Related Guides on this Topic
You may also want to see these guides on related topics:
Aging, Long-Term
Care, Home Health, Hospice and Palliative Care
Introduction
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."
A 75 year old woman, with arthritis and diabetes, is trying to take care of her husband who has Alzheimer’s.
A son, raising his own children, lives out of town and is trying to arrange health care for his aging parents, who live at home.
A single mom has a child, with a chronic neurological disease.
A mentally retarded teenager needs to be moved to a group home because his care can no longer be managed in his family's home.
An elderly couple, themselves on a limited income, are raising their two small grandchildren, trying to prevent them from being placed in foster care.
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 AARP Public Policy Institute Issue Brief, Valuing the Invaluable: A New Look at State Estimates of the Economic Value of Family Caregiving Research Report, by Ari N. Houser and Mary Jo Gibson, June 2007, between 30-38 million adult people provide care to adults with a
limitation in an activity of daily living
or instrumental activity of daily
living.
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. According to data from the Commonwealth Fund Issue Brief, "A Look at Working-Age Caregivers' Roles, Health Concerns, and Need for Support", by Alice Ho, Sara R. Collins, Karen Davis, and Michelle M. Doty, August 2005, nearly 16 million working-age adults are currently providing care for a family member. Two-thirds of all caregivers also work outside the home.
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.
Frequently Asked Questions
Tools
AARP Policy & Research for Professionals in Aging: Caregiving
Database
Provides documents, reports, speeches, news, and legislation.
Caregiver.com
Web site
Provides information, support and guidance for family and professional caregivers. Includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, chat rooms and an online store.
Caregiving
Web site
Provides information on resources, caregiving costs, and finding support.
Caregiving Across the States: A State-by-State Resource
Web site
Information on publicly-funded caregiver support programs in each of the 50 states and the District of Columbia.
Caregiving Resources
Web site
Contains a host of caregiving information including organizations, website, hospice, advocacy, prescription assistance, respite resources, training for caregivers, and volunteer agencies.
CareGuide@Home
Web site
Care management company dedicated to helping people lead more comfortable, secure and independent lives. Provides families with personalized solutions and support in the daily process of caregiving.
Caring Connections: Caring for Someone
Web site
Contains information and resources about being a caregiver and where to find additional help on the Internet and in your community.
Cash & Counseling
Web site
Provides a flexible monthly allowance to recipients of Medicaid personal care services or home and community based services, which allows them to direct and manage their own personal assistance services and address their own specific needs.
Eldercare Locator: Community Assistance for Seniors
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 Care Resource Connection
Web site
A clearinghouse of materials on caregiving. Topics include medical conditions, such as Alzheimer's Disease, Stroke, Parkinson's Disease, Hand-on Skills for Caregivers,
Legal and Financial Information, Coping with Caregiving, and Community Resources.
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.
Family Caregiving: eXtension
Web site
Provides information on conferences, frequently asked questions, articles, news, resources, financial security, and more regarding caregiving.
Home & Community Based Services
Web site
Assists states in improving the overall quality of services provided to Medicaid recipients, provides states with experience in quality assessment and improvement systems, and helps develop effective methods to utilize quality implementation and improvement strategies. Allows states to request and provide homemaker/home health aide services, personal care services, adult day health, case management, and respite care.
Home Health Compare
Web site
Provides detailed information about Medicare-certified home health agencies in your area.
MinnesotaHelp.info
Web site
Provides an online directory of services to help people in Minnesota identify resources such as human services, information and referral, financial assistance, and other forms of aid and assistance. It is especially rich in resource information for seniors and their caregivers; people with disabilities and their caregivers; parents and families; and low income people
National Center on Caregiving
Web site
Works to advance the development of high-quality, cost-effective policies and programs for caregivers in every state in the country. Serves as a central source of information on caregiving and long-term care issues for policy makers, service providers, media, funders and family caregivers throughout the country.
National Family Caregiver Support Program Resource Room
Web site
Provides families, caregivers, and professionals with information including where you can turn for support and assistance, and providing services to caregivers.
National Respite Locator Service
Database
Helps parents and caregivers locate respite services. Search for respite care providers by state, age and condition.
President's New Freedom Initiative
Web site
Progress reports, news and other information on President Bush's New Freedom Initiative, a comprehensive program to promote the full participation of people with disabilities in all areas of society.
Program of All-Inclusive Care for the Elderly (PACE)
Web site
Developed to address the needs of long-term care clients, providers, and payers. Permits loved ones to continue living at home while receiving services rather than be 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 and more.
Selected Caregiver Statistics
Web site
Provides definitions of caregivers, statistics and data, who informal caregivers are, economics of care giving, and support.
Supporting Rural Family Caregivers: Satellite Broadcast Resource List
Web site
From the March 19, 2008 satellite broadcast. Contains links to electronic resources for both caregivers and professionals developed by a variety of organizations including federal, national, state, and local agencies.
Regulations, Forms & Other Useful Documents
2006 Report to the Secretary: Rural Health and Human Service Issues
Sponsoring organization: National Advisory Committee on Rural Health and Human Services
Report to the Secretary of the U.S.
Department of Health and Human Services. Includes chapters focused on pharmaceuticals and pharmacy services, health information technology, and family caregiver support. Includes recommendations to address these topics.
Date: 01 / 2006
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 three emerging trends that have important implications for addressing the needs of family caregivers: caregiver assessment; consumer direction in family caregiver support services; and collaborations between the aging network and the health care system.
Date: 03 / 2006
American Grandparent Responsibilities on the Rise
Author(s): Charles Dervarics
Sponsoring organization: Population Reference Bureau
Presents information on the growing number of U.S. elderly, who are caring for young children.
Date: 04 / 2004
Caregiving in America
Sponsoring organization: International Longevity Center
Documents caregiving issues, including increasingly too few caregivers, too many people needing care, the caregiving crisis and why it's growing, providing care, burden on family caregivers, shortage of paid caregivers, and more.
Date: 2006
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. Part of the Rosalynn Carter Institute Caregivers Program.
Date: 2006
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
Caring for the Caregiver: Support for Cancer Caregivers
Sponsoring organization: National Cancer Institute
Provides the basics of practical and supportive information for cancer caregivers.
Date: 2007
CMS’ Legal Authority to Support Caregivers
Sponsoring organization: Centers for Medicare & Medicaid Services
Describes the Centers for Medicare and Medicaid Services’ legal authority to support caregivers and the ways in which CMS currently supports caregivers through its programs. Intended to serve as a resource for organizations that work on behalf of caregivers.
Date: 09 / 2007
Difficulty in Providing Care Among Informal Caregivers
Sponsoring organization: University of North Dakota Center for Rural Health
Examines characteristics of informal caregivers who experience difficulties when providing care to Native American elders.
Date: 2003
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
Presents the results of 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. In addition, this research sought to identify the specific wellness and prevention areas in which caregivers need help, as well as programs and services that would help caregivers attain better health.
Date: 09 / 2006
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. Includes information on respite care, screening of caregivers, and the unmet needs of caregivers. Also discusses the Program of All-inclusive Care for the Elderly (PACE) in rural areas and the role of grandparents as caregivers of children.
Date: 01 / 2006
Family Caregiving: A Gesture of Love
Author(s): Hope Hanson
Sponsoring organization: Rural Assistance Center
Discusses the growing number of ill, disabled, or elderly who are being cared for at home by caregivers. Includes statistics and data, financial responsibilities, difficulties in rural areas, and finding help. Includes map of Elderly Populations in the United States.
Journal citation: Rural Monitor
Date: 11 / 2004
Family Caregiving: Informal Care and Grandparent Caregiving
Author(s): Richard Ludtke, Leander McDonald
Sponsoring organization: University of North Dakota Center for Rural Health
Discusses surveys conducted of informal caregivers providing care to elderly relatives and of grandparents who are primary caregivers for minor children.
Journal citation: North Dakota - Rural Health Updates Volume 20 Issue 2 Pages: 1
Date: 07 / 2003
Grandparents Living with Grandchildren: 2000
Sponsoring organization: U.S. Census Bureau
Presents information obtained from questions on the Census 2000 long form about coresident grandparents.
Date: 10 / 2003
Grandparents Raising Grandchildren: Caring for Children in the Frontier
Sponsoring organization: National Center for Frontier Communities
Describes the issues related to grandparents raising grandchildren. Includes information on rural and frontier custodial grandparents, with data and maps.
Date: 12 / 2004
Handbook for Long-Distance Caregivers: An Essential Guide for Families and Friends Caring for Ill or Elderly Loved Ones
Author(s): Bob Rosenblatt, Carol Van Steenberg
Sponsoring organization: Family Caregiver Alliance
Offers helpful tips, for those living an hour away or thousands of miles away, from those needing caregiving.
Date: 2003
Informal Caregivers and Grandparent Caregivers: Preliminary Results from a Collaborative Statewide Survey
Author(s): Richard Ludtke
Sponsoring organization: University of North Dakota Center for Rural Health
Presentation slides. Statistics on ND caregivers, services available to recipient of care, services available to caregivers. Includes both caregiving for adults and grandparents caring for grandchildren.
Date: 02 / 2003
Informal Caregiving
Sponsoring organization: LinkAge 2000
Discusses the role of family/informal caregiving as well as the services family members provide when caring for a loved one.
Date: 2004
Kinship Caregiver Support Act (summary)
Sponsoring organization: Child Welfare League of America
A summary of the Kinship Caregiver Support Act (S. 985) which takes steps to assist children being raised and cared for by grandparents and other relatives.
Date: 07 / 2004
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
National Meals On Wheels Rolls Out Into Rural Areas
Author(s): Hilary Gibson
Sponsoring organization: Caregiver.com Inc.
Discusses Meals on Wheels and their recent expansion into rural parts of our 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: Rural Caregiver Pages: 1
Date: 2005
Older Americans Act National Family Caregiver Support Program (Title III-E and Title VI-C) Compassion in Action
Sponsoring organization: Administration on Aging
Provides statistics on the number of caregivers served, examples of caregiving, resources and assistance, and program contacts.
Date: 2004
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 Healthy People 2010: Access to Quality Health Services in Rural Areas - Long-Term Care
Author(s): Linnae Hutchison, Catherine Hawes, Lisa Williams
Sponsoring organization: Southwest Rural Health Research Center
Addresses rural health long-term care issues associated with the Healthy People 2010 focus area on access to quality health services.
Date: 2005
Self-Directed Care Guidebook: Developing Your Program
Sponsoring organization: Georgia Department of Human Resources
Offers ideas in developing and implementing self-directed care in aging services. Designed to lay out the elements of a successful model employed in multiple geographic locales in Georgia.
State of the States in Family Caregiver Support: A 50-State Study
Author(s): Lynn Friss Feinberg, Sandra L. Newman, Leslie Gray, Karen N. Kolb
Sponsoring organization: Family Caregiver Alliance
Examines publicly funded caregiver support programs in all 50 states. Explores programs provided through the Older Americans Act's National Family Caregiver Support Program, Aged/Disabled Medicaid waiver programs, and state-funded programs. Highlights key findings, offers state-by-state profiles, pinpoints challenges, identifies issues for the future, and expands recognition of family caregiver needs as distinct from the needs of care receivers.
Date: 11 / 2004
Staying the Course: Trends in Family Caregiving
Author(s): Brenda C. Spillman, Kirsten J. Black
Sponsoring organization: AARP
Examines trends in disability and formal (paid) and informal (unpaid) care among persons age 65 or older with disabilities since the mid-1980s, as well as characteristics of all older persons with disabilities, their care arrangements, and their family members and family caregivers in 1994 and 1999.
Date: 11 / 2005
Women, Work and Family Health: A Balancing Act
Author(s): Roberta Wyn, Victoria Ojeda, Usha Ranji, Alina Salganicoff
Sponsoring organization: Kaiser Family Foundation
Examines women's roles in family health care decision-making and coordination, the
effect of that involvement for women who work, and women's caregiving responsibilities.
Date: 04 / 2003
Young Caregivers in the U. S.
Sponsoring organization: National Alliance for Caregiving
Results of a study on the prevalence of caregiving in the United States by children aged 8-18.
Date: 09 / 2005
Journals
Rural Caregiver
Focuses on specific information and support for rural caregivers.
Organizations
2-1-1
Nonprofit/Foundation
Provides callers with information about and referrals to human services for everyday needs and in times of crisis.
Administration on Aging (AoA)
Federal government
Advocates for older persons and their concerns at the federal level. 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
National organization
Assists and promotes the development of quality respite and crisis care programs and helps families locate respite and crisis care services in their communities.
Children of Aging Parents (CAPS)
Nonprofit/Foundation
Assists caregivers of the elderly or chronically ill with reliable information, referrals and support, and to heighten public awareness that the health of the family caregivers is essential to ensure quality care of the nation's growing elderly population.
Faith in Action (FIA)
National organization
An interfaith volunteer caregiving program of The Robert Wood Johnson Foundation. Faith in Action makes grants to local groups representing many faiths who volunteer to work together to care for their neighbors who have long-term health needs.
Family Caregiver Alliance (FCA)
National organization
FCA is the lead agency in California's system of Caregiver Resource Centers. FCA provides support and help to family caregivers and champions their cause through education, services, research and advocacy. Services are specific to California, although information can be accessed nationally.
Family Friends
Nonprofit/Foundation
Provides respite, and other services, by matching men and women volunteers over the age of 50 with families of children who have disabilities or chronic illness. Programs are located throughout the country.
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. Is the oldest and largest organization in the United States representing those who provide meal services to people in need.
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.
National Adult Day Care Services Association (NADSA)
National organization
Provides programs designed to meet the needs of functionally and/or cognitively impaired adults through an individual plan of care.
National AgrAbility Project
National organization
Assists people with disabilities involved in production agriculture who work both on small and large operations.
National Alliance for Caregiving (NAC)
Nonprofit/Foundation
A coalition of more than 40 national organizations focused on issues of family caregiving. The Alliance's mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.
National Association of Area Agencies on Aging (n4a)
National organization
Serves as the umbrella organization for the 655 area agencies on aging and more than 230 Title VI Native American aging programs in the U.S. Advocates on behalf of the local aging agencies to ensure that needed resources and support services are available to older Americans. Works to provide services which make it possible for older individuals to remain in their home.
National Association of Professional Geriatric Care Managers (GCM)
National organization
Provides information on geriatric care managers, who work privately with older adults and their families to create a plan of care that meets the needs of the older adult.
National Center for Assisted Living (NCAL)
National organization
The assisted living voice of the American Health Care Association (AHCA), the nation's largest organization representing long term care.
National Family Caregivers Association (NFCA)
National organization
Supports, empowers, and educates those who care for a chronically ill, aged, or disabled loved one. Also provides guides and information for congregations and parishes on informal caregiving.
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 with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
Provides a hotline, 1-800-658-8898, for those looking for end-of-life information, including free brochures and advance directives or contact information for a hospice or other end-of-life organization.
National PACE Association (NPA)
National organization
Exists 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. Enhances the strength and professionalism of private duty home care providers through education and best practices.
Rosalynn Carter Institute for Caregiving (RCI)
Nonprofit/Foundation
Through research, education, and training, the RCI promotes the mental health and well-being of individuals, families, and professional caregivers; promulgates effective caregiving practices; builds public awareness of caregiving needs; and advances public and social policies that enhance caring communities.
Rural PACE Technical Assistance Program
Federal government
Assists rural health care providers in developing Program of All-Inclusive Care for the Elderly (PACE) to serve rural communities. The goals of the program are to develop strategies for successfully adapting PACE to rural communities, identify health professional training needs to support PACE in rural communities, and to provide education and technical assistance to rural providers.
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. Discussed in detail in Mobile Day Care: Bringing Social Day Care to Rural Communities.
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.
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