What Other Caregiver Resources Are There?

CAREGIVER ADVOCACY ORGANIZATIONS

National Alliance for Caregiving: Dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregiving.

National Family Caregiver Association: 1-800-896-3650. The National Family Caregivers Association (NFCA) exists to support family caregivers and to speak out publicly for caregivers' needs. Through its services in the areas of education and information, support and validation, public awareness and advocacy, NFCA strives to minimize the disparity between a caregiver's quality of life and that of mainstream Americans.

The Next Step in Care: is a website is designed to help family caregivers and health care professionals work together to make the transition from one patient care setting or level of care to another as smooth and effective as possible. The website covers transitions into and out of hospitals, rehab units in nursing homes, and home care agency services.

Well Spouse Foundation: 1-800-838-0879. This non-profit, membership organization provides support to wives, husbands and partners of chronically ill and/or disabled people. Here you can sign up for a caregiving mentor, or become a mentor for a new caregiver.

Family Caregiver Alliance: FCA serves as the lead agency in California 's system of Caregiver Resource Centers and operates the National Center on Caregiving to advance the development of high-quality, cost-effective support programs for family caregivers in every state in the country.

Children of Aging Parents: 800-227-7294

Lotsa Helping Hands: Lotsa Helping Hands powers private online caring communities that help restore health and balance to caregivers’ lives. The free service brings together caregivers and volunteers through online communities that organize daily life during times of medical crisis or caregiver exhaustion in neighborhoods and communities worldwide.

OTHER CAREGIVER RESOURCES

Caring.com: Helping you help your parents.

Strength for Caring: Site for family caregivers sponsored by Johnson & Johnson.

Caregiving.com: Want to know where you are in the six stages of caregiving Find out at Caregiving.com, a site that features pages of tools and resources, including online support groups, and a kit for the new caregiver.

…And Thou Shalt Honor: The site for the acclaimed PBS caregiving documentary …And Thou Shalt Honor provides a variety of caregiving tools and resources.

FINDING LOCAL RESOURCES

Eldercare Locator: Supported by the Administration on Aging, this site links visitors to services for elders and/or disabled people in their local communities. Caregivers can also speak to an information specialist by calling the toll-free Eldercare Locator service 1-800-677-1116.

National Family Caregiver Support Program Resource Room: The Caregiver Resource Room is where families, caregivers, and professionals can find information about The National Family Caregiver Support Program, including: where you can turn for support and assistance, and providing services to caregivers.

The National Private Duty Association (NPDA): National Private Duty Association (NPDA) is a non-profit national voice for organizations that provide private duty home care services and an advocate for services which benefit the consumers for whom they care: seniors, children, persons with disabilities, those with chronic health conditions and anyone whose quality of life can be improved by having a care worker help in their home.

National Adult Day Services Association: 1-800-422-9046

INSURANCE ISSUES: MEDICARE

http://www.medicare.gov/: General information about Medicare.

Medicare Rights Center: Having difficulties dealing with the health insurance maze For those who have questions or problems regarding coverage, this not-for-profit, non-governmental website can provide some answers and suggestions.

Department of Veteran's Affairs: 1-800-827-1000

Social Security Disability: 1-800-722-1213

GERIATRIC CARE MANAGERS

National Association of Geriatric Care Managers: END-OF-LIFE CARE

National Hospice and Palliative Care Organization:1-800-658-8898

Last Acts Palliative Care Resource Center: Last Acts is the largest campaign to improve care and caring near the end of life and is funded by The Robert Wood Johnson Foundation. This section of the Last Acts website focuses on practical information and tools on palliative care for both family members and health care professionals.

Aging With Dignity: A non-profit web site that provides practical information, advice and legal tools that can help you ensure that your wishes and those of your loved ones will be respected. Includes information about the Five Wishes document that helps you express how you want to be treated if you are seriously ill and unable to speak for yourself.

LONG TERM CARE

Mr. Long Term Care: This site features a variety of resources about long term care and long term care insurance.

LEGAL/FINANCIAL/MEDICATION ASSISTANCE

National Association of Elder Law 

The Medicine Program: The Medicine Program is a volunteer organization that helps get patients on pharmaceutical medication assistance programs.

ONLINE SUPPORT GROUPS

Parkinson’s Information and Exchange Network Online (P-I-E-N-O): An international e-mail list and website about Parkinson disease.

CARE-Caregivers List: Because CARE is a closed list intended primarily for caregivers, please email your request to join to list owner Camilla Flintermann at flintec@muohio.edu. It is helpful to tell briefly what your "PD/CG situation" is, and to indicate where you live. You will be added, notified, and sent additional information when you are welcomed to this "virtual support group."

Want to Learn More?

Request a free copy of this NPF manual:
Caring and Coping

Caregiving content reviewed by: Susan Imke, RN, MS, Family Nurse Practitioner, Senior Health Solutions

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