Frontotemporal Dementia (FTD): the Younger-Onset Dementia Often Mistaken for Alzheimer's

Allison Applebaum stood by her dad Stanley as his caregiving partner, respecting his wishes and maintaining his quality of life through the very end of his life. Allison was previously the Founding Director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center, the first program of its kind in the United States to provide comprehensive psychosocial care to family members and friends of patients who are in the caregiving role. Her father Stanley, a talented and prolific composer and musician, worked with many great artists for the 50’s and 60’s, including Neil Sedaka, Ben E. King, and Connie Francis. Allison took a lead role as her dad’s caregiver after the death of her mother, helping him deal with Lewy Body Disease (Lewy Body Dementia). After her mother died, Allison and Stan went forward, dealing with intense and traumatic grief. Allison’s caregiving story is a beautiful tribute to her dad, and there are many caregivers across the U.S. doing the same job for someone they care about. LBD carries an unusual set of caregiving challenges. Stan defined quality of life as the ability to be creative, grow, and continue to compose his music. As a caregiver, Allison respected his wishes and ensured he lived fully until his death at 96. Some highlights from Allison’s unique caregiving story include: Her dad retained his creativity and this contributed greatly to his quality of life Stan never had a DNR (Do Not Rescucitate) document, and Allison respected that wish through his death Intermittent hallucinations were part of his disease, a great source of pain for both Stan and his daughter. Allison considered them partners in caregiving, and worked to build a caregiving village customized to her dad’s needs. Connect with Dr. Allison Applebaum: Website: allisonapplebaum.com Book: Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving Socials: Twitter Instagram Interested in purchasing a GrandPad to stay connected with a senior loved one? Get more information at https://www.grandpad.net/thoh. GrandPad website: https://www.grandpad.net/ Social Media for GrandPad https://facebook.com/grandpad https://instagram.com/grandpad_social/ https://www.linkedin.com/company/grandpad https://www.youtube.com/channel/UCuFAJCb7_tTneM_ikABq08Q Hospice Navigation Services is here for you. If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com. Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Email: [email protected] More podcast episodes: The Heart of Hospice Podcast

After struggling with the demands of caring for her aging mother, Paige Wilson made a bold move, leaving her corporate career and becoming an entrepreneur with a big idea to help family caregivers. In this episode of the Happy Healthy Caregiver podcast, we learn about her disruptive care solution that utilizes technology to harness the strength of community. We also discuss normalizing asking for help, the longevity economy, downsizing possessions, and the self-care comfort of a McDonald’s diet coke. Show notes with product and resource links: https://bit.ly/HHCPod195 Receive the podcast in your email here: http://bit.ly/2G4qvBv Order a copy of Elizabeth's book Just for You: a Daily Self Care Journal: http://bit.ly/HHCjournal For podcast sponsorship opportunities contact Elizabeth: https://happyhealthycaregiver.com/contact-us/ The Happy Healthy Caregiver podcast is part of the Whole Care Network. Rate and Review the podcast: https://bit.ly/HHCPODREVIEW

Susan Combs will tell you she had a great dad. Her caregiving experience at the end of his life inspired her to give back to the veteran community. Susan’s dad Major General Roger E. Combs was a huge influence on her life. Roger battled with throat cancer related to Agent Orange for ten years, eventually dealing with a feeding tube toward the end of his life. A simple act - his request to eat pancakes - launched a non-profit organization that supports military veterans. Susan is the president of Combs and Company, based in New York City. Her movement Pancakes for Roger occurs every February. For every pancake-loving picture posted on social media post using the hashtag #PancakesForRoger, Combs & Company will make a donation to the University of Missouri School of Law Veterans Clinic which helps veterans and their families navigate the VA claims process and secure disability benefits when they are faced with obstacles along the way. Here’s some advice Susan gives to other end of life caregivers: Do one thing every day for yourself Bring in your “crew”, those friends who can support you Have the advance care plan conversations, even though it’s difficult Connect with Susan Combs and Pancakes for Roger: Website: pancakesforroger.org Book: Pancakes for Roger Social media: Instagram Facebook Twitter (X) YouTube Honor your veteran on their Wall of Honor: Interested in purchasing a GrandPad to stay connected with a senior loved one? Get more information at https://www.grandpad.net/thoh. GrandPad website: https://www.grandpad.net/ Social Media for GrandPad https://facebook.com/grandpad https://instagram.com/grandpad_social/ https://www.linkedin.com/company/grandpad https://www.youtube.com/channel/UCuFAJCb7_tTneM_ikABq08Q Hospice Navigation Services is here for you. If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com. Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Email: [email protected] More podcast episodes: The Heart of Hospice Podcast

After a 40 year hospice career, Barbara Karnes knows a thing or two about end of life care. Today’s special episode is part 3 of our 4 part series in honor of National Family Caregivers Month and National Hospice and Palliative Care Month. Barbara calls her introduction to working with the dying “divine intervention” that occurred because of a random connection with a hospice worker. She spent five years working at the bedside, eventually moving into administrative positions and management. As a hospice educator, she supports family caregivers and end of life workers alike. Highlights from Barbara’s interview include: A snapshot of Barbara’s advance care plan and why she thinks goodbyes are important Her recognition of how hard it was to balance work life and family life as a young mother How Barbara sees hospice work as a privilege Connect with Barbara Karnes: Website: bkbooks.com Blog: bkbooks.com Shop her products: bkbooks.com Socials: Facebook Instagram LinkedIn Twitter Pinterest YouTube Email: [email protected] Thank you to our series sponsor The Death Deck! Connect with the End of Life Deck and the Death Deck: Website: thedeathdeck.comhttps://thedeathdeck.com/ Shop: End of Life Deck Death Deck Socials for the Death Deck: Facebook IG Twitter (X) Hospice Navigation Services is here for you. If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com. Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Email: [email protected] More podcast episodes: The Heart of Hospice Podcast

Kendall Cloeter's passion for affordable housing and community revitalization shines through in her work with the Renovation Alliance. As a self-described "social worker by trade," Kendall brings a deep understanding of the challenges low-income homeowners face in the Roanoke Valley and a commitment to making a difference. Under Kendall's leadership, the Renovation Alliance has grown from a small group of 50 volunteers rebuilding just five homes 25 years ago to an organization that now aims to serve 100 homes annually. Kendall's dedication to preserving affordable housing and empowering homeowners to age in place with dignity is genuinely inspiring. Through a combination of volunteer labor and skilled professional partnerships, the Renovation Alliance tackles a wide range of critical home repairs, from simple tasks like installing grab bars to more complex projects like HVAC replacements. Kendall's insights into the impact of the Renovation Alliance's work are both heartwarming and eye-opening. By preserving homeownership and the equity that comes with it, the organization is helping to address issues of generational wealth and social justice. Moreover, the Renovation Alliance's focus on prioritizing the needs of older adults, individuals with disabilities, veterans, and single-parent households with young children underscores their holistic approach to community revitalization. Kendall's passion for this work shines through as she shares the stories of homeowners who have regained their independence and sense of pride in their homes while strengthening the fabric of the Roanoke community. About Kendall: Kendall Cloeter, a native of Roanoke, Virginia, is deeply connected to her community, where she now raises her family. Holding a Master of Social Work degree, Kendall discovered her passion for affordable housing while serving in AmeriCorps with Renovation Alliance, the organization she proudly rejoined in 2023. Her work in AmeriCorps ignited her commitment to preserving affordable housing and enhancing housing quality. During her time in Richmond, Virginia, Kendall spent five years addressing housing and homelessness issues with the Virginia Department of Housing and Community Development. This experience broadened her understanding of housing challenges and strengthened her dedication to making a difference. Returning to Renovation Alliance, Kendall applies her expertise to support her community and advocate for improved housing solutions. Kendall resides in Roanoke County with her husband, two children, and their dog, Franklin. Support the show Confessions of a Reluctant Caregiver Sisterhood of Care, LLC Website: www.confessionsofareluctantcaregiver.com Like us on Facebook! Tweet with us on Twitter! Follow us on Instagram! Watch us on Youtube! Pin us on Pinterest! Link us on LinkedIn! Tune in on Whole Care Network

Poetry and spoken word offer a unique and powerful outlet for processing grief, especially for dementia caregivers who often experience anticipatory grief before their loved one's passing. The act of expressing emotions through words, rhythm, and rhyme can be cathartic, providing a tangible form to intangible feelings. Writing or speaking about the complex journey of caregiving, the gradual loss of the person they knew, and the impending final loss, can help caregivers make sense of their experience. It allows them to acknowledge and validate their emotions, fostering a sense of acceptance and healing. Furthermore, poetry and spoken word provide a safe space for caregivers to explore the difficult emotions that may be associated with anticipatory grief, such as sadness, anger, guilt, and confusion. By giving voice to these feelings, caregivers can begin to release their emotional burden and find a sense of peace. The creative process itself can also be therapeutic. Choosing words, crafting metaphors, and finding rhythm can be a meditative experience, offering a much-needed respite from the demands of caregiving. Sharing their work with others, whether in a support group or through public performance, can foster connection and understanding, reminding caregivers that they are not alone. In essence, poetry and spoken word can be a lifeline for dementia caregivers navigating the turbulent waters of anticipatory grief, offering a channel for expression, healing, and connection. Learn more here: https://cleochilds.com

"If you give me a spa certificate but no gift of time to go with it, I'll probably never use it." As friends and family of Alzheimer’s and other dementia family caregivers, we want to give meaningful gifts that will actually be used and appreciated. Through our experiences and what we've learned from others on their caregiving journeys, we've developed five important categories of gifts that truly make a difference in a caregiver's life.

Why are broken hips so devastating? And more importantly, what can be done to prevent debility and death after a hip fracture? Listen to this in-depth conversation with Dr. Brittany Lamb and hosts/occupational therapists Emilia and Brandy about broken hips, what they mean for the whole body, and the one simple foundation of all good recoveries. #CareLab #carelabit Find Caregiver Training at https://www.higherstandardscaregivertraining.com/ Find Care Equipment solutions at https://www.asksamie.com/ Find more from Dr. Lamb at www.blambmd.com @CareLabPodcast @wholecarenetwork @Asksamie @higherstandardscaregiver @higherstandardscaregivertraining @blamb.md

I had the pleasure of listening to Traci Steelman, who joins us in this podcast to discuss the important topic of finance. Her insights are incredibly enlightening and provide valuable information that can help listeners navigate their financial journeys. Traci shares practical tips and strategies for managing personal finances, understanding investments, and planning for the future. Don’t miss out on this fascinating conversation!

Cuddle Cots and Cuddle Blankets allow families to spend more time with a loved one after a death, providing an opportunity for end of life workers to do death care better. Danielle Franck of Flexmort shares her personal experience with a Cuddle Cot in this interview. *Warning - This episode contains a description of the loss of a stillborn infant. It may not be for all listeners. Please take care of yourself. Danielle is the Business Development Executive of the US at Flexmort, a company that designs and manufactures flexible mortuary solutions for the storage and cooling of a body after death occurs. She is passionate about fostering open discussions around death and loss. Danielle’s personal story is a testimonial to the benefits of utilizing a Cuddle Cot. Cuddle Cots and Cuddle Blankets keep a body cool after death, enabling families to spend additional time with a loved one. That extra time creates space for meaningful goodbyes, rituals, and post mortem care that supports a healthy grieving process. The Cuddle Blankets are portable and can be used when a home funeral is planned. It’s also a great tool to use when there’s a plan for human composting or aquamation, and eliminates the need for dry ice when a family doesn’t want embalming. A personal quilt or blanket can be placed on top of the Cuddle Blanket to create a personal touch. Connect with Flexmort: https://cuddlecot.com/ https://www.linkedin.com/company/flexmort/ https://www.instagram.com/cuddlecot_/ https://www.facebook.com/CuddleCotTM Thank you to our series sponsor The Death Deck! Connect with the End of Life Deck and the Death Deck: Website: thedeathdeck.comhttps://thedeathdeck.com/ Shop: End of Life Deck Death Deck Socials for the Death Deck: Facebook IG Twitter (X) Interested in purchasing a GrandPad to stay connected with a senior loved one? Get more information at https://www.grandpad.net/thoh. GrandPad website: https://www.grandpad.net/ Social Media for GrandPad https://facebook.com/grandpad https://instagram.com/grandpad_social/ https://www.linkedin.com/company/grandpad https://www.youtube.com/channel/UCuFAJCb7_tTneM_ikABq08Q Hospice Navigation Services is here for you. If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com. Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Email: [email protected]