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Recommended by DeAunne Denmark MD PhD: "Enhancing the experience of caregiving by teaching mindfulness and compassion" Zen Caregiving Project is a non-profit organization based in San Francisco, California with over 30 years of experience in practicing and teaching mindfulness-based, compassionate caregiving. We offer courses, workshops, and training for professional, family, clinical, and volunteer caregivers. Through our work, we provide a context for public discussion of caregiving, loss, and death.

This resource is especially meaningful for me. Thank you for sharing it!

"ARCHANGELS is a national movement and a platform that is reframing how caregivers are seen, honored, and supported using a combination of data and stories. We believe shining a light on caregivers so they feel seen, and honored, is the first line of care. Loving on them and thanking them for the work they do is the next step. And step three is lifting them up by providing resources that actually help. Our job is to find the things that make the good things about being a caregiver 'good-er,' and make the bad things better. "

A large portion of the population is involved in providing unpaid care for a family member. However, not much is known about what caregivers are doing on a daily basis, what services and resources they use, and how they balance caregiving with work and personal life. Researchers at the MIT AgeLab has conducted an exploratory study to learn more about caregivers and the caregiving experience. The research process and results are presented in this website.

Based on your stories and feedback, Best Buy has made it a priority to align our benefit programs with caregiver needs to help you address these challenges. This guide won't cover everything you need to know, but I hope it gives you a place to start learning. I also hope it gives you comfort knowing that Best Buy supports you and those you care about. We're in this together.

"Atlas of Caregiving's mission is to catalyze a transformative change for family caregiving through innovative research, practical solutions, and rich collaboration. Atlas CareMaps help you better understand and strengthen your care ecosystem. LEARN MORE"

"Patient-Focused Drug Development (PFDD) is a process that provides patients and caregivers impacted by a rare disease the opportunity to share their experience with those directly involved in the drug development process. The Rare Disease Cures Accelerator, a Data Analysis Platform (RDCA-DAP®), a collaboration between the National Organization for Rare Disorders (NORD®), Critical Path Institute (C-Path), and the US Food and Drug Administration (FDA), can strengthen PFDD efforts to support life-saving and life-changing outcomes. This webinar is intended for patients, caregivers, advocates, students, and those who are interested in learning more about PFDD as well as efforts to accelerate research and drug development in rare diseases, such as the RDCA-DAP. For more information on RDCA-DAP, visit: www.rarediseases.org/rdca-dap. SHOW LESS "

"Alzheimer's Advocate, Family Caregiver, and Health Policy/Delivery/Research/Technology Thought Leader"

Welcome to the Empowered Patient Podcast with Karen Jagoda. This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients. Topics on the show include the emergence of personalized medicine and breakthroughs in genomics advances for aging in place using big data from wearables and sensors transparency in the medical marketplace challenges for connected health entrepreneurs The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors.

"Welcome to the Empowered Patient Podcast with Karen Jagoda.  This show is a window into the latest innovations in digital health and the changing dynamic between doctors and patients. Topics on the show include the emergence of personalized medicine and breakthroughs in genomics advances for aging in place using big data from wearables and sensors transparency in the medical marketplace challenges for connected health entrepreneurs The audience includes researchers, medical professionals, patient advocates, entrepreneurs, patients, caregivers, solution providers, students, journalists, and investors."

""This year, patients, families, caregivers, medical professionals, NORD staff and other stakeholders participated in over 25 Rare Disease Day advocacy events in 23 states.""

Recommended by Tyler Orion: Understanding the Rare Disease Ecosystem "Rare diseases (RDs) are different from more common ones, often presenting special challenges for patients, physicians, caregivers, payers, and pharma companies. Those differences and challenges are mostly a consequence of rarity (of patients, experts, data, resources, etc.) and the typically high disease burden. "

"Heidi Rataj is an award-winning documentary producer and director and a caregiver for her mom.  Heidi talks about her own fear of aging and the search for a new narrative for seniors as they age.  While we need to be respectful of all journeys, activating seniors to allow them to accomplish goals is key to a healthier individual and society.  She also points out how digital technology plays a role in coordinating care and enabling people to age in place. @UCSDHealthyAging"

"our Choices and Information Sharing Smart Patients gives you important choices about controlling your personal information - whom you let see it, how much, and when. We encourage you to make these choices thoughtfully. Your choices include: Whether you want to browse the website anonymously or create an account and provide us your personal information; Whether you want to join Community Discussion relating to a particular condition; How much health or other personal information you want to share with other patients and caregivers through Community Discussion; Whether you want to participate in surveys we may offer from time to time. The nature of the survey and the form in which the results will be disclosed will be explained to you in advance; Whether you want to participate in any other opportunity we may offer to share your health information with others. For example, if we think you have written something in a Community Discussion that would be particularly helpful to others facing the same condition, we may invite you to post an excerpt from your comments on our public website. Any such opportunity would be clearly explained to you in advance, and whether you decide to share your information would be entirely up to you; Discontinuing active participation or closing your account at any time."

"Dedicated defender of the beauty of humanity, the senses and of a life well lived to the end, palliative care physician and activist BJ Miller brings his expansive vision to bear on the state of the end of life experience. BJ shares his take on the current situation and offers possible routes for how we might close the gap between intention and action in our search for generative solutions that reshape how we think about illness, dying and caregiving."

Recommended by DeAunne Denmark MD PhD: Virtual Conference - On Demand - June 16 - November 17, 2020 A wide range of topics will be covered, but all relate to how compassionate care can support goals like workforce well-being, patient experience, safety, quality and innovation, as well as additional content to support caregivers and leaders during this challenging time.

Recommended by DeAunne Denmark MD PhD: "Most people who need palliative care are not dying. They are living, and often for a very long time with serious illnesses.... They have a tremendous burden of suffering and caregiver distress, but they are not dying. Palliative care was an answer to that gap. It was recognizing that living with a serious illness nowadays is almost always a chronic disease. No matter how long people have to live, they deserve the same attention to quality of life, treatment of symptoms, management of depression, support for their families, and support for social issues like financing and housing. It should be based on need, not prognosis." -- Diane Meier, MD

Our 2020 virtual Reimagine event highlighted ISB's cutting-edge brain health research and our unique approach to studying and treating Alzheimer's and other diseases. Specifically, we featured some of our latest findings, the promise of multimodal therapies to slow and even reverse dementia, and testimony from caregivers who watched their loved ones succumb to Alzheimer's disease.

" "The Future Patient, The Future Doctor: A Healthy Relationship" Over the past year, a select group of patients has coalesced to form something groundbreaking - Project Apollo, a movement to build a robust, longitudinal picture of health and wellness for each patient. Future patients will take an active role in their own health, co-creating a team of healthcare providers and using data from family, caregivers, community, and the environment to guide them through a quantified journey of health. Sharon Anderson Morris, Sr. Director, SNS Programs, and CEO, FiReFilms Mary Beckerle, CEO, Huntsman Cancer Institute Larry Smarr, Founding Director, Calit2, (a UC San Diego / UC Irvine partnership) Moderated by Michael Kurisu, Director, Project Apollo and UCSD Center for Integrative Medicine "

"Build a Personal Care Community Livpact helps you organize and connect family, friends, professional support, community services and helpful resources."