This Week in Caregiving
Monday, July 30, 2018
America Is Running Out of Family Caregivers, Just When It Needs Them Most The Wall Street Journal | July 20, 2018
"One-third of middle-age adults are heading toward their retirement years as singles. Women, in particular, are likely to stay or become single as they age. About 14% of frail older adults, or two million people, are without children and the number is expected to double by 2040, according to the AARP Public Policy Institute. "There's no natural caregiver for this population," says Grace Whiting, CEO of the National Alliance for Caregiving."
New Center for Caregiving Research, Education and Policy to Launch
EurekAlert | July 26, 2018
"The University of Pittsburgh Health Policy Institute recently launched the Center for Caregiving Research, Education and Policy - a unique resource that will bring together more than three decades of ongoing multidisciplinary research conducted at Pitt and UPMC. Researchers will focus on the impact of caregiving on family members both giving and receiving care...and the formulation of policies to support caregivers."
Congress: Support Access to Palliative Care for Aging Americans
The Hill | July 23, 2018
"I encourage Congress to pass PCHETA to ensure the health of the hospice and palliative care workforce. I also ask Congress to continue this momentum and pass the Rural Access to Hospice Act (RAH), which ensures that all Americans, regardless of their zip code, can access critical serious-illness and end-of-life care. By passing both PCHETA and RAH, lawmakers will be ensuring more Americans have access to a comfortable, dignified death when the time comes."
The Heartbreaking Stories of America's 43.5 Million Unpaid Adult Caregivers
Moneyish | July 20, 2018
"Six months ago, Rhodes lost her job of more than 19 years after a new, less sympathetic boss came in and took away that flexibility. 'The work culture changed, and I could no longer work and care for my mom,' she said. 'It's hard losing your job. It's hard finding a job at 64. And it's really hard to make up that $45,000 salary.'"
Kids Like You And Me: When Alzheimer's Moves Into The Family
Montana Public Radio | July 6, 2018
"Betta and Harry, who are members of the Health Occupations Students of America Club at Missoula's Big Sky High School, created a project to help young kids who have a relative living with dementia. The symptoms of Alzheimer's disease can be confusing to a child, so Betta and Harry decided to help educate kids about why a grown-up might start repeating questions, forgetting things, and losing the ability to do easy tasks, like eating or dressing."
Caregiving Policy Update
The Americans with Disabilities Act (ADA) is a landmark civil rights law that prohibits discrimination based on disability. To celebrate its 28th anniversary, please call or email your legislators to ask them to support the ABLE Age Adjustment Act. This bill would amend Section 529A(e) of the Internal Revenue Code to increase the eligibility for Achieving a Better Life Experience (ABLE) accounts for onset of disability from prior to age 26 to prior to age 46 so that millions more people with disabilities can take advantage of this important savings tool.
Despite nearly three decades under ADA law, people with disabilities still regularly encounter discrimination in many aspects of life, including lacking financial opportunities to save for their future and enhance their quality of life. Learn more about the ABLE Act HERE.
Get Engaged
Louisville Healthcare CEO Council Seeks to Optimize Caregiver Health Experience
The Louisville Healthcare CEO Council (LHCC) is seeking information about large-scale solutions for optimizing the healthcare experience of patients and caregivers. LHCC is interested in opportunities to transform the experiences of the patient and caregiver by assessing their unique needs, providing answers to healthcare questions, and quickly and easily connecting the patient and caregiver to resources. LHCC is seeking input from stakeholders in the family caregiver support ecosystem. LHCC has issued a Request for Information (RFI) to gain input on these issues. To receive a copy of the RFI, please email CaregiverSolution@LHCCinc.com.
New Research
The ARC Releases FSTRC State Coalitions Report
As part of its work on the Family Support Research and Training Center (FSRTC), The Arc of the United States (The Arc) provided grants to state and local chapters of The Arc to organize coalitions aimed at improving support to all families of people with disabilities and seniors in their states. The Arc provided funding to seven different chapters over three years to develop these coalitions and report on its successes and challenges. This report summarizes the findings from coalition meetings held across the country and provides recommendations for future Family Support Research and Training Center state coalitions to use to more effectively develop and implement coalitions. Read the report HERE.
Global Estimates of Informal Care
Dementia is a multifaceted disease which impacts society on many levels. We need to understand this impact if we are to advocate for a better life for people with dementia and their families and care partners all over the globe. This new report from Alzheimer's Disease International and Karolinska Institute aims to: 1) present global estimates of informal care hours, based on an extract from the database that was used in the 2010 and 2015 World Alzheimer Reports; 2) compare the global distribution of caregiver time estimates with that of costs; and 3) highlight gender patterns. Read the report here HERE.
Caregiving Events and Webinars
World Congress: Opioid Management, Treatment, and Recovery Summit
August 13-14, 2018 | Washington, DC
Hosted by World Congress, the Opioid Management, Treatment, & Recovery Summit brings together health care leaders to outline strategies and lay the foundation of lasting partnerships. This meeting brings together executives from provider and treatment organizations, health plans, and community organizations to develop ways to leverage partnerships to reduce the medical and financial effects of the opioid epidemic. Learn more and register HERE.
NASUAD's Home and Community Based Services Conference
August 27-30, 2018 | Baltimore, MD
Even while facing reduced budgets and growing demand for HCBS services, states continue to effectively engage and serve their citizens. The National HBCS Conference, hosted by the National Association of States United for Aging and Disabilities (NASUAD) highlights these achievements, allowing states to share innovative programs and present unique partnerships. The Conference will include federal, state, and local policymakers and those who administer HCBS programs. Learn more and register HERE.
Global Genes RARE Patient Advocacy Summit
October 3-4, 2018 | Irvine, CA
The RARE Patient Advocacy Summit is the can't-miss event of the year for rare disease stakeholders. The Summit is the largest gathering of rare disease patients, advocates, and thought leaders worldwide. Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. Learn more and register HERE.
Family Resource Network's National Caregivers Conference
October 11, 2018 | Woodbridge, NJ
The National Caregivers Conference, "Health, Technology, and the Family Caregiver," will bring innovative solutions to the increasing demand on family caregivers across the nation while showcasing projects that use technology to improve health and quality of life. This year's conference will feature the nation's first Caregiver Shark Tank. Learn more and register HERE.
BIO Patient and Health Advocacy Summit
October 25-26, 2018 | Washington, DC
Now in its seventh year, this event convenes patient advocacy organizations, academia, regulators, the biotechnology industry, and other healthcare stakeholders for two days of robust programming to discuss timely policy issues and share best practices. Learn from and network with key stakeholders in the healthcare ecosystem. Learn more and register HERE.
Caregiving.com's National Caregiving Conference
November 8-11, 2018 | Chicago, IL and Online
Caregiving.com's annual conference brings together family caregivers and former family caregivers from across the country. This year's conference theme, Our Best Selves, encourages us to look at how we do our best during an experience that feels like the worst. Their conference features presentations and panel discussions from family caregivers and former family caregivers. Learn more and register HERE.
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National Alliance for Caregiving www.caregiving.org
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