ORGANIZATIONS PROVIDING HELP AND SUPPORT
Many of these programs are supported by gifts of time, money and other support from donors. If you know someone with a particular disease or If one of these organizations has been helpful to you or someone you know, you might consider seeking out the “donate” button on the individual website.
ARCH Respite – ARCH stands for Access to Respite Care and Help. The mission of the ARCH National Respite Network and Resource Center is to . . . help families locate respite and crisis care services in their communities. Easy to navigate website, Check out the Caregivers and Respite Providers tabs. The Resources tab can be filtered by your location and includes all states and territories, plus federal information, on your desired topic.
AARP (American Association of Retired Persons) is a nonprofit, nonpartisan organization that empowers people to choose how they live as they age. Click on the “Local Resources and Solutions” tab, then click on your state to find what is available. Explore the other tabs for information on topics that apply to your situation. You do not need to be a member to access this information.
Air Charity Network provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. Air Charity Network serves all 50 states and its volunteer pilots utilize their own aircraft, fuel and time to provide free air transportation to medical facilities for citizens who are financially distressed or otherwise unable to travel on public transportation.
Alex’s Lemonade When she was just 4 years old, Alex held her first childhood cancer fundraiser in her front yard and raised more than $2,000. By the time of her death in at age 8, Alex had raised $1 million and inspired a legacy of hope and cures for childhood cancer. The mission of ALSF’s Travel For Care program is to ensure children battling childhood cancer have the financial assistance needed to travel to clinical trials, experimental therapeutics, or treatment not currently available at their local institution. For families interested in assistance through the Travel for Care program, please note that there are specific criteria to be met and the application must be submitted by a member of the patient’s oncology treatment team, usually a social worker.
Alzheimers Speaks A Minnesota-based advocacy group supporting family caregivers whose goal is to shift dementia care from crisis to comfort. They want to enrich lives by sharing critical information, personal stories, resources, products, and tools from people and organizations at all levels around the world.
American Brain Association national foundation for the brain dedicated to the relentless pursuit of improved prevention, treatment, and cures for brain diseases and disorders. Tap on the Brain Disease button for information on specific brain diseases and conditions such as aphasia, Frontal Temporal Degeneration, Fibromyalgia, Palsy, Stroke and TBI.
Association of University Centers on Disability A national association that supports Network members in their research, training, education, and service so that together, AUCD and Network members can promote the quality of life, health, and well-being of people with disabilities.
Brookdale Foundation Group—Relatives as Parents Program (RAPP) Established in 1996 in response to a growing need for enhanced services and supports for grandparents raising grandchildren, The Brookdale Foundation Group established RAPP to encourage and promote the creation or expansion of services for grandparents and other relatives who are surrogate parents due to the absence of the parents. Currently, RAPP provides supportive services, primarily to relative caregivers caring for children outside the foster care system, through an extensive network of support groups.
Caregiver Action Network 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, or disease, as well as those supporting the living needs of older adults. CAN serves a broad spectrum of caregivers ranging from the parents of children with special needs to the families and friends of wounded soldiers. CAN is a nonprofit organization providing education, peer support, and resources to family caregivers nationwide free of charge. Start with the Caregiver Resources tab for an overview and then click on the Care by Condition tab.
Carrier Alert A joint project of the National Association of Letter Carriers and the USPS. When a letter carrier notes something unusual concerning a patron registered with Carrier Alert, it is reported to a postal supervisor, who in turn contacts the sponsoring local agency. The agency checks on the person and if something’s wrong, the agency will contact family, police or emergency services as appropriate. Ask your letter carrier or at your local USPS to see if your area is covered.
Caring Bridge Best known for providing online communication that allows a caregiver to update a number of people at once. Offers other tools to share and document a health journey, simplify care coordination, and connect caregivers with a supportive community.
Caring Info “Understanding and discussing topics like advance directives, palliative care, caregiving and hospice care may feel overwhelming on top of dealing with a serious or life-limiting illness.” CaringInfo, a program of the National Hospice and Palliative Care Organization. They provides free resources educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. Links to your state’s forms for Advanced Directives. Also links to information on Medicare and Medicaid information, financial care information and a variety of other topics around serious illness and end of life.
Cancer Care The leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. ” Diagnosis and Topics” tab provides information on the different types of cancer, plus many related topics. “Voices of Cancer” tab includes link to Copelink Blog and the Cancer Out Loud podcast. You can also submit questions to be answered by professional caregivers under the “Ask a Cancer Expert” tab – read the instructions and find the topic of the month. Click the “Our Services” tab for more information on topics such as, Counseling, Financial Aid, Support groups and more. Don’t forget to check out the footer for even more links.
Clearing House for Older Road Users funded by the U.S. Department of Transportation’s Federal Highway Administration (FHWA) and National Highway Traffic Safety Administration (NHTSA). Watch the video for tips on how to use this site. Centers on issues pertinent to older drivers, and alternatives, including state specific information. Check the “Blog” for specific topics related to driving. Helpful for caregiver’s information and conversations around safe driving. (“Older” refers to the User NOT the Road. )
Compassion Can’t Wait Financial assistance for single parents of children undergoing transplant and other major medical procedures.
Consumer Voice Consumer Voice is the leading national voice representing consumers in issues related to long-term care, helping to ensure consumers are empowered to advocate for themselves. We are a primary source of information and tools for consumers, families, caregivers, advocates, and Ombudsmen to help ensure quality care for the individual. Consumer Voice was founded in 1975 because of public concern about substandard care in nursing homes and remains the preeminent voice of long-term care consumers at the national level.
Dementia Friendly America DFA is a national movement designed to effectively support and serve persons who are living with dementia and their family and friend care partners. Training is provided to help make the community more accessible, to individuals to provide group or 1:1 support persons living with dementia and their caregivers. Check with your local Area Agency on Aging to see if the program is in your area. Dementia Friendly America is administered by USAging.
Dementia Map All things to do with dementia. I found this to be all over the maP , but there are treasures to be found and the blog includes a variety of helpful topics.
Dementia Society Website: Dementia Society of America® (DSA) is the nation’s leading volunteer-driven all-Dementias awareness organization. DSA provides an information request hotline (1-800-DEMENTIA®), many online resources, and an easy-to-use, web-based locator, which can help families and individuals find valuable support near them. Subscribe to Better Brain Nation, a free science-based magazine with ideas to help you and your loved ones “build a better brain”.
Easter Seals leading non-profit provider of services for individuals with autism, developmental disabilities, physical disabilities and other special needs. For nearly 100 years, we have been offering help, hope, and answers to children and adults living with disabilities, and to the families who love them. Through therapy, training, education and support services, Easter Seals creates life-changing solutions so that people with disabilities can live, learn, work and play. Offer assistive technology skills training, job coaching and mentors, financial literacy programs, and accessible transportation, and connect people with employers to help fill jobs. Click on the Find Your Easter Seals tab and type in your zipcode to find services in your area.
Expect Miracles Foundation Since our inception in 1995, we have been tirelessly working to transform lives affected by cancer. We are proud to have awarded over $21 million in grants to support groundbreaking cancer research and provide financial assistance to those on their journey towards healing. Surviving and Moving Forward [SAMFund] grants serve as a financial bridge to help young adult survivors regain their financial footing after expensive cancer treatment and move forward towards their personal, professional and academic goals.
eXtension This website was created by the United States Department of Agriculture (USDA) Cooperative Extension System. Caregivers and advocates can access a wide range of information and materials designed to help them learn about and provide supportive services to family and relative caregivers. Topics include disaster preparedness, military families, grandparents raising grandchildren, housing, and nutrition.
Family Caregiver Alliance Provides information on particular diseases and in several different languages (often difficult to find) as well as general information, support groups and information for professionals . Services by state. Click on the map for your state and a comprehensive list of agencies and the services they provide will pop up. Answer specific questions you might have on getting help with caregiving, finding legal guidance, connecting with various agencies. They provide addresses, phone numbers and websites to help. There is also a series of short videos on common caregiving elements.
Feeding Matters Feeding Matters is the first organization in the world uniting families, healthcare professionals, and the broader community to improve the system of care for children with pediatric feeding disorder through advocacy, education, support, and research.
First Descents Our Mission: First Descents provides life-changing outdoor adventures for young adults impacted by cancer and other serious health conditions. Programs are open to any young adult diagnosed with cancer or MS between the age of (15-39), and currently between the age of (18-45). Programs ensure individualized care, medical attention and intimate experiences with fellow survivors. First Descents programs are offered free of cost to participants.
FreeDentalCare.us is a comprehensive resource for information on free and low income dental clinics in the United States. Our website provides a guide to finding a free or low income dental clinic, how to qualify for free dental care, tips for finding free or low income dental care, and a list of local free and low income dental care resources from government to non-profit organizations. Enter your state or zipcode to find care near you.
Generations United national membership organization dedicated to improving the lives of children, youth, and older people through intergenerational strategies, programs, and public policies. GU represents more than 100 national, state, and local organizations representing more than 70 million Americans. With its emphasis on public policy, advocacy and programming, GU has served as a resource for policymakers and the public on the economic, social, and personal imperatives of intergenerational cooperation.
Get Palliative Care “Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Health in Aging a trusted source for up-to-date information and advice on health and aging, created by the American Geriatrics Society’s Health in Aging Foundation. A wealth of specific information in an easy to navigate format. Note the section on medications to avoid in specific situations.
Healthcare Hospitality Network Online listing of free or low-cost lodging for patients and their caregivers while they are receiving medical treatment away from their home communities.
The HealthWell Foundation is a leading independent non-profit dedicated to improving access to health care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses.
Helen Keller.org From the website: Discover a wealth of tools, tips, and connections tailored to address the specific needs of older adults with combined hearing and vision loss. Learn about accessible technologies, adaptive communication methods, supportive organizations, and more.
Help Guide Help Guide.org is an independent nonprofit that runs one of the world’s leading mental health websites, dedicated to the daughter of the founders. It has information for all ages and situations. Note the Resources tab to sign up for the biweekly newsletter, to find online meditations and to check out information from the Harvard Medical School. Another unique feature is the Handbook with articles on specific products with recommendations, such as choosing hearing aids.
Hospice Foundation Throughout this site you will find information about living with advanced life-limiting illness, options for care, and helpful resources for caregivers. Information includes how to access information, choose and pay for hospice care.
Independent Transportation Network If you have ever thought “what good can one person do?”, click the About Button and read the History on this website! ITN believes that transportation is a crucial problem for an aging population and have some creative and innovative ways of meeting that need. This website may have the answers you need for your transportation issues, no matter where you live. Check it out.
Joe’s House Joe’s House is not an actual house, but a nonprofit organization that helps cancer patients and their families find a place to stay when traveling away from home for medical treatment. Resources Here is a listing of additional resources for patients, caregivers and family members.
Live Strong – “It’s time to change how we help people live with cancer. . . . We are listeners, collaborators, and practical problem solvers improving the everyday lives of anyone dealing with cancer.” Go to “Resources” for very comprehensive information on dealing with cancer as a patient, caregiver and survivor. Helpful information on treatments, how to prepare, and what to expect, side effects and how to deal with them. Speaks to all ages, including childhood cancers. Recommended.
Lorenzo’s House Founded by “ Families living with a younger-onset (dementia) diagnosis are too often misunderstood and under-resourced.. . ., I was determined to turn so much sorrow into something bright . . . I visualized a care model that brings innovation, connection, and light to the whole family.” Designed to support families of younger onset dementia with research, education and “bringing light” to the families or younger onset dementia patients.
Meals on Wheels At the core of the Meals on Wheels service is a nutritious meal, companionship and a watchful eye on the health and safety of our seniors. For those who have trouble getting around, we bring the service to you. Enter your zipcode to find services in your area.
My Caring Plan Check out Senior Living options by clicking on your state for information about senior facilities. Blog has in depth articles on related topics.
National Alliance on Mental Illness We are dedicated to building better lives for the millions of Americans affected by mental illness. Our Alliance includes more than 700 NAMI State Organizations and Affiliates who work in your community to raise awareness and provide support and education to those in need.
National Alliance for Caregiving The National Alliance for Caregiving is a nonprofit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations. . . . . Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance’s mission is to be an objective national resource aimed at improving the quality of life for families and care recipients.
National Council on Aging We will deliver the resources, tools, best practices, and advocacy our nation needs to ensure that every person can age with health and financial security. Information on health, money, Medicare and more. Benefits Check-up is a NCOA service to check for benefits available in your state when you type in a zipcode. The “Aging Well” button will take you to information on topics such as Nutrition, Fall Prevention, Chronic Conditions. Check out the Caregiver link for caregiver support, including NEW in 2024 programs that will pay for caregiving, and information on how to tap into other benefits, as well.
National Eczema Society Eczema (eg-zuh-MUH) is the name for a group of inflammatory skin conditions that cause dry skin, itchiness, rashes, scaly patches, blisters and skin infections. There are seven types of eczema that affect the skin. There is no cure for eczema but there are many treatments available to help you manage it. Find information on managing and living with eczema and educational resources.
National Hispanic Council on Aging (NHCOA) is the leading national organization working to improve the lives of Hispanic older adults, their families and caregivers. n 2019, according to the US Census, there were 60.6 million Hispanics in the United States (18% of the nation’s total population) “We welcome anyone to our website who has a vested interest in the lives of Hispanic older adults, their families, and caregivers. . . is our goal to empower Hispanic older adults so they can age with the dignity they deserve.”
National Indian Council on Aging The mission is to advocate for improved comprehensive health, social services and economic well-being for American Indian and Alaska Native elders. NICOA is governed by a 13-member board of directors composed of American Indian and Alaska Native elders representing each of the 12 Bureau of Indian Affairs regions, The mission of NICOA is to advocate for improved comprehensive health, social services and economic well-being for American Indian and Alaska Native elders.
National Spine Health Foundation ” 100 million Americans, approximately 1/3rd of the U.S. population, suffer from chronic neck or back pain each year. We empower patients with knowledge so they have the tools to make the best informed choices.” Spinal Help Center tab leads to general information about all things spine, including dealing with insurance and the Resources tab leads to information based on particular spinal symptoms.
Positive Approach to Care (PAC) offers help so you understand what is happening to the brain, paired with practical techniques so you can thrive as a care partner for persons with dementia. Teepa Snow trains professional caregivers to “enter into their dementia patient’s world” and use positive techniques to manage, persuade and respect the person being cared for. Find help for a specific issue: https://www.youtube.com/@teepasnowvideos/videos. Time to watch videos ranges from 10-20 minutes – but they are worth it if you are dealing with a tough problem. Highly recommend.
SAGE The National Resource Center on LGBTQ+ Aging, a program of SAGE, is the country’s first and only technical assistance resource center focused on improving the quality of services and supports offered to lesbian, gay, bisexual, and/or transgender older adults, families and caregivers. Our Objectives 1. create and disseminate information. . . regarding LGBTQ+ aging, 2.develop and refine training on concerns related to LGBTQ+ cultural competence to the aging and disability services network and providers serving diverse communities,3. increase the capacity of LGBTQ+ older adults, families and caregiver to access aging and disability services.
US Aging USAging is the national association representing and supporting Area Agencies on Aging and advocating for Native American Aging Programs. Our members help older adults and people with disabilities throughout the United States live with optimal health, well-being, independence and dignity in their homes and communities.
Please note: For Family Caregivers provides these resources for informational purposes only and is not responsible for information provided by the organizations listed.
