Daughterhood The Podcast: For Caregivers

Dementia. While we know it’s a progressive, neurodevelopmental condition with over 200 types, there are still many questions of why and how it occurs. 

My guest, Mitchell Clionsky, PhD is a board-certified clinical neuropsychologist with 45 years of experience evaluating and treating patients with cognitive impairment, dementia, ADHD, and traumatic brain injury. 

Dr Clionsky, along with his wife and partner Dr Emily Clionsky have treated more than 25,000 patients with cognitive impairment.

They have taken their experience and research and combined it with the most current scientific findings about to create their new book, Dementia Prevention, Using your head to save your brain a practical guide that empowers you to improve your brain's future. 

We cover a lot of topics today - our genes, common health issues, sleep, hearing, our habits, and the lifestyle changes we can make to support ourselves.

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BRAINDOC.COM

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Dr Allison Applebaum is an Associate Attending Psychologist in the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center (MSK), and also the Founding Director of their Caregivers Clinic the first of its kind in any Comprehensive Cancer Center in the US. Dr Applebaum amplifies the voices of family caregivers in her scientific journals, editorials and her research which focuses on developing innovative ways to identify, prepare and support caregivers.

Through this work she also addresses the distress experienced as a result of increasing responsibilities. In Allison's new book, Stand By Me A Guide to Navigating Modern, Meaningful Caregiving. She brings not only her professional experience to the subject, but also her personal journey of caring for her beloved father, Stanley Applebaum. In our conversation today, we discuss her book, the experience of living in the in between as a family caregiver, and how caregivers can find meaning and purpose while juggling the responsibilities and emotional ups and downs. 

Allisonapplebaum.com

Book - Stand By Me - A Guide to Navigating Modern, Meaningful Caregiving

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Today my guest is Barbara Karnes, an Award Winning Nurse and End of Life Educator. She was NHPCO (The National Hospice and Palliative Care Organization) Hospice Innovator Award Winner of 2018 & the 2015 International Humanitarian Woman of the Year. 

Barbara has put her 40 years of experience regarding education, care, and support of dying people and their loved ones into numerous books and resources. One book in particular Gone From My Sight: The Dying Experience, published in 1985, has sold over 35 million copies world wide. Known in the hospice world as “the little blue book” it is the most beloved and widely used resource of its kind. All of her booklets are essential resources in navigating end of life care.

Today we discuss how to prepare ourselves and our care partners including how to chose the right hospice, what happens with food and other physical and emotional issues at end of life and how we can be prepared and present as caregivers for those final moments. 

SHOW NOTES

Bkbooks.com

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No matter the reason you enter a hospital, it's intimidating, and the process is not self-explanatory. Each step from admission to discharge to rehab to home is fraught with managing communication and decisions. My guest Dianne Savastano can help. Diane is founder and principal of Health Assist a Massachusetts based company founded in 2004 that specializes in helping clients navigate the complexities of the healthcare system. Beginning as a registered nurse providing direct patient care, Dianne's 25-year career includes roles as a hospital insurance and employee benefits executive. In our conversation today, Dianne will share how to prepare yourself for navigating a hospital trip the tools you need the questions to ask throughout the entire process, and how to make yourself part of the care team from beginning to end.

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In today's Bonus policy episode, Howard Gleckman joins Anne in discussing policy changes in 2023. Howard is a published author and writer whose professional expertise is founded on long-term care, health care, elder care, tax policy, budget policy and economics.  Howard was also a senior correspondent in the Washington bureau of Business Week. In our episode today, we discuss some of the major policy happenings in 2023 - the GUIDE program, CMS staffing standards, the decision to cover Leqembi and more.

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Howard Gleckman.com

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Connie Baher is a writer and speaker on caregiving and re-imagining retirement. Her latest book is Family Caregivers: An Emotional Survival Guide. Published in USA Today, The New York Times Magazine, Forbes, and The Boston Globe, she is also the author of "The Case of the Kickass Retirement." She is a Harvard MBA, an entrepreneur, and a former tech executive. Connie is A frequent contributor to Next Avenue and I had the pleasure of being a part of her article When the Caregiving Ends: Recovering from Loss, Rebuilding Your Life. Today Connie and I discuss life after caregiving - The variety of emotions to wade through, dealing with others while you’re grieving, that inevitable question of now what do I do and so much more. 

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www.conniebaher.com

Connie’s Book Family Caregivers: An Emotional Survival Guide.

Next Avenue Article “When the Caregiving Ends: Recovering from Loss, Rebuilding Your Life” 

Life Planning Network: https://lifeplanningnetwork.org/. Their mission statement: "The premier networking and professional development organization for life planners working with people over 50."

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The challenge of caring through a broken healthcare system is something every caregiver lives through. My guests today, Daughterhood Founder Anne Tumlinson and Daughterhood Interim CEO Andrea Cohen know those challenges personally and professionally. Today we discuss their personal experiences as caregivers, what drives them to create change, the importance of being able to find practical resources and support - and how Daughterhood can help.

Courtney Hogenson is a registered nurse, entrepreneur, and innovator with over a decade of experience in the healthcare industry. As a certified care manager and a legal nurse consultant, Courtney has extensive expertise in elder care and patient advocacy and has served as a primary liaison and medical advisor for patients and families. Courtney is the founder and chief caregiver of Call-Light, an on-demand healthcare platform that connects care seekers with trusted nurses and clinicians for in-home healthcare anytime, anywhere. Today, Courtney shares ways caregivers can provide care in the home, the importance of creating a care team, and strategies and pitfalls along the way.

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David C. Grabowski, PhD, is a professor of health care policy in the Department of Health Care Policy at Harvard Medical School. His research examines the economics of aging with a particular interest in the areas of long-term care and post-acute care. From 2017-2023 Dr. Grabowski was a member of the Medicare Payment Advisory Commission (MedPAC), which is an independent agency established to advise the U.S. Congress on issues affecting the Medicare program. He joins Daughterhood Founder Anne Tumlinson and I in discussing how policy affects nursing home quality, the fragmentation of payments in the LTC system, staffing requirements, accountability and how to advocate for change.

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Dr. Kalisha Bonds Johnson is an Assistant Professor on the Tenure track at Emory University’s Nell Hodgson Woodruff School of Nursing in Atlanta, Georgia. She earned her BSN, MSN and PhD in nursing and specializes as a Family Psychiatric Mental Health Nurse Practitioner. In 2019, she earned her Ph.D. from Oregon health and science university where her studies focused on how the caregiving experiences of African American dementia pairs (i.e. , African American persons living with dementia and their African American family caregivers) were associated with their quality of life. In our conversation today we discuss her past and current research regarding African American dementia caregivers and their care partners, the challenges of accessing needed services, the disparity in healthcare, and the important need for support.

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