Special Kind of Care
Caregivers for people suffering from dementia or Alzheimer’s Disease often find themselves in heartbreaking circumstances, faced with the question of how to care for loved ones while preserving their own emotional wellbeing. In this episode, we learn that this struggle is one Kitty Eisele, award-winning writer and producer for NPR and PBS, is intimately familiar with. Following Kitty’s story is a conversation between Ian Kremer of the LEAD Coalition and Lisette Carbajal of the Virginia Health Care Association, who has her own caregiving experience to share.
CAREGIVER: KITTY EISELE
KITTY EISELE is an award-winning writer and producer for NPR and PBS. As a longtime editor of NPR’s Morning Edition and Weekend All Things Considered, she determined the news agenda daily for millions of listeners for over two decades. As a film producer with Ken Burns, she received an Emmy Award for her work on “The Civil War” series and other productions for PBS. A 2014-2015 Nieman Fellow at Harvard, she has earned Dupont, James Beard and Peabody Awards for her work, and been a fellow of the Japan Society and the Salzburg Seminar. She teaches journalism at Georgetown. Her time as a caregiver for her own father is the subject of her new podcast “Demented: When You Become Your Parents’ Parent” (September 2020).
- Her blog on life as a caregiver: www.gooddaughtersclub.com
- Facebook: Demented: When You Become Your Parents’ Parent
- Instagram: @this_is_demented
EXPERTS: IAN KREMER, LISETTE CARBAJAL
IAN KREMER, JD, has worked on federal, state and local dementia policy since 1996. Since 2012, Kremer has served as Executive Director of the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease) the uniting voice of over 200 member and allied organizations. 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. The LEAD Coalition has helped to secure historic funding increases for the National Institutes of Health (NIH), expand Medicare services for people with dementia and protect dementia-relevant components of Medicaid and the Patient Protection and Affordable Care Act, expand the role of people with dementia and their care partners in medical product development, build a nation-wide network of dementia-friendly communities, and worked with a dozen federal agencies to overcome health disparities, clarify regulatory pathways, combat elder abuse, and improve cognitive impairment detection and diagnosis, clinical care, and access to home and community-based services.
Kremer serves on the steering committee for NIH 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers and served on the 2017 Summit steering committee. He also serves on the Public Policy & Aging Report editorial board, and on steering and advisory committees for the National Institute on Aging (NIA) IMbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory, the UCLA Dementia Care Study the Alzheimer’s Disease Patient and Caregiver Engagement (AD PACE) initiative, the Dementia Friendly America initiative, the Brain Health Partnership, and Dementia Alliance International. Previously, Kremer has served on steering and advisory committees for a wide variety of organizations including the CDC Healthy Brain Initiative Roadmap the Gerontological Society of America Workgroup on Cognitive Impairment Detection and Earlier Diagnosis, and the PCORI Dementia Research Methods project. Kremer holds degrees from Washington University in Saint Louis and the University of Michigan School of Law.
LISETTE CARBAJAL became an advocate for an end to Alzheimer’s disease when her father was diagnosed during her third year in college. She has dedicated her time to increasing awareness about the disease and raising funds for Alzheimer’s research. Through her own experience with her father, Lisette recognized the difficulty of navigating the healthcare system as a young adult caring for an aging parent. Lisette is committed to be a voice for millennial caregivers experiencing these same challenges.
Lisette’s father, Jose Carbajal, passed away in January 2019, but she continues to advocate for change in aging healthcare and fight to end Alzheimer’s in her father’s honor.