In
Memory Gail
Gibson Hunt 1945-2022 The National Alliance for Caregiving joins with
the entire caregiving advocacy community in mourning the passing
of our founder, Gail Gibson Hunt, who died peacefully at her home
on January 13th. Her vision and passion shaped caregiving, here in
the U.S. and abroad. Gail founded the National Alliance for
Caregiving in 1996 as a way to address and meet the needs of
caregivers in an aging America. Under her leadership, a group of
national organizations worked together to create a new
association that could address the public policy needs of
families and quantify the impact of one of the largest unpaid
workforces in our society. Gail brought the organization from its
humble beginnings to the position of national powerhouse and
global expert. Beginning with the 1997 ground-breaking research
study, Caregiving in the U.S., conducted in partnership with
AARP, Gail made sure NAC played a pivotal role in shaping public
policy for family caregivers and those in their care. During her
tenure as president and CEO, she expanded NAC’s work beyond
aging-related eldercare issues to include new research on the
economic impact of caregiving, the business case for supporting
family responsibilities in the workplace, children as caregivers,
and new disease-specific work in multiple sclerosis, diabetes,
mental health, rare disease, cancer, and Alzheimer’s disease. From: National Alliance for
Caregiving | January 25, 2022 |
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How
Smart Tech Around the Home Can Help Seniors
and Their Caregivers Amy Goyer has been a caregiver most of her adult
life. At 20, she began caring for her ailing grandparents. Then
her mom had a stroke at 63, and her dad developed Alzheimer’s.
Later, her sister was diagnosed with Cushing’s disease. Over the years, Goyer crisscrossed the country to
care for her loved ones. At some points, they lived with her.
Other times, she monitored them from afar. Now AARP’s national
family and caregiving expert, Goyer, 61, says the most notable
change in caregiving in her experience has been technology —
particularly the smart tech that many seniors rely on to stay
safe in their homes. “New technologies are coming up all the time, and
people are always sending me things to look at,” says Goyer,
who oversees the organization’s Family Caregivers
Discussion Group on Facebook, which has more than 8,000
members. According to a 2020 report from
AARP and the National Alliance for Caregiving, approximately 48
million Americans are caring for someone over the age of 18.
About half of all caregivers used at least one piece of
technology or software to assist with their responsibilities. Goyer recommends getting a medical alert system as
a basic starting point for caregivers of the elderly. You may
remember the phrase “I’ve fallen, and I can’t get up!” from a
commercial that premiered in the late 1980s. That system,
LifeCall, is still one of the most popular ways to keep seniors
safe in their homes. Here’s how it works: People who need
monitoring will have a pendant or wristband affixed to them. If
they have an accident, such as a fall in the bathroom, they can
push the alert button to call for help. There have been advances in this arena, such as
radar fall detectors that can be placed throughout the home to
monitor motion. If a person falls, the proper authorities will
be notified without the person having to push a button. | From:
Washington Post | Published: January 20, 2022 |
| 'Caregivers
Should Be a Priority': Advocates Fight For Recognition of
Caregivers as Essential, Frontline Workers When the coronavirus pandemic went into full force
in early 2020, health care workers were lauded for being the
frontline warriors against the highly contagious and deadly
virus. Nurses, doctors, EMTs, and other hospital staff
were in the thick of the most concentrated centers of
infection, prompting social media campaigns and PR efforts to
show gratitude toward medical staff. But health care workers are more than those who
work at hospitals and doctors’ offices. In many cases, those
providing the most immediate care are family members and
in-home caregivers who are not only trying to keep themselves
healthy, but they’re also working tirelessly to keep family
members safe. “Many times the care we have here in California
the majority of care is done by us: family members and elder
caregivers. We are an essential part of the health care
system,” said Dr. Donna Benton, research associate professor of
gerontology at USC and director of the USC Family Caregiver
Support Center and Los Angeles Caregiver Resource Center. Benton, along with other community advocates,
spoke at a press conference on Thursday, Jan. 13 about the
massive community of caregivers in California, a vast majority
of whom are women, immigrants, and/or people of color. According to Benton, there are 4.5 million family
caregivers in California, meaning that there are millions of
caregivers in the state who have been struggling accessing
personal protective equipment (PPE) and other essential needs
and services to better care for their patients during the
pandemic. | From:
Asian Journal | Published: January 19, 2022 |
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NAC
Releases New Report: Caregiving in a Diverse America:
Understanding the Systemic Challenges Facing Diverse Family
Caregivers in the U.S. The National Alliance for Caregiving is proud to
present Caregiving in a Diverse America: Understanding the
Systemic Challenges Facing Family Caregivers in the U.S., a
new report conducted with sponsorship by Amgen, Inc., with
support from the Diverse Elders Coalition and in partnership with
the National Minority Quality Forum. Based on a secondary
analysis of the survey results found in Caregiving in the U.S.
2020, the data presented includes multiple logistic
regression analyses by Dartmouth College researchers. The report highlights
significant disparities in support, caregiving intensity, health,
and financial impacts among African American, Hispanic and Asian
American and Pacific Islander caregivers, LGBTQ caregivers, as
well as caregivers across different income brackets and
geographical areas. While conducting the research for this
report, it became clear that more inclusive methods of data
collection are needed to inform research on the needs and
possible supports and services that can be provided to diverse
family caregivers. The findings in this report highlight: · African
American, Hispanic, Asian American/Pacific Islander, LGBTQ, rural
and socioeconomically diverse caregivers; · Disparities
in living situations, financial status, caregiving activities,
self-reported health, and information and services used; · Personal
stories of diverse family caregivers that provide human context
to the data; · Next steps
in ensuring data collection and research is inclusive of and
equitable to all family caregivers; · Future
policies and improvements to supports, services and the health
care system that can better the caregiver experience for diverse
populations. |
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Addressing
the Needs of Diverse Family
Caregivers for Older Adults This 20-page report is the product of a series of
activities conducted by the Diverse Elders Coalition (DEC) and
its members’ organizations, and in partnership with the National
Alliance for Caregiving, to better understand and highlight the
lived experiences of diverse family caregivers for older adults.
It highlights key findings from 300+ diverse caregivers for older
adults from the DEC’s constituent communities, including racially
and ethnically diverse people; American Indians and Alaska
Natives; and lesbian, gay, bisexual, transgender and
queer/questioning (LGBTQ+) people as they provide care through
the pandemic. The goal of the full length report is to offer
research and recommendations to help ensure services and supports
for caregivers intentionally address health disparities and
systemic barriers that diverse family caregivers for older adults
face. |
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The
National Alliance for Caregiving Releases a White Paper Analyzing
Existing Incentives for Caregiver Services Caregivers are not well integrated into U.S.
healthcare systems. Across care settings, caregivers lack formal
and consistent roles on the care receiver’s care team and can
struggle to manage their care recipient’s needs with their own.
Only 29 percent of caregivers report being asked by a healthcare
professional about their caregiving needs; this rate drops to 13
percent when the question referred to what the caregiver needed
to be able to care for themselves (2020
Report of Caregiving in the U.S.; AARP and National Alliance for
Caregiving). |
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Lessons
from the Workplace: Caregiving During COVID-19 In the first article of its
new Spotlight series, Social Innovations in Caregiving, the
National Alliance for Caregiving details the hardships the
COVID-19 crisis magnified for millions of working caregivers and
explores the mismatch between what family caregivers need to meet
the demands of working while caregiving and what benefits and
supports employers offer. “The pandemic has exposed the reality
that working Americans must too often choose between caring for
loved ones and holding onto their jobs,” says Grace Whiting, President,
and CEO of NAC. Offering potential solutions on how employers can
address this mismatch, NAC advances recommendations for workplace
policies and practices that employers can provide to caregivers.
These recommendations include flextime, compressed workweeks, and
public policy strategies to help reinforce workplace solutions
such as redefined paid leave criteria. |
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NAC's
Circle of Care Guidebook for Caregivers of Children with Rare
and/or Serious Illnesses The National Alliance for Caregiving recently
produced The Circle of Care Guidebook for Caregivers of
Children with Rare and/or Serious Illnesses, resource designed
in partnership with Global Genes and with support by Mallinckrodt
Pharmaceuticals to provide caregivers with the support, services
and specialized information they need to care for a child with a
rare and/or serious illness. This guidebook offers an extensive
list of resources to help a caregiver in any situation throughout
the entirety of their journey as a rare disease caregiver,
compiled by those in the rare disease space and caregivers
themselves. This list is supplemented by the specialized information
needed in order to care for a child with a rare and/or serious
illness. If you or someone you know cares for a child living with
a rare and/or serious illness, make sure to check out the
guidebook at the link below. You’ll learn about: · The process
of getting an accurate diagnosis for a rare and/or serious
illness; · Genetic
testing, clinical trials and support groups that can help; · Information
on treatment and care coordination with specialized teams; · Understanding
the cost of care and treatment; · Advocating
for your child, their care and in their disease space; · Empowering
your child to manage their rare and/or serious illness through
all aspects of their life, including when they become an adult;
and · Caring for
yourself and your family. There is also an appendix with a comprehensive list
of online resources, supports and services for caregivers, the
child living with the rare and/or serious illness, and his or her
family that are referenced throughout the guidebook. Click on the button below to access the Guidebook. |
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Selflessness
in Practice: A Conversation on Caregiving with MSNBC’s Richard
Lui & AARP’s Jean Accius January 27,
2022 | 4:00-5:00 PM ET | Online Whether for a child, parent, loved one, or self, the
difficulties of these times have revealed so much about an often
thankless job — caregiving. Exploring MSNBC’s Rich Lui’s “anti-self” help book, Enough
About Me, and in conversation with caregiving expert Dr.
Jean Accius of AARP, we will discuss practices on how to be
selfless in a world that asks so much of us. Come to learn from and engage with these brilliant
thought leaders. We hope to see you there! |
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Health
Affairs Briefing: Caring for Those with Complex Needs January 28,
2022 | 1:00-2:30 PM ET | Online For the past year, Health Affairs has published a
series of articles on Health Affairs Forefront (formerly Health
Affairs Blog) on the topic of caring for people with complex
health and social needs, a field
that has gained prominence over the last 10 years. The goal of
the series has been to: elevate the science, policy and best
practices relating to this high-need population; inform our
readership about that progress; and provide a platform for
leading voices to raise important questions about what comes
next. The result has been a diverse and impressive collection of
work examining the many pathways to improved care and responsive
policymaking. These efforts have been defined by their
flexibility, innovation, and a willingness to reach across
multiple medical specialties, hospitals, home health agencies, as
well as social service providers and behavioral health
interventions. You are invited to join Health Affairs
Editor-in-Chief Alan Weil on Friday, January 28, 2022, for a
virtual forum on the topic, spotlighting key elements from the
collection and elevating voices of patients, caregivers and
advocates who know firsthand the practical and policy challenges
of caring for this growing element of America’s health care
population. To
register for the event, click here. To
learn more, click below. |
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Join NIH
UNITE's Listening Sessions The UNITE initiative was
established to identify and address structural racism within the
National Institutes of Health (NIH)-supported community and the
greater scientific community. NIH’s initiative aims to establish an equitable
and civil culture within the biomedical research enterprise and
reduce barriers to racial and ethnic equity in the biomedical
research workforce. WHAT: The listening sessions are part of UNITE’s
efforts to listen and learn. Key stakeholders at all levels of
the biomedical research community who work and serve in diverse
settings and hold various roles, and who partner and collaborate
with research teams have important experiences and insights to
share. The insights that you share will provide valuable
information on the full range of issues and challenges facing
diverse talent within the scientific and administrative workforce
and will help develop priorities and an action plan. Please find the schedule of listening sessions
below and register for a session that best aligns with your
affiliation. Wednesday, January 26, 2022 — 6:00 p.m. –
7:30 p.m. ET — Students and Trainees [register for this session here] Thursday, January 27, 2022 — 3:00 p.m. – 4:30
p.m. ET — Research Staff [register for this session here] Tuesday, February 1, 2022 — 1:00 p.m. – 2:30
p.m. ET — Colleges and Universities [register for this session here] |
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Dole
Caregiver Fellows Dole Caregiver Fellows are the heart and soul of the
Elizabeth Dole Foundation. They are active military and veteran
caregivers from across the nation who are carefully selected each
year to represent the Foundation in a formal capacity. Through the Dole Caregiver Fellowship, caregivers
receive support, training, and a platform to address the issues
impacting the community. They also share their stories directly
with national leaders and decision makers within the business,
entertainment, faith, and nonprofit sectors to transform the
culture of care in our country. Applications are due March 1. To learn more
about the fellowshipand apply, visit the link below. |
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The Pope
Scholarship The John and Betty Pope Caregivers Scholarship is
designed to support students engaged in informal caregiving
roles, while helping them learn about the importance of
caregiving and ultimately reach their higher education goals. The
scholarship encourages recipients to explore career opportunities
within the care economy, as well as bring strengths and skills
developed through their personal caregiving experiences to other
fields. The scholarship is open to full-time Georgia
Southwestern State University students who are providing care for
a loved one or pursuing a career related to caregiving. Students
are awarded funding to cover in-state tuition, with additional
funding allotted to on-campus housing and books as needed. Caregiving can overshadow students’ academics and
other personal responsibilities. The Pope Scholarship alleviates
some of the financial burdens for students while facilitating
meetings, projects, and community engagement to better their
understanding of caregiving. Scholarship applications are due March 15. To
learn more about the scholarship and its requirements, visit the
link below. |
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PATIENT AND
CAREGIVER STUDIES |
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Cancer
Support Community invites you to share
your experience The Cancer Support Community (CSC) believes in
addressing the emotional, physical, practical, and financial
needs of those impacted by cancer. The Cancer Experience Registry
(CER) survey captures these experiences to ensure support
services better reflect patient and caregiver needs, enhance
cancer care, and influence healthcare policies. The
survey is open to breast cancer and all other cancer patients,
survivors, and caregivers over the age of 18. To learn more about the CER, click here. To
take the survey, click the red button below. |
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Yale
Families Coping Together With
Alzheimer's Disease Study If you are at least 18 years old, and you have a
parent at least 55 years old and has early stage dementia, you
and your parent may be eligible to participate in a free and
confidential study to understand your experience coping with
dementia together. Participation involves one 2-hour interview
session and a one 2-hour interactive session with you and your
parent completing tasks together now and one year later.
Interview and interaction sessions can be completed over the
phone, by mail, or on the computer. Compensation of up to $600 for completing all
sessions. To learn more or to see if you are eligible to
participate, please contact Kathleen Williams at (203)641-5373
or email her at kathleen.williams@yale.edu. |
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Alzheimer’s
Disease and Related Diseases (ADRD) Partner/Spousal Caregiver
Study This study by Rush University's College of Nursing
will explore how partner/spousal caregivers manage/deal with the
challenges of caring for persons with Alzheimer’s disease and
related dementias (ADRD). Additionally, the study will explore
the feasibility and acceptability of recruiting, interviewing,
and consenting partner/spousal caregivers using technology. To participate in this study, you are must: · be at
least 65 years old · self-identify
as a partner/spousal caregiver · have a
partner/spouse who has been diagnosed with Alzheimer’s disease by
a healthcare professional · have a
partner/spouse is at least 65 years old · have a
partner/spouse resides in the same household If you volunteer to be in this study, your
participation will consist of an online interview using Zoom.
Your participation would involve one interview session, which
will take approximately 60 minutes of your time. · Participants
will receive a $25.00 Target gift card upon completion of the
interview. Participation is completely voluntary, information
collected is protected, and participants may terminate at any
time. For more information or to volunteer participation
please contact: Shandra Burton, MSN, RN, PhD Student Rush University, College of Nursing (463)701-1565 shandra_burton@rush.edu |
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Black
Male Dementia Caregiver Burden Study GW School of Medicine and Health Sciences is
actively recruiting Black men aged 30-85 who are either
caregivers or non-caregivers of loved ones diagnosed with
dementia. Participants will engage in a series of questionnaires,
surveys, and a focus group, and can receive up to $125 in
compensation. Click the link below for additional
information. |
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Intuition
Study Biogen has officially opened enrollment for the
virtual Intuition Study in the United States. Using everyday
devices, this first-of-its-kind study aims to measure changes in
thinking and memory in adults, as well as identify longer-term
changes in brain health. For more information about who is
eligible and how to enroll, click the link below. |
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IN CASE YOU
MISSED IT... |
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Working While Caregiving: Conversations with
Caregivers | 
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This
conversation includes: Jessica Strong, Co-Director of Applied
Research at Blue Star Families; Geri Lynn Maples, Caregiver, Dole
Fellow and Dayton & Southwestern Ohio Chapter Director at
Blue Star Families; and Conwell Smith, Chief External Affairs
Officer at the Rosalynn Carter Institute for Caregivers. The
conversation focuses our attention on educating, equipping, and
creating awareness surrounding the challenges that caregivers
experience in the workplace. We will discuss tips and tricks for
navigating these challenges and share resources available to both
caregivers and employers. |
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My
Social Security 2021 - Third Party Social Media Toolkit A free and secure my Social Security account
provides personalized tools for everyone, whether you receive
benefits or not. You can use your account to request a
replacement Social Security card, check the status of an
application, estimate future benefits, or manage the benefits you
already receive. All from anywhere! |
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Start
the New Year Building Your Caregiving Community If connecting with fellow caregivers is one of
your New Year’s goals, sign up today to get support from the VA's
Building
Better Caregivers® (BBC) six-week online workshop. Meet other caregivers
who share similar challenges and learn new ways to reduce stress,
improve communication with your care partner and discover
self-care techniques to reach your goals. |
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Community-Based
Respite Care: Training Caregivers and
Family to Provide in-home Care for Indigenous Older
Adults Living with Dementia The International Association for Indigenous
Aging has announced the availability of a
new Indigenous respite care toolkit that will help
build capacity for the provision of community-based respite care.
The goal of the toolkit is to build capacity for community-based
respite care by creating an opportunity for education, training,
and increasing awareness in Indigenous communities. |
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Project
Issue Brief: Vaccination Equity in the
COVID-19 Era The COVID-19 Vaccine Education and Equity
Project’s issue brief examines the impacts and lessons learned
from the pandemic, summarizing data on current disparities in
COVID-19 vaccination rates, the decline in most routine
vaccinations that has occurred during the pandemic, and providing
context about longstanding health disparities that existed before
the pandemic but continue today. To read the report in English, click the red
button below. To read it in Spanish, click here. |
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Welcome
to The Arc’s Virtual Program Library The Arc's virtual program library is a free hub of
on-demand activities that can be done from home by people with
disabilities, their families, and service providers. The library is expanding all the time and has
activities in a wide variety of areas, such as arts, life skills,
health and wellness, virtual clubs, and more. Browse listings to find activities like: · Participating
in dance, yoga, and other movement activities · Learning
about internet safety · Virtually touring
places like Disney World and museums · Making
your own Jeopardy templates · Finding
self-advocacy support |
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Planning
for the Future Is Possible. The Arc
is Here to Help. Thinking about the future after a caregiver is no
longer able to provide support to a loved one with disabilities
is difficult. To make it less daunting, The Arc’s Center for
Future Planning has a wide range of tools and resources to
support you through the process. Whether you’re looking for
information about financial planning, housing, supported
decision-making, or more, we’ll help you get
started and stay organized! Our newest resources include an
informative video series on ways
to save money and protect public benefits. The videos are also available
in Spanish. Not sure where to start? Email futureplanning@thearc.org if you
have any questions. |
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New
Resources from Caring Men Global Caring Men Global Inc. has published two new
resources for male caregivers. In conjunction with the
development of CMG’s website, a new page has been added to help
men adjust to their new caregiving roles. This feature provides
caregivers with a guideline to help them know where to begin. Because the importance of having caregivers maintain
their physical and mental health as they take care of their loved
ones is often lost -- and as a consequence, frequently results in
caregiver burnout -- GMG has also created a new guide tailored to
helping male caregivers avoid burnout and find ways to meet their
needs. To learn more about Caring Men Global Inc. and
how to access their new guide, click the on the red button below. |
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NASHP
RAISE Act State Policy Roadmap for Family Caregivers: Part 4 -
Financial and Workplace Security for Family Caregivers The National Academy for State Health Policy (NASHP)
has released section 4 of a
new RAISE Act State Policy Roadmap for Family Caregivers,
"Financial and Workplace Security for Family
Caregivers." The purpose of the roadmap is to
support states that are interested in developing and expanding
supports for family caregivers of older adults by offering
practical resources on identifying and implementing innovative
and emerging policy strategies. The Financial and Workplace
Security for Family Caregivers section is
highlights how states are supporting employed family caregivers
and promoting financial security among caregivers. Congress enacted the Recognize, Assist,
Include, Support and Engage (RAISE) Family Caregivers Act in
2018, which created an Advisory Council to
develop the country’s first national Family Caregiver Strategy.
NASHP created this roadmap with
guidance from policymakers and leaders from across state
government, using the RAISE Act goals and recommendations as a
framework. |
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One
Caregiver Resource Center This new site aims to serve as a platform to
support caregivers and adults with intellectual and developmental
disabilities (IDD) who may be at risk of, or are living with
Alzheimer’s Disease or related Dementia (ADRD). As an aging
service provider who works closely with caregivers of all ages,
demographics, and capacities, we are excited to provide a
centralized tool that will provide direct access to webinars
across the county, trainings, updated research, and
resources. |
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Livanta
#MyRole Social Media Toolkit To help improve public awareness of family
caregivers and increase family caregivers’ self-identification,
Livanta has created #MyRoleCounts, a social media toolkit for
partners and stakeholders. The social media toolkit consists of a
variety of recommended graphic files, social media posts, and
hashtags. Content is written using simple, plain language.
Graphics are vibrant, use eye-catching colors, and cultural
diversity to engage followers. Items from the toolkit can easily
be downloaded below from Livanta’s website or cross-posted on
social media. Click the link below to download and share the kit
today! |
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Dental
Help for Adults With Disabilities Special care dentistry (SCD) is a branch of
dentistry that facilitates care for impaired patients with
physical, intellectual, sensory, mental, emotional, medical, or
social disabilities. Special care dentistry is taught as a postgraduate
course that equips dentists to offer dental services to patients
with special care needs. International organizations like the Special
Care Dentistry Association (SCDA) are made up of oral dental
professionals dedicated to promoting the oral health of persons
with special needs. Those qualified for special-care dentistry are
people who need free comprehensive dental treatment. This
includes: · The
elderly · Disabled
people · Mentally
and medically compromised persons |
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Best
Practice Caregiving: Infographic Series on
Dementia Caregiving Program The Family Caregiver Alliance (FCA) is publishing a
series of blogs and one-page infographics as part of a series
about specific dementia caregiving programs that are found in
Best Practice Caregiving. Best Practice Caregiving (bpc.caregiver.org) is a free
online database that helps health care and social service
organizations identify, compare and adopt best-fit programs for
their clientele and community. |
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FOLLOW US
TO STAY CURRENT ON CAREGIVING! |
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