Information and Support for Caregivers
According to the National Family Caregivers Association, there are more than 50 million family caregivers in the United States right now. Among these are parents, children, siblings, spouses, and partners — anyone who helps take care of a friend or relative who needs assistance with personal or medical care.
The range of tasks performed by caregivers is broad and depends on both the needs of the person receiving care and the caregiver’s ability to deliver what is needed. When providing care for a person with diabetes, a caregiver might perform the sorts of tasks that people with diabetes usually do for themselves, such as monitoring blood glucose levels, making sure that medicines are taken on time, giving insulin injections, and preparing healthy meals.
Caregivers have, of course, been around for centuries, but only in the last 30 years has there been an organized effort to recognize and support them. As a result, caregivers now have many possible sources of instruction and aid — including emotional support, often through connections with other caregivers. The following resources offer a variety of tools to address caregiving needs.
AMERICAN MEDICAL ASSOCIATION GUIDE TO HOME CAREGIVING
New York, 2001
This book is a comprehensive manual covering issues related to caregiving, including caregiver skills, home preparation, and choosing an outside care provider. It is written in a straightforward, informational style.
CAREGIVING: THE SPIRITUAL JOURNEY OF LOVE, LOSS, AND RENEWAL
Beth Witrogen McLeod
New York, 1999
This Pulitzer Prize–nominated book offers general advice and presents different approaches to caring, using real-life caregiving experiences to illustrate points throughout. It also deals with practical concerns such as navigating the health-care system and alleviating caregiver stress.
CARING FOR YOUR PARENTS: THE COMPLETE FAMILY GUIDE
Hugh Delehanty and Elinor Ginzler
New York, 2008
Published in conjunction with AARP, this book aims to provide a practical road map for anyone with elderly parents. Topics range from making homes more elder-friendly to dealing with siblings who don’t contribute to care. Each chapter of the book has a list of Web sites and organizations related to the chapter’s topic.
ELDERCARE FOR DUMMIES
Rachelle Zukerman, PhD
New York, 2003
This book brings the familiar approach of the popular Dummies series to the topic of caregiving. It is organized for easy reference and covers almost every aspect of the topic imaginable, including medical devices, spirituality, and dealing with forgetfulness, anxiety, or depression in the care recipient.
THE ELDERCARE HANDBOOK
Stella Mora Henry, RN
New York, 2006
The author of this book is a longtime nurse and a nursing home administrator who helped care for her parents, both of whom had Alzheimer disease. The book deals with the emotional aspects of caregiving as well as practical concerns such as insurance and legal matters. It also addresses how to decide whether a long-term care facility is the best option for a loved one and, if so, how to successfully make that adjustment.
Today’s Caregiver magazine and its companion Web site, Caregiver.com, provide articles on a variety of topics as well as recipes, personal stories, and information on support groups and other resources. The Web site has a state-by-state guide to resources, as well as audio interviews with authors and notable people involved in caregiving. An annual subscription to the magazine (six issues) costs $18.
NATIONAL FAMILY CAREGIVERS ASSOCIATION
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
The National Family Caregivers Association conducts research on caregiving and, through its Web site, offers information and educational materials. By joining the group’s “Family Caregiver Community,” caregivers get a quarterly newsletter and a monthly e-newsletter, as well as access to an online educational library and a pen pal program for caregivers.
FAMILY CAREGIVER ALLIANCE
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
The Family Caregiver Alliance is a public advocacy group for caregivers. It publishes fact sheets on caregiving (available online) and also has more informal “Hot Topic” guides, as well as online discussion groups. The Web site’s Family Care Navigator has a state-by-state list of resources available to caregivers; it also lists resources by topic and has answers to common questions.
NATIONAL ALLIANCE FOR CAREGIVING
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
This group represents a coalition of national caregiving organizations and other groups related to caregiving. It has both research-based publications and brochures for caregivers available, including one in Spanish.
Web sites/online tools
CareCommunity offers information on caregiving through articles, online booklets, and an “Ask an Expert” feature. It also lets caregivers share stories, concerns, and advice through discussion forums and blogs (which any member of the site can write). Registration for the site is free.
This site has information on numerous aspects of eldercare, including home care, fiscal and legal matters, and disease-specific information. Many topics are covered in a simple question-and-answer format, and articles tend to be very brief and specific.
This section of AARP’s Web site has articles, personal stories, a Q&A column, and a Tool Kit that includes organizational materials, tips for dealing with employers, information on long-distance caregiving, and tips on what benefits — both private and public — are available to caregivers.
This collection of personal blogs also has a guide for expectant caregivers (”The Caregiving Years”), tips, FAQ’s, and quizzes.
FAMILY CAREGIVING 101
This site was established jointly by the National Family Caregivers Association and the National Alliance for Caregiving. It provides basic information and tips on several aspects of caregiving, emphasizing caregiver preparedness and self-care at all stages, from before the caregiving begins until after it ends.
MEDLINE PLUS: CAREGIVERS
This Web page from the National Institutes of Health is a list of links to articles and guides on other sites. The articles cover a wide range of topics, from caregiver stress, to acting in an emergency, to daily dental care, and much more.
MEDICARE CAREGIVER INFORMATION
This Web site focuses specifically on how caregivers can make the most of Medicare for their care recipients. It has a comprehensive guide to Medicare for caregivers, an online video of a panel discussion on connecting caregivers to Medicare, and numerous articles.
STRENGTH FOR CARING
This site on caregiving, created by Johnson & Johnson, has informational articles, personal stories, and message boards through which caregivers can communicate. A unique offering is its CareConnector, an application for iPhone and iPod touch that includes a care planner, a prescription manager, a journal, and links to the online message boards of Strength for Caring.
LOTSA HELPING HANDS
Created by the National Alliance for Caregiving, this site allows caregivers to create an online community with friends, relatives, neighbors, and others to manage caregiving tasks — for either a single caregiving situation or for more than one. The intent is to make it easier for caregivers to ask for help. Lotsa Helping Hands aims to be user-friendly and is free to use.
YOUR CAREGIVING JOURNEY
Your Caregiving Journey is a weekly online radio show hosted by Denise Brown, who is also the creator of Caregiving.com. The show’s subjects include traveling with a care recipient, saving money, books on caregiving, and personal profiles of caregivers.
CARING FOR YOUR PARENTS
PBS/WGBH Boston, 2008
This documentary, a companion to the book of the same title, follows several families through their caregiving experiences while also exploring the broader phenomenon of caregiving. A DVD of the program is available for purchase at www.amazon.com and www.shoppbs.org; the program can also be viewed for free online at www.pbs.org/wgbh/caringforyourparents. The online video is paired with a free “Caregiver’s Handbook” and a separate video, A Conversation on Caring, in which a panel discusses issues related to caregiving.
This service, available by phone or on the Web, gives the contact information of local public agencies that deal with services for the elderly. The Web site also has a link (”Eldercare Locator Pubs,” under “Other Resources”) to fact sheets and booklets for older adults and caregivers that can be downloaded or ordered in printed form.
Statements and opinions expressed on this Web site are those of the authors and not necessarily those of the publishers or advertisers. The information provided on this Web site should not be construed as medical instruction. Consult appropriate health-care professionals before taking action based on this information.