ORGANIZATIONS
AARP 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.
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.
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. 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.
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.
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.
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 https://www.caregiver.org/connecting-caregivers/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.
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.
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.
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 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 https://benefitscheckup.org/ 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.
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.
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.
