Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

A. Original Tools From this Issue's Contributors:

From The Brooklyn Hospital Center and Wartburg Lutheran Home For The Aging Caregiving Initiative: Quick Tip Card - Working with the Doctor, Created by Beth-Ann Gillery, CSW. This tool provides tips for caregivers in preparing for, and getting the most out of interactions with their loved one's doctor.

B. Websites Related to this Issue's Contributors:

Carers: Government Information for Carers
http://www.carers.gov.uk
A British governmental site with a great deal of information for family caregivers, called "carers" in the United Kingdom. This site posts the British National Strategy for Carers, a 1999 governmental policy on caregivers with a foreword by Prime Minister Tony Blair. This document is available in PDF format from the homepage. Readers may also find the Quality Standards for Local Carer Support Services at http://www.carers.gov.uk/qualitystan.htm This document can be downloaded in PDF format. You may also get to this page by clicking on the "Information Zones" button in the left margin and then the "Help for the Carer" button to find a list of documents of interest, including these quality standards. The King's Fund established a working group to develop these standards in response to the National Strategy for Carers. This working group included representatives from the Association of Directors of Social Services, Department of Health, National Health Service (NHS) Confederation and National Carers' organizations and was chaired by Penny Banks of The King's Fund. In February 2000 the British government approved these standards.

Hospice Foundation of America http://www.hospicefoundation.org/
Eighth Annual National Bereavement Teleconference
Caregiving and Loss: Family Needs, Professional Responses
Wednesday, April 18, 2001 at 1:30 pm – 4:00 pm E.D.T.
The teleconference was moderated by Cokie Roberts of ABC News and features Kenneth J. Doka, Bernice Harper, Carol Levine, Susan Reinhard and Myrl Weinberg.

National Alliance for Caregiving
http://www.caregiving.org/
Special feature of this site: the National Alliance for Caregiving's Family Care Resource Connection at ttp://www.caregiving.org/content/fcrc.html
Each entry in the Family Care Resource Connection has been reviewed and rated for its quality, usefulness to family members, timeliness and accessibility. The resources are rated on a scale from 4 stars (the best) to 1 star. Reviews are prepared by experts in family caregiving and highlight the strengths and weaknesses of each item. Items include books, videos, websites, magazines, fact sheets and other resources addressing the range of issues and questions faced by family caregivers.

Princess Royal Trust for Carers
http://www.carers.org/
This organization sponsors Carer Centres throughout the United Kingdom for the six million adult carers there. (Carer is the British term for an unpaid family caregiver.) They estimate that there are also 50,000 young carers, or people under the age of 18 who are providing care for parents, or siblings. The site offers an online carer discussion group and chat room, as well as an extensive list of links to sites based in the United Kingdom on a wide variety of related topics.

The TBI Help Desk for Caregivers: Jamaica Hospital Medical Center
http://www.tbi-help.org
Another project funded by the United Hospital Fund Families and Health Care Project, this website offers resources and tools for caregivers of traumatic brain injury patients.

United Hospital Fund – Families and Health Care Project
http://www.uhfnyc.org/
Carol Levine's new book, Always on Call: When Illness Turns Families into Caregivers is available from the homepage. To get to the Families and Health Care Project, directed by Carol Levine, click on the Research and Policy Initiatives button in the left margin of the home page. The Families and Health Care Project provides a wealth of resources and information for caregivers and families. Note the frequently asked questions (FAQ) about family caregiving page, and the Resources/Links for family caregivers. Carol Levine also wrote the special report: Rough Crossings: Family Caregivers' Odysseys through the Health Care System published by United Hospital Fund, 1998. Find the table of contents, executive summary and ordering information at http://www.uhfnyc.org/pubs/books/bkrough.html

C. Other Relevant Websites:

Administration on Aging
http://www.aoa.gov/
This US government agency website has many useful resources for older Americans and family caregivers. These include policy and legislation information such as: An overview of the Older Americans Act (OAA) Amendments of 2000, full text of the OAA Amendments of 2000 (amendments only) at http://www.aoa.gov/Oaa/2000/hr782.html, and frequently asked questions (FAQ) about the OAA Amendments of 2000. This act was signed into law by President Clinton in November 2000. The National Family Caregiver Support Act is a key part of this new legislation. In addition, this website offers an array of resources specifically targeted to caregivers: notably Caregiver Resources, and Because We Care: A Guide for People Who Care. For health care providers, a new guidebook is available in PDF format: Achieving Cultural Competence: A Guidebook for Providers of Services to Older Americans and Their Families (January, 2001). Review article Family Caregiving in an Aging Society by Sharon Tennstedt, PhD presented March 29, 1999 at the US Administration on Aging Symposium available at: http://www.aoa.gov/caregivers/FamCare.html

AARP Webplace: Caregiving
http://www.aarp.org/indexes/health.html#caregiving
American Association of Retired Person's WebPlace: Caregiving provides a wealth of information about the many services, publications and support systems that are available to caregivers. Also see: http://www.dsaapd.com/newpage4.htm for a list of books and publications related to Caregiving.

American Society on Aging
http://www.asaging.org/
Offers educational programs, conferences, and publications. Recently sponsored a joint conference with the National Council on Aging, which included a preconference special program "Meeting the Needs of Family Caregivers."

Agenet Elder Care Network
http://www.agenet.com/
AgeNet, Inc. operates a comprehensive, national eldercare network to meet the specific needs of the fast growing aging population and their adult caregiving children. Resources for caregivers include the business side of eldercare, bringing together suppliers of eldercare products and services with businesses such as nursing homes, assisted living facilities, home health care providers, health systems, and organizations or companies with employee assistance programs. All sorts of links and information are available at this site, from how to handle home care and where to buy products to caregiver support. See list of books and information about caregiving: http://www.agenet.com/caregiver_books.html

Audio/Visual Resources at UC Berkeley: Family Relationships and Caregiving
http://cssr21.socwel.berkeley.edu/aging/resources/av_3.htm#rights
These include audio tapes and videos:
I Care: A Caregivers Bill of Rights
Moving Beyond Stress and Burden: Future Directions in Caregiving Research, Practice and Policy
What Works and What Doesn't: Lessons from Eldercare Research
Aging of Parents-Tape 1: Guide for Adult Children
Complaints of a Dutiful Daughter
Eldercare Issues and Answers

Beth Israel Medical Center
Department of Pain and Palliative Care
http://www.stoppain.org
This site has extensive tools and resources for family caregivers. The index, at http://www.stoppain.org/caregivers/index.html includes Getting Started—Now you are a Caregiver, Navigating "the System," Symptom Management at Home, Goals of Care in Progressive Illness, You Have Needs, Too, Where to Find Help. Tools include checklists and suggestions for developing an action plan, articulating the patient's needs and how to assess one's interpersonal resources, information about particular symptoms and many other items.

Caregiver.com
http://www.caregiver.com
Includes Alzheimer's Caregiver, with articles about dementia care, opportunities to chat with other Alzheimer's caregivers and experts in the field. Also offers weekly "Caretips" and poetry. Readers may subscribe to Caregiver Magazine but may view the current weekly newsletter for caregivers for free online.

Caregiver Survival Resources
http://www.caregiver911.com/
Created by a psychologist and nurse husband-and-wife team, this site offers caregivers resources, support and an online Question and Answer forum.

CaregiversCount
http://www.caregiverscount.com
This site is an online resource for non-partisan information impacting caregivers and their families. Provides information about legislation and initiatives in Washington, D.C. that impact caregivers. This organization grew out of a white paper presented Sept. 12, 2000 authored by Robert B. Blancato, former Executive Director of the 1995 White House Conference on Aging. Blancato has called for the development and passage of a Universal Caregivers Act in 2001. Readers may download Blancato's Sept. 12, 2000 presentation "The Future of Caregiving" in PDF format at http://www.caregiverscount.com/qa.html

Caregiving.com
http://www.caregiving.com/
This site offers tips, support, advice and resources for caregivers and is run by Denise Brown, who operates The Center for Family Caregivers, a nonprofit organization dedicated to helping persons who care for chronically ill or disabled family members based in Park Ridge, IL. Ms. Brown also publishes Caregiving newsletter: http://www.caregiving.com/caregiving/index.htm

Caregivers Zone
http://www.caregiverzone.com
A complete and comprehensive website offering caregivers practical information, an online community, and an opportunity to share their personal stories. Also found here: products, services, articles and tips on managing day-to-day living including meals, personal care, day care and long-term care options.

The Carers National Association
http://www.carersnorth.demon.co.uk/
A lobbying organization for carers (family caregivers) across the United Kingdom. This site has extensive links for organizations within the United Kingdom on policy development and research on carers, information, local and regional support groups, publications on specific illnesses.

CareThere
http://www.CareThere.com
Resources, commercial products and services, online discussion and a newsletter are available at this site. Categories include: Home, Health Center, Finance, Insurance & Law, Communications, Community, Caregiver's Marketplace, CareThere Mall, and Library. Among these many resources are "Safe Check" a program the user can enter the names of all current medications to check if over-the-counter and prescribed medications might have dangerous interactions. Safe Check link is in the left-hand margin of the homepage. Many different pages and menus on this site, so it may take some time to find what you want.

Chapter 11: Family Caregiving. Part of the report of the Priority Expert Panel on Long-Term Care for Older Adults
http://www.nih.gov/ninr/vol3/FamCare.html
One of a series of expert panels constituted by the National Center for Nursing Research (NCNR) between FY 1988 and 1992, in conjunction with the development of the National Nursing Research Agenda (NNRA). Chapter 11 covers Family Caregiving; the entire report can be found here as well.

Crossroads - Caring for Carers
http://www.crossroads.org.uk/
Crossroads is the major charity in the United Kingdom providing practical support to carers/family caregivers in the home. Their main service is providing short breaks for carers, so that carers can go out to do whatever they want. This organization provides 3.7 million care hours to 28,600 carers in England and Wales.

ElderCare Online
www.ec-online.net
ElderCare Online provides information, education, and support to family members caring for aging loved ones, especially those coping with Alzheimer's and related dementias. The site includes a busy interactive message board as well as a bimonthly newsletter, The Caregiver's Beacon.

Empowering Caregivers
http://www.care-givers.com/pages/main.html
Empowering Caregivers is an extensive online resource, chock full of information and opportunities for caregivers to find community and support. They offer message boards, information on local community support, journal exercises for caregivers to work through their experience, articles on healing music and alternative therapy techniques, and chats with experts.

Faith in Action
http://www.fiavolunteers.org/
Faith in Action is the national program office for an interfaith volunteer program that aims to better the lives of people with long-term health needs. Supported by The Robert Wood Johnson Foundation, this national program office has helped to build more than 1,100 interfaith volunteer programs across the United States. Faith in Action provides start up grants as well as support and advice on how to develop successful, sustainable caregiving programs that serve their communities and recently received a new infusion of funds. Grant applications are currently available.

Familycare America Newsletter:
A Lifeline to Families Caring for Family Members
http://www.familycareamerica.com/
Substantive site with many resources some of which cost money ($), but many of which are free. It includes an interactive assessment tool ($), a search tool that uses US zip code to locate resources for local long-term care facilities, home health agencies, elder law attorneys etc. in the United States, products for sale, and a library with extensive resources. Library includes many useful checklists & forms, articles on caregiving basics, death and dying, resources for long-distance caregiving, and many other topics. The page about state and local long-term care ombudsmen includes tips for how to use these consumer watchdogs to get the latest information about long-term care facilities. A free monthly online newsletter with timely and wide-ranging articles is also available.

Family Caregiver Alliance Website
http://www.caregiver.org/
This site has many resources, current articles, and links to further information on caregiving, disease processes, and current events related to caregiving.

Hiram College's Center for Literature, Medicine and the Health Care Professions
http://143.206.107.71/www/litmed/
CARING FOR CAREGIVERS SEMINAR JUNE 19-24 IN OHIO
The Center is offering a week-long seminar on how caregivers can take better care of themselves. The ninth annual summer seminar addresses caregiver issues such as coping with end-of-life issues, chronic illness, and children's health problems. Participants and faculty will explore caregiver topic areas through drama, poetry and prose, group discussions, workshops and readers' theater. For more information on the seminar, registration, and a complete list of seminar faculty contact the Center at 330-569-5380 or Carol Donley by email at donleycc@hiram.edu

Home Care Companion: Resources for Caregivers
http://www.homecarecompanion.com
Books, videos and training resources for instruction on basic caregiving procedures are available at this site.

Human Development and Family Life Bulletin: Caregiving for the Elderly
http://www.hec.ohio-state.edu/famlife/bulletin/bullmain.htm
The Human Development & Family Life Bulletin is a resource for professionals who work with children, youth and families. It includes reviews of research related to important topics of interest to practitioners, practice wisdom from the field, an update on evaluation issues and summaries of new teaching and intervention resources. Volume 2, Issue 4, Winter 1996 focuses on caregiving for the elderly.

The King's Fund
http://www.kingsfund.org.uk/
The King's Fund is an independent health care charity working for better health in London and across the United Kingdom. The King's Fund gives grants and carries out research and development work to bring about better health policies and services. The King's Fund spearheaded the development of the recent Quality Standards for Local Carer Support Services approved by the British government in February 2000. More details on their new project "Quality Support to Carers" can be found at The Health and Social Care Carer Support page at http://www.kingsfund.org.uk/eHealthSocialCare/html/carers.htm They have a useful tool, the Carers Compass for Primary Care, which can be downloaded in PDF format at http://www.kingsfund.org.uk/eHealthSocialCare/assets/applets/
penny_compass1.pdf  The Carers Compass is a booklet/checklist designed to aid primary care teams in meeting eight key needs of carers and so improve the quality of their care. (Reminder: Carer is the British equivalent of family caregiver.) This site has extensive annotated links to a wide variety of European Health and Social Care organizations as well as an annotated set of links to topic-specific search engines—a treasure trove.

National Aging Information Center: A Service of the Administration on Aging
http://www.aoa.dhhs.gov/NAIC/Notes/caregiverresource.html
A warehouse of information, this site has links to websites and articles related to aging and family caregiving.

National Family Caregivers Association (NFCA)
http://www.nfcacares.org/
NFCA is a grass roots membership organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones. Through its services in the areas of information and education; 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. NFCA offers a number of publications including Take Care! Self Care for the Family Caregiver —a quarterly newsletter providing can-do advice, resources and Q & A. This publication and other resource materials from the NFCA including A National Report on the Status of Caregiving in America (2000) can be purchased at http://www.comcat.com/~nfca/securepubs.html

National Parent Information Network
http://npin.org/library/pre1998/n00225/n00225.html
Family Caregiving, by Nancy Beekman. Full-text article online about caregivers, addressing caregiver burden, effective coping strategies, and ongoing challenges.

Resources for Enhancing Alzheimer's Caregiver Health (REACH): Progress Reports
http://www.edc.gsph.pitt.edu/reach/progresso.html
This report, Conceptual Framework Workgroup Progress Report, January 2000 details the five-year initiative established in 1995 by the NIH to test the most promising home and community based interventions for enhancing family caregiving, particularly with minority families, across six research sites and one coordinating center. The study was supported by the National Institute on Aging and the National Institute of Nursing Research and prepared by the REACH Coordinating Center at the University of Pittsburgh, Center for Social and Urban Research.

Strength for Caring: An Educational Program for Family Cancer Caregivers hosted by OncoLink at the University of Pennsylvania
http://www.oncolink.upenn.edu/sfc/
This educational program was developed by the University of Pennsylvania School of Nursing with a grant from the Department of Health. The site claims that The Strength for Caring program is conducted at convenient times locations and is free of charge, but the link to details on how to attend was down at the time of our posting.

University of Detroit Mercy: Caregiver Project Focus Group
http://ids.udmercy.edu/library/caregiver/cg.htm
This site provides a list of resources in the University of Detroit Mercy Libraries/Media Services related to caregiving. An extensive list of videos and books can be found here. Also link to their Caregiver Brochure: http://ids.udmercy.edu/library/caregiver/cgbrochure.htm for local support services.

Web of Care
http://www.webofcare.com/home/wocp.webofcare
The site includes many resources for family caregivers. Web of Care is an online supply procurement and caregiving-information resource for home health agencies, long-term care facilities, health organizations, professional care providers and at-home family caregivers. Their primary line of business is Internet supply, cost-control and data management solutions for small to medium long-term care providers.

Well Spouse Foundation
http://www.wellspouse.org/
The Well Spouse Foundation is a national, not for profit membership organization which gives support to husbands, wives and partners of the chronically ill and/or disabled. Look at the bi-monthly newsletter, Mainstay, found at: http://www.wellspouse.org/mainstay.html

For more dementia-specific sites, please go to the Resources and Tools page of Innovations in End-of-Life Care Vol. 1, No. 4, 1999, Only Connect: Promoting Meaning in the Lives of Patients with Advanced Dementia.