From: National Alliance for
Caregiving | Published: December 1, 2021 |
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NAC and
Global Genes Publish New Guidebook for Caregivers of Children
with Rare Illnesses Living with and caring for a child with a rare or
serious illness has unique challenges and unique rewards.
Oftentimes, the mainstream advice for caregivers doesn’t
apply. Caregivers face a long road to getting an accurate
diagnosis, navigating options for treatments, advocating for
support services, and finding a way to pay for out-of-pocket
expenses. Additional obstacles arise when doctors, teachers,
childcare centers, and other community members don’t understand
the illness or how to accommodate the child’s needs. It all can
feel like too much to bear alone. That’s why all of us at Know Rare were so
encouraged to learn that the National Alliance for
Caregiving (NAC), in partnership with Global Genes, has
released a new handbook specifically for Caregivers of Children
with Rare and/or Serious Illnesses. “The Circle of Care Guidebook is intended to help
Caregivers navigate through the varied experiences and challenges
of rare and serious medical conditions, guided by the insights,
achievements, and learnings of other caregivers and experts,” NAC
says. From:
Know Rare | Published November 23, 2021 |
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Caregiving
and Bereavement: Does the LGBTQ+ Community Need Stronger
Support? Acting as primary caregiver for a dying parent
is a heavy burden for anyone. Martin, who preferred not to use
his last name, assumed that role for his mother after outliving
his own cancer prognosis by 20 years. Yet Martin remains
remarkably upbeat while candidly discussing his experiences
giving and receiving care. From the start, Martin felt the responsibility
of caring for his terminally ill mother fell to him because he
was single. “There seems to be a lot of families that treat
their LGBT children differently than their [heterosexual,]
married children,” said Martin, a gay man “of a certain age.”
It was assumed he had fewer responsibilities. “They’re from the
heterosexual-normative lifestyle, and they’re used to the
thought, that my family is different, my family doesn’t really
exist.” Being gay was “undiscussed,” Martin said. And
because he didn’t have a partner at the same time that his
mother was sick, Martin was left to pick up the slack. “That included making meals, visiting her every
day, spending hours helping her to get dressed, undress, go to
the bathroom — doing the things caregivers do,” Martin said.
When she entered assisted living during her final months,
Martin visited her every day, keeping her company and “making
sure her life was easier,” he said. | From:
Pride Source | Published: November 18, 2021 |
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Caregiving Help Your Career? Yes! Leverage These 5 Skills To
Get Ahead If you’re like most people, you’ve spent a lot
more of your time giving care over the last couple years—to
children, to elder relatives, to friends or neighbors. For
some, caregiving has meant stepping back from career growth—but
it doesn’t have to. In addition to the challenges of caregiving, it
also results in the development of key skills which are highly
transferable to your job. But recognizing the skills and
articulating them for employers is critical to getting ahead. The number of people providing care has risen
significantly over the last couple years, and a study by Case
Western Reserve University reports that according to the
National Alliance for Caregiving (NAC) and the American
Association for Retired Persons (AARP), there are about 66
million family caregivers in the US and about half of these
work outside the home. In addition, more than half of
caregivers are women. The “caregiving economy”—the value of the
work performed by unpaid caregivers—is valued at $450 million
annually, according to the NAC and the AARP. Caregiving is time consuming and according to a
study by Fidelity, a
person caring for children spends an average of 61 hours per
week, and a person caring for adults spends about 28 hours per
week, on average. In addition, women report spending about
twice as much time as men providing care. | From:
Forbes | Published: November 21, 2021 |
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Webinar:
Congressional Briefing on Family Caregiving in Diverse
Communities: Addressing the Needs of Diverse Family Caregivers
for Older Adults Date: December 8, 2021 at 1:00 PM (EST) Join the Diverse Elders Coalition and its members,
in partnership with the National Alliance for Caregiving, as they
discuss findings from their recently released report, Family
Caregiving for Older Adults from Diverse Communities. The report
highlights impacts of the COVID-19 pandemic on family caregivers;
related implications for older adults from diverse communities;
and ways to strengthen recommendations from the recently released
RAISE Family Caregivers Act Initial Report to Congress to better
address the unmet needs of racially and ethnically diverse family
caregivers. |
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Webinar:
Understanding Aging and Dementia in Adults with IDD
Date: December 9, 2021 at 4:00 - 5:30 PM (EST) At the end of this webinar, hosted by the National
Task Group in Intellectual Disabilities and Dementia Practices, attendees
will be able to: • Understand the Impact
of Aging on Adults with Intellectual Disabilities • Provide an Overview
of the Risk of Dementia in Aging Adults with Intellectual
Disabilities • Explain How the
Challenges Unique to Intellectual Disabilities Impacts Service
and Support Needs • Understand What
Dementia Is…And Isn’t • Increase Your
Knowledge of Potentially Treatable Medical Conditions that Mimic
Dementia • Cite Established
Guidelines for Diagnosing Dementia in Adults with Intellectual
Disabilities |
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AHHQI
has an open RFP: 2022 Home Health Grant Request for Proposals The Deadline is December 23, 2021 The Alliance for Home Health Quality and Innovation
(AHHQI) seeks to sponsor a research project to help advance home
health care and may seek to improve care delivery at home through
quality and innovation. Funding will be awarded up to a total of
$75,000 maximum (including indirect costs). Multiple projects may
be funded if they do not exceed the total funding allocated for
all projects of $75,000. Proposals are due by close of business
on Thursday, December 23, 2021. |
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PATIENT AND
CAREGIVER STUDIES |
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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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COVID-19
Study The University of Tennessee College of Nursing is
seeking adults who are currently providing care (at least 8 hours
a week) to an older adult with a chronic condition. Are you a caregiver for an older adult with a
chronic condition? Please consider taking part in this important
research study to understand caregiving during #COVID-19. The
University of Tennessee College of Nursing is seeking adults who
are currently providing care (at least 8 hours a week) to an
older adult with a chronic condition for a research study. The
purpose of the study is to understand the experiences of
caregivers during COVID-19. The study involves responding to an
online survey questionnaire with questions related to caregiving
and one interview to talk about their experiences using online
caregiving resources. The one-time interview takes approximately
30–45 minutes to complete. Participants will receive a $25 Amazon
gift card for completing the interview and a separate $10 Amazon
gift card for completing the survey. |
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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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MSNBC
Caregiving Segment with NAC President
& CEO C. Grace Whiting MSNBC speaks to National Alliance for Caregiving
President and CEO C. Grace Whiting on the needs of family
caregivers and in what ways the Build Back Better bill will
support these needs if it is passed. Grace highlights respite
infrastructure, Paid Family Medical Leave, and current ways in
which caregivers can connect with other caregivers to find
support, information, and those going through similar experiences
in order to feel less isolated. Click
below to view the video. |
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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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The
National Alliance for Caregiving Releases a New 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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Is What Matters to You Today the Same as Two Years
Ago? Millions of people will travel to see friends and
family in person over the upcoming holiday season, many for the
first time in nearly two years. Our world and society have
changed dramatically over the course of the COVID-19 pandemic and
the upheaval has led many to reevaluate their own hopes and
expectations for the future. Now is a good time to talk about what matters to
you with those who care about you, especially related to your
health and care needs as you age. It’s also an opportunity to
have conversations with people whose care you may be responsible
for. Whether you are a clinician or other professional
working with older adults, or you are considering what matters in
your own personal life, here are resources to help begin or
facilitate these sometimes difficult conversations. |
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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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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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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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Plain
Language Resource for Crime Victims With Disabilities A new fact sheet, created by The Arc’s National Center on Criminal
Justice and Disability, is designed for people with disabilities
to understand their rights if they are victimized. The document
outlines different types of abuse, what people
with disabilities -- or the caregivers who help them -- can
do if they become a crime victim, and where to go for help. Download
it now and share it in your community! |
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What’s
Public Health Got To Do With… Family Caregiving? Trust for America's Health (TFAH) has published
a blog,
"What’s Public Health Got To Do With… Family
Caregiving?," to launch it's new monthly blog series on
Age-Friendly Public Health Systems. This series is designed to
stir up conversation, generate interest, and challenge healthy
aging stakeholders to engage more deeply in age-friendly public
health issues. Author of this month's blog on "What’s Public
Health Got To Do With… Family Caregiving?," Megan Wolfe,
TFAH's Senior Policy Development Manager, outlines five potential
roles for public health departments to support caregivers,
organized according to TFAH’s AFPHS 5Cs Framework. The roles
include collecting and disseminating data, coordinating existing
supports and services, connecting and convening multiple sectors,
communicating, and complementing existing supports. |
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Dementia
Care Providers Database |
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Best Practice Caregiving is a free online
database of proven dementia programs for family caregivers. It
offers a searchable, interactive, national database of vetted,
effective programs that offer much-needed information and
support. The database is an invaluable tool for healthcare and
community-based organizations, as well as funders and policy
makers to discover and share high quality programs for
caregivers. In the Best Practice database you will find detailed
information about: · focus of
each program · (e.g.,
reducing stress, understanding dementia, planning care,
skill-building, health & wellness, etc.) · program
implementation · research
findings · direct
utilization experiences of delivery sites · program
developer information. Click here to learn
more about the database or click the button below to access it. |
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Home Is
Where the Care Is |
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What if you were one of the 2 million adults who are
homebound in the United States? Wouldn’t you want care to come to
you? With the nation’s older adult population increasing,
home-based primary care is quickly becoming the future of health
care for patients who are medically complex. New resources share
needed information about delivering primary care in the home: · The Better
Care Playbook’s Home-Based Primary Care Collection provides
research, resources and tools for delivering care at home.
The collection includes blogs from Rush@Home detailing its care
model elements and implementation insights, and the Department of Veterans Affairs highlighting
its successful program. · A Home Centered Care Institute (HCCI) House
Calls 101 course offers a simulated educational
experience to help you get started with home-based primary care. Click here to the
online course. Click the button below to browse the collection. |
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Report:
The United States Should Recognize and Support Caregiving Youth |
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In the United States, more than 5.4 million children
and adolescents under age 18 provide care for family members who
are aging or have chronic illness, disability, or other health
conditions that require assistance. In this policy study published in the Society for
Research in Child Development's Social Policy Report, the
authors describe youth’s care for the family and highlight the
increasing prevalence, global challenges, and uneven successes of
measurement and categorization. They briefly summarize research
on how caregiving affects youth’s academic, social, and emotional
well-being. Next, they present novel, emerging evidence from the
public school-based 2019 Youth Risk Behavior Survey for the State
of Florida, which suggests that as many as 24 percent of middle
school students and 16 percent of high school students provide at
least some care to the family on a regular basis. Drawing on this
evidence, the authors' discuss targeted social programs which
have been shown to promote the well-being of caregiving youth
outside of the United States, as well as a 13-year-old
school-based intervention in The School District of Palm Beach
County, Florida. The report concludes with specific recommendations
for a path toward recognizing and supporting caregiving youth via
policy and practice in the United States. Its aim is to increase
the awareness and feasibility of identifying and supporting caregiving
youth and their families via government-organized data collection
and targeted social policies. |
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2021
Global State of Caring Report |
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The International Alliance of Carer Organization’s
2021 Global State of Care report provides an in-depth profile of
the issues, approaches, policies, and innovations that are needed
to support carers. It profiles the carer policies and
practices in 18 countries. This interacting tool features
carer initiatives addressing six universal carer priorities: · Recognition:
Legislation and awareness campaigns · Financial
support: Income support, pensions, and benefits · Work and
education: Carer-friendly workplaces and educational initiatives · Health
and well-being: Health and social supports · Information
and knowledge: Resources and education · Evidence-informed
practices: Innovative policies and practices |
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The John
A. Hartford Foundation's Dissemination Center |
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Funded and disseminated by The
John A. Hartford Foundation, The American
Association of Retired Persons (AARP) has released a new
series of how-to videos and accompanying resource guides
that walk family caregivers through what to expect before,
during, and after a planned or emergency hospital stay. The videos and resource guides, many of which are
available in both English and Spanish, are free of charge and
were developed by Home
Alone Alliance members—the The “How-To” videos and resource guides for family
caregivers are on specific medical/nursing tasks – including
preparing special diets, managing incontinence, wound care,
mobility, and managing medications. |
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Navigating
the Pandemic: A Survey of U.S. Employers |
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Employers play a vital societal role by providing
employment, work experience, employee benefits, and the ability
for workers to save and invest for a secure retirement. This
report examines the pandemic's impact on employers across
the company, their response, and timely opportunities. A strong
employee benefits package, including retirement benefits, health
insurance, workplace wellness programs, and caregiver support,
can create a win-win situation for employers and their employees.
Especially now, as our nation is emerging from the pandemic,
employers need support from policymakers to continue paving the
way for their recovery and to make it as easy as possible to
enhance their business practices and expand their benefits
offerings. |
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FOLLOW US
TO STAY CURRENT ON CAREGIVING! |
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