Information, Associations & Organizations
The world’s largest specialty nursing organization, AACCN is dedicated to creating a healthcare system driven by the needs of patients and their families, where acute and critical-care nurses make their optimal contribution. Their Acute and Critical Care Choices Guide to Advance Directives is an excellent resource.
For more than 20 years, the Academy has dedicated itself to advancing hospice and palliative medicine and improving the care of patients with life- threatening or serious conditions.
This comprehensive February, 2012 study details the attitudes and experiences of death and dying of the residents of America’s most populous state. Highlights include the sharp differences between residents’ preferences and the realities of their deaths, the absence of conversations between patients and physicians concerning end-of-life options and the failure of caregivers to observe preferences, especially among non-English speaking peoples.
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. It provides free resources and information to help people make decisions about end-of-life care and services before a crisis, and brings together community, state, and national partners working to improve end-of-life care through a national campaign called It’s About How You LIVE.
Their website has state-specific information on advance medical directives and good resources. They also have a multilingual help line and send free materials in Spanish and Mandarin Chinese.
A public voice for caregivers, Family Caregiver Alliance’s pioneer programs in information, education, services, research, and advocacy, support and sustain the important work of families nationwide, caring for loved ones with chronic, disabling health conditions. FCA offers programs at the local, state, and national level, and provides information in Spanish and Chinese.
Celebrating its 25th anniversary in 2011, HPNA is the nation’s largest and oldest professional nursing organization dedicated to promoting excellence in hospice and palliative nursing care.
A nonprofit coalition of national organizations focusing on family caregiving issues, the National Alliance for Caregiving works to improve the quality of life for families and care recipients. Their website provides excellent resources for caregivers.
The largest nonprofit membership organization representing hospice and palliative care programs and professionals in the U.S., the NHPCO is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
A Pocket Guide for the Alzheimer’s Caregiver – by Daniel C. Potts, MD
A practical, “how to” manual for anyone caring for a person with Alzheimer’s disease. Written by two caregivers, one of whom is a neurologist, this book presents a unique perspective on the journey so many families must take.
A site that articulates the “patient” perspective and communicates engagement by using cultural assets as a bridge between the patient and the provider communities. Their stories are a singular voice fighting for patient engagement in the healthcare system.
This website helps families develop the skills to talk with aging relatives about end-of-life issues, such as advance medical directives, financing, pets, driving, housing, safety, health and fitness, Alzheimer’s, and spirituality. It also has information on state and federal programs, which range from caregiver resources, care coordination services, consumer services, education programs, and elder rights.