold specializes in palliative care and is board-certified by the American Board of Internal Medicine in Hospice and Palliative Medicine. Dr. Arnold’s clinical interests focus on providing palliative care consults in a tertiary care hospital and working in a supportive oncology ambulatory practice. His research interests focus on how clinicians operationalize ethical precepts in the care of seriously ill patients. He works at the interface of communication skills, training, medical ethics, and palliative care, all in the effort to improve clinicians’ skills. 

Current research focuses on teaching palliative care communication skills to clinicians using both face-to-face courses and new technologies and on understanding the impact of these educational interventions. He also works with junior investigators to better understand the impact of primary palliative care interventions in oncology and cardiology.

Finally, Dr. Arnold is interested in studying health system interventions to improve seriously ill patients’ and families’ experiences. In 2000, Dr. Arnold was named the first Leo H. Creip Chair of Patient Care and he is the past-president of the American Academy of Hospice and Palliative Medicine (AAHPM).  He has been named to numerous “top doctor” lists both locally and nationally and was awarded the AAPMH Lifetime Achievement award in 2013 and AAHPM Visionary in Palliative Care Award in 2014.

To find a Palliative Care provider in your area check out Get Palliative Care.

To learn more about Person Centered care go to Respecting Choices.

Follow Dr. Arnold on Facebook and Twitter.

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Thank you to Artis Senior Living for sponsoring this episode.

EP 120 :: Dementia Advocacy and the Stole Ministry :: Lynda Everman

Tune in as Bobbi & Mike sit at the feet of Lynda Everman, author, caregiver and fiber artist, to explore how her faith informs her advocacy for those living with Alzheimer’s and Dementia. Lynda teaches us that fabric holds memories, is symbolic and can communicate love and affection when words may no longer be accessible.

Lynda Everman has spent most of her adult life as a caregiver: for her mom who was paralyzed by a stroke, her dad with vascular dementia, and her late husband with Alzheimer’s Disease. These experiences inspired her advocacy for increased Alzheimer's funding for care and a cure. 

She and fellow advocate Kathy Siggins conducted a multi-year national campaign for a semipostal (awareness and fundraising) stamp for Alzheimer's research. As a result of their efforts, the first ever Alzheimer’s Disease Research Semipostal Stamp was released by the US Postal Service in November 2017 and may be purchased online. As of the end of November 2021, it has raised over $1.2 million for NIH funded research.

Lynda is a founding member of three national networks under the umbrella of UsAgainstAlzheimer’s and served as founder and convener of ClergyAgainstAlzheimer’s. She is an editor and contributor to Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers.  She was also a Senior Editor for Dementia-friendly Worship: A Multi-faith Handbook for Chaplains, Clergy and Faith Communities and co-authored Stolen Memories: An Alzheimer’s Stole Ministry and Tallit Initiative with her husband Don Wendorf.

Lynda has been recognized by Maria Shriver as a Woman of Influence in the Women’s Alzheimer’s Movement (WAM) and included on her “Big Wall of Empowerment.” 

Lynda is a dedicated and outspoken advocate for those living with Alzheimer’s and their care partners and, in September 2018, was honored with the inaugural UsAgainstAlzheimer’s Advocate of the Year Award.

Follow Lynda on Facebook and Twitter.

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Thank you to Artis Senior Living for sponsoring this episode.

EP 119 :: Dementia Care :: Breathe, Buck Up, Make Them the Star :: Vincent Zappacosta

In this fun-loving episode, Vincent Zappacosta, author of Dementia-Mama-Drama, joins Bobbi & Mike to connect and, at times, commiserate in the adventures of caring for a parent with dementia. Vincent teaches us his secret to surviving caregiving (hint: check the title) and tips on sustaining a happy marriage while sharing caregiving responsibilities.

Vincent Zappacosta has been a writer and photographer ever since he was a little boy back in Catholic school. His professional background has been in theatre, yoga and graphic design. His writings as a caregiver and strong advocate for dementia and Alzheimer’s have been published by leading Alzheimer’s organizations. He continues to spread the word through social media and has been a featured guest author on AlzAuthors, Easton Book Festival, Leeza’s Care Connection as well as a panelist on John Hopkins University caregivers seminar, to mention a few. Vincent and his husband Douglass Christensen continue work on “Some Of These Daze” the script based on their caregiving experiences.

Check out Vincent’s book, Dementia-Mama-Drama, and follow him on Facebook, Twitter and Instagram.

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Thank you to Artis Senior Living for sponsoring this episode.

EP 118 :: Dementia Letters Project :: Kate Fassbender

Tune in as Kate Fassbender talks with us about using writing as a technique to express the myriad of feelings dementia patients and their caregivers experience. Kate’s gentle, kind spirit invites us to open and share our own stories as well as receive the stories our loved ones living with dementia want to share.

Kathryne Fassbender is the creator of the Dementia Letters Project, founder of The Hem of Christ and the granddaughter of someone who lived with vascular dementia. She accompanies those on their dementia journey, magnifying the importance of creativity and human connection by becoming relational with others in creative and dignified ways. Kate is a classically trained musician, visual artist, and theater maker, with an academic foundation in the creative arts therapies. Kate is a Certified Dementia Communications Specialist and Certified Dementia Practitioner.

Attend one of Kate’s workshops or follow her on Facebook, Twitter or Instagram.

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Thank you to Artis Senior Living for sponsoring this episode.

EP 117 :: De-prescribing Medications in Elderly Dementia Patients :: Dr. Sion Scott

Tune in as Dr. Sion Scott of the CHARMER research project talks with Bobbi & Mike about the risks and benefits of de-prescribing medicines that your elderly loved one with dementia may no longer need. It is so important to talk to the doctor about whether or not a medication that has been used for many years is still the right fit.

Dr. Sion Scott is an academic hospital pharmacist with the University of Leicester. His research aims to support healthcare professionals to collaborate with older people and their carers to make sure that they are getting the most out of their medicines and that they are not taking any that they don’t need or might cause them harm.

You can find Dr. Scott on the CHARMER website and follow him on Twitter.

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EP 116 :: Dementia :: Benefits of Dance on Brain Health :: Magda Kaczmarska

Studies show that dance increases activity in the circuits of the brain helping to reduce anxiety, trigger memories, and improve overall well-being and quality of life. On this episode, dancer, choreographer, creative aging advocate and community-based teaching artist Magda Kaczmarska discusses the benefits of dance and movement for both dementia patients and their caregivers. Join us as Bobbi, Mike, and Magda bridge the gap between science and the arts. Remember: We can move the body to move the mind.

Magda Kaczmarska is a dancer, choreographer, creative aging advocate and community-based teaching artist based in New York City. Magda received her MFA in Dance Performance & Choreography and her BS in Biochemistry & Molecular Biophysics from the University of Arizona. Magda has dedicated her career to utilizing the vehicle of dance to support changing narratives around agency, belonging and the right to self-expression. Her multidisciplinary work leverages a dual background in neuropharmacology and dance to build bridges between seemingly disparate sectors. 

Devoted to building evidence base, while expanding public and professional education in best practices in creative aging practice globally, Magda balances her work in intergenerational community-based teaching with engagement in advocacy in several sectors. As an Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute, Magda builds collaborations to design and expand access to creative aging programs that support brain health across the lifespan. She founded Magda Kaczmarska Dance to build healthy, expressive and inclusive community through the vehicle of creative movement and dance. She leads the program Stories in the Moment, a co-creative program which combines dance, movement and storytelling to amplify the expressive voices of people living with dementia.  

Stories in the Moment is grounded in the principle that dance and movement are a universal language and we can all discover and hone our abilities to listen and express in a more embodied and holistic fashion. Our storytelling need not be limited to spoken language. We can use dance, movement and gesture to tell stories with our bodies. This is especially vital for people who may be experiencing shifts in their modes of communication, like people living with dementia inevitably do. Amplifying these alternate modes of expression opens up opportunity for meaning making and connection. The AIM is to SEE and HEAR one another. Stories in the Moment inherently facilitates us in expanding our tools of “listening” “seeing” and “speaking”. Each story has value. Together we celebrate all our voices and stories. Together we build community. 

Find out more about Magda on her website and follow her on Instagram and Twitter. You can also join Magda for a virtual class through the Dementia Action Alliance.

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EP 115 :: How Mindfulness & Meditation Can Help Dementia Caregivers :: Jon Macaskill

Jon is a retired Navy SEAL Commander turned leadership and mindfulness coach. During his 24-year Navy career, he served in multiple highly dynamic leadership positions from the battlefield to the operations center and the board room. His style of teaching leadership is unconventional yet highly effective. He is passionate about helping people and organizations become the best versions of themselves through mindfulness coaching, keynote speaking, and grit and resilience training.

The hypervigilance required to care for someone with dementia can take its toll, causing stress, anxiety, exhaustion, anger, and depression. So how can you cope with these challenges? Jon Macaskill, a retired Navy SEAL Commander turned mindfulness and meditation coach, joins this episode to discuss techniques that allow you to be emotionally and physically stronger with better focus and the ability to accomplish more in less time with reduced stress. Best of all, it only requires a few minutes each day.

Find out more about Jon on his website and take a listen to his podcast, Men Talking Mindfulness. You can also follow him on Instagram and LinkedIn.

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EP 114 :: Early Onset Dementia in the Workplace :: Joy Loverde

On this episode, Joy Loverde highlights the importance of helping people in the early stage of dementia to continue working and living their best life. Join us as we talk about the issues facing younger people who are getting diagnosed with dementia – How can employers create a dementia-friendly workplace? Does HR have a plan for such patients? Are there protections provided by the Americans with Disabilities Act? These are all important questions to ask as we seek to create a healthy dialogue and an environment that helps patients live with this disease.  

Dementia is not just a disease for older people. Early-onset dementia affects people younger than age 65 and its instances are growing rapidly, with many in their 40s and 50s. They have families and careers, but they probably don’t have a dementia-friendly community. Guest Joy Loverde – author, advocate, and marketing & media consultant to the eldercare industry – discusses with Bobbi and Mike the challenges facing more and more people of working age who are getting diagnosed with early-onset dementia.

She is the author of The Complete Eldercare Planner, now in its 6th edition and Who Will Take Care of Me When I’m Old? Critics hail her work as “illuminating, eye-opening, and required reading for everyone over 40.”  

She has been quoted in the Wall Street Journal, New York Times, U.S. News & World Report, among many others. She has appeared on the TODAY Show, Good Morning America, and NPR numerous times.

You can find more information about Joy on her website and follow her on Twitter

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EP 113 :: Advocating for Dementia Policy & Legislation :: Ian Kremer

In this episode Bobbi  & Mike talk with Ian Kremer, JD, of the LEAD Coalition, whose dedication to dementia policy has helped pass legislation at the federal, state and local levels for over 25 years. In this conversation we focus on the importance of dementia friendly communities as well as de-escalation training for police officers when working with people suffering from dementia.

Ian Kremer joins Bobbi & Mike in this week’s powerful episode. Learn how making our communities dementia-friendly can be beneficial to everyone and how the LEAD Coalition is advocating for passage of dementia and caregiver legislation in Congress.

The LEAD Coalition accelerates transformational progress in care and support to enrich the quality of life of those with dementia and their caregivers, detection and diagnosis, and research leading to prevention, effective treatment, and cures.

Go to the LEAD website to learn more and volunteer!

Go to Dementia Friendly America to learn how to advocate for dementia inclusion in your community.

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