Thomas Baird and Maggie Dawson
Awkward Story is a Dementia Education Podcast focused on supporting individuals touched by dementia related diagnoses. We wish to address the stigma and isolation often beset upon patients and their families by bringing their poignant, tragic, beautiful, awkward stories into the open.
This past month, Thomas and Maggie had the honor of interviewing Dr. Anne Basting regarding her new book, "Creative Care: A Revolutionary Approach to Dementia and Elder Care." Dr. Basting, a MacArthur Genius Grant recipient, discusses her work as a creative gerontologist, and her role as a family member impacted by dementia. She also addresses the COVID crisis and the changing care landscape in the U.S. All ASDP listeners are encouraged to read her book, watch this Ted Talk, and check out the myriad resources created by her team at Time Slips. But first.... before doing any of that, those listeners should listen to this incredible interview.
Maggie and Thomas interview Kelly Takasu, the Public Policy Manager for Alzheimer's Los Angeles. She discusses the implementation of Dementia Friendly Communities particularly in the Los Angeles area, as well as Age Friendly initiatives in the region.
Anne Ellett is a certified nurse practitioner with extensive experience in all aspects of dementia care, and the founder of Memory Care Support. In this interview, Anne discusses the Best Life Memory Care Approach, which she developed and continues to teach for the Green House Project.
Dementia caregivers already face unique daily challenges. In this short recording, Thomas and Maggie share (from their respective homes!) how COVID-19 has presented challenges to common memory care practices.
Mike Belleville was 52 years old when he was first given a dementia diagnosis. He retired at the age of 54 after being diagnosed with Lewy Body dementia. Mike was a telecommunications technician for nearly 20 years and also served in the Rhode Island Air National Guard for 12 years. After realizing that he could still contribute in a meaningful way, Mike became an advocate for those living with dementia. He currently serves on the Dementia Action Alliance's Board of Advisors. Mike was gracious enough to speak with us about his experience as a young person living with dementia.
Earlier this month, Maggie had the opportunity to interview Ted Werth concerning his work in the field of memory care and aging. Ted Werth is the Head of Corporate Development and Research for MyndVR, a digital health company providing Virtual Reality recreation and therapy to the booming population of older adults. Ted has previously co-founded several startups in the tech, content, and social media worlds and is now applying his experiences to improving the lives of our senior population.
Maggie and Thomas interviewed Jackie Pinkowitz, who discussed the ongoing work and mission of the Dementia Action Alliance. Ms Pinkowitz earned her Master's degree in Education from Rutgers University and holds advanced certification in special needs populations. She was a primary family caregiver to her mother and father-in-law who both had dementia. She is Board Chair of the Dementia Action Alliance and speaks at national, state and local conferences and forums to advance inclusion and "living fully with dementia".
Maggie and Thomas recently interviewed Gary Glazner, founder and Executive Director of the Alzheimer's Poetry Project (APP). In this podcast, Gary explores the power of the arts in empowering individuals with a dementia diagnosis. Throughout the conversation, the group discusses the significance of creativity, ambiguity, expression, and sensory stimulation for these individuals and their families. Established in 2013, the APP attempts "to improve the quality of life of people living with Alzheimer’s disease and related dementia by facilitating creative expression through poetry." APP was the recipient of the 2013, Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Award, as well as the 2012 MetLife Foundation Creativity and Aging in America Leadership Award, in the category of Community Engagement. In 2013, the National Endowment for the Arts listed the APP as a “best practice.” Mr. Glazner is also the author of “Dementia Arts: Celebrating Creativity in Elder Care,” on Health Professionals Press, 2014. Additionally, his work has been published by Harper Collins, W.W. Norton and Salon.com. Per the APP website, programming has reached 26 states domestically, as well as Australia, Canada, England, Germany, Poland, and South Korea, serving over 35,000 people living with dementia.
This week, Thomas and Maggie interviewed Reverend Jeanne Phillips, a Hospice Spiritual Care Counselor. Jeanne discusses the various manifestations of spiritual care, and how meaningful it can be for individuals with a dementia diagnosis, particularly at the end of life. Reverend Jeanne Phillips has been working as a Hospice Chaplain/Spiritual Care Counselor at LightBridge Hospice in San Diego for 10 years, providing spiritual and emotional support for patients with terminal illnesses and their families. She also serves as Staff Minister at Vision Center for Spiritual Living, leading the Compassionate Care Ministry as well as teaching, guest speaking and supporting the Communications Ministry. She has worked in the Chaplaincy field for more than 15 years and completed 4 units of Clinical Pastoral Education in 2009. She has been a licensed spiritual counselor since 1996 and became a CSL Minister in 2013 after earning her MA degree in Consciousness Studies at the Holmes Institute, Centers of Spiritual Living.
This week's interview is with Nancy Schier Anzelmo, MSG, and Paula Hertel, MSW, co-founders of Connected Horse. Nancy and Paula are long-time professionals in the field of dementia care, and they recently turned their collective focus toward equine-guided workshops. According to their website, Connected Horse "offers human-animal connection, engagement and understanding" through innovative workshops that engage the individual, their caretaker, and the horse. This research-based workshop provides space for learning and engagement that the pair would otherwise not have in their home environment, opening both to a unique experience each time. Fun Fact: Paula Hertel is also the Chair of the Board for the Presence Care Project, which we featured in our podcast interview with Ymkje Dioquino, MS, LMFT, the COO of the Presence Care Project.
In this episode, Maggie and Thomas interview Jason Bloome, founder of Connections Care Home Referrals. Jason started Connections nearly 20 years ago after being inspired by his own personal caregiving experience, with a desire to help low-income families find caregiving options for older adults. Jason discusses how certain policy limitations effect access to assisted-living care for older adults. He specifically discusses the limitations of Medicaid programs in California and how policy changes could potentially make Medicaid money available to individuals seeking assisted living options.
Raman Mohabir is a Hospice Bereavement Coordinator specializing in grief, bereavement, and support group facilitation. She has over five years of experience facilitating bereavement groups for children, adolescents, young adults and adults. In this interview, Raman shares her insights concerning the many manifestations of grief, and the group gives particular focus to the caregiver's experience of loss and grief.
Dr. Gabrielle Mahler, D.M.D, is a Los Angeles based dentist specializing in older individuals with cognitive impairment. In this episode, Dr Mahler shares some of her experience and insight regarding oral care for older adults living with dementia symptoms.
Ymkje Dioquino, MS, LMFT is the Chief Operating Officer of the Presence Care Project in San Francisco, CA. She is also a Family Care Therapist at the Ray Dolby Brain Health Center in San Francisco, where she provides psycho-therapeutic services and support to persons with Dementia and their families and friends. She has practiced mindfulness since age 19 and started teaching Mindfulness Based Dementia Care (MBDC) in 2014. She was kind enough to speak with us concerning mindfulness practice and caregiving. Mindfulness practices can be an excellent, life-giving resource for caregivers feeling exhausted from their work. Please listen!
Anne Hanenburg is a landscape architect specializing in Dementia Design and Healing Gardens. She was gracious enough to speak with us about the significance of the physical environment in dementia care settings. Whether your loved one is living in a memory care community or at home, these dementia design principles can be very insightful.
PK Beville is the founder of Second Wind Dreams and the creator of the Virtual Dementia Tour. In this interview, PK discusses the Virtual Dementia Tour and the research behind it. The VDT is a dementia sensitivity training designed to educate and empower caregivers by offering better understanding of their loved one's experience. The training involves a simulation of the dementia experience, as well as an opportunity to reflect on observations made during the simulation. In creating the Virtual Dementia Tour, PK was attempting to offer useful insight to individuals tasked with providing care to dementia patients. Here, she discusses the initial research that supported the development of the VDT, as well as the continued efforts to perfect the training.
In this podcast, we interviewed Rick Lauber, author of The Successful Caregiver's Guide. Rick discusses his personal experience as a caregiver, and the issues that he finds most pertinent as a dementia care author. A link to Rick's website can be found on our resources page.
We are back with another interview! This week, Thomas interviews Lisa DiPalma, Physical Therapist Assistant. Lisa has been working in the field of Physical Therapy for ten years, with the majority of her work being with the geriatric population. During our interview, she discusses the benefits of physical therapy for individuals living with dementia.
It is difficult to know whether an individual with dementia will reap benefits from activities traditionally designed for individuals without cognitive impairment. Because of this, we often hear loved ones say "My mother won't be able to do that because she is confused." However, this may not always be the case. In this episode, we speak with Emilie Rosanvallon regarding her experience teaching Mindfulness Meditation to individuals with cognitive impairment. Emilie talks about her first experience teaching individuals in a dementia-care setting, and explores the challenges she faced. She explains the benefits of mindfulness mediation, the adjustments she makes while working with this population, and how it might benefit caregivers as well.
With the rise in dementia diagnoses over the past several years, wandering has become much more common among seniors. In communities throughout the US, individuals have tragically gone missing after wandering away from their homes. Whether individuals are at home or living in a facility, wandering can happen at any time. In this episode, we discuss efforts being made by the County of Los Angeles to educate caregivers and provide support in finding loved ones that have wandered away from home due to cognitive impairment. The pilot program, called LA FOUND, is part of a larger effort to prevent these incidents and encourage coordination among community agencies to support effected families.
This is the second part of our interview with Mariette Salama, in which we continue to discuss her work as a Skilled Nursing Facility Administrator. Skilled Nursing Facilities (SNFs) are a vital part of our healthcare system, and are often misunderstood. Social workers often find that families are misinformed concerning a SNF's ability to accept Medicaid and Medicare for long term care, particularly with dementia care patients.
Skilled Nursing Facilities (SNFs) are a vital part of our healthcare system, and are often misunderstood. They are often used for post acute care (after a hospitalization), but can occasionally be used for long-term care as well. However, social workers often find that families are misinformed concerning a SNF's ability to accept Medicaid and Medicare for long term care. During this episode, we speak to Mariette Salama regarding her work as a Skilled Nursing Facility Administrator.
In this episode, we speak with Dr Adria Navarro concerning decisional capacity.
This is the second part of our interview with Monica R. Moore, MSG, and Dr Sarah Kremen, MD, of the Mary S. Easton Center for Alzheimer's Disease Research at UCLA. In this episode, Dr. Kremen discusses the work of the Easton Center in conducting clinical trials and Alzheimer's Disease research.
This is the first segment of a two-part interview with Monica R Moore, MSG, and Dr. Sarah Kremen MD. We discuss their incredibly important work within the field of Alzheimer's research, education, and resource provision at the Mary S. Easton Center for Alzheimer's Disease Research at UCLA.
Have you or your family members ever found yourselves in the emergency room due to consequences of dementia symptoms? In this week's episode, Thomas and Maggie interview Christine Chester, LCSW, regarding her work in hospital emergency rooms. The emergency room visit, which Thomas calls "the crisis moment," is common among families dealing with dementia symptoms.
In this week's episode, Thomas and Maggie discuss the value of psychotherapy for individuals living with dementia. Dr. Alan Hess has been working for over 20 years as a psychologist, specializing in psychotherapy with elderly adults. He works with individuals diagnosed with dementia, and was willing to answer some of our questions regarding this work.