Organization: Caregiving.com
Highlights: When you care for a family member or friend, we care for you. We’re a community of supportive individuals caring for a family member or friend. We care for parents, spouses, siblings, grandparents and anyone we consider family. We care for you before, during and after caregiving. Create your free account to join our daily, weekly and monthly chats, to start your blog and to connect with others who understand.
Organization: Family Caregiver Alliance
Highlights:
Founded in the late 1970s, Family Caregiver Alliance is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home.
FCA, as a public voice for caregivers, shines light on the challenges caregivers face daily and champions their cause through education, services, and advocacy.
The services, education programs, and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving.
Organization: VA Caregiver Support
Highlights: Caregivers play an important role in the health and well-being of Veterans. The Caregiver Support Program offers training, educational resources, and multiple tools to help you succeed. Please contact our Caregiver Support Line for advice on being a caregiver.
Support Group: Daughterhood Circles
Highlights: Daughterhood circles are small groups that get together regularly to hang out, relax and help each other navigate caring for aging parents. A growing aging population means more people — particularly women — find themselves with unexpected responsibilities for a frail parent’s care. Daughterhood circles aim the power of community and friendship directly at the challenges that come with this new life phase.
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Resource Type: App
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Carium guides users to better health by getting to know them and their goals and leveraging behavioral medicine expertise to provide personalized guidance, support, and resources. Carium enables stronger connections with family and caregivers so they can be involved and stay informed as a patient’s proxy, and with doctors, fitness coaches, and others who contribute to a users’ health so they’re on the same page and easy to reach.
Thoughts:
Carium gains a comprehensive view of each user — through clinical EMR data, patient-generated data from wearables, the environment, and questions offered at contextually relevant moments — and provides personalized, timely notifications and actionable insights. Carium also facilitates asynchronous care delivery through voice, text, photos, and video.
Resource Type: App
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Tunza is a software platform making it easy for friends to help caregivers in meaningful ways during moments of crisis. From meals and transportation to emotional support.
Thoughts:
Tunza streamlines the process associated with organizing a network of supporters and managing everyday tasks. Friends can make task-based microdonation purchases from our network of service providers and online merchants.
Resource Type: App
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The Transformative Power of Storytelling
Changeful is a mobile, video-based, behavior change-oriented platform designed to help alleviate the high medical costs incurred by family caregivers and professional care workers.
Thoughts:
Changeful provides payers, managed care and professionals caregiving organizations with participant insights and robust, anonymized data in a customizable dashboard.
Changeful engages caregivers with storytelling videos dealing with the problems they face every day. Tailored videos provide specific, actionable information. Alerts, live coaching, and an in-app social connection platform keep them motivated and involved.
Medical content is informed by the University of Southern California Keck School of Medicine.
Resource Type: App
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A social caregiving application that brings families together around the care of their loved ones.
Thoughts:
Nice community/family relationship toolkit
Organization: Caring.Com
Highlights: Senior Care Reviews and Resources. Find Senior Living Near You
Organization: Caregiver Action Network
Highlights: iCAN Tech helps you sort through the world of high-tech caregiving products.
Column: Care Transitions
Highlights: Journal of The Society for Post-Acute and Long Term Care Medicine. Mary Anne Sterling has several columns here: Mobilizing Former Caregivers and Adults Daughters: Our Nation’s Front Lines of Caregiving in the Era of Alzheimer’s
Blog: Patient Engagement Tip of the Month
Highlights: Geri Lynn Baumblatt coordinates and writes for this blog
Blog: Health Hats
Highlights: Danny van Leeuwen – Empowering people as they travel together toward best health. Use search terms: Caregiving, caregiver to find relevant posts
Blog Post: A New Era in Alzheimer’s Research has Arrived, and There is a Place at the Table for Patients and Family Caregivers
Highlights: By MaryAnne Sterling on PCORI’s blog about the Patient-Powered Research Network (PPRN) focused on Alzheimer’s disease and other dementias.
Article: Caring for the Caregiver in the Emergency Department
Highlights: Assessing a caregiver’s roles, capacities, vulnerabilities, and strengths, when done well, is a nonjudgmental process conducted by expert staff members who have the time and training to appreciate these often complex situations as well as a deep, practical understanding of possible solutions.
Article: Mobilizing Former Family Caregivers
Highlights: Written by MaryAnne Sterling, published in Caring for the Ages in December 2017
Article: Communication at Transitions-One Audacious Bite at a Time
Highlights: Written by Danny van Leeuwen in the Journal of Participatory Medicine. our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us. During this journey, we transition from one setting to another, from one team to another, repeatedly. Communication knits this maze of actions, interactions, and transitions together. At its core communication is two or more people or parties sharing some information via some channel (voice, paper, digital, dramatic), one time or several times in a particular setting, hoping to accomplish something that moves us along in our health journey.
Article: Adult Daughters: Our Nation’s Front Lines of Caregiving in the Era of Alzheimer’s
Highlights: Written by MaryAnne Sterling in Caring for the Ages. Adult daughters are overwhelmed when it comes to Alzheimer’s caregiving. The health care system, policymakers, advocacy groups, communities, and faith-based organizations need to work with us to create real solutions. The expectation that adult daughters will automatically assume the role of caregiver for their aging parents with Alzheimer’s is not a solution.
Blog Post: Time to Go Home: Hospice Care Transitions
Highlights: Regina Holliday writes
It is a pattern oft repeated in a lifetime:
You go to the doctor’s office, get a prescription, and go home.
You go to the urgent clinic, get care, and go home.
You go the hospital, get better, and go home.
But some people are very surprised when they go to inpatient hospice, are stabilized and told to go home.
Blog post: A caregiver is [not] a caregiver, is [not] a caregiver
Highlights: Danny van Leeuwen writes: Whether you are a person with a chronic condition, a caregiver, a clinician, a health technology professional, insurer, policy wonk, or investor, understanding the dynamics of family caregiving will impact your success and effectiveness.
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-Patient with Multiple Sclerosis
-Care partner for several family members’ end-of-life journeys
-Nurse for 40+ years
-Informaticist
-QI leader
-Husband, Father, Opa, Musician
I specialize in patient/ caregiver/ clinician/ community relationships and the intersection between technology and the health journey.
Resource: Atlas CareMaps
Highlights:
Caregiving happens within an ecosystem. Caregivers and the ones they care for are situated in systems of support, connected to others through networks and webs of relationships, shared experiences, and interactions.
At Atlas of Caregiving, we believe that in order to improve systems, we must first understand them. In this spirit, we’ve made it our mission to create practical tools that build on our understanding of the experiences of family caregivers while helping families and professionals better understand, and ultimately improve, their own lives. The first of these tools is the CareMap.
Resource: Implementing Family- and Patient-Centered Rounds
Highlights:
Each hospital’s setting is unique, so there is no best way to implement patient- and family-centered rounds. We are happy to share what we have learned from our experience at Cincinnati Children’s and from teaching patient- and family-centered rounds at conferences and workshops.
Understanding each other’s points of view is an essential starting point. We have learned that when physicians, nurses, allied health professionals and patients and their families discuss patient- and family-centered rounds, they are more likely to implement them.
We have created a facilitator guide and a series of video vignettes to assist you in your implementation strategy. We hope these tools lead to a rich discussion among you, your colleagues and your patients and their families and will assist you in successful implementation of patient- and family-centered rounds at your institution.
Resource:
Highlights: From the Agency of Healthcare Research and Quality (AHRQ) – Medication Therapy Management (MTM) is a patient-centric and comprehensive approach to improve medication use, reduce the risk of adverse events, and improve medication adherence. These health literacy tools can improve communication with MTM patients.
Resource: The Patient Revolution
Highlights:
Stories can inform, infect, irritate, and ignite a chain reaction that makes the status quo unsustainable. Stories are the first step in a push for healthcare that is careful and kind to each patient and community.
Our mission is to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.
Tool: Roobrik Decision Aids
Highlights: Free online decision tools to help patients and their families make difficult health and care choices with clarity and confidence.
Resource: Engaging Family Caregivers as Partners in Care Transitions
Highlights: A United Hospital Fund Special Report by Carol Levine and others. The goal: to take on the challenge of examining how chronically ill patients are transitioned
from one care setting to the next, and how that transition could be improved by systematically involving family caregivers and arming them with better information, training, and support. Specific strategies to achieve that goal were:
• Inclusion of the family caregiver in medication reconciliation;
• Identification of post-discharge patient needs and discussion of patient discharge options with the
family caregiver;
• Discharge preparedness (training, expectations of the day of discharge);
• A well-orchestrated day of discharge;
• Closing the loop, including post-discharge communication with the family caregiver and the
receiving agency
Get Involved: iCare Team
Highlights:
Get Involved: If you are 18 years or over, you can help the Brain Health Registry speed up the discovery of treatments for Alzheimer’s, Parkinson’s, depression, PTSD, and other brain disorders. It takes just a few minutes to get started. For most people, participation takes less than three hours per year.
Get Involved: UsAgainstAlzheimer’s
Highlights: UsAgainstAlzheimer’s Action (UsA2 Action) is a 501(c)(4) advocacy organization. UsA2 Action is driven by passion and purpose and is powered by individuals living with dementia and their care partners. We forge innovative and comprehensive solutions to Alzheimer’s. We press for greater urgency and collaboration from government, industry and the scientific community in the quest for an Alzheimer’s cure. We act on those beliefs through strategic and disruptive investments in infrastructure, big data and national and global convening platforms. And we mobilize communities most deeply affected by the disease, including African Americans, Latinos, women, caregivers, veterans, the faith community and researchers.
Get Involved: Patient Centered Outcomes Research Institute (PCORI)
Highlights: PCORI’s patient-centered, stakeholder-driven approach to healthcare research not only shapes the research that we fund, but also influences changes in the culture of research more broadly.
Resource: Galaxy: Our Data. Our Voice. Our Future.
Highlights: Accelerating Alzheimer’s Research & Cures by Harnessing Our Collective Insights
