Caregiver Organizations, Information, Advocacy, and Support
Caregiver Organizations, Information, Advocacy, and Support
Caregiver Action Network (CAN)
CAN is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Family Caregiver Alliance (FCA)
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 Voices, Inc.
Family Voices offers information on healthcare policies relevant to special needs children in every state.
Friends' Health Connection
Friends' Health Connection links persons with illness or disability and their family caregivers with others experiencing the same challenges.
National Alliance for Caregiving
Although not an organization that helps family caregivers directly, The National Alliance for Caregiving's Website helps family caregivers learn about information, videos, pamphlets, etc. that have been reviewed and approved as providing solid information.
National Family Caregivers Association
On January 1, 2013, the National Family Caregivers Association became Caregiver Action Network.
Rosalynn Carter Institute for Caregivers
The Rosalynn Carter Institute for Caregivers promotes the health, strength, and resilience of caregivers throughout the United States. Established in 1987 by former First Lady Rosalynn Carter, the Institute's priority is the family caregiver; those individuals who care for a relative, friend or loved one.
U.S. Department of Health and Human Services
A federal Web site designed to help people stay healthy. Healthfinder.gov features links to more than 6,000 government and nonprofit health information resources on hundreds of health topics including personalized health tools such as health calculators, activity and menu planners, recipes, and online checkups. In addition, the site offers tips for caregivers and health news. Information is provided in English and Spanish.
Well Spouse Association
Well Spouse is a national membership organization that gives support to husbands, wives, and partners of the chronically ill and/or disabled. Well Spouse has a network of support groups and also a newsletter for spouses.
Caregiver-Specific Websites
AgingCare.com
AgingCare.com
AgingCare.com helps people caring for elderly parents find support, resources, and information, as well as a place to connect with other caregivers. AgingCare.com has a comprehensive collection of articles, news, product information, as well as a team of elder care experts who answer the many tough questions caregivers have about caring for their loved ones. Most importantly, AgingCare.com provides a community in which caregivers can connect with others in similar situations, to share ideas and help each other through the tough times.
Allsup Medicare Advisor®
Allsup Medicare Advisor®
Allsup Medicare Advisor is a fee-based Medicare plan selection service helping Medicare eligible individuals, either alone or with their caregivers, to choose the Medicare option that best meets their needs. CAN Members are eligible to receive a 20% discount.
American Cleaning Institute
American Cleaning Institute
The American Cleaning Institute is a non-profit trade association based in Washington, D.C. that is dedicated to advancing public understanding of the safety and benefits of cleaning products. ACI shares information, ideas, perspective and knowledge with a variety of audiences on cleaning, hygiene and health, based on the expertise provided by its member companies. ACI members produce cleaning products and the chemistries that make the products effective.
Caregiver.Com
Caregiver.Com
Caregiver.com produces Today's Caregiver magazine, the first national magazine dedicated to caregivers, the "Sharing Wisdom Caregivers Conferences", and Website which includes topic specific newsletters and online discussion lists.
Caregivinghelp.org
Caregivinghelp.org
CAREgivinghelp.org is a free, interactive website featuring short video and text educational modules on a variety of caregiving topics, frequently asked questions that cover the different phases of caregiving, an online community monitored by a geriatric care specialist, exercises to help caregivers "take a moment" for themselves, and a comprehensive listing of resources.
CarePages
CarePages
CarePages are free, private web pages that make it easy to reach out and receive messages of support and to stay connected to family, friends, co-workers, and others who care about you and your loved one. The service is available to anyone caring for a loved one, but may be particularly helpful to those who have recently found themselves in a care giving role.
Centers for Medicare & Medicaid Services (CMS)
Centers for Medicare & Medicaid Services (CMS)
Ask Medicare will help family caregivers access and use valuable healthcare information, services, and resources. This new CMS initiative will feature a one-stop Web page for caregivers, providing easy access to useful information about Medicare and other essential resources to help with family caregiving including links to key partner organizations that assist caregivers and beneficiaries, and will present personal stories from caregivers in the community.
Disability.gov
Disability.gov
A federal government website providing easy access to disability-related information and resources, Disability.gov has links to relevant programs and services offered by numerous government agencies. It is designed as a one-stop website where people with disabilities can easily find the resources they need to fully participate in the workforce and in their communities. Included is a state and local resources map, which makes it easy to locate disability-related information in specific parts of the country.
Home Instead - Caregiverstress
Home Instead - Caregiverstress
While family caregiving is often very rewarding and a bonding experience, it can also be stressful and cause tension within families. Home Instead Senior Care provides this informative Website to help family caregivers find ways to cope with caregiver stress, in order to make their role more rewarding. A caregiver who takes care of herself or himself - body and mind - will ultimately be a better caregiver to a loved one.
ITN Men’s Caregiver Support Group program
ITN Men’s Caregiver Support Group program
ITN (In Their Names) seeks to help men build their communication skills to become better caregivers. This is done by learning to share their stories with others, developing abilities to cope, making flexible and realistic plans, and gaining confidence as a caregiver. ITN was created as a step-by-step guide for men to develop a caregiver support group within their own communities.
Lotsa Helping Hands
Lotsa Helping Hands
Lotsa Helping Hands is a volunteer coordination service for friends, family, colleagues, and neighbors to assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during a crisis.
New Health Partnerships
New Health Partnerships
New Health Partnerships (NHP), a program of the Institute for Healthcare Improvement, is spreading collaborative self-management support, a system of care that promotes patient/family caregiver/provider partnerships to transform care for the chronically ill. The site offers valuable tools and resources that can be easily downloaded by patients, family caregivers, and their health care team.
Next Step in Care
Next Step in Care
Offering a range of guides and checklists—most intended for family caregivers of persons with serious illness, with some specifically for health care providers—designed to make patients’ transitions between care settings such as rehab to home or home to hospital smoother and safer.
ShareTheCaregiving – aka Share The Care
ShareTheCaregiving - aka Share The Care
ShareTheCaregiving, Inc. is a grassroots organization dedicated to preventing "caregiver burnout by promoting and educating people about the benefits of group caregiving using the SHARE THE CARE™ model."
Video Caregiving
Video Caregiving
A visual education tool for family caregivers of loved ones with Alzheimer’s Disease, strokes, or other physical disabilities. The site features exclusive documentary-style videos, created by a team of award-winning film producers, which follow real life people as real life stories and issues unfold. Here caregivers find tools to better understand and deal with their situation, and let them know that they are neither isolated nor alone in their struggle.
Department of Veteran's Affairs
Department of Veteran's Affairs
www.va.gov is the place to start when seeking services for veterans. VA support falls into three main categories: Health Care, Benefits & Services, and Burials and Memorials.
Disabled American Veterans
Disabled American Veterans
www.dav.org assists veterans and their families in filing claims and accessing services and benefits.
The National Resource Directory
The National Resource Directory
The National Resource Directory was developed by the Departments of Defense, Labor and Veterans Affairs for wounded, ill and injured service members, veterans, and their families; for families of the fallen, and those who support them.
Addiction Resource
Addiction Resource
AddictionResource.com is a volunteer-run organization dedicated to guiding people through every step of the addiction treatment and recovery process. Their goal is to connect those battling addiction to the help they need to put their lives back on track.
Facing Disability
Facing Disability
Facing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers, and experts.
National Volunteer Caregiving Network
National Volunteer Caregiving Network
The National Volunteer Caregiving Network exists to share knowledge, experiences, and ideas that help strengthen and support hundreds of local volunteer caregiving programs throughout the US and to foster the establishment of new interfaith volunteer caregiving programs.
Caring for Elders
Caring for Elders
AARP
AARP supplies information about caregiving, long-term care, and aging, including publications and audio-visual aids for caregivers.
AGIS Network
AGIS provides education, support, expert advice, local resources, and a vibrant community for caregivers and families of the elderly.
Eldercare Locator
Eldercare Locator provides referrals to Area Agencies on Aging via zip code locations. Family caregivers can also find information about many eldercare issues and services available in local communities.
Home Instead - 40/70 Rule
What does a grown daughter say to her dad when he's hit a light pole with the car? How does an adult son ask his mom if she's taking her medications like she should? And how do siblings approach their parents about needing more help at home? These issues can challenge even the family where communication is free and open. Talking sooner is better than waiting until a crisis has occurred. That's what the "40-70 Rule" is all about. This advice is designed to help adult children and their aging parents deal with those sensitive topics that often make conversations difficult. The idea is that if you're 40, or your parents are 70, it's time to start talking about the issues of aging.
The National Association of Professional Geriatric Care Managers
Geriatric care managers (GCMs) are health care professionals, most often social workers, who help families in dealing with the problems and challenges associated with caring for the elderly. This national organization will refer family caregivers to their state chapters, which in turn can provide the names of GCMs in your area. This information is also available online.
U.S. Administration on Aging
The Administration on Aging is the official federal agency dedicated to the delivery of supportive home and community-based services to older individuals and their caregivers. The AoA Website has a special section on family caregiving.
End-of-Life Planning, Hospice and Bereavement Information
End-of-Life Planning, Hospice and Bereavement Information
Aging with Dignity
Aging with Dignity publishes the Five Wishes Living Will document, a very user-friendly and comprehensive document that meets legal requirements in 35 states.
Caring Connections
Caring Connections provides free brochures on end-of-life topics including advance care planning, caregiving, hospice and palliative care, pain, grief and loss, and financial issues. Caring Connections also provides Advanced Directives for all states.
HospiceDirectory.org
Online consumer database that lists hospices in North America and the U.S. All hospices are listed at no cost. It is a free service that assists families and individuals in locating a hospice within their community quickly. It also provides reliable information about hospice and end-of-life care to consumers.
Hospice Foundation of America
The National Hospice Foundation hosts an annual teleconference on issues of bereavement, and has publications on grief and bereavement.
The Compassionate Friends
This group offers telephone support and understanding to families who have lost a child. They maintain a resource library and have a national chapter network and newsletter.
U.S. Department of Health and Human Services
The National Clearinghouse for Long-Term Care Information provides information on planning and financing long-term care including planning for end-of-life care, and all major types of public and private financing to help cover long-term care costs.
Advocacy Assistance
Patient Advocacy Assistance and Programs
Patient Advocate Foundation
Patient Advocate Foundation serves as a liaison between patients and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relating to a patient's condition.
Homecare Agencies National Association for Home Care and Hospice
This organization for home healthcare agency providers allows family caregivers to use the Internet to access a list of member agencies across the country.
Visiting Nurse Associations of America
VNAA promotes community based home healthcare. Family caregivers can contact them to find their local VNA.
Assisted Living, Nursing Home, and Residential Care Consumer Consortium on Assisted Living (CCAL)
CCAL is a national consumer-focused organization that is dedicated to representing the needs of residents in assisted living facilities and educating consumers, professionals, and the general public about assisted living issues. Family caregivers can request the publication "Choosing an Assisted Living Facility: Strategies for Making the Right Decision," which provides helpful information and a concise checklist for those contemplating this next step.
National Citizens' Coalition for Nursing Home Reform
This organization serves as an information clearinghouse and offers referrals nationwide for help with concerns about long-term care facilities.
Medical Transport and Hospitality Housing National Association of Hospital Hospitality Houses (NAHHH)
NAHHH represents organizations that provide lodging (and service) for families receiving medical care away from home; furnishes information about hospitality homes in the caller's area; offers a newsletter; and publishes an annual directory of facilities offering lodging.
National Patient Travel Center
Family caregivers can receive help in locating air transportation for needy patients who need distant specialized medical evaluation, diagnosis, or treatment. The National Patient Travel Helpline is available 24/7 and provides referrals to all major medical transport providers in the network.
Health Insurance: Prescription Assistance Information
Health Insurance: Prescription Assistance Information
Family caregivers can contact their county or state Department of Health and Human Services for financial programs which may provide assistance for acquiring health insurance and prescription medications. Other possible financial resources may include social service agencies such as Catholic Charities, the Association of Jewish Families, and Children's Agencies. Local chapters of voluntary health agencies may also offer financial support programs and/or information on how to apply for such programs.
Benefits Check-Up and Benefits Check-Up RX Websites
A service of the National Council on the Aging, Benefits Check-Up and Benefits Check-UP RX help people over the age of 55 find federal, state, and local public and private programs that may pay for some of their medical care and/or prescription costs
Medicare Website
This is the official Website for the Centers for Medicare and Medicaid Services (CMS), the agency responsible for Medicare Rx. The toll-free number is 800/MEDICARE.
Medicare Rights Center
This is an independent source of health care information and assistance for older and disabled Americans, their caregivers, and the professionals who serve them. Medicare Interactive (MI) is the one-stop source for information about health care rights, options, and benefits, and it is designed to help people find answers to all their Medicare questions. The website also has a list of phone numbers for each state's "State Health Insurance Assistance Program."
Medicare Plans Patient Resource Center
The Medicare Plans Patient Resource Center supports the families and loved ones of older adults and people with disabilities. They are dedicated to providing access to affordable health care through educational programs, interactive resources, and functional tools.
Homecare Agencies
Homecare Agencies
National Association for Home Care and Hospice
This organization for home healthcare agency providers allows family caregivers to use the Internet to access a list of member agencies across the country.
Visiting Nurse Associations of America
VNAA promotes community based home healthcare. Family caregivers can contact them to find their local VNA.
Assisted Living, Nursing Home, and Residential Care
Consumer Consortium on Assisted Living (CCAL)
CCAL is a national consumer-focused organization that is dedicated to representing the needs of residents in assisted living facilities and educating consumers, professionals, and the general public about assisted living issues. Family caregivers can request the publication "Choosing an Assisted Living Facility: Strategies for Making the Right Decision," which provides helpful information and a concise checklist for those contemplating this next step.
National Citizens' Coalition for Nursing Home Reform
This organization serves as an information clearinghouse and offers referrals nationwide for help with concerns about long-term care facilities.
Senior Advisor
SeniorAdvisor.com is one of the nation's largest senior living review sites. Browse photos, ratings, and opinions of assisted living, dementia care, independent living, senior apartments, and more - all by people just like you. You'll also find top rated senior in-home care providers, elder care attorneys, and a community full of advice for virtually every facet of your retirement planning.
Respite Resources
Respite Resources
Easter Seals
Easter Seals provides a variety of services at 400 sites nationwide for children and adults with disabilities, including adult day care, in-home care, camps for special needs children, and more. Services vary by site.
National Adult Day Services Association, Inc.
This association provides information about locating adult day care centers in your local area.
National Respite Coalition (NRC)
When you join the National Respite Network you are automatically a member of the National Respite Coalition, the Policy Division of the ARCH National Respite Network, and can receive the latest updates on Congressional legislative activity important to respite and the families you serve, as well as information from the states about program implementation. The National Respite Network is a program of the Chapel Hill Training-Outreach Project.
National Respite Locator Service
This site links not only to respite providers and programs, but to state by state fact sheets on funding and program eligibility with state contacts for the state respite coalition and the Lifespan Respite grantee.
Respite Education & Support Tools (REST)
The REST program – an evidence-based respite-training program – provides the skills and tools needed to provide quality respite.
Shepherd's Centers of America
The organization provides respite care, telephone visitors, in-home visitors, nursing home visitors, home health aides, support groups, adult day care, and information and referrals for accessing other services available in the community. Services vary by center.
Training for Family Caregivers
Training for Family Caregivers
Community-based resources may offer training and classes for family caregivers. Such resources may include: your local hospital; home care agencies; Area Agency on Aging, voluntary health agencies, and county and state departments of health.
American Red Cross
American Red Cross has developed training programs for family caregivers. You will need to check with your local chapter to find out if there are classes in your area.
Disease Specific and Health Related Agencies and Websites
Disease Specific and Health Related Agencies and Websites
This list was provided by the National Health Council
Website: http://www.nhcouncil.org
- American Autoimmune Related Diseases Association
- American Chronic Pain Association
- American Foundation for AIDS Research
- American Liver Foundation
- American Lung Association
- American Tinnitus Association
- Asthma & Allergy Foundation of America
- Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
- Crohn's & Colitis Foundation of America
- Cystic Fibrosis Foundation
- Epilepsy Foundation
- The Foundation Fighting Blindness
- The Leukemia & Lymphoma Society
- Lupus Foundation of America
- March of Dimes Birth Defects Foundation
- Mesothelioma Web
- Muhammad Ali Parkinson Center
- Myasthenia Gravis Foundation of America
- Myositis Association
- National Down Syndrome Society
- National Hemophilia Foundation
- National Mental Health Association
- National Osteoporosis Foundation
- National Psoriasis Foundation
- National Sleep Foundation
- Osteogenesis Imperfecta Foundation
- Sjogren's Syndrome Foundation
- Spina Bifida Association of America
- Tourette Syndrome Association, Inc.
- Tuberous Sclerosis Alliance
- United Ostomy Association
- United Cerebral Palsy
- Alzheimer's Association
- Alzheimer's Disease Education and Referral Center
- Alzheimer’s Foundation of America
- Arthritis Foundation
- Johns Hopkins Arthritis Center
- National Institute of Arthritis and Musculoskeletal and Skin Diseases
- American Cancer Society
- CancerCare
- Cancer Support Community
- Cancer.Net
- Centers for Disease Control and Prevention
- Help for Cancer Caregivers
- National Cancer Institute (NCI) at the National Institutes of Health
- National Coalition for Cancer Survivorship
- Cancer and Careers
- Cancer Financial Assistance Coalition
- Cancer Research and Prevention Foundation
- American Diabetes Association
- Centers for Disease Control and Prevention’s diabetes division known as the Division of Diabetes Translation
- International Diabetes Federation
- Diabetes Research Foundation
- National Diabetes Education Program
- American Heart Association
- American Stroke Association
- Centers for Disease Control and Prevention
- National Stroke Association
- National Institutes of Health
- The National Coalition for Women with Heart Disease
- US National Library of Medicine
- American Kidney Fund
- Centers for Disease Control and Prevention
- National Kidney Disease Education Program
- National Kidney Foundation
- Kidney Cancer Association
- ALS Hope Foundation
- The ALS Association
- The Robert Packard Center for ALS Research at Johns Hopkins
- Huntington's Disease
- Multiple Sclerosis Association of America
- Multiple Sclerosis Foundation
- National Multiple Sclerosis Society
- Brain Injury Association of America
- BrainLineMilitary.org
- Brain Trauma Foundation
- Centers for Disease Control and Prevention
- American Parkinson Disease Association
- Davis Phinney Foundation for Parkinson’s
- National Institutes of Health
- National Parkinson Foundation
- Parkinson’s Disease Foundation
- The Michael J. Fox Foundation