Nextstep_icon

Next Step in Care: Family Caregivers & Health Care Professionals Working Together

Links and Resources

National Organizations and Programs

AARP
601 E Street NW, Washington DC 20049
1-888-OUR-AARP (1-888-687-2277)
Monday-Friday 7 a.m.- 12 midnight EST
www.aarp.org
www.aarp.org/home-family/caregiving/ (caregiving resource center)
AARP is a national membership organization for people over 50 and their families.  The main website has general  information and news about health, retirement, finances, and other topics.   The section on family caregiving includes a toolkit for caregivers, financial and legal information, housing options, personal stories, videos, and  other information.  Also see AARP’s Public Policy Institute under Public Policy.

AGIS.com
2410 Camino Ramon, San Ramon, CA 94583
866-511-9186 (toll free)
www.agis.com/Eldercare-Basics/Caregiving-Overview/
AGIS.com is an online resource for eldercare and caregiving. Sponsored by a company that provides eldercare and long-term care services to employers and agencies, the caregiver website provides information on caregiving, finding caregiver support, finding and hiring providers like care managers or home care service, as well as many resources for assessing the patient’s and the caregiver’s own needs. There is a search tool to find local resources, an online community and blog, and links to other resources.

American Association of Caregiving Youth
Caregiving Youth Project
1515 North Federal Highway, Suite 214, Boca Raton, FL 33432
561-391-7401
1-800-391-7401
www.aacy.org
AACY is a resource for young caregivers, their families, and professionals.  The website contains news, information about young caregivers in other countries, tips for young caregivers, and resources for professionals and families. There is a free helpline staffed by counselors.

American Physical Therapy Association
Move Forward
www.moveforwardpt.com
This site has helpful definitions of symptoms and conditions that physical therapy could address, videos, a handy tool for finding a physical therapist near you, and a section on childhood development.

American Psychological Association
Caregiver Briefcase for Psychologists
www.apa.org/pi/about/publications/caregivers/index.aspx
The Briefcase is a web-based resource that psychologists can use to assist family caregivers through individual and organizational practice, research, teaching, advocacy and community service. It is also useful for other professionals who work with family caregivers, psychologists facing caregiving challenges within their own families, and caregivers themselves. Briefcase components include: Caregiving facts and figures; Strategies for reaching family caregivers; Research opportunities and considerations; Caregiving interventions; Assessment tools; Variations in practice for diverse groups; Practical aspects of providing services; Teaching about caregiving; Advocacy on behalf of family caregivers; Roles for and profiles of psychologists who work with family caregivers; and Resources for psychologists and caregivers.

A Place for Mom
1-866-344-8005
www.aplaceformom.com
A Place for Mom is an nationwide eldercare referral service for housing, in-home services, dementia care, adult day services, and more. It is free for families (the services listed can pay for more prominent listing). Searches can be done through the website, via online chat, or over the telephone with live staff.

Caring.com
www.caring.com
Caring.com provides advice from experts,  practical tips, and personal support addressing important aspects of eldercare, including comprehensive coverage of health, finance, housing, legal, daily living, and end-of-life issues. The site features articles, checklists, how-to guides, to-do lists, and caregiving tools, as well as online support groups, a national eldercare services directory, newsletters, and a daily blog on caregiving and eldercare news.

Caring Connections
HelpLine: 800-658-8898
Multilingual Line: 877-658-8896
Email: caringinfo@nhpco.org
www.caringinfo.org
Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life. The site provides free resources and information to help people make decisions about end-of-life care and services before a crisis. A listing of advance directives by state is here.

Caring From a Distance (CFAD)
4125 Albemarle St. NW, Washington, DC 20016
Phone: 202-895-9465
Email: info@cfad.org
www.cfad.org
Founded in 2002 by siblings who cared for a far-away ailing father, CFAD is an online resource that offers information and tools to help caregivers whose family members live far away.  CFAD can help connect caregivers with local service providers and educate them on where to go for help and facilitates communication services between caregiving families, friends and providers.

Center of Excellence for Elder Abuse and Neglect, University of California, Irvine School of Medicine
http://centeronelderabuse.org
In addition to direct services locally and statewide (CA), this site features educational resources for medical and social service staff, as well as pharmacists, legal and judiciary professionals, and law enforcement.

Clinician's Pocket Guide on Elder Investment Fraud and Financial Exploitation
www.investorprotection.org/downloads/EIFFE_Clinicians_Pocket_Guide_National.pdf
A handy pocket guide on financial abuse for health care and social service professionals, developed by Baylor College of Medicine's Texas Consortium Geriatric Education Center program on Elder Investment Fraud and Financial Exploitation.

Easter Seals Inc.
233 South Wacker Drive, Suite 2400, Chicago, IL 60606
800-221-6827 (toll-free)
www.easterseals.com
Easter Seals offers services and information about disabilities affecting young children and older adults as well as the military and veterans. The topics on the website include medical rehabilitation, accessibility, transportation, employment and training, and legislation affecting people with disabilities and their caregivers.  The site also has advice for caregivers, called “Being a Caregiver for Someone You Love,” and a locator to find state or local chapters.

Family Caregiver Alliance
180 Montgomery Street, Suite 1100, San Francisco, CA 94104
415-434-3388
800-445-8106 (toll free)
www.caregiver.org
The Family Caregiver Alliance is a community-based nonprofit organization that serves family caregivers. It offers information about national, state and local level programs and resources. A featured resource on their site is the Family Care Navigator, which can help caregivers locate government, nonprofit, and private programs and services. The site also features information on public policy and research that affects family caregivers, fact sheets and publications, a newsletter, and discussion groups.

HFA Cares
1710 Rhode Island Ave, NW, Suite 400, Washington, DC 20036
202-457-5811 or 800-854-3402
www.hospicefoundation.org/infocenter
Family-friendly but with much to offer professionals, this site by the Hospice Foundation of America offers free educational material and straight answers about grief, the dying process, and many other end-of-life issues.

Hospice Association of America (HAA)
228 7th Street SE, Washington, DC 20003
202-546-4759
www.nahc.org/haa
The Hospice Association of America is an organization that represents hospices, health care professionals, and volunteers who serve terminally ill patients and their families. The website shares information on regulatory issues and professional education for hospice care providers. The site offers consumers fact sheets, statistics, and the Hospice Patient’s Bill of Rights.

Informed Patient Institute
410-268-0189
www.informedpatientinstitute.org
The Informed Patient Institute is an independent nonprofit organization whose mission is to facilitate access to credible online information about health care quality and patient safety, including tip sheets on what to do if you have a concern about quality or safety. IPI also has quality ratings and evaluations of what the various "report cards" do and do not include.

Lotsa Helping Hands
2 Clock Tower Place, Suite 610, Maynard, MA 01754
Email: information@lotsahelpinghands.com
www.lotsahelpinghands.com
Lotsa Helping Hands is a free resource that assists family caregivers in coordinating help -- such as meals, rides, errands, childcare and other activities -- from friends, family members, and community organizations.

Medicare Rights Center
520 Eighth Ave., North Wing, 3rd Fl., New York, NY 10018
212-869-3850
or
110 Maryland Ave NE, Suite 112, Washington, DC 20002
202-544-5561
www.medicarerights.org
www.medicareinteractive.org
The Medicare Rights Center is the largest independent source of health care information and assistance in the United States for people with Medicare. MRC’s website offers information on Medicare coverage, Medicare prescription coverage, free monthly seminars on Medicare issues, and a manual on Medicare Part D (prescription drug plan). MRC’s other site www.medicareinteractive.org has an interactive guide to help answer questions about many Medicare issues.

NAELA - National Academy of Elder Law Attorneys, Inc.
www.naela.org/
The National Academy of Elder Law Attorneys, Inc. is a non-profit. The Academy provides a resource of information, education, networking and assistance to those who deal with issues involved with legal services to seniors and people with special needs. Family caregivers can use the site to obtain information related to their legal needs and locate lawyers who are members of the academy and specialize in serving the elderly and those with special needs.

National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor, Bethesda, MD 20814
301-718-8444
www.caregiving.org
The National Alliance for Caregiving is a nonprofit coalition of caregiving organizations and other sponsors. NAC’s work includes research, policy analysis, program development, public information campaigns, and coalition building. It also represents the United States caregiving community internationally. Its website covers resources for caregivers and professionals, information on legislation, caregiving coalitions, and professional development events. Among its resources for caregivers is www.familycaregiving101.org, an online resource with information on how to cope with the challenge of caregiving.

National Association of Geriatric Care Managers
1604 North Country Club Road, Tucson, AZ 85716-3102
520-881-8008
www.caremanager.org
The National Association of Geriatric Care Managers is a nonprofit organization committed to advancing professional geriatric care management. Its website offers information about services provided by geriatric care managers which can assist caregivers in deciding whether this service might be beneficial to them. It also offers several tools and tips for finding a care manager.

National Committee for the Prevention of Elder Abuse
1612 K Street, NW, Washington, DC 20006
(202) 682-4140
www.preventelderabuse.org
The National Committee for the Prevention of Elder Abuse website has information on types of abuse, the roles of individuals, health care workers, and communities in identifying, reporting, and preventing elder abuse, as well as information on what police, adult protective services, and other professionals can and cannot do.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500, Kensington, MD 20895-3944
800-896-3650 (toll free)
301-942-6430
http://caregiveraction.org/
The National Family Caregivers Association is a nonprofit organization dedicated to education, advocacy, support, and empowerment of family caregivers. NFCA’s website offers several online resources and a caregivers community that features message boards, e-communities, a caregiver action network, and a caregiver story project, where you can share your story or read the stories of other caregivers.

National Hospice and Palliative Care Organization
1731 King Street, Suite 100, Alexandria, VA 22314
703-837-1500
Helpline: 800-646-6460
www.caringinfo.org
www.nhpco.org
The National Hospice and Palliative Care Organization is an organization for providers of hospice and palliative care. Caring Connections (www.caringinfo.org) is their site for patients and their family caregivers. Caring Connections offers a wide range of free materials about palliative care, end-of-life care, including hospice, caregiving, advance directives, as well as pain, grief, workplace issues and financial planning.

National Resource Center on LGBT Aging
c/o Services & Advocacy for GLBT Elders (SAGE)
305 Seventh Avenue, 6th Floor, New York, NY 10001
212-741-2247
www.LGBTagingcenter.org
The National Resource Center on LGBT Aging is the country's first and only technical assistance resource center aimed at improving the quality of services and supports offered to lesbian, gay, bisexual, and transgender (LGBT) older adults. Established in 2010 through a federal grant from the U.S. Department of Health and Human Services, the National Resource Center on LGBT Aging provides training, technical assistance, and educational resources to aging providers, LGBT organizations, and LGBT older adults. The center is led by Services & Advocacy for GLBT Elders (SAGE) in partnership with 10 leading organizations from around the country.

NeedyMeds
www.needymeds.org
Needy Meds is a nonprofit organization that provides information on medicine and healthcare assistance programs. The website collects information on patient assistance programs, government programs, and other resources like disease-based assistance or drug discount cards. Needy Meds is not a patient assistance program, and does not offer financial assistance itself, but the site can help you find programs that do.

PREPARE
www.prepareforyourcare.org
The PREPARE website is designed to help people and their loved ones prepare for medical decision making. It brings the user through the steps of identifying a health care proxy, then other decisions about health care preferences that your proxy should know. Easy to use, your progress can be saved so you can think it over and return back later.

RxAssist
www.rxassist.org
RxAssist is a database of patient assistance programs that can help with managing the costs of prescription drugs. The site has information about pharmaceutical companies that offer programs that provide free or low cost medications to people who could not otherwise afford them.

Senior Safety; Information to Keep Elderly Safe
www.housingforseniors.com/Retirement-Communities/Senior-Safety--Information-to-Keep-Elderly-Safe-347.html
A page at the Housing for Seniors website, this page has a variety of resources for improving safety for older adults, including the topics of: health safety, scams and fraud, kitchen and food safety, elder abuse, and safety in an assisted living or nursing home.

ShareTheCaregiving, Inc.
(Share The Care™ model)
National Center for Civic Innovation – 6th Floor, New York, NY 10013-1590
212-991-9688
www.sharethecare.org
ShareTheCaregiving promotes “group caregiving” for individuals in need of home care, from ailing elders to multiple newborns. The Share The Care handbook provides a step-by-step approach designed to empower family, friends and neighbors to organize and maintain a “caregiving family,” whether for a month or several years. The web site offers comprehensive information, personal stories, resources, and 24 Share The Care™ forms. The organization provides e-mail and telephone support, presentations, workshops, and trainings for professionals.

This Caring Home
www.thiscaringhome.org
This award-winning website was created to provide information on best practices and home safety for dementia care. Prepared by experts over four years at Weill Cornell Medical College, this multimedia website features videos, animations, and photographs, as well as expert reviews of home furnishings, smart technologies, and homecare products. A unique and beneficial part of this website is its Home Safety-Virtual Care Section that allows visitors to explore research-based solutions to home safety and daily care issues by a simple mouse click over a room.

United States Living Will Registry®
www.uslivingwillregistry.com
The U.S. Living Will Registry® electronically stores advance directives, and makes them available to health care providers 24 hours/day via secure Internet or telephone–fax. Once registered, a person’s advance directives can be retrieved either via a registration number assigned to the patient, or via the patient’s social security number. There is a one-time fee for registering with the service, but some health care providers may offer it at a free or discounted rate.

Well Spouse Association
63 West Main Street, Suite H, Freehold, NJ 07728
800-838-0879 (toll free)
732-577-8899
www.wellspouse.org
Well Spouse is a national, nonprofit organization which gives support to wives, husbands, and partners of chronically ill and/or disabled people. Well Spouse also works to make health care professionals and the general public aware of the great difficulties caregivers face every day. Well Spouse's website provides information on various support programs such as respite weekends, online caregiver mentorship, letter writing groups and an online caregiver forum. The site also offers a resource directory with links to many other sites of interest to patients and their caregivers.

Site MapContactHomeTerms of Use
© 2013 United Hospital Fund