National Alliance for Caregiving for Friday, September 22, 2017
This Week In Caregiving
September 16-22, 2017
Caregiving in the News
The many faces of caregivers: a close-up look at caregiving and its impacts
Transamerica Institute | September 19, 2017
"Nine out of 10 non-professional family caregivers feel that it's important to provide a good quality of life for the person they care for, like helping, and enjoy spending time with the care recipient. However, many caregivers are providing care at their own risk. Fifty-five percent say that their own health is taking a back seat to the health of their care recipient. Sixty-nine percent gave little or no consideration to their own financial situation when deciding to become a caregiver. These findings are part of a new report."
Caring at home for a child with cancer can leave family members with risky tasks
The Washington Post | September 16, 2017
"Central lines, standard for children with cancer, lead directly to a large vein near the heart. They allow patients with cancer and other conditions to leave the hospital and receive antibiotics, liquid nutrition and even chemotherapy at home. But families must perform daily maintenance that, if done incorrectly, can lead to blood clots, infections and even death.
As more medical care shifts from hospital to home, families take on more complex, risky medical tasks for their loved ones. But hospitals have not done enough to help these families."
"The single most important opportunity of generations": A call to reinvent caregiving
Stanford Medicine | September 17, 2017
"There are 'at least a 100 million people who are directly affected by the need for care in America,' Poo, a tireless activist for domestic workers rights and a renowned family care advocate, said. She called reinventing how we care for one another the "single most important opportunity of generations. 'This is our moment to take caregiving from what has been a private, often isolated conversation into a national public conversation about the future,' Poo said."
Organizations caring more about caregiving benefits
Workforce (Ariel Parella-Aureli) | September 18, 2017
"With 18 to 21 percent of the workforce doubling as a caregiver and not getting paid for it, the financial strain is heavy, often causing people to take leave of absences from work or cut back their hours. More organizations are seeing these caregiving needs; they have become just as important as maternity and paternity leave."
Palliative care not yet a routine part of full cancer experience: new report
Markets Insider | September 18, 2017
"The Canadian Partnership Against Cancer (the Partnership) has released a report on the state of palliative and end-of-life care for people with cancer in Canada. The report finds that patients who could benefit from palliative care are not being identified, assessed and referred early enough in their cancer experience so that appropriate care can be part of treatment as soon as possible."
Participate in the Rare Disease Caregiving Study
Do You Care for Someone Rare?
To study the impact of rare disease on unpaid friends and family members who provide care (known as "family caregivers"), the Alliance and Global Genes, are launching a "first-of-its-kind" national snapshot of rare disease caregivers. This fall, the two groups plan to release a national survey aimed at collecting feedback from over 1,000 family caregivers of children and adults with rare diseases.
Learn more and take the survey here.
Cool Post of the Week
Making the Most of Life with Parkinson's: A Care Partner's Perspective
Prince William Living
Policy Alert
RAISE Family Caregivers Act
Senators Susan Collins (R-ME), the Chairman of the Senate Aging Committee, and Tammy Baldwin (D-WI) introduced the Recognize, Assist, Include, Support, and Engage, or RAISE, Family Caregivers. The RAISE Family Caregivers Act would require the Secretary of Health and Human Services to develop a strategy to support family caregivers. The bill would establish an advisory body to bring together representatives from both the private and public sectors to advise and make recommendations. The strategy would identify recommended actions that communities, providers, government, and others are taking and may take to recognize. and support family caregivers and be updated biennially." The Alliance is excited to sign on in support of this bill. Read the bill here.
In addition to this bill, the Alliance is excited to support many other pieces of legislation surrounding family caregivers. Find more information and the list of legislation here.
Get Involved
Linnaeus University is currently recruiting suitable persons in cooperation with the SFCCC (Nka)
Ongoing
Linnaeus University is recruiting for two positions to assist with the an EU Horizon 2020 project to research and develop support for young carers and two positions to assist with an International Research Program regarding Sustainable Care Systems for the future. Read more about the positions and apply here.
Public Comment for Healthy People 2030
Deadline: September 29, 2017
The U.S. Department of Health and Human Services (HHS) is soliciting written comments on the proposed framework for Healthy People 2030 that was developed by the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 (Committee). This framework includes the Healthy People 2030 vision, mission, foundational principles, plan of action, and overarching goals - and it will guide the selection and prioritization of objectives for Healthy People 2030. Learn more and comment here.
Participate in a research project on perception of caregivers!
Deadline: March 18, 2018
When people hear that you are a caregiver what do they tell you? This project will explore how people in the general population view caregivers through a 10 minute survey. The research is being conducted as part of a Dissertation Research project in the Department of Psychology and Neuroscience at the University of North Carolina, Chapel Hill. The study seeks to recruit 2,000 caregivers by March 2018. Learn more and participate here.
Caregiving Events
Aging and I/DD: Planning for Growing Older Webinar
September 26, 2017 | Webinar
Dr. Kathie Bishop will review the aging process and discuss what successful aging looks like for people with I/DD. Kathie will address planning and skill-building to support people with complex medical needs and adults with I/DD who experience cognitive or functioning loss, possibly related to dementia. Dr. Bishop will also describe how people with I/DD and their families can work together to advocate to and with health care professionals. Register here.
Us Against Alzheimer's: The National Alzheimer's Summit
October 3-5, 2017 | Washington, DC
The Summit will bring together the highest level experts in Alzheimer's and dementia research and policy. Leaders and advocates from diverse communities will explore compelling topics, including early detection and diagnosis, brain health and prevention, progress on our path to an Alzheimer's cure and the economic impact of the disease for those living with Alzheimer's and their care partners. Register here.
Save the Date: Solving America's Long-Term Care Crisis
October 4, 2017 | Washington, DC
Please join Genworth's 2017 Long Term Care Symposium in Washington, D.C. to discuss the long term care challenges facing families, states and the private insurance market.This event will focus on specific solutions- public policy, regulatory, and others- to stem the growing crisis. Register for this event here.
2017 ARCH National Lifespan Respite Conference: Take Off with Respite!
October 11-13, 2017 | Huntsville, AL
The conference theme,Take Off with Respite!, reflects the incredible history of the space industry in Huntsville, AL, also known as Rocket City USA. It also reflects the mission of the respite care network - to rise to meet challenges, heighten awareness, and push innovation to ensure a safe landing for the nation's 43 million family caregivers. Register here.
National Research Summit on Dementia Care: Building Evidence for Services and Supports
October 16-17, 2017 | Bethesda, MD
The National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers is a two-day meeting sponsored by the U.S. Department of Health and Human Services and the Foundation for the National Institutes of Health through private sector support. Register here.
Second Annual Caregiving Conference
November 10-11, 2017 | Chicago, IL
The Second Annual National Caregiving Conference brings together family caregivers, former family caregivers and professionals who work with family caregivers. Anyone interested in the caregiving experience and issues impacting family caregivers is welcome to attend. This year's conference theme is Our Boldest Hours: Before. During. After. Register here.
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To study the impact of rare disease on unpaid friends and family members who provide care (known as "family caregivers"), the Alliance and Global Genes, are launching a "first-of-its-kind" national snapshot of rare disease caregivers. This fall, the two groups plan to release a national survey aimed at collecting feedback from over 1,000 family caregivers of children and adults with rare diseases.
Learn more and take the survey here.
Cool Post of the Week
Making the Most of Life with Parkinson's: A Care Partner's Perspective
Prince William Living
Policy Alert
RAISE Family Caregivers Act
Senators Susan Collins (R-ME), the Chairman of the Senate Aging Committee, and Tammy Baldwin (D-WI) introduced the Recognize, Assist, Include, Support, and Engage, or RAISE, Family Caregivers. The RAISE Family Caregivers Act would require the Secretary of Health and Human Services to develop a strategy to support family caregivers. The bill would establish an advisory body to bring together representatives from both the private and public sectors to advise and make recommendations. The strategy would identify recommended actions that communities, providers, government, and others are taking and may take to recognize. and support family caregivers and be updated biennially." The Alliance is excited to sign on in support of this bill. Read the bill here.
In addition to this bill, the Alliance is excited to support many other pieces of legislation surrounding family caregivers. Find more information and the list of legislation here.
Get Involved
Linnaeus University is currently recruiting suitable persons in cooperation with the SFCCC (Nka)
Ongoing
Linnaeus University is recruiting for two positions to assist with the an EU Horizon 2020 project to research and develop support for young carers and two positions to assist with an International Research Program regarding Sustainable Care Systems for the future. Read more about the positions and apply here.
Public Comment for Healthy People 2030
Deadline: September 29, 2017
The U.S. Department of Health and Human Services (HHS) is soliciting written comments on the proposed framework for Healthy People 2030 that was developed by the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 (Committee). This framework includes the Healthy People 2030 vision, mission, foundational principles, plan of action, and overarching goals - and it will guide the selection and prioritization of objectives for Healthy People 2030. Learn more and comment here.
Participate in a research project on perception of caregivers!
Deadline: March 18, 2018
When people hear that you are a caregiver what do they tell you? This project will explore how people in the general population view caregivers through a 10 minute survey. The research is being conducted as part of a Dissertation Research project in the Department of Psychology and Neuroscience at the University of North Carolina, Chapel Hill. The study seeks to recruit 2,000 caregivers by March 2018. Learn more and participate here.
Caregiving Events
Aging and I/DD: Planning for Growing Older Webinar
September 26, 2017 | Webinar
Dr. Kathie Bishop will review the aging process and discuss what successful aging looks like for people with I/DD. Kathie will address planning and skill-building to support people with complex medical needs and adults with I/DD who experience cognitive or functioning loss, possibly related to dementia. Dr. Bishop will also describe how people with I/DD and their families can work together to advocate to and with health care professionals. Register here.
Us Against Alzheimer's: The National Alzheimer's Summit
October 3-5, 2017 | Washington, DC
The Summit will bring together the highest level experts in Alzheimer's and dementia research and policy. Leaders and advocates from diverse communities will explore compelling topics, including early detection and diagnosis, brain health and prevention, progress on our path to an Alzheimer's cure and the economic impact of the disease for those living with Alzheimer's and their care partners. Register here.
Save the Date: Solving America's Long-Term Care Crisis
October 4, 2017 | Washington, DC
Please join Genworth's 2017 Long Term Care Symposium in Washington, D.C. to discuss the long term care challenges facing families, states and the private insurance market.This event will focus on specific solutions- public policy, regulatory, and others- to stem the growing crisis. Register for this event here.
2017 ARCH National Lifespan Respite Conference: Take Off with Respite!
October 11-13, 2017 | Huntsville, AL
The conference theme,Take Off with Respite!, reflects the incredible history of the space industry in Huntsville, AL, also known as Rocket City USA. It also reflects the mission of the respite care network - to rise to meet challenges, heighten awareness, and push innovation to ensure a safe landing for the nation's 43 million family caregivers. Register here.
National Research Summit on Dementia Care: Building Evidence for Services and Supports
October 16-17, 2017 | Bethesda, MD
The National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers is a two-day meeting sponsored by the U.S. Department of Health and Human Services and the Foundation for the National Institutes of Health through private sector support. Register here.
Second Annual Caregiving Conference
November 10-11, 2017 | Chicago, IL
The Second Annual National Caregiving Conference brings together family caregivers, former family caregivers and professionals who work with family caregivers. Anyone interested in the caregiving experience and issues impacting family caregivers is welcome to attend. This year's conference theme is Our Boldest Hours: Before. During. After. Register here.
Do you have family caregiving news to share? Send to Jessica at jessica@caregiving.org
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