From: National Alliance for
Caregiving | Published: December 22, 2021 |
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NAC will
be closed for its annual holiday break from December 24th to January 3rd. This
Week In Caregiving will not be distributed during our break,
but will resume in the New Year. We wish
everyone – especially caregivers! – the joy of the season. We
hope you celebrate the warmth, the wonder, the magic of family
and friends as you share in the traditions you honor. |
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Juggling
Work And Caregiving COVID-19 has taken a heavy toll on workers
everywhere, but for women in the workplace the impact has been
especially taxing. Organizations need to step up and
address the emerging needs of female workers – or risk losing a
vital segment of the workforce to burnout or to competitors
that offer a culture that better prioritizes employee
well-being, work-life balance and overall mental health. Let’s look at just one challenge exacerbated by
the pandemic – the need to balance the dual roles of full-time
employee and family caregiver. The COVID-driven combination of school and
senior centers closings, business shutdowns and the shift to
remote work have heaped greater caregiving responsibilities on
families with both young children and older parents or loved
ones. Since two-thirds of
U.S. caregivers are women, they are bearing the brunt of this
growing challenge. According to a recent study by
AARP and S&P Global, 60% of women who juggle work and caregiving
responsibilities are now providing more care than before the
pandemic. No wonder 75% of these workers/caregivers are
experiencing a moderate or major increase in stress
levels. | From:
Forbes | Published: December 9, 2021 |
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for Making Caregiving an Easier 24/7 Labor of Love Larry Perlstein knew something was wrong when a
cop showed up at his door. His wife had taken their 9-year-old
daughter to karate class that day in February 2017. "The
cop said, 'Something has happened. You need to come with
me,'" Perlstein recalls. Although only 49 at the time, his wife Jacquie
had suffered a near-fatal hemorrhagic stroke while at the
karate school. Initially, doctors weren't sure if she would
live. Jacquie had always been healthy. "She had no high
blood pressure, which is the typical cause of this kind of
stroke," Perlstein says. Jacquie spent six weeks in a neuro intensive
care unit at a Connecticut hospital and another four months at
a rehabilitation center. Early on, doctors tried to ascertain
the stroke's damage by asking her to wiggle a finger or blink
if she understood something they had said. "Some days, the
signs were good and some days, not so good," says
Perlstein, now 64. Over time, it became clear that Jacquie's
cognitive ability had survived largely intact, but speaking and
even performing the most basic daily functions, like dressing
herself, were beyond her. Bringing her home was especially
terrifying. Social workers, Perlstein says, can answer specific
questions, but "they're not good at preparing you for the
process and being proactive." | From:
Kiplinger | Published: December 9, 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 SNBC 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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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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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. Click
here to Start
Your Journey. 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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The
Arc's Virtual Program Library for People With Disabilities Is Now
Live! |
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Looking for online activities that someone with disabilities in your life can use to keep busy as the weather cools down?
We’re excited to share our new Virtual Program Library, a free hub full of on-demand activities that can be done from home by people with disabilities, their families, and service providers.
Topics include arts, community and life skills, health and wellness, virtual clubs, and more.
Visit the hub to check out the resources we have so far and share it with your networks so it can continue to grow into a robust resource for people with disabilities and their supporters!
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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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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 “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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