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Time to
Care: The Importance of Caregiver Voice in Healthcare, Drug
Development, and Value Assessment
The demands of caregiving, combined with limited
formal training or external supports, can adversely impact the
health and well-being of family caregivers. “Caregiver strain” is
a concept that has been used to describe the spectrum of
physical, psychological, social, and financial impacts
experienced by family caregivers.3–5 Dependence on family
caregivers and high caregiver strain are most prominent in
conditions that impose both physical and cognitive limitations,
such as stroke, Alzheimer’s disease, and dementia, which
predominantly afflict older individuals.
C. Grace Whiting, JD, the president and CEO of the
National Alliance for Caregiving, stressed that, “Family
caregivers are caring for multiple people ... [and] need care
themselves to maintain their own health and wellness and to be
the best care provider for a patient. When caregivers don’t have
the support they need, it becomes more difficult for them to be a
partner in care to the patient.”
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From: ISPOR | July/August
Edition, 2021
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Four
Forecasts for Family Caregivers in a Post-Pandemic World
When Harvard Business School published its 2019
Caring Companies report, finding that 3 out of 4 employees are
also caregivers, the researchers couldn't have predicted that
the workplace caregiving crisis was about to collide with the
coronavirus crisis. Nor that the combination would accelerate a
sea change in employers' attitudes and policies toward
caregivers.
"It is — and should be — impossible to have a
meaningful conversation about recovering from this pandemic
without addressing an aspect of Americans' lives that is too
often invisible: caregiving," wrote Melinda Gates,
co-chair of the Bill & Melinda Gates Foundation, in a
recent Washington Post op-ed piece. "We overlook that it
will require scaling up caregiving solutions…It's [also] hard
to get back to work when you're responsible for children or
older adults but have nowhere to turn for safe, affordable care."
From:
Next Avenue | June 26, 2021
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Time
to Care: The Importance of Caregiver Voice in Healthcare, Drug
Development, and Value Assessment
The demands of caregiving, combined with limited
formal training or external supports, can adversely impact the
health and well-being of family caregivers. “Caregiver strain”
is a concept that has been used to describe the spectrum of
physical, psychological, social, and financial impacts
experienced by family caregivers.3–5 Dependence on family
caregivers and high caregiver strain are most prominent in
conditions that impose both physical and cognitive limitations,
such as stroke, Alzheimer’s disease, and dementia, which
predominantly afflict older individuals.
C. Grace Whiting, JD, the president and CEO of the
National Alliance for Caregiving, stressed that, “Family
caregivers are caring for multiple people ... [and] need care
themselves to maintain their own health and wellness and to be
the best care provider for a patient. When caregivers don’t
have the support they need, it becomes more difficult for them
to be a partner in care to the patient.”
From:
ISPOR | July/August Edition, 2021
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Caring
For Those Who Care: Meeting The Needs Of Hispanic Caregivers
(webinar)
August 26, 2021 | 2 PM EST | Online
This webinar will help providers further their
understanding of the experiences of Hispanic caregivers, and
improve their multicultural capacities to meet these caregivers’
needs. This webinar is part of the cultural competency training
curriculum created by the staff of the Diverse Elders Coalition
and its six member organizations, with the support of a grant
from The John A. Hartford Foundation.
Much of the research and many of the statistics
cited in the training were the result of a 15-month planning
grant, during which the coalition completed a literature review,
a survey of diverse family caregivers and a series of focus
groups with family caregivers in diverse communities. The
research was conducted nationwide, in eight languages, and was
led by the older adults and caregivers represented by the
coalition.
Participants in this webinar will be able to:
· Identify
and address the unique needs and caregiving realities of Hispanic
caregivers;
· Gain an
understanding of how culture impacts Hispanic caregivers’
perceptions of care and their health outcomes; and,
· Develop
skills to deliver Hispanic–competent, person-directed care to
improve health outcomes among Hispanic caregivers.
To
register for this webinar, click here. To learn
more, click on the red button below.
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The
Arc’s 2021 National Convention will be held in New Orleans from
September 27 - 29
Deadline to register at standard rate: August 27, 2021
The Arc’s National Convention is an unmatched opportunity
to connect and learn with advocates, professionals, people with
intellectual and developmental disabilities, and their families.
If you are interested in employment, education, advocacy,
housing, criminal justice, and more – our sessions are sure to
challenge, inspire, and motivate!
To learn
more about the convention click on the button below. Click here to
register.
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The
National Home-Based Primary Care Learning Network
is
accepting applications for its year-long participatory
learning
experience
Deadline to apply: August 30, 2021
The goal of the Learning Network is to improve the
care provided to homebound patients while promoting a culture of
better care and continuous learning in home based medical care
practices.
The Learning Network experience starts and ends with
in-person meetings commencing and concluding the program. Between
in-person meetings, the Learning Network will facilitate a series
of video conference interactive learning sessions, technical
assistance, and access to web-based quality improvement tools.
Teams will complete an initial assessment of their current
practice, identify opportunities for improvement, and will work
between learning sessions to meet their aims.
To apply
for this program, click here. To learn
more about it, click the button below.
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Webinar:
Supporting Family Caregivers of Older Adults with Dementia and a
History of Trauma: Unique Challenges and Trauma-Informed
Approaches
August 31, 2021 | 2 PM EST | Online
The Jewish Federations of North America (JFNA)
Center on Aging and Trauma, a project of the Holocaust Survivor
Initiative, invites you to participate in the webinar, Supporting
Family Caregivers of Older Adults with Dementia and a History of
Trauma: Unique Challenges and Trauma-Informed Approaches on Tuesday,
August 31, 2021,
from 2:00pm to 3:30pm ET.
Family caregivers of older adults with dementia and
a history of trauma face a number of unique challenges, including
trauma-related symptoms in their loved ones that can be sudden,
frightening, and difficult to explain; and fears of
re-traumatizing their loved ones while managing their behavioral
and cognitive symptoms during caregiving tasks. This webinar will
provide an overview of the intersection between trauma and
dementia and of the unique challenges of family caregivers of
older adults with dementia and a history of trauma, and provide
examples of how person-centered, trauma-informed approaches can
help ameliorate these challenges and promote the health and
well-being of this uniquely vulnerable caregiving
population.
Contact Aging@JewishFederations.org with
questions.
To
register for the webinar, click the button below.
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The
Legacy Interviews
June 23 - September 8, 2021 | Online
The American Society on Aging has released a 12-week
webcast series that will feature interviews with diverse
legendary pathfinders who have spent decades in the field of
aging, health and social services. Each interview will be
conducted by Ken Dychtwald, to capture the wisdom and character
of gerontology’s pioneers to inform, inspire and guide current
and future professionals in the fields of aging and related
services for years to come.
Click here to
register for the webinar, Click on the red button below to learn
more.
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Registration
for Informational Meeting for Prospective Applicants Extended
Deadline to
register: September 13, 2021
The ARCH
National Respite Network and Resource Center and
the Respite
Care Association of Wisconsin, in
collaboration with the National
Academy for State Health Policy (NASHP) are
seeking applicants to participate in a pilot project to field
test a competency-based and enhanced entry-level respite provider
training curriculum and recruitment campaign. The purpose of the
initiative is to develop, test and scale a respite workforce
recruitment, training and retention program to better meet the
respite needs of families caring for individuals of any age or
condition, particularly in light of the impact of the COVID-19
pandemic on the workforce.
Additional
funding is anticipated to increase the number of pilot sites from
six to twelve. To accommodate additional applicants, the deadline
for application submission has been extended to September
13, 2021, midnight CST. Only one site per state will be selected
and applicants demonstrating a statewide or multi-county reach
will be given priority.
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Community-based
Dementia Programs: Learning from Challenges and Sustaining
Successes
September 14, 2021 | 1 PM EST | Online
Please join the National Alzheimer’s and Dementia
Resource Center for the webinar, Community-based Dementia
Programs: Learning from Challenges and Sustaining Successes, on
September 14, 2021 from 1-2 p.m. ET.
Dozens of community-based dementia programs have
been launched over the last few decades. In addition to
supporting people living with dementia and family caregivers,
most of these programs educate and provide training for
professionals and members of the community. Addressing the wide
range of training and support needs for these audiences has led
to many lessons learned and provided the programs with a solid
foundation for sustained success. This webinar provides an
overview of the types of services and training provided by
community-based dementia programs. In addition, participants will
learn about lessons learned and methods for sustaining successful
program activities from two community-based dementia programs.
To learn
more, click here. To
register for the webinar, click the button below.
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Engaging
Caregivers: A Program for Healthcare Workers
September 23, 2021 | 10 AM - 11 AM CST | Webinar
Healthcare workers can better serve patients through
partnership with caregivers, but there is limited formal training
and support on how to engage caregivers in care planning. This
series will explore the role of caregivers and their experiences
in supporting the health of loved ones. We will examine issues
including difficult behaviors, elder abuse and advocacy,
diversity and cultural competence and we’ll identify resources to
support healthcare workers along the way. Certificate
of attendance provided upon request.
Join us to discuss: Defining Caregivers
& Recognizing Their Experiences
· What
research tells us about caregiver experience, challenges, and
well-being
· Are
caregivers a resource, partner, or client?
· Self-care
for caregivers and professional caregivers
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PATIENT AND
CAREGIVER STUDIES
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Caregivers:
How Much Do You Know About Managing Money?
Help evaluate a free virtual program by the
Alzheimer’s Association about making financial decisions and
planning for future care costs. Visit alz.org/managingmoney to learn
more.
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AHEAD
Study
Join a trial that aims to help prevent Alzheimer’s
disease, funded by the National Institutes of Health
(NIH) and Eisai Inc., which is testing an investigational
treatment aimed at delaying memory loss before noticeable signs
of Alzheimer’s disease begin.
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LEAF:
Life Enhancing Activities for Family Caregivers
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Researchers at UCSF and Northwestern University are
testing a program for family caregivers of people with
Alzheimer's Disease designed to increase levels of positive
emotion, which in turn can help lower stress and support ways of
coping with the stresses of caregiving.
Click the red link below to learn more and click HERE to take
the pre-screening survey.
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Veteran
User Experience Research Study
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Are you a Veteran? Active duty or Reserves? A
caregiver? A family member? The Department of Veterans Affairs
wants to make it easier for you to explore, apply for, manage,
and track your VA benefits. Teams at the VA want to hear your
feedback about improvements they are making to VA websites,
mobile applications, and other digital tools -- to ensure that
these services are usable and relevant for you.
Click
the red link below to learn more and click HERE to
register.
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IN CASE YOU
MISSED IT...
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How do I
organize my caregiving tasks?
During this #carechat with Aaron
Blight, EdD, he provides tips for caregivers on ways to organize
their loved ones’ care, including questions to ask when
organizing a care plan, navigating Medicaid, when to seek
emergency help for your loved one, and much more.
Click
below to view the video.
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NAC
Presents The Circle of Care Guidebook for Caregivers of Children
with Rare and/or Serious Illnesses
The National Alliance for Caregiving is proud to
present The Circle of Care Guidebook for Caregivers of
Children with Rare and/or Serious Illnesses, a new 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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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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The ability to take time off when we’re sick and
need to rest. To accompany a loved one to a dialysis appointment.
To spend time with a newborn or adopted child. Some of us have
this option, but far too many people in the United States do not.
The National Partnership for Women & Families
brought together cross-sector business leaders who have been
advocating for paid leave — Airbnb, Levi’s, Patagonia, Seven
Seven Six, Sun Life, Thinx, ThirdLove, Brew HaHa! (a main street
business in Delaware), and Melinda French Gates.
The message is loud and clear from business leaders:
no one should have to choose between our families and our jobs —
and paid leave is what every business needs to thrive.
Watch our new video as
these leaders each share why they think ensuring all workers can
take time off work to care for themselves or a loved one is why
the time is now for paid leave. And join them in
the call for paid leave for all.
Click here to learn
more or click on the red button below to view the video.
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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
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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