When the
Parenting Never Stops We have a mainstream directive for raising
children in our society: You provide them with support, shelter
and care until they’re 18, and then they’re supposed to be, more
or less, self-sufficient, launched into the world as adults. This
framework leaves out millions of parents whose children struggle
with substance abuse or mental illness, who may be providing
active care to their adult children for the rest of their lives. A new book, “Difficult: Mothering Challenging
Adult Children through Conflict and Change,” by Judith R.
Smith, an associate professor at the Graduate School of Social
Service at Fordham, seeks to define and explore this often
painful type of parenting. An estimated 8.4 million Americans
care for “an adult with an emotional or mental health
issue,” according to a 2016 report from the National
Alliance for Caregiving, and 45 percent of mental health
caregivers are caring for an adult child. For “Difficult,” Smith writes, she spoke to 50
mothers of adult children who were not fully independent, who had
issues from severe mental illness to persistent unemployment. All
of these mothers were over 60, and many were also dealing with
their own declining physical and emotional health. Smith writes
that half the women she spoke to were doing this with incomes
under $17,000 a year for a family of two. “My research revealed that a mother’s internalized
mandate to protect her child does not end when her children are
grown,” Smith writes, and she outlines the stigma and worry they
feel about their children’s problems. She seeks to lessen this
stigma for parents, more and more of whom will be in the same
situation as her book’s subjects in the coming years,
with young adults increasingly reporting mental
health issues, particularly during the pandemic, and the
opioid crisis continuing to take lives. From: New York Times | February 16, 2022 |
|
How to
Coordinate a Parent's Care With Siblings When it becomes clear that an aging parent needs
caregiving, it’s uncharted territory for adult children.
Ideally, brothers and sisters rally together to recognize a
parent’s needs and challenges, make plans to address them and
volunteer for essential caregiving tasks. But it doesn’t always
work out that way. Adult siblings may have clashing ideas about how
much care a parent needs and who should provide it. They may
have different perspectives on what their own roles should
entail. Individual brothers or sisters may step up to take on
caregiving responsibilities while others step back. In many
families, sibling caregiving
roles are never explicitly discussed. Below, family caregiving experts share insights
and tips on how adult children can join together to take care
of their parents as best as possible – and avoid emotional
pitfalls that strain and damage sibling relationships. Communication Channels Making sure everyone is abreast of a parent’s
condition – what to expect, tasks needed, requests for help –
is a major caregiving challenge. To stay organized and keep siblings in the loop,
you can use informal channels like quick calls or texts or turn
to systems created to enhance family caregiving: · Apps. Create
a free, personal CaringBridge website
that everyone – parents, siblings and extended family – can use
to instantly stay in touch and up to date. Often designed by
caregivers themselves, online apps, such as CareZone, Lotsa
Helping Hands and Caring Village, help you manage the countless
aspects of caregiving. | From:
U.S. News & World Report | Published: February 2, 2022 |
| What
Caring for an Aging Parent Could Cost You Trying to work while caring for an aging loved
one can be difficult, stressful and at times overwhelming. Many
people feel they must quit, take a leave of absence or at least
reduce their hours in order to cope. Sometimes, caregivers have little choice. But
often people don’t realize the heavy financial toll they’ll pay
or adequately research options that could allow them to keep
working, says Amy Goyer, AARP’s national family and caregiving
expert. “When you’re in a caregiving crisis, you can
make a decision out of stress and fatigue and fear,” Goyer
says. “It’s important to make work decisions and financial
decisions from a more objective place.” Calculate costs A 2020 AARP study found 61% of
caregivers to adults were employed, and the majority had
experienced at least one work-related impact. Most commonly
that meant being late to work, having to leave early or taking
time off, but caregivers also reported having to take unpaid leave
or reduce their hours. One in 10 working caregivers quit or
retired early. Those who leave work don’t just lose their
current income. They also lose future raises, retirement
contributions and company matches. Their future Social
Security checks may be smaller, and many find they can’t earn
as much when they return to work because their skills are out
of date. A few years out of the workforce — AARP’s study found
the average caregiving period was 4½ years — can leave you
hundreds of thousands of dollars poorer at retirement. Fidelity
Investments has a “cost
of leaving the workforce” calculator that can help you
tally the potential impact. Fidelity is a NerdWallet partner. | From:
St. Louis Post-Dispatch | Published: February 15, 2022 |
|
|
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. |
|
World
Carers Conversation 2022 Call for Proposals NAC invites you to submit a session proposal for the
2022 World Carers Conversation. Prerecorded and live sessions
will be presented on a variety of topics relevant to caregiving
and family-centered care for an audience of caregivers and allied
researchers, clinicians, private and public health systems
leaders, community organizers, advocates, and policymakers. NAC
is seeking sessions proposals focused on the following three
topic areas: · Promoting
Mental and Emotional Health and Wellbeing · Integrating
Caregivers into the Healthcare Team · Advancing
Economic Security NAC believes that innovation is enhanced by a
variety of perspectives and our goal is to offer a diverse
selection of sessions that represent caregiving innovation and
expertise from across the globe. We invite participation from
people of all races, ethnicities, nationalities, genders, ages,
abilities, religions, and sexual identities to submit a proposal. Proposals may be submitted electronically between February
7 and March 13. We hope that you will share your expertise,
innovation, and insight by presenting a session at the 2022 World
Carers Conversation. Review our Call for Proposals for complete
information. |
|
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. |
|
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. |
|
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). |
|
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. |
|
Virtual
Rare Disease Week on Capitol Hill 2022 February 22,
2022 - March 2, 2022 The EveryLife Foundation is hosting Virtual Rare
Disease Week on Capitol Hill from February 22 — March 3, 2022,
bringing together rare disease community members from across the
country to be educated on federal legislative issues, meet other
advocates, and share their unique stories with legislators. There
will be lots of activities including a Rare Disease Congressional
Caucus Virtual Briefing. For more information, click the red button below. |
|
Public
Health Programs for Dementia Caregivers: Finding, Selecting and
Implementing Evidence-Based Interventions for Your Community February 23,
2022 | 12:00 PM - 1:30 PM ET | Online Making sure that high quality dementia caregiving
programs are available in the community is important. How can we
be confident that these programs are not received well, but
effective as well? There are tools available for public health
agencies and service providers that make it easy to find, select
and implement dementia caregiver programs that are not only
effective, but the “right fit” also. This presentation will
address challenges, resources (including Best Practice
Caregiving) and how research and practice is effectively bridged
so that we can provide the best possible programs for those who
care for people living with dementia. Click the red button below to register. |
|
AAHCM
Webinar: The National Home Care Medicine Practice Directory -
Helping Patients, Caregivers, and the Healthcare Community find
Home Care Providers February 24,
2022 | 1:00 PM - 2:00 PM ET | Online The American Academy of Home Care Medicine (AAHCM)
is holding a webinar February 24, "The National
Home Care Medicine Practice Directory: Helping Patients,
Caregivers, and the Healthcare Community find Home Care
Providers." The National Home Care Medicine Practice
Directory is a new searchable online directory offering a
trusted resource for high-quality, age-friendly care in the home.
The directory increases access to home-based primary care that
offers high-quality, convenient, at-home services for patients,
caregivers, health systems, and referring practitioners. The webinar will give an overview of how the
directory was developed and partners involved, data sets it was
based on, why it’s so important to home care medicine and what
the future of the directory may hold, as well as practical information
on how the directory works and how to update your
practice/provider profile. To learn more, click here. To
register, click on the red button below. |
|
Rare
Disease Day at NIH 2022 February 28,
2022 | 10:00 AM - 6:00 PM | Online Rare Disease Day at NIH will be held virtually on
Monday, Feb. 28, 2022, from 10 a.m. to 6 p.m. EST. This year’s
event will feature panel discussions, rare diseases stories,
virtual exhibitors and scientific posters. Rare Disease Day at NIH seeks to bring together a
broad audience including patients, patient advocates, caregivers,
health care providers, researchers, trainees, students, industry
representatives and government staff. The event is free and open
to the public. The goals of Rare Disease Day at NIH are to: · Demonstrate
the NIH commitment to helping people with rare diseases through
research. · Highlight
NIH-supported rare diseases research and the development of
diagnostics and treatments. · Initiate
a mutually beneficial dialogue among the rare diseases community. · Exchange
the latest rare diseases information with stakeholders to advance
research and therapeutic efforts. · Shine a
spotlight on stories told by people living with a rare disease,
their families and their communities. To learn more about Rare Disease Day, click here. To
register, click on the red button below. |
|
ARCH
National Respite Network and Resource Center
Conference: Call for Abstracts The ARCH (Access to Respite Care and Help) National
Respite Network and Resource Center has announced a call for session
abstracts to be presented at the National Lifespan
Respite Conference. The National
Lifespan Respite Conference will
take place on September 14-15, 2022 in Madison, WI. The
conference will offer valuable, up-to-date information for
families, professionals and other stakeholders related to respite
supports for caregivers. Conference keynote speakers and breakout
sessions will offer a multitude of opportunities to Reimagine
Respite for Lifespan Respite Care Programs and the broader
respite network that supports caregivers. ARCH is looking for presentation proposals that
focus on respite care, but cross over multiple disciplines,
reflecting the wide range of options required and utilized by
caregivers across the lifespan. Proposals may center around the
following tracks: · Innovative
Service Delivery throughout the Lifespan · Advances
in Research and Evaluation · Strengthening
the Respite Provider Workforce · Advocacy
and Networking for Sustainability · Family
Caregiver Perspectives · Lifespan
Respite Track Abstracts must be submitted by March 1. To learn more and apply, click the red button below. |
|
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 fellowship and apply, visit the
link below. |
|
Webinar:
Mental Health & Aging: Supporting a Loved One March 2,
2022 | 1:00 PM - 2:00 PM ET | Online This webinar is intended for social workers, nurses,
care staff and family members caring for the older adult
population who may be at risk for or who have common respiratory
diseases. The webinar will discuss common diseases and how they
affect older adults, tips to mitigate risks, and resources. Participants in this webinar will be able to: · State
common respiratory diseases of older adults. · Define how
these diseases can affect older adults. · Explain
management of common respiratory diseases in older adults. · State
simple tips to mitigate risks of common respiratory diseases in
older adults. · Identify
common respiratory disease resources. To learn more about the webinar, click here. To
register, click the red button below. |
|
The Joy
of Using LEGO Serious Play in Caregiving March 4,
2022 | 12:00 PM - 1:00 PM ET | Online March 4th, from
noon to 1:00p.m. LEGO Serious Play (LSP) is a methodology that
was developed to help organizations communicate, listen and work
more effectively together through the building and sharing of
LEGO brick models. In this session, Loretta Woodward Veney, family
caregiver and trained LSP facilitator, will teach participants
what LSP is, and how it can be used with care partners, care
receivers and in Memory Café sessions to spark past memories,
make new memories and bring joy and hope to the caregiving experience. |
|
American
Hospital Association Advancing Care
Conference March 7th -
9th, 2022 The American Hospital Association (AHA) Center for
Health Innovation is holding it's Advancing Care
Conference for health care professionals in Chicago March
7-9. The focus for the Advancing Care Conference will be
equipping interdisciplinary teams – from frontline staff to
leaders – with the best and next practices in: · team
performance · well-being · quality
and outcomes · education
and facilitation There will be sessions on
the Age-Friendly Health Systems movement and on
age-friendly programs, including on geriatric emergency
departments, geriatric surgery, hospital at home and palliative
care. The in-person conference will be supplemented with a
virtual collaboration space that aims to provide attendees with a
customized and actionable experience. Using a three-phase format
provides you with the accountability and structure you need to
make a positive impact at your organization. To learn more, click here. To
register for the conference, click the red button below. |
|
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. |
|
Common
Respiratory Diseases in Older Adults March 29,
2022 | 1:00 PM - 2:00 PM ET | Online This webinar is intended for social workers, nurses,
care staff and family members caring for the older adult
population who may be at risk for or who have common respiratory
diseases. The webinar will discuss common diseases and how they
affect older adults, tips to mitigate risks, and resources. Participants in this webinar will be able to: · State
common respiratory diseases of older adults. · Define how
these diseases can affect older adults. · Explain
management of common respiratory diseases in older adults. · State
simple tips to mitigate risks of common respiratory diseases in
older adults. · Identify
common respiratory disease resources. To learn more about the webinar, click here. To
register, click the red button below. |
|
Call for
Applications: The
Butler-Williams Scholars Program 2022 The National Institute on Aging's (NIA)
Butler-Williams Scholars Program has a call for applications for
their 2022 cohort. The program provides
distinctive opportunities for researchers and faculty who are new
to the field of aging to gain more knowledge about this field. It
includes lectures, seminars, and small group discussions in
research design relative to aging, including issues relevant to
aging of ethnic and racial minorities. Lectures will cover topics
in research on aging, including: the biology of aging; genetics
and Alzheimer's disease; and health, behavior, and aging. Researchers with an interest in health disparities
research are encouraged to apply. Applications are due April 15. To learn more about the Butler-Williams Scholars
Program, click here. To apply, click the red button below. |
|
The
Public Health Opportunities and
Challenges of Dementia Caregiving June
14th-15th, 2022 You are invited to the in-person BOLD
Public Health Opportunities and Challenges of Dementia Caregiving
Conference on June 14 & 15! Join the BOLD Public Health
Center of Excellence in Dementia Caregiving in person @McNamara
Alumni Center (MN), and hear from experts what states and communities
are doing to elevate dementia caregiving as a public health
issue. This conference is intended for BOLD public health
programs; public health departments (local, state, tribal);
service providers and/or community-based organizations serving
dementia caregivers; researchers and policy makers. To learn more or register for the conference, click
the red button below. |
|
PATIENT AND
CAREGIVER STUDIES |
|
Survey
from Lupus and Allied Diseases Association on health technology
assessments Lupus and Allied Diseases Association, Inc. (LADA)
is inviting U.S. based patient advocacy organizations to
participate in a brief survey regarding Health Economic Assessments (HEAs),
Health Technology Assessments (HTAs) and Value Assessments (e.g.
ICER Drug Reviews). The results will help us to better gauge the
current level of knowledge and experience that organizations have
with these assessments and to inform the degree of educational
resources needed to better prepare groups to participate. Please have only one individual take the survey on
behalf of your organization and once you have completed it please
share the survey with your patient advocacy networks based in
the United States only. This project is being developed and managed
entirely by LADA and once the survey is closed we will share the
findings. |
|
LGBTQ+
Research Connections LGBTQ+ Research Connections is a new offering
through the National Resource Center on LGBT Aging. Each year the
NRC receives numerous requests to help identify older LGBTQ+
people to participate in academic research studies. LGBTQ+
inclusive research is important to expand the knowledge base
related to aging as an LGBTQ+ person. Through LGBTQ+ Aging
Research Connections, academic researchers are invited to submit
an application for review and approval for listing on the
website. LGBTQ+ community members will then be able to learn
about research opportunities they may wish to participate
in. Research opportunities are updated on a monthly
basis. |
|
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. |
|
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. |
|
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 |
|
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. |
|
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. |
|
IN CASE YOU
MISSED IT... |
|
2022
Caregiver Training Camp - Practical Tools
for Dementia Caregiving |
|
Caregiving and dementia expert Sarah Hyde-Williams,
owner of Senior Living Advisors of Texas, discusses ways
caregivers can better assist and communicate with their care
recipients who are living with dementia, along with practical
tips for effective caregiving, during the AGE of Central Texas
2022 Caregiver Training Camp conference. This annual conference
was created by AGE of Central Texas to assist first-time
caregivers – and in particular, those living in rural areas of
Central Texas – to better manage the dynamics of their new
caregiving role. |
|
Picking
Up the Pace of Change: Scaling Services for a
Changing Caregiver Profile Family caregivers are experiencing higher levels of
isolation and stress due to COVID-19, which has complicated
access to respite care and in-home paid caregiving. Picking Up the Pace of Change: Scaling Services for
a Changing Caregiver Profile describes an ongoing project to
enhance counseling, training, and other services offered by
California’s 11 nonprofit Caregiver Resource Centers (CRCs). Published by the Family Caregiving Institute at UC
Davis in Sacramento, CA, the report highlights the CRCs’
deployment of an interactive online system to assess and meet
caregivers’ needs during the pandemic. The report also proposes
using data collected in that system to support evaluation of the
CRC service model. Notably, compared with other caregiver populations,
CRC clients are more likely to: · Provide
complex medical/nursing care at home · Live
with a care recipient · Care for
people who have dementia and cannot be left alone |
|
Rare
Disease Day Downloads Rare Disease Day is February 28, 2022. Find here all
the materials you need to raise awareness and instigate change
for people living with a rare disease. Social media posts,
posters, infopacks, tool kits, fact sheets, infographics and
more. Post these materials on Rare Disease Day to help raise
awareness and support the rare disease community. |
|
Supporting
Family Caregivers of Older Adults with a History of Trauma:
Implementation Recommendations for the National Family Caregiving
Strategy The Administration on Community Living has played a
crucial role in ongoing efforts to develop a national family
caregiving strategy. In support of those efforts, agencies representing
diverse populations and experts from various disciplines have
drafted recommendations on person-centered, trauma-informed care
for family caregivers of elders with a history of trauma. The recommendations are aimed at: · Increasing
the use of family caregiver support services · Promoting
better outcomes for both caregivers and care recipients |
|
Improving
Primary Care for People With Disabilities The National Association of Councils on
Developmental Disabilities (NACDD), with support of
UnitedHealthcare Community & State (UHCCS), partnered with
the UHCCS National Federally Qualified Health Center (FQHC)
Advisory Board and the National Advisory Board (Boards) to more
fully understand the challenges individuals with disabilities
face when accessing primary care and to identify ways the health
care system can be strengthened to deliver comprehensive,
person-centered care that best meets their needs. NACDD
coordinated community surveys of individuals with disabilities,
caregivers, state Developmental Disability (DD) Council leaders,
and health care professionals from across the nation in August
2021 to collect feedback and anecdotal evidence on primary care
access. These surveys were promoted through the Boards, within
the NACDD network of consumers and advocates, and to health care
provider partners. The brief provides an overview of those
findings with insights from members of the Boards. |
|
Yoga 4
Caregivers Yoga4Caregivers offers a safe, private,
non-judgmental online community focused on educating and
empowering Caregivers (family/chosen family/professional) to
explore the embodied self-care practices of yoga, meditation and
mindful movement. These tools are proven to calm the nervous
system, increase the mind-body connection and improve physical
health, mental health and well-being. We call this community a Caregiver Kula. Kula is a
Sanskrit term that means, an intentional community of the heart.
This community is supported by volunteer Yoga Teachers, Yoga
Therapists and Wellness Educators. All Caregivers including family, chosen family and
medical/social service professional caregivers are welcome here.
All have a shared experience of anxiety/stress, burnout and compassion
fatigue. To follow Yoga4Caregivers on Twitter, click here. To
join on Facebook, click the red button below. |
|
Video
Series: Tips for Managing Alzheimer's and Dementia Symptoms Research shows that individuals – including those
living with dementia – want to
stay at home. That goal may become difficult for someone with
Alzheimer’s disease or another form of dementia. This video
series provides tips from Dr. Lakelyn Hogan, Home Instead
gerontologist and caregiver advocate, to help you be the best care
partner so your loved one may enjoy living at home safely. To access the video series, click on the link below. |
|
Top 17
Resources for Family Caregivers If you’re a family caregiver, you may have questions
about your care recipient’s health condition, care planning or
how to navigate daily care activities. This one-sheet of
top resources produced by the Family Caregiver Alliance provides
a wealth of answers and guidance to these questions and more.
This list contains the most popular resources as rated by the
family caregivers we’ve served for more than 40 years. We hope
they help you too! To access the list of resources, click the red
button below. |
|
A Guide
to Finding an LGBTQ+ Inclusive Long-Term
Care Community Welcoming policies, practices, and culture are all
factors that should be considered when trying to find an
inclusive and welcoming long-term care facility for LGBTQ+
elders. Learn how to properly screen facilities for these and
other factors in a resource created by the Human
Rights Campaign Foundation and SAGE. |
|
Video
Series: Tips for Managing Alzheimer’s
and Dementia Symptoms Research shows that individuals – including those
living with dementia –
want to stay at home. That goal may become difficult for someone
with Alzheimer’s disease or another form of dementia. This video
series provides tips from Dr. Lakelyn Hogan, Home Instead
gerontologist and caregiver advocate, to help you be the best
care partner so your loved one may enjoy living at home safely. |
|
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. |
|
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. |
|
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. |
|
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 |
|
FOLLOW US
TO STAY CURRENT ON CAREGIVING! |
|
|
|
|
|
|
