Caregiver Support Organizations & Agencies

Caregiver Support Organizations & Agencies

Caregiving can be a challenging role that often leaves family members in need of support, guidance, and resources. This directory of caregiver support organizations is designed to connect caregivers with essential services, information, and networks that can help them navigate caregiving responsibilities more effectively. Whether you are looking for advocacy groups, elder care assistance, or prescription cost support, this page aims to provide you with the best resources to ease your caregiving journey.

We are committed to providing comprehensive resources for caregivers by listing various organizations and agencies offering support, advocacy, and information. Suppose you represent an organization or agency that provides valuable services to caregivers and would like to be included in our directory. In that case, we invite you to submit a request through our ‘Add Your Caregiver Support Organization’ Form. This form will allow you to provide us with essential details about your organization so we can consider it for inclusion in our list. Your contribution helps us enhance our resource network and better serve the caregiving community.

Caregiver Support Organizations, Information & Advocacy

Family caregivers play an essential role in the care of loved ones, often without access to sufficient resources or support. Fortunately, numerous national organizations exist to provide advocacy, education, and hands-on support for caregivers. These groups work to raise awareness about the unique challenges caregivers face while offering a range of resources, from legislative advocacy to educational materials. Caregiver support organizations like the Caregiver Action Network and the National Alliance for Caregiving are dedicated to improving the well-being of caregivers through resources, community support, and information about caregiving best practices.

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.

American Association of Caregiving Youth® (AACY), a 501(c)(3) non-profit headquartered in Boca Raton, Florida, champions the needs of over 5.4 million young American caregivers aged 18 or younger who provide essential care for chronically ill, injured, elderly, and/or disabled family members. As the leading national voice for Caregiving Youth, AACY raises awareness about this hidden population and is a trusted resource for families, policymakers, educators, and healthcare professionals on the issues Caregiving Youth face, regardless of the care recipient’s diagnosis. AACY offers a comprehensive approach combining direct support and national advocacy. Locally, they provide direct assistance to middle and high school students through the Caregiving Youth Project. Nationally, its Caregiving Youth Institute (CYI) spearheads C.A.R.E. initiatives focused on Connection, Advocacy, Research, and Education. AACY’s impact extends further through national partnerships and affiliates.

The Care Partner Project is dedicated to demystifying health care with plain language and simple “to do” checklists so all of us can support our loved ones’ care – with confidence and grace. The result? Vulnerable patients have informed, capable and proactive Care Partners and providers can rely on Care Partners to support care and recovery.

Family Caregiver Alliance 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 offers information on healthcare policies relevant to special needs children in every state.

Friends’ Health Connection links persons with illness or disability and their family caregivers with others experiencing the same challenges.

The Veteran Spouse Network provides a variety of effective peer support programs designed for military and veteran spouses/partners as they navigate the challenges of active-duty life, the transition from military to civilian life, and put down roots post-military transition. These peer-based support programs offer educational, social, and referral support tailored to the needs of military and veteran spouses/partners to facilitate spouse, veteran, and family well-being.

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.ty 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.

On January 1, 2013, the National Family Caregivers Association became Caregiver Action Network.

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.

Social Security reaches almost every family, and at some point, touches the lives of nearly all Americans. We help older Americans, workers with disabilities, families in which a spouse or parent dies, and caregivers through our representative payee program. The Representative Payee program allows caregivers and third parties to manage the benefit payments of a beneficiary who is incapable of managing their own benefits. For more information, visit Social Security’s Representative Payee webpage.

A federal website 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 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 Support Organizations Improving Generational Happiness
Caregiver support organization websites A caregiver lifting little child

Caregiver-Specific Websites

The internet provides a wealth of information specifically tailored for caregivers. Several websites have been developed to provide tools, resources, and community support. Whether you’re managing the care of someone with a chronic condition or navigating daily caregiving challenges, websites like AgingCare.com and Caregiver.com offer practical advice, discussion forums, and educational content. These platforms aim to empower caregivers by connecting them with other caregivers and offering solutions to caregiving challenges.

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 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.

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 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.

Caregivers As Partners in Care Teams (CAP-CT) is a training program that provides health care teams with the skills and confidence to include family caregivers in a patient’s care journey. CAP-CT gives health care teams the skills to identify, engage, and support caregivers. Trainings are offered as self-paced, online courses with the option to claim free continuing education credits.

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 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.

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.

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 (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 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 (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 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, 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 is 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.

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.

www.dav.org assists veterans and their families in filing claims and accessing services and benefits.

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.

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 is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers, and experts.

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

As our loved ones age, the challenges of providing elder care can increase. Various organizations offer invaluable support and guidance in navigating elder care, from helping with mobility issues to managing cognitive decline. The National Council on Aging and AARP provide resources specifically tailored to the aging population, focusing on issues like healthcare access, mobility assistance, and financial planning for elder care. These resources help families manage the complexities of elder care with expert advice and up-to-date information.

AARP supplies information about caregiving, long-term care, and aging, including publications and audio-visual aids for caregivers.

AGIS provides education, support, expert advice, local resources, and a vibrant community for caregivers and families of the elderly.

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.

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.

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.

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.

Caregiver support organizations assist with End-Of-Life Planning

End-of-Life Planning, Hospice and Bereavement Information

Planning for end-of-life care can be emotionally challenging, but having the right resources can provide much-needed clarity and support. Organizations like the Hospice Foundation of America and Aging with Dignity offer compassionate guidance on end-of-life planning, hospice care, and bereavement support. These resources aim to help families understand the options available to them, ensuring that their loved ones receive dignified care during their final stages of life.

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 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.

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.

The National Hospice Foundation hosts an annual teleconference on issues of bereavement, and has publications on grief and bereavement.

Patients and their loved ones tend to accumulate medical equipment and supplies to ensure the highest level of comfort during palliative care. Unfortunately, that can mean that many of these items will be left behind once this process ends. For grieving families, decluttering responsibly is often the last thing on their mind and can be overwhelming on top of an already stressful situation.

To help support families navigating this difficult time, NCOA created this guide, How to Manage Unused Medical Supplies, that addresses how to handle these medications and supplies without letting them go to waste, including:

  • Participating in drug take-back programs in person or over the mail
  • Donating or returning major equipment like wheelchairs and mobility aids
  • Organizations that take donations of supplies like gloves and masks

This Compassionate Friends 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.

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

Navigating insurance policies, employment rights, and long-term care facilities can be overwhelming. Advocacy organizations are here to help caregivers manage these aspects of caregiving. Resources like the Patient Advocate Foundation and National Association for Home Care & Hospice can assist caregivers in understanding their legal rights, advocating for quality care, and securing financial assistance. These groups work to ensure that caregivers and their loved ones are treated fairly in the healthcare system.

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.

This organization for home healthcare agency providers allows family caregivers to use the Internet to access a list of member agencies across the country.

VNAA promotes community-based home healthcare. Family caregivers can contact them to find their local VNA.

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.

This National Citizens’ Coalition for Nursing Home Reform organization serves as an information clearinghouse and offers referrals nationwide for help with concerns about long-term care facilities.

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.

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.

Advocacy Assistance
Health Insurance Prescription Assistance Information

Health Insurance & Prescription Assistance Information

Many caregivers face difficulties managing prescription drug costs or understanding the complexities of health insurance coverage. Organizations such as Medicare.gov and NeedyMeds offer assistance programs and tools to help reduce prescription costs and clarify insurance benefits. These resources aim to ensure that caregivers and their loved ones can access necessary medications and healthcare services without financial burden.

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.

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

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.

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.”

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

When in-home care becomes necessary, finding the right homecare agency is critical. Associations such as the National Association for Home Care & Hospice and the Visiting Nurse Associations of America provide directories and resources to help families locate reliable home health services. These organizations ensure that caregivers can find skilled nursing, personal care, and companionship services for their loved ones, offering peace of mind and ensuring that care recipients can remain comfortably at home.

This organization for home healthcare agency providers allows family caregivers to use the Internet to access a list of member agencies across the country.

VNAA promotes community based home healthcare. Family caregivers can contact them to find their local VNA.

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.

This National Citizens organization serves as an information clearinghouse and offers referrals nationwide for help with concerns about long-term care facilities.

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.

Homecare Agencies
Respite Resources

Respite Resources & Caregiver Support Organizations

Caring for a loved one is both rewarding and demanding, and every caregiver needs time to rest and recharge. Respite care provides caregivers with the temporary relief they need to focus on their own well-being. Whether you’re looking for a few hours of assistance each week or a longer break, organizations like the National Respite Coalition and Easter Seals offer various respite care services tailored to individual needs. These programs help caregivers find qualified professionals or volunteers to step in and care for their loved ones, giving them time to manage personal tasks, spend time with friends, or simply relax. Access to respite care ensures that caregivers can continue providing effective support without risking burnout.

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.​

This association provides information about locating adult day care centers in your local area.

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.

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.

The REST program – an evidence-based respite-training program – provides the skills and tools needed to provide quality respite.

The Shepherd’s Centers of America 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

Providing care for a loved one can involve medical tasks, emotional support, and navigating complex healthcare systems. Fortunately, many organizations offer training programs to help family caregivers develop the necessary skills and knowledge. Programs like the American Red Cross’ family caregiving courses and the Caregiver Action Network’s resources offer step-by-step guidance on handling various caregiving challenges. These training opportunities cover topics such as administering medications, assisting with daily activities, and managing chronic conditions. With the right training, caregivers can feel more confident in their abilities, ensuring they provide safe, effective, and compassionate care for their loved ones.

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 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.

Training For Family Caregivers
Disease-Specific And Health-Related Agencies & Websites

Disease-Specific and Health-Related Agencies & Websites

For caregivers supporting loved ones with specific medical conditions, access to disease-specific information and resources is essential. Many organizations offer tailored guidance, support, and community connections for particular health issues such as Alzheimer’s, cancer, diabetes, heart disease, and more. Agencies like the Alzheimer’s Association, the American Cancer Society, and the American Heart Association provide caregivers with detailed educational materials, treatment options, and emotional support tailored to each condition. These resources often include specialized care tips, information on managing symptoms, and links to support groups where caregivers can connect with others facing similar challenges. By leveraging these disease-specific organizations, caregivers can feel more empowered and informed when navigating the complexities of their loved one’s health needs.

This list was provided by the National Health Council
Website: http://www.nhcouncil.org​

StartYourRecovery.org offers essential information for family caregivers supporting loved ones with substance use issues. Recognizing that each person’s recovery journey is unique, StartYourRecovery.org is dedicated to cutting through the noise and providing tailored guidance for caregivers and their families at every stage of the recovery process.

 

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