National & International Organizations
National and International Organizations to help to help Caregivers for Adults with Alzheimer’s / Dementia navigate caregiving. Click on name to be taken to website.
Dementia – Alzheimer’s
The Caregiver Action Network is working to improve the quality of life for the than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. 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.
Founded in 2007, a fully interactive website offering informative articles about common caregiving concerns for family caregivers and a directory of services. Click here to see The Caregiver’s Voice review of the customizable Steps & Stages program.
Founded in 1997, CaringBridge.org connects families and friends who are experiencing a significant health challenge through private websites where people can share updates and support.
FREE tools and resources to help simplify caregiving. A main feature is the Care Diary, a medication and appointment management tool enabling families to store and share their loved one’s information in a secure, private place.
A free nationwide directory assistance service to help older persons and caregivers locate local support resources. Administered through the National Association of Area Agencies on Aging in Washington, D.C.
Tel: 800-677-1116 From outside the U.S.A. Dial Spherix at 301-419-3900 and ask for the Eldercare Locator line.
Homecare.com provides complimentary expert information, practical action steps, guides, resources and personalized plans to help caregivers make sound decisions and successfully navigate the complex world of elder care.
Free online caregiving and volunteer community building service to help one in need. Includes a calendar to schedule and sign up for tasks such as respite for the family, meals, rides to medical appointments, and visits. Lotsa Helping Hands communities include standard community sections: Announcements, Message Boards; and a vital information section giving the family the ability to securely store and retrieve vital health data, emergency contacts, medications, and legal and financial records for designated members of the community.
A newly redesigned site offering help for caregivers– including care options, paying for care, navigating medicare, support, and caregiver community.
NASDA is the leading voice of the rapidly growing adult day service industry in the United States, and the national focal point for adult day service providers committed to providing its members with effective national advocacy, educational and networking opportunities, technical assistance, and research and communication services.
A coalition of 40 national organizations that conducts research and policy analysis, develops national programs, and works to increase public awareness of family caregiving issues across the life span.
Professional organization of practitioners whose goal is the advancement of dignified care for the elderly and their families.
Provides information on nursing home abuse and neglect of the elderly and loved ones. Features specific information such as: signs of abuse or neglect, filing a complaint, and legal rights.
The mission of the ARCH National Respite Network is to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.
Online provider of helpful products such as assistive and adaptive devices to help with caregiving for Alzheimer’s, fall prevention, aids to daily living, taking medications, disabilities, and more.
Tel: 800-609-7967 Direct: 262-784-3060
The independent voice of family and professional caregivers of adults with brain impairment caused by dementia (such as Alzheimer’s), stroke, related illness, or trauma. The Caregiver’s Voice features a wealth of information to bring knowledge, strength, and joy to caregivers through an Ask The Caregiver’s Voice column, Blog postings, Health & Finance updates, Product and Book reviews, and Resources & Links and Community pages.
Support and services for family caregivers of veterans.
U.S. Department of Veterans Affairs
DEMENTIA – ALZHEIMER’S
World leader in Alzheimer’s research and support. Founded in 1980, this nationwide network of chapters offers support to individuals affected by Alzheimer’s with 24/7 information and referral, safety services, and education and support groups.
Umbrella organization of Alzheimer’s associations around the world, which offer support and information to people with dementia and their caregivers.
Tel: + 44 20 79810880
AFA’s mission is to provide optimal care and services to individuals confronting dementia, and to their caregivers and families–through member organizations dedicated to improving quality of life.
A worldwide organization by and for those with dementia, working together to improve quality of life.
Four compelling films, plus supplementary information, produced by HBO in partnership with the National Institute on Aging, Alzheimer’s Association, Fidelity Charitable Gift Fund, and Geoffrey Beene Gives Back Alzheimer’s Initiative. 1. The Memory Loss Tapes 2. Grandpa, do you know who I am? 3. Momentum in Science 4. Caregivers
Provides information and support for spouses of those diagnosed with dementia (e.g., Alzheimer’s). Founded by Joan Gershman, wife of an Alzheimer patient.
SAFE RETURN™ PROGRAM
Alzheimer’s Association’s nationwide program assisting in the identification, and safe and timely return of people with Alzheimer’s disease and related disorders who wander. See “Alzheimer’s Association” for more information.
Raises dementia awareness around the world. Raised awareness reduces stigma. Training provided to businesses staff members followed by a “dementia friendly” designation. Co-Founded by Norman McNamara of Torbay (UK) who was initially diagnosed with Alzheimer’s and later Lewy body dementia.
A nonprofit membership organization dedicated to addressing the needs and interests of persons 50 and older. Useful information and resources on topics such as: health and wellness; economic security and work; long-term care and independent living; and personal enrichment.
Federal agency responsible for advancing the concerns and interests of older people and their caregivers. This website offers a wealth of resources, including aging statistics, long-term care planning, and a search bar for local programs.
One Massachusetts Avenue NW, Washington, DC 20001 U.S.A.
Eldercare Locator (to find local resources): (800) 677-1116
The ASA is the largest professional membership association committed to enhancing the knowledge and skills of those working with older adults and their families. Founded in 1954.
Tel: 800-537-9728 Direct: 415-974-9600
The Human Health Project is a global community of doctors, nurses, practitioners and patient advocates from conventional and alternative medicines helping each other with medical cases.
More than 3,300 physicians, scientists and researchers from Mayo Clinic share useful and up-to-date health information and tools.
Web Site: http://www.mayoclinic.com
Not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education, and information, assists those who cope personally or professionally with terminal illness, death, and the process of grief.
Founded in 1978, NHPCO is the oldest and largest nonprofit membership organization representing hospice and palliative care programs and professionals. Committed to improving end-of-life care and expanding access to hospice care to enhance the quality of life for people dying in America and their loved ones.
Non-profit association assisting lawyers, bar organizations, and others working with older clients and their families. Established in 1987.
Mission: to improve the quality of care for people with Parkinson’s disease through research, education, and outreach.
Tel: 800-327-4545 Direct: 305-243-6666
Consumer information for stroke prevention and care of someone following a stroke.
The National Institute of Health’s NINDS Dementia Information Page provides a comprehensive overview of dementia–what it is, prognosis, research, treatment, clinical trials, publications and more.
Current information for locating federally and privately supported clinical trials for a wide range of diseases and conditions. Studies listed in the database are conducted primarily in all 50 of the United States and in over 90 countries.
Resource List Updated May 2014
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