National & International Organizations
National and International Organizations to help the Alzheimer’s / dementia Caregiver navigate the road of caregiving.
Categories: Caregiving; Dementia – Alzheimer’s; General; Hospice; Legal; Parkinson’s; Stroke; (Clinical/Drug) Trials.
CAREGIVING
CARING.COM
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.
CARINGBRIDGE.COM
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.
Website: www.CaringBridge.org
ECAREDIARY.COM
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.
Tel: 646-484-5212
Website: www.eCareDiary.com/
ELDERCARE LOCATOR
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.
Website: http://www.eldercare.gov
EMPOWERING CAREGIVERS
A site for caregivers providing practical emotional, and spiritual support with tools for self-empowerment and an interactive community forum. Offerings include: articles by top authors in the areas of aging, caregiving, end-of-life issues and motivation, journal exercises, a healing circle of prayer, spotlights, humor, alternative healing, inspiration, and all -inclusive resources. Choices for forgiveness, healing, and opening to love.
Website: http://www.care-givers.com
LOTSA HELPING HANDS
A free caregiving and volunteer service that allows for the creation of private web-based communities to organize help for people in need. A group calendar allows members to schedule and sign up for tasks that provide respite for the family including meals, rides to medical appointments, and visits. In every Lotsa Helping Hands community, there are also standard community sections including 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.
Website: http://www.LotsaHelpingHands.com
MEDICARE for Caregivers
A newly redesigned site offering help for caregivers– including care options, paying for care, navigating medicare, support, and caregiver community.
Website: http://www.medicare.gov/caregivers/caregiver-topics-landing.html
MR. ELDERCARE
Website: http://www.mreldercareonline.com/
NATIONAL ADULT DAY SERVICES ASSOCIATION
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.
85 South Washington, Suite 316, Seattle WA 98104 U.S.A.
Toll-free: 877-745-1440
Website: www.nadsa.org
NATIONAL ALLIANCE FOR CAREGIVING
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.
4720 Montgomery Lane, 5th Floor, Bethesda, MD 20814
E-mail: info@caregiving.org
Website: www.caregiving.org
NATIONAL ASSOCIATION OF PROFESSIONAL GERIATRIC CARE MANAGERS
Professional organization of practitioners whose goal is the advancement of dignified care for the elderly and their families.
3275 West Ina Road, Suite 130, Tucson, AZ 85741 U.S.A.
Tel: 520-881-8008
Website: www.caremanager.org
NATIONAL FAMILY CAREGIVERS ASSOCIATION
Grassroots organization created to educate, support, empower, and speak up for the millions of Americans who care for chronically ill, aged, or disabled loved ones. Inquire about free membership for family caregivers.
10400 Connecticut Avenue, Suite 500, Kensington, MD 20895-3944 U.S.A.
Toll-free: 800-896-3650
Website: http://www.thefamilycaregiver.org or http://www.nfcacares.org
NURSING HOME ABUSE CENTER
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.
Website: http://www.nursinghomeabusecenter.org
NATIONAL RESPITE NETWORK
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.
Website: http://chtop.org/ARCH.html
PERSONCARE.NET
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.
Telephone: Toll-free: 800-609-7967 Local: 262-784-3060
Website: www.PersonCare.net
THE CAREGIVER’S VOICE
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.
P.O. Box 589, Pearblossom, CA 93553-0589 U.S.A.
Tel: 661-944-1130 Website: www.TheCaregiversVoice.com
Contact: TCV@TheCaregiversVoice.com
THE RIBBON
Free on-line newsletter for families and caregivers dealing with Alzheimer’s disease and other dementias. This site contains valuable articles and information even though it is no longer actively updated.
Website: www.theribbon.com
VA CAREGIVER SUPPORT
Support and services for family caregivers of veterans.
U.S. Department of Veterans Affairs
810 Vermont Avenue, NW, Washington, DC 20420 U.S.A.
Tel: 855-260-3274 Website: www.caregiver.va.gov/
DEMENTIA – ALZHEIMER’S
AGELESS DESIGN & THE ALZHEIMER’S STORE
Information for caregivers and professionals dealing with Alzheimer’s disease and related dementias. One-stop resource for products for people with Alzheimer’s disease and their caregivers.
3197 Trout Place Road, Cumming, GA U.S.A.
Tel: 800-752-3238
Websites: http://agelessdesign.com and http://alzstore.com
ALZHEIMER’S ASSOCIATION
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.
225 North Michigan Ave. 17th Floor Chicago, IL 60611-7633 U.S.A.
Tel. 800-272-3900
Website: www.alz.org
ALZHEIMER’S DISEASE INTERNATIONAL
Umbrella organization of Alzheimer’s associations around the world, which offer support and information to people with dementia and their caregivers.
64 Great Suffolk Street, London, SE1 0BL, U.K.
Tel: + 44 20 79810880
Website: www.alz.co.uk
ALZHEIMER’S FOUNDATION OF AMERICA
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.
Tel: 866-232-8484
Website: http://alzfdn.org
DEMENTIA ADVOCACY AND SUPPORT NETWORK INTERNATIONAL
A worldwide organization by and for those with dementia, working together to improve quality of life.
P.O. Box 1645 Mariposa, California 95338 U.S.A.
Website: http://dasninternational.org
DEMENTIA CARE AUSTRALIA
Website: www.dementiacareaustralia.com
KNOW IT ALZ
Kathy Hatfield cares for her eighty-two year-old father who has Alzheimer’s and lives with her. Her blog offers positive ideas, tips and light-hearted (and even funny) stories to share with caregivers. She hopes it makes caregivers smile, if even for a moment.
THE ALZHEIMER’S PROJECT
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
Website: http://www.hbo.com/alzheimers/the-films.html
THE ALZHEIMER SPOUSE
Provides information and support for spouses of those diagnosed with dementia (e.g., Alzheimer’s). Founded by Joan Gershman, wife of an Alzheimer patient.
Website: http://www.thealzheimerspouse.com/
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.
GENERAL
AARP
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.
Website: http://aarp.org
ADMINISTRATION on AGING
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.
Tel: 202-619-0724
Eldercare Locator (to find local resources): (800) 677-1116
Website: http://www.aoa.gov/
AMERICAN SOCIETY ON AGING
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.
71 Stevenson Street, Suite 1450, San Francisco, CA 94105-2938 U.S.A.
Tel: 415-974-9600 Toll-free: 800-537-9728
Website: www.asaging.org
MAYO CLINIC
More than 3,300 physicians, scientists and researchers from Mayo Clinic share useful and up-to-date health information and tools.
Web Site: www.mayoclinic.com
HOSPICE
HOSPICE FOUNDATION OF AMERICA
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.
Website: www.hospicefoundation.org
NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION
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.
1700 Diagonal Road, Suite 625 Alexandria, Virginia 22314 U.S.A.
Tel: 703-837-1500
Website: http://www.nhpco.org
LEGAL
NATIONAL ACADEMY OF ELDER LAW ATTORNEYS
Non-profit association assisting lawyers, bar organizations, and others working with older clients and their families. Established in 1987.
1577 Spring Hill Road, Suite 220, Vienna, VA 22182 U.S.A.
Website: www.naela.com
PARKINSON’S
NATIONAL PARKINSON FOUNDATION
Mission: to improve the quality of care for people with Parkinson’s disease through research, education, and outreach.
1501 N.W. 9th Avenue / Bob Hope Road, Miami, Florida 33136-1494
Tel: 305-243-6666 Toll-Free National: 800-327-4545
Website: www.parkinson.org
STROKE
AMERICAN STROKE ASSOCIATION
Consumer information for stroke prevention and care of someone following a stroke.
Web Site: www.strokeassociation.org
NATIONAL INSTITUTE OF NEUROLOGICCAL DISORDERS AND 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.
Website: www.ninds.nih.gov/disorders/dementias/dementia.htm
TRIALS
CLINICALTRIALS.GOV
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.
Website: www.clinicaltrials.gov
Resource List Updated October 2011
Click for Local and Regional Organizations.
If you represent an organization that provides products or services to benefit family or professional caregivers (see About Us first), we invite you to add your information to our resource organization listings.
If changes are needed to your listing above, please copy the original and send with corrected version to us at TCV@TheCaregiversVoice.com.
