The following links will lead you to resources on the Web to inform and support you in your ongoing journey to find out more about Alzheimer’s disease and how you can take a proactive role for your loved one.
Caregiver Organizations, Information, Advocacy, and Support Resources
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.
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.
There are a variety of websites which offer information and support for family caregivers. Websites with key information and support for family caregivers include:
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 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.
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 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.
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.
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
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 (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 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 (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 – 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.”
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
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.
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.
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.
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.
Hospitals in the area:
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