cancer.duke.edu/btc  
The Preston Robert Tisch Brain Tumor Center at Duke

General Information | Recommended Resources for Caregivers

This list of resources for caregivers includes Internet links, organizations that provide specific support for caregivers, and books. Whether you have a simple question or are facing a major life crisis, you are likely to find support and assistance with these resources.

Family Caregiver’s Alliance (415-434-3388) (http://www.caregiver.org/) supports and assists caregivers of brain-impaired adults through education, research, services and advocacy. The organization provides a clearinghouse of information and resources related to medical, social, public policy and caregiving issues related to brain impairments. Their website includes an online support group for friends and family members caring for an adult with cognitive disabilities. An excellent resource for information on managing problem behaviors!

National Family Caregivers Association (1-800-896-3650) (http://www.nfcacares.org/) provides education and information services, support and validation for caregivers, public awareness and advocacy devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support network, educational materials, national resource referrals, and a bereavement program.

OncoLink, the website of the University of Pennsylvania Cancer Center (http://www.oncolink.upenn.edu/) offers an unmoderated discussion list for parents, siblings, or friends of cancer patients; an e-mail discussion group about hospice-related issues; an extensive bibliography of issues related to caregiving; and an in-depth caregiver education course.

www.caregiver911.com – comprehensive list of quality links on caregiving on the Internet. Also includes listings of other resources as well as an "Ask Dr. Caregiver" section.

 BooksBooks: General Caregiving Issues 

  • Bridges, Barbara. Therapeutic Caregiving. Practical techniques for keeping persons with dementing illness more functional, both physically and mentally. 1-800-799-3414. 
  • Caposella, Cappy, and Warnock, Sheila. Share the Care. Fireside Books / Simon & Schuster, 1995. Practical and inspirational guide to setting up support systems.
  • Carter, Rosalynn. Helping Yourself Help Others: A Book for Caregivers. Random House, 1994. Many personal stories explain emotions, medical and family issues. Resource listings and bibliography.
  • Karr, Katherine L. Taking Time for Me: How Caregivers Can Effectively Deal with Stress. Prometheus books, 1992. Personal accounts demonstrate how to renew strength without jeopardizing care.
  • Klein, Allen. The Courage to Laugh. Heartwarming stories and anecdotes that help both the people experiencing a serious illness and the loved ones who care for them. 415-431-1913.
  • Lustbader, Wendy. Counting on Kindness: The Dilemmas of Dependence. The Free Press, 1994. True stories and quotations explore issues of power and dependency, handling regret, reviving self-esteem.
  • McFarlane, Rodger, and Bashe, Philip. The Complete Bedside Companion. Simon & Schuster, 1998. Chapters explain the health care team, dealing with doctors, essential nursing skills, caring for the caregiver.
  • Samples, Pat. Daily Comforts for Caregivers. Compassionate reassurance for caregivers. Fairview Press. 1-800-544-8207.
  • Strong, Maggie. Mainstay: For the Well Spouse of the Chronically Ill. Bradford Books, 1997. How to handle getting the news, changed dependencies, acts of rescue, family conflicts.
  • Sullivan, Tom. Special Parent, Special Child: Parents of Children with Disabilities Share Their Trials, Triumphs, and Hard-Won Wisdom. Putnam, 1996. Inspiring and informational guide.
  • Sherman, James R. Caregiver Survival Series. A treasury of practical information to help caregivers take control of their lives and take care of themselves. Titles include: The Magic of Humor in Caregiving, Creative Caregiving, Positive Caregiver Attitudes, Coping with Caregiver Worries. Pathway books, P.O. Box 27790, Golden Valley, MN 55427-0790; 1-800-958-3375.

 BooksBooks: Caring for Persons with Memory Loss or Dementing Illness 

  • Hoffman, Stephanie and Platt, Constance, Comforting the Confused: Strategies for Managing Dementia.
  • Springer Publishing Company, 536 Broadway, New York, NY 19912-3955.
  • Mace, Nancy, and Rabins, Peter. The 36-Hour Day: A Family Guide to Caring for Persons with AD and Related Dementing Illnesses, and Memory Loss in Later Life. Johns Hopkins University Press, 1991. The "Bible" on caring for a loved one with memory deficits and cognitive changes.
  • Robinson, A., Spencer, B., and White, L., Understanding Difficult Behaviors: Some Practical Suggestions for Coping with Alzheimer’s Disease and Related Illnesses. Geriatric Education Center of Michigan, East Lansing, MI 517-353-7780.
  • Sheridan, Carmel, Failure-Free Activities for the Alzheimer’s Patient: A Guidebook for Caregivers. Cottage Books, 2419-13th Ave., Oakland, CA 94606.


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