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Agencies and Organizations

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 Human Development (RCI)

RCI provides educational programs for caregivers, conducts research, and disseminates information about caregiving.

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."

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.

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

Alzheimer’s/Dementia Arthritis Cancer Diabetes Heart Disease/Stroke Kidney ALS/Lou Gehrig’s Disease Multiple Sclerosis Traumatic Brain Injury Post-Traumatic Stress Disorder Parkinson’s disease Rare Diseases Search for Information on other conditions: