Rosalynn Carter once said, "There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers."
Informal caregiving is assisting those you care about who might be chronically ill, frail, or disabled, and unable to care for him/herself. It can mean partial assistance or 24-hour care for someone who can't dress, feed themselves, go to the bathroom alone, or think for himself or herself. For those who live in rural areas, finding resources to help with caregiving can be difficult. Rural caregivers are isolated from social support, resources, financial assistance, training, respite options, community programs, and information on caregiving.
According to the National Family Caregivers Association's Caregiving Statistics, more than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled, or aged family member or friend during any given year and also spend an average of 20 hours per week providing care for their loved one.
Caregiving can last for a few months or it can go on for years. Caregiving can take place in a person’s home, in a nursing home, or even long-distance. It involves communicating with doctors and other healthcare professionals. An adult child may have to balance work and family responsibilities, including raising their own children, while providing care of an older adult.
Caregiving is full of different stages, transitions, and stresses including financial and family burdens. It is in a constant state of change. Family dynamics are changed. Caregiving means compromising part of your life to assist someone with theirs. It can involve great sadness over a loved one's loss of normalcy and mobility.
Sources
Caregiving Statistics, National Family Caregivers Association
Related Guides
Frequently Asked Questions
Tools
AARP: Caregiving Resource Center
Database
Provides documents, reports, speeches, news, and legislation related to caregiving.
Caring Connections
Web site
Provides caregiving resources, including individual state advanced directives. Brings together community, state, and national partners working to improve end-of-life care.
Eldercare Locator
Database
Connects older Americans and their caregivers with sources of information on senior services.
Links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers.
Family Caregiving 101
Web site
Provides assistance, answers, new ideas and helpful advice for caregivers and their loved ones. Sponsored by the National Family Caregivers Association and the National Alliance for Caregiving.
GrandFacts: State Fact Sheets for Grandparents and Other Relatives Raising Children
Web site
Includes data on the number of grandparent caregivers in each state, state foster care policies for grandparent caregivers, and information on public benefit programs.
National Center on Caregiving
Web site
Serves as a source of information on caregiving and long-term care issues for policy makers, service providers, media, funders, and family caregivers. Provides the Family Care Navigator, a state-by-state, online guide of private caregiver support programs.
National Family Caregiver Support Program (NFCSP)
Web site
Provides grants to States and Territories, based on their share of the population aged 70 and over, to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible.
National Resource Center for Participant-Directed Services
Web site
Provides leadership, technical assistance, education, and research for home and community-based services for individuals with disabilities. Formerly called Cash & Counseling.
Opening an Adult Day Center
Web site
Provides information on how to open up an adult day care center.
Program of All-Inclusive Care for the Elderly (PACE)
Web site
Addresses the needs of long-term care clients, providers, and payers. Features a comprehensive service delivery system and integrated Medicare and Medicaid financing. Permits loved ones to continue living at home while receiving services rather than being institutionalized.
Rural Caregivers
Web site
Helps bridge the information gap and assist in creating a web support community for rural caregivers. Provides online resources, organizations, state contacts, materials, and support.
Selected Caregiver Statistics
Web site
Provides definitions of caregivers, statistics and data, gender, age, ethnicity, relationships, economics, and support.
State Program Information: State Profiles
Web site
Contains individual state profiles which include a listing of publicly-funded caregiver support programs. This is the updated version of the 2004 Caregiving Across the States: Publically Funded Programs project.
VA Caregiver Support
Web site
Offers information for caregiving of a Veteran. Includes a toll-free National Caregiver Support Line 1-855-260-3274.
Funding
Family Respite Care Grant
Funding to help alleviate the cost of respite care for families caring for loved ones with Alzheimer’s disease or a related dementia.
Inactive Funding
Inactive Funding Opportunities -
Lists additional funding programs for this topic that are not currently accepting applications. Programs that are inactive may be offered again in the future.
Regulations, Forms & Other Useful Documents
Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support
Author(s): Lynn Friss Feinberg, Kari Wolkwitz, Cara Goldstein
Sponsoring organization: AARP
Highlights emerging trends that have implications for addressing the needs of family caregivers. Includes caregiver assessment, consumer direction in family caregiver support services, and collaborations between the aging network and the health care system.
Date: 03 / 2006
Caregivers of Veterans: Serving on the Homefront
Sponsoring organization: National Alliance for Caregiving
Assesses the needs of caregivers of veterans
from combat eras dating from World War II to
the wars in Iraq and Afghanistan. Includes data on small towns and rural areas.
Date: 11 / 2010
Caregiving in Rural America
Sponsoring organization: Easter Seals
Overview of rural caregiving in the United States, with a comparison between urban and rural caregiving. Includes profiles of rural caregivers and examples of programs that serve rural caregivers.
Date: 2006
Caregiving in Rural Communities: 12 Tips for Caregivers
Author(s): Laura Bauer
Sponsoring organization: Johnson & Johnson
Provides 12 tips for rural caregivers to help them feel less isolated and better prepared for the daily demands of providing care to a loved one.
Date: 2006
Caregiving in the U.S. 2009
Sponsoring organization: National Alliance for Caregiving
Examines today's caregivers and compares it to those in the past. Areas studied include the prevalence and demographics of caregivers, care recipients, caregiving activities, how caregivers' lives are affected, their use of the Internet and other technology, and which public policies would support caregivers. Compares some of the data by rural, urban, and suburban location.
Date: 11 / 2009
Caring for Caregivers
Sponsoring organization: American Psychological Association
Discusses how the emotional and financial drain of caregiving can lead to severe consequences in both the workplace and in the home. Discusses how psychologists and other researchers are working to learn more about the tolls and rewards of caregiving, and reducing caregivers' stress and anxiety through programs like adult day care and caregiver family therapy.
Journal citation: Volume 37 Issue 10
Date: 11 / 2006
Evercare Study of Caregivers in Decline: A Close-Up Look at the Health Risks of Caring for a Loved One
Sponsoring organization: National Alliance for Caregiving
Research conducted to better understand the needs of caregivers who are in fair or poor health and who say their health has declined as a result of providing care for a loved one. Identifies wellness and prevention areas in which caregivers need help, and programs and services that aid in them attaining better health.
Date: 09 / 2006
Faith in Action: Summary of Interfaith Volunteer Caregivers Program
Sponsoring organization: Robert Wood Johnson Foundation
Discusses the three phases of the Faith in Action Caregivers Program. Includes how in rural areas, ministers may be part time and live in another community.
Date: 05 / 2009
Family Caregiver Support of the Rural Elderly
Sponsoring organization: National Advisory Committee on Rural Health and Human Services
Chapter from the 2006 Report to the Secretary: Rural Health and Human Service Issues. Discusses family caregiver support in rural areas and the Program of All-inclusive Care for the Elderly (PACE) in rural areas and the role of grandparents as caregivers of children. Includes information on respite care, screening of caregivers, and the unmet needs of caregivers.
Date: 01 / 2006
Family Caregiving 2010: Year in Review
Sponsoring organization: Family Caregiver Alliance
Highlights important developments in 2010 affecting family caregivers, including legislative and policy changes; research focused on caregivers; and media coverage of family caregiving.
Date: 03 / 2011
Grandparents Raising Grandchildren: Case Management in a Rural Setting
Author(s): Nancy Kropf, Stacey Kolomer
Discusses diversity aspects of grandparents who are raising grandchildren. Highlights support groups, the primary intervention for custodial grandparents, and models that have relevance for subpopulations of care providers.
Date: 01 / 2009
Kinship Caregiver Support Act
Sponsoring organization: Alliance for Children and Families
A summary of the Kinship Caregiver Support Act (S. 661) which would provide assistance to relatives who become the legal guardians of children in foster care.
Date: 06 / 2007
Look at Working-Age Caregivers' Roles, Health Concerns, and Need for Support
Author(s): Alice Ho, Sara R. Collins, Karen Davis, Michelle M. Doty
Sponsoring organization: Commonwealth Fund
Results of a survey which discovered that caregivers are less likely to be working, more likely to miss days of work when they are employed, and more likely to lack health insurance coverage.
Date: 08 / 2005
MetLife National Study of Adult Day Services: Providing Support to Individuals and Their Family Caregivers
Sponsoring organization: MetLife Foundation
Presents the results of a study that analyzes characteristics of adult day services, including years of operation, physical spaces, sources of revenue, age distribution, health status, living arrangements, caregiver support, care planning, and health services provided.
Date: 10 / 2010
MetLife Study of Working Caregivers and Employer Health Care Costs: New Insights and Innovations for Reducing Health Care Costs for Employers
Sponsoring organization: National Alliance for Caregiving
Discusses how caregiving, employer health costs, and employer-sponsored wellness benefits intersect. Includes demographics, health, risk factors, medicals costs, and absenteeism of caregivers.
Date: 02 / 2010
National Meals On Wheels Rolls Out Into Rural Areas
Author(s): Hilary Gibson
Sponsoring organization: Caregiver.com Inc.
Discusses the history of Meals on Wheels and their expansion into rural parts of the country due to the ability to offer individually packaged, frozen meals with foods that are simple to reheat as needed and can be ordered a month at a time.
Journal citation: Today's Caregiver Issue 497 Pages: 1
Date: 08 / 2010
Place to Call Home: What the Future of Elder Care Should Be
Sponsoring organization: Robert Wood Johnson Foundation
Discusses the Green House, which is a place where elders can receive assistance and support with daily living and clinical care without the assistance and care becoming the focus of their existence. Also discusses the Green House model, developing a business plan, and how it could be replicated.
Date: 12 / 2007
Rural Caregiving
Author(s): Liza Berger
Sponsoring organization: Caregiver.com Inc.
Discusses caregiving in rural areas including issues with lack of resources, transportation, support, cultural barriers, monetary assistance, and other challenges.
Date: 2010
Rural Caregiving in the United States: Research, Practice, Policy
Author(s): Ronda Talley, Kathleen Chwalisz, Kathleen Buckwalter
Sponsoring organization: Rosalynn Carter Institute for Caregiving
Covers rural, elder, and family caregiving. Discusses disparities, care for children in rural areas, mental health concerns, workforce issues, telemedicine, education and training, and support.
Date: 2011
Supporting Rural Family Caregivers
Sponsoring organization: U.S. Department of Health and Human Services
Archived video from March 19, 2008. Presents a discussion of the difficulties faced by rural family caregivers and how to support them in areas with limited provider agencies, manpower shortages, and transportation challenges.
Date: 03 / 2008
Today's Caregiver: Rural
Sponsoring organization: Caregiver.com Inc.
Entire issue of Today's Caregiver is devoted to rural issues.
Journal citation: Today's Caregiver Issue 48
Date: 08 / 2011
Toolkit for Serving Diverse Communities
Sponsoring organization: Administration on Aging
Highlights a method for providing respectful, inclusive and sensitive services for any diverse community. Consists of a four-step process and a questionnaire that assists professionals, volunteers and grassroots advocates with every stage of program planning, implementation and service delivery for older adult communities, their families and caregivers, including rural populations.
Date: 06 / 2011
Valuing the Invaluable: 2011 Update The Economic Value of Family Caregiving in 2009
Author(s): Lynn Feinberg, Ari Houser, Susan Reinhard, Rita Choula
Sponsoring organization: AARP Public Policy Institute
Discusses the financial impact of caregiving on the caregivers themselves as well as the economic value of their contributions to society.
Date: 07 / 2011
Journals
Today's Caregiver
Bi-monthly publication which contains articles on a variety of topics relating to caregiving.
Organizations
Administration on Aging (AoA)
Federal government
Advocates for older persons and their concerns at the federal level. Administration on Aging (AoA) works closely with its nationwide network of State and Area Agencies on Aging (AAA). Provides home and community-based services to millions of older persons through the programs funded under the Older Americans Act.
ARCH National Respite Network and Resource Center
National organization
Assists and promotes the development of quality respite and crisis care programs. Helps families locate respite and crisis care services in their communities. Includes the National Respite Locator Program.
Caregiver.com Inc.
Nonprofit/Foundation
Provides information, support, and guidance for family and professional caregivers. Produces Today's Caregiver magazine.
Family Caregiver Alliance (FCA)
National organization
Offers programs at national, state, and local levels to support and sustain caregivers. Provides information, education, services, research, and advocacy.
Meals on Wheels Association of America (MOWAA)
National organization
Works to bring meals to seniors in need including men and women who are elderly, homebound, disabled, frail, or at risk. Supports the Rural Initiative, a model for the rural Senior Nutrition Program.
MENTOR / National Mentoring Partnership
National organization
Works with state and local partnerships to provide resources, services, and support needed to serve young people. Includes programs for after school mentoring as well as caregiving programs for children whose parent(s) are in prison. Offers the Mentoring Children of Prisoners: Caregiver's Choice.
National Adult Day Care Services Association (NADSA)
National organization
Provides programs designed to meet the needs of functionally and/or cognitively impaired adults. Provides listing of state associations. Explains the steps in how to open up an adult day care center.
National Alliance for Caregiving (NAC)
Nonprofit/Foundation
A coalition of national organizations focused on issues of family caregiving. Conducts research, policy analysis, develops national programs, increases awareness of family caregiving issues, and works to strengthen state and local caregiving coalitions.
National Association of Professional Geriatric Care Managers (GCM)
National organization
Provides information on geriatric care managers, who are trained specialists who act as guides and advocates for families doing caregiving.
National Center for Assisted Living (NCAL)
National organization
Serves the needs of the assisted living community through national advocacy, education, networking, professional development, and quality initiatives.
National Family Caregivers Association (NFCA)
National organization
Supports and educates those who care for a chronically ill, aged, or disabled loved one.
National Hospice and Palliative Care Organization (NHPCO)
Nonprofit/Foundation
Represents hospice and palliative care programs and professionals in the United States. Committed to improving end of life care and expanding access to hospice care. Offers a hotline, 1-800-658-8898.
National PACE Association (NPA)
National organization
Works to advance the efforts of Program of All-inclusive Care for the Elderly (PACE). PACE programs coordinate and provide all needed preventive, primary, acute, and long term care services so that older individuals can continue living in the community.
National Private Duty Association (NPDA)
National organization
Supplies information for providers of private duty home care, which includes non-medical home care services. Works to add strength and professionalism of private duty home care providers through education and best practices.
National Volunteer Caregiving Network
National organization
Formerly called Faith in Action. Provides resources for volunteer caregiving programs such as technical assistance, training teleconferences, an annual national conference, and links to other websites that offer information for volunteer caregiving programs and individuals. This in an interfaith volunteer caregiving program of The Robert Wood Johnson Foundation.
Rosalynn Carter Institute for Caregiving (RCI)
Nonprofit/Foundation
Establishes local, state and national partnerships committed to building quality long-term, home and community- based services.
Visiting Angels
National organization
Consists of non-medical, private duty home care agencies providing senior care, elder care, personal care, respite care, and companion care to help the elderly and adults continue to live in their homes across America. Provides up to 24 hour care.
Well Spouse Association (WSA)
Nonprofit/Foundation
Gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse support groups exist or are being formed in many areas of the country.
Terms & Acronyms
Activities of Daily Living (ADL) Physical functions that an independent person performs each day, including bathing, dressing, eating, toileting, walking or wheeling, and transferring into and out of bed.
Geriatric Care Manager (GCM) A health and human services professional, such as a gerontologist, nurse, social worker, or psychologist with a specialized focus on issues related to aging and elder care. Geriatric care managers work privately with older adults and their families to create a plan of care that meets the needs of the older adult. They will meet with you to help you understand your loved one's needs and to learn what resources and options are available to meet those needs.
Kinship Care Children being raised by relatives other than their parents.
Long Term Care (LTC) Personal care and other related services provided on an extended basis to people who need help with activities of daily living or who need supervision due to a severe cognitive impairment. It can be provided at home, in a nursing home, assisted living facility, or an adult day care center.
Palliative Care Care given to improve the quality of life of patients who have a serious or life-threatening disease. Also called comfort care, supportive care, and symptom management. This care can be given at the same time a patient receives treatment for a medical condition.
Sandwich Generation Adults who are taking care of their parents as well as raising their own children.
Skipped-Generation Household Where a grandparent and grandchild reside with no parent present.
Success Stories
CareLink On-Line - offers a wide range of eldercare services for senior citizens in Little Rock and Central Arkansas, including Meals-On-Wheels, Home Care, Senior Centers and aging information and assistance. Serves people of all incomes, and provides a cost-effective alternative to nursing home care.
Mobile Day Care - A successful program in Georgia, which brings social day care to rural communities that do not have the resources to create and staff their own full-time program.
Senior LinkAge Line - provides free information and assistance for seniors and their families looking for services in rural areas of Minnesota including Meals on Wheels, chore services, and transportation services.
|
