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

Arno PS, Levine C. Memmott MM. The economic value of informal caregiving. Health Affairs. 1999;18(2):182-8.

Crabtree H, Warner L. Too Much to Take On: A Report on Young Carers and Bullying. London: The Princess Royal Trust for Carers, 1999.

Doka KJ, Davidson JD, eds. Caregiving and Loss: Family Needs, Professional Responses. Washington, DC: Hospice Foundation of America, 2001.

Levine C. (ed). Always on Call: When Illness Turns Families into Caregivers. New York, NY: United Hospital Fund of New York, 2000.

Levine C. Home sweet hospital: The nature and limits of private responsibilities for home health care. Journal of Aging and Health. 1999;11(3):341-59.

Levine C. Family caregivers: Hospitals’ most vulnerable partners. Trustee. 1999;52(2):24-25.

Levine C, Zuckerman C. Hands on/hands off: Why health care professionals depend on families but keep them at arm's length. Journal of Law, Medicine & Ethics. 2000;28(1):5-18.

Levine C, Zuckerman C. The trouble with families: Toward an ethic of accommodation. Annals of Internal Medicine. 1999;130:148-152.

Pettitt G, Kenny D. Carers Count: A Research Report on Carers in London. London: The Princess Royal Trust for Carers, 2000.

Warner L. Seven and a Half Minutes is Not Enough: A Good Practice Guide for Carers Support Workers and GP Practices. London: The Princess Royal Trust for Carers, 1999.

Warner L, Wexler S. Eight Hours a Day and Taken for Granted? London: The Princess Royal Trust for Carers, 1998.

Wexler S, and The Carers in Employment Group. Carers in Employment: A Report on the Development of Policies to Support Carers at Work. London: The Princess Royal Trust for Carers, 1995.

Abel, Emily K. Hearts of Wisdom: American Women Caring for Kin, 1850-1940. Cambridge, MA: Harvard University Press, 2000.

Annerstedt L, Elmstahl S, Ingvad B, et al. Family caregiving in dementia – An analysis of the caregiver’s burden and "breaking point" when home care becomes inadequate. Scandanavian Journal of Public Health. 2000;28(1):23-31.

Ayres L. Narratives of family caregiving:The process of meaning making. Research In Nursing & Health. 2000;23(6):424-434.

Brown D. The Caregiving Years: Six Stages to a Meaningful Journey. Park Ridge, IL: Tad Publishing Co., 2000.

Canam D, Acorn S. Quality of life for family caregivers of people with chronic health problems. Rehabilitation Nursing. 1999;5:192-196.

Carlisle C. The search for meaning in HIV and AIDS: The carer’s experience. Qualitative Health Research. 2000;10(6):750-765.

Chou KR. Caregiver burden: A concept analysis. Journal of Pediatric Nursing. 2000;6:398-407.

Corcoran M, Gitlin LN. Managing eating difficulties related to dementia: A case comparison. Topics in Geriatric Rehabilitation. 1996;12(2):63-69.

Dilworth-Anderson P. The structure and outcomes of caregiving to elderly Blacks: A research agenda. African American Research Perspectives. Spring 1997. http://www.isr.umich.edu/rcgd/prba/persp/sp97/sp97.html

Doka KJ. Living with Life-Threatening Illness: A Guide for Patients, Their Families, & Caregivers. San Francisco, CA: Josey-Bass Publishers, Inc., 1993.

Fourteen Friends LLC. Fourteen Friends Guide to Eldercaring. New York, NY: Broadway Books, 1999.

Glajchen M, Fraidin L. Caring for the caregivers. Pain Medicine and Palliative Care Newsletter. Vol. 2, No 3. http://www.stoppain.org/for_professionals/newsletter/
newsletter/no3/caregivers.html

Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. The Hospice Journal. 2001;15(4):1-18.

Karpinski M. Quick Tips for Caregivers. Medford, OR: Healing Arts Communications, 2000.

Koch T. Mirrored Lives: Aging Children and Elderly Parents. New York, NY: Praeger Books, 1990.

Last Acts. Last Acts Family Committee Consumer/Family Resources for End-of-Life Care. Washington, DC: Last Acts, 2001. (If you have questions regarding the Last Acts Campaign, the Family Committee, or would like additional copies of this compendium, please send an email to LastActs@aol.com

Lynn J, Harrold J, Center to Improve Care for the Dying. Handbook for Mortals: Guidance for People Facing Serious Illness. New York, NY: Oxford University Press, 1999.

McGadney BF. Family and church support among African American family caregivers of frail elders. African American Research Perspectives. Spring, 1995. http://www.isr.umich.edu/rcgd/prba/persp/sp95/sp95.html

McLeod B. Caregiving: The Spiritual Journey of Love, Loss and Renewal. New York, NY: John Wiley & Sons, 1999.

MetLife Mature Market Group and National Alliance for Caregiving. The Metlife Study of Employer Costs for Working Caregivers. Based on data from Family Caregiving in the U.S.: Findings from a National Survey. Wesport, CT: Metropolitan Life Insurance Company, 1997.

Nijboer C. Triemstra M, Tempelaar R, Mulder M, Sanderman R, van den Bos GA. Patterns of caregiver experiences among partners of cancer patients. Gerentologist. 2000;40(6):738-746.

Parks SM, Novielli KD. A practical guide to caring for caregivers. American Family Physician. 2000;62(12):2613-2622.

Pickett M, Barg FK, Lynch MP. Development of a home-based family caregiver cancer education program. The Hospice Journal. 2001;15(4):19-40.

Ramirez A, Addington-Hall J, Richards M. ABC of palliative care: The carers. British Medical Journal. 1998;316:208-211.

Sankar A. Dying at Home: A Family Guide for Caregiving. Baltimore, MD: Johns Hopkins University Press, 1999.

Sachs GA. Sometimes dying still stings. Journal of the American Medical Association. 2000;284(19):2423.

Sarnoff Schiff H. How Did I Become My Parent's Parent? New York, NY: Penguin Putnam, Inc., 1997.

Sokolovsky J. (ed.). The Cultural Context of Aging: Worldwide Perspectives, 2^nd edition. Westport, CT: Greenwood Press, 1997.

The Pfizer Journal. A profile of caregiving in America. 1997, 1(3).

Van Staa AL, Visser A, van der Zouwe N. Caring for caregivers: Experiences and evaluation of interventions for a palliative care team. Patient Education and Counseling. 2000;41(1):93-105.

White TM, Townsend AL, Stephens MA. Comparisons of African American and White women in the parent care role. Gerontologist. 2000;40(6):718-728.

For further reading on Alzheimer’s Disease, please visit the Read More 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.