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TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY


Table of Contents

The President's Council on Bioethics
Washington, D.C.
September 2005
www.bioethics.gov

Thematic Bibliography

Readers newly interested in this subject area may find the items noted with asterisks most useful.

Advance Directives / Legal Instruments

Books and Articles

Alexander, G. "Durable Power of Attorney as a Substitute for Conservatorship."4 Psychology, Public Policy, and Law 653, September 1998.

American Psychological Association, Inc. "Optimal Use of Orders Not to Intervene and Advance Directives." 4 Psychology, Public Policy, and Law 668, September 1998.

Boxx, K. "The Durable Power of Attorney's Place in the Family of Fiduciary Relationships." 36 Georgia Law Review 1, Fall 2001.

Brett, A. "Limitations of Listing Specific Medical Interventions in Advance Directives." Journal of the American Medical Association 255(6): 825-828, August 14, 1991.

Cantor, N. Making Medical Decisions for the Profoundly Mentally Disabled. Boston, MA: MIT Press, 2005.

Cantor, N. "Making Advance Directives Meaningful." 4 Psychology, Public Policy, and Law 629, September 1998.

Cohen, I. Glenn. "Negotiating Death: ADR and End-of-Life Decision Making." 9 Harvard Negotiation Law Review 253, Spring 2004.

Coppola, K., et al. "Accuracy of Primary Care and Hospital-based Physicians' Predictions of Elderly Outpatients Treatment Preferences With and Without Advance Directives." Archives of Internal Medicine 161: 431-440, 2001.

Culver, C. "Advance Directives." 4 Psychology, Public Policy, and Law 676, September 1998.

Danis, M. "A Prospective Study of Advance Directives for Life-Sustaining Care." New England Journal of Medicine 324(13): 882-888, 1991.

Degenholtz, H., et al. "Brief Communication: The Relationship Between Having a Living Will and Dying in Place." Annals of Internal Medicine 141: 113-117, 2004.

Ditto, P., et al. "Advance Directives as Acts of Communication: A Randomized Controlled Trial." Archives of Internal Medicine 161: 421-430, 2001.

Dresser, R. "Dworkin on Dementia: Elegant Theory, Questionable Policy." Hastings Center Report 25(6): 32-38, November-December 1995.

Dresser, R. "Missing Persons: Legal Perceptions of Incompetent Patients." 46 Rutgers Law Review 609, Winter 1994.

Dresser, R. "Precommitment: A Misguided Strategy for Securing Death with Dignity." 81 Texas Law Review 1823, June 2003.

Dresser, R. "Schiavo: A Hard Case Makes Questionable Law." Hastings Center Report 34(3): 8-9, May-June 2004.

Dresser, R. "The Conscious Incompetent Patient." Hastings Center Report 32(3): 9-10, May-June 2002.

Eakes, M., et al. "Planning Lessons Learned from End-of-Life Disputes." 17 National Academy of Elder Law Attorneys Quarterly 21, Summer 2004.

Eiser, A. and Weiss, M. D. "The Underachieving Advance Directive: Recommendations for Increasing Advance Directive Completion." American Journal of Bioethics 1: W10, 2001.

Emanuel, L., et al. "Advance Directives for Medical Care-A Case for Greater Use." New England Journal of Medicine 324(13): 889-895, March 28, 1991.

Fagerlin, A. and Schneider, C. "Enough: The Failure of the Living Will." Hastings Center Report 34(2): 30-42, March-April 2004.

Gallagher, E. "Advance Directives for Psychiatric Care: A Theoretical and Practical Overview for Legal Professionals." 4 Psychology, Public Policy, and Law 746, September 1998.

Garas, N. and Pantilat, S. "Chapter 49: Advance Planning for End-of-Life Care." Making Health Care Safer: A Critical Analysis of Patient Safety Practices. AHRQ Evidence Report No. 43. July 20, 2001. http://www.ncbi.nlm.nih.gov/books/ bv.fcgi?rid=hstat1.section.62397 (accessed August 24, 2005).

Goodman, M., et al. "Effect of Advance Directives on the Management of Elderly Critically Ill Patients." Critical Care Medicine 26: 701-704, 1998.

Hamann, A. "Family Surrogate Laws: A Necessary Supplement to Living Wills and Durable Power of Attorney." 38 Villanova Law Review 103, 1993.

Hammes, B. and Rooney, B. L. "Death and End-of-Life Planning in One Midwestern Community." Archives of Internal Medicine 158: 383-390, 1998.

Hawkins, N., et al. "Micromanaging Death: Process Preferences, Values, and Goals in End-of-Life Medical Decision-Making." Gerontologist 45: 107-117, 2005.

Holley, J., et al. "Factors Influencing Dialysis Patients' Completion of Advance Directives." American Journal of Kidney Diseases 30: 356-260, 1997.

Jeffreys, J. "Advance Directives: Are They Worth the Paper They're Written On?" 27 Colorado Lawyer 125, June 1998.

Karnath, B., and Vaiani, C. "When a Family Member Changes Their Mind Regarding the DNR Order: The Importance of Documentation." Ethics & Medicine: An International Journal of Bioethics 20(2): 31-34, Summer 2004.

Lieberson, A. Advance Medical Directives. Deerfield, IL: Thomson Legal Publishing, 1992.

Longnecker, R. "Health Care Proxies, Living Wills, and Durable Power of Attorney." Proceedings from American Bar Association Continuing Legal Education. American Law Institute, September 12, 1991.

Lynn, J. "Why I Don't Have a Living Will." Law, Medicine, & Health Care 19: 101-104, 1991.

Meisel, A. and Cerminara, K. The Right to Die: The Law of End-of-Life Decisionmaking. 3rd ed. New York: Aspen Publishers, 2004 (2005 Supplement).

Morrison, R., et al. "The Inaccessibility of Advance Directives on Transfer from Ambulatory to Acute Care Settings." Journal of the American Medical Association 274: 501-503, 1995.

Schaefer, K., et al. "The Advance Directive: An Expression of Autonomy, But Also of Care." Ethics & Medicine: An International Journal of Bioethics 18(1): 15-19, Spring 2002.

Sehgal, A. "How Strictly Do Dialysis Patients Want Their Advance Directives Followed?" Journal of the American Medical Association 267(1): 59-63, 1992.

Shapiro, M., et al. Bioethics & Law: Cases, Materials and Problems. 2nd ed. Eagan, MN: West Publishing, 2003.

Teno, J. "Advance Directives: Time to Move On." Annals of Internal Medicine 141: 159-160, 2004.

Teno, J. "Do Advance Directives Provide Instructions That Direct Care?" Journal of the American Geriatrics Society 45: 508-512, 1997.

Zimring, S. "Multi-Cultural Issues in Advance Directives." 13 National Academy of Elder Law Attorneys Quarterly 12, Summer 2000.

Zingmond, D., et al. "Regional and Institutional Variation in the Initiation of Early Do-Not-Resuscitate Orders." Archives of Internal Medicine 165(15): 1705-1712, August 8, 2005.


Case Law & Statutes

Rather than attempt to provide a comprehensive list of case law and statues related to advance directives, we reference here only those items reviewed during the writing of this report. We refer legal researchers to the seminal work in this field by Alan Meisel and Kathy L. Cerminara, The Right to Die: The Law of End-of-Life Decisionmaking.

Federal

Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261, 110 S. Ct. 2841 (1990).

Pain Relief Promotion Act of 1999, H.R. 2260, S. 1272 (not enacted), available online at http://thomas.loc.gov/cgi-bin/query/z?c106:S.1272.

Patient Self-Determination Act of 1990, §4206 and §4751 Omnibus Reconciliation Act of 1990, Pub L No. 1010-508 (November 5, 1990).

Ulrich, L. The Patient Self-Determination Act: Meeting the Challenges in Patient Care. Washington, D.C.: Georgetown University Press, 1999.

State

Conservatorship of Wendland, 110 Cal. Rptr. 2d 412 (Cal. 2001).

In re Martin, 538 N.W. 2d 399 (Mich. 1995).

Matter of Conroy, 486 A. 2d 1209 (N. J. 1989).

Matter of Edna M. F., 563 N.W. 2d 485 (Wis. 1997).

Matter of Spring, 405 N.E. 2d 115 (Mass. 1980).

Matter of Quinlan, 355 A. 2d 647 (N. J. 1976).

McKay v. Bergstedt, 801 P. 2d 617 (Nev. 1990).

Superintendent of Belchertown State School v. Saikewicz, 370 N.E. 2d 417 (Mass. 1977).

Model Codes and Directives

Alexander, G. "Time for a New Law on Health Care Advance Directives." Symposium: Legal Issues Relating to the Elderly. 42 Hastings Law Journal 755, March 1991.

Bok, S. "Personal Directions for Care at the End of Life." New England Journal of Medicine 295(7): 367-369, August 12, 1976.

Emanuel, L. and Emanuel, E. "The Medical Directive: A New Comprehensive Advance Care Document." Journal of the American Medical Association 261(22): 3288-3293, June 9, 1989.

Kutner, L. "Due Process of Euthanasia: The Living Will, a Proposal." 44 Indiana Law Journal 539, 1969.

Martin, D., et al. "A New Model of Advance Care Planning." Archives of Internal Medicine 159: 86-92, 1999.

McLean, E. "Living Will Statutes in Light of Cruzan v. Director, Missouri Department of Health: Ensuring that Patient's Wishes Will Prevail." 40 Emory Law Journal 1305, Fall 1991.

Modell, W. "A 'Will' to Live." New England Journal of Medicine 290(16): 907-908, April 18, 1974.

Stavis, P. "The Nexum: A Modest Proposal for Self-Guardianship by Contract: A System of Advance Directives and Surrogate Committees-At-Large for the Mentally Ill." 16 Journal of Contemporary Health Law and Policy 1, Winter 1999.

Uniform Health-Care Decisions Act (1993).

Uniform Rights of the Terminally Ill Act (1989).


Reports

American Bar Association Commission on Law & Aging. Health Care Power of Attorney and Combined Advance Directive Legislation. Chicago, IL: ABA, September 2004.

American Bar Association Commission on Law & Aging. Health Care Surrogate Decision Making Legislation. Chicago, IL: ABA, June 2001.

American Bar Association Commission on Law & Aging. Surrogate Consent in the Absence of an Advance Directive. Chicago, IL: ABA, July 2004.

American Bar Association Section of Real Property, Probate, and Trust Law. The Uniform Health-Care Decisions Act and its Progress in the States. Chicago, IL: ABA, May/June 2001.

Last Acts. Means to a Better End: A Report on Dying in America Today. Washington, D.C.: Last Acts, 2002.     

*New York State Task Force on Life and the Law. When Others Must Choose: Deciding for Patients Without Capacity. New York State Task Force on Life and the Law. December 1992.

Sample Forms

Aging with Dignity. "Five Wishes: The Easy Way to Help You and Your Loved Ones Plan for the Unexpected." Tallahassee, FL: Aging With Dignity, 2001. (www.agingwithdignity.org)

Legal Counsel of the Elderly, Inc. "Planning for Incapacity: A Self-Help Guide-Advance Directive Forms for Connecticut." 12th Annual Elder Law Institute Representing the Elderly Client of Modest Means, June 2000. Practising Law Institute, 2000. (This state provided as one example of many.)

Schuster, M. "Planning for Incapacity: A Self-Help Guide-Advance Directive for New York." Proceedings of 11th Annual Elder Law Institute: Representing the Elderly Client of Modest Means, July 1999. Practising Law Institute, 1999. (This state provided as one example of many.)

Alzheimer's Disease

Costs

Johnson, N., et al. "The Epidemic of Alzheimer's Disease. How Can We Manage the Costs?" Pharmacoeconomics 18(3): 215-223, 2000.

Martikainen, J., et al. "Potential Cost-Effectiveness of a Family-Based Program in Mild Alzheimer's Disease Patients." The European Journal of Health Economics 5(2): 136-142, 2004.

Prigerson, H. "Costs to Society of Family Caregiving for Patients with End-Stage Alzheimer's Disease." New England Journal of Medicine 349(20): 1891-1892, 2003.

Riggs, J. A. "The Health and Long-Term Care Policy Challenges of Alzheimer's Disease." Aging & Mental Health 5(Supp. 1): S138-S145, 2001.

Taylor, D. H., Jr. "Alzheimer's Disease and the Family Caregiver: The Cost and Who Pays?" North Carolina Medical Journal 66(1): 16-23, 2005.

Diagnosis

Aguzzi, A. and Haass, C. "Games Played by Rogue Proteins in Prion Disorders and Alzheimer's Disease." Science 302(5646): 814-818, October 31, 2003.

Arnaiz, E., and Almkvist, O. "Neuropsychological Features of Mild Cognitive Impairment and Preclinical Alzheimer's Disease." Acta Neurologica Scandinavica. Supplementum 107(179): 34-41, 2003.

Bennett, D., et al. "Mild Cognitive Impairment Is Related to Alzheimer Disease Pathology and Cerebral Infarctions." Neurology 64(5): 834-841, March 8, 2005.

Clark, C., et al. "Alzheimer's Symptoms May Strike Latinos Years Before White Americans." Presented at 9th International Conference on Alzheimer's Disease and Related Disorders of the Alzheimer's Association. July 21, 2004.

DeKosky, S. T. "Epidemiology and Pathophysiology of Alzheimer's Disease." Clinical Cornerstone 3(4): 15-26, 2001.

D'Esposito, M., and Weksler, M. "Brain Aging and Memory: New Findings Help Differentiate Forgetfulness and Dementia." Geriatrics 55(6): 55-58, 61-62, 2000.

Fujii, D., et al. "Dementia Screening: Can a Second Administration Reduce the Number of False Positives?" American Journal of Geriatric Psychiatry 11(4): 462-465, 2003.

Graff-Radford, N., et al. "Plasma A² Levels as a Premorbid Biomarker for Cognitive Decline, Mild Cognitive Impairment (MCI) and Alzheimer Disease (AD)." Presented at First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

Gualtieri, C. T. "Dementia Screening Using Computerized Tests." Journal of Insurance Medicine 36(3): 213-227, 2004.

Higuchi, M., et al. "19F and 1H MRI Detection of Amyloid ² Plaques in Vivo." Nature Neuroscience 8: 527-533, 2005.

Kukull, W., et al. "Dementia and Alzheimer Disease Incidence: A Prospective Cohort Study." Archives of Neurology 59: 1737-1746, 2002.

Marx, J. "Play and Exercise Protect Mouse Brain from Amyloid Buildup." Science 307(5715): 1547-1547, March 11, 2005.

Mathis, C. A., et al. "Imaging Technology for Neurodegenerative Diseases." Archives of Neurology 62: 196-200, 2005.

McKhann, G., et al. "Clinical Diagnosis of Alzheimer's Disease." Neurology 34(7): 939-944, 1984.

Mosconi, L., et al. "Hippocampal Metabolic Reductions in Mild Cognitive Impairment and Alzheimer's Disease: Automated FDG-PET Image Analysis." Presented at First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

Neergaard, L. "Scientists Find Early Signs of Alzheimer's." June 20, 2005. http://www.wtopnews.com (accessed June 20, 2005).

Pilcher, H. "Alzheimer's Disease Cause Identified?" January 8, 2004. http://www.nature.com (accessed January 12, 2004).

Selkoe, D. "Alzheimer's Disease is a Synaptic Failure." Science 298(5594): 789-791, October 25, 2002.

Small, G. W., et al. "Diagnosis and Treatment of Alzheimer's Disease and Related Disorders: Consensus Statement of the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society." Journal of the American Medical Association 278: 1363-9271, 1997.

Tierney, M. C., et al. "The NINCDS-ADRDA Work Group Criteria for the Clinical Diagnosis of Probable Alzheimer's Disease." Neurology 38(3): 359-364, 1988.

Symptoms / Trajectory (including Personal Accounts)

Beard, R. L. "In Their Voices: Identity Preservation and Experiences of Alzheimer's Disease." Journal of Aging Studies 18(4): 415-428, 2004.

Campbell, C. "The Human Face of Alzheimer's." New Atlantis 6: 3-17, Summer 2004.

Davis, R. My Journey Into Alzheimer's Disease. Carol Stream, IL: Tyndale House Publishers, 1989.

DeBaggio, T. Losing My Mind: An Intimate Look at Life with Alzheimer's. New York: Free Press, 2003.

Dyer, J. In Tangled Wood: An Alzheimer's Journey. Dallas, TX: Southern Methodist University Press, 1996.

Espiritu, D. A. V., et al. "Depression, Cognitive Impairment and Function in Alzheimer's Disease." International Journal of Geriatric Psychiatry 16(11): 1098-1103, 2001.

Feinberg, L. F. and Whitlatch, C. "Are Persons with Cognitive Impairment Able to State Consistent Choices?" Gerontologist 41(3): 374-382, 2001.

Gareri, P., et al. "Neuropharmacology of Depression in Aging and Age-Related Diseases." Ageing Research Reviews 1(1): 113-134, 2002.

Gillick, M. Tangled Minds: Understanding Alzheimer's Disease and Other Dementias. New York: Dutton Books, 1998.

Henderson, C., et al. Partial View: An Alzheimer's Journal. Dallas, TX: Southern Methodist University Press, 1998.

*Hoffman, D. "Complaints of a Dutiful Daughter." New York: Women Make Movies, 1996 (video).

Hurley, A. C., and Volicer, L. "Alzheimer Disease: 'It's Okay, Mama, If You Want to Go, It's Okay.'" Journal of the American Medical Association 288(18): 2324-2331, 2002.

James, I. A. and Sabin, N. "Safety Seeking Behaviours: Conceptualizing a Person's Reaction to the Experience of Cognitive Confusion." Dementia 1(1): 37-45, 2002.

Keri, S., et al. "Categories, Prototypes and Memory Systems in Alzheimer's Disease." Trends in Cognitive Sciences 6(3): 132-136, 2002.

Lockwood, D. "Alzheimer's Seen in the Living Brain." March 14, 2005. http://www.nature.com (accessed March 15, 2005).

Menne, H. L, et al. "'Trying to Continue to Do as Much as They Can Do': Theoretical Insights Regarding Continuity and Meaning Making in the Face of Dementia." Dementia 1(3): 367-382, 2002.

Nagaratnam, N., et al. "Some Problematic Behaviors in Alzheimer's Dementia." Archives of Gerontology and Geriatrics 32(1): 57-65, 2001.

Nagourney, E. "Aging: Alzheimer's on the Road." New York Times. September 14, 2004, p. F7.

Pearce, A., et al. "Managing Sense of Self: Coping in the Early Stages of Alzheimer's Disease." Dementia 1(2): 173-192, 2002.

Rosen, H. J., et al. "Neuropsychological and Functional Measures of Severity in Alzheimer Disease, Fronto-temporal Dementia, and Semantic Dementia." Alzheimer Disease and Associated Disorders 18(4): 202-207, 2004.

Sabat, S. The Experience of Alzheimer's Disease: Life Through a Tangled Veil. Oxford: Blackwell Publishing, 2001.

*Shenk, D. The Forgetting, Alzheimer's: Portrait of an Epidemic. New York: Random House, 2001.

Snyder, L. Speaking Our Minds: Personal Reflections from Individuals with Alzheimer's. New York: WH Freeman & Co., 1999.

Sterin, G. J. "Essay on a Word: A Lived Experience of Alzheimer's Disease." Dementia 1(1): 7-10, 2002.

Zlokovic, B. V. "Neurovascular Mechanisms of Alzheimer's Neurodegeneration." Trends in Neurosciences 28(4): 202-208, 2005.

Treatment & Research

"Alzheimer's Vaccine Shows Promise." July 21, 2004. http://www.cbsnews.com (accessed July 28, 2004).

Bedard, M., et al. "Health Impact on Caregivers of Providing Informal Care to a Cognitively Impaired Older Adult: Rural Versus Urban Settings." Canadian Journal of Rural Medicine 9(1): 15-23, 2004.

Belle, S. H., et al. "Use of Cognitive Enhancement Medication in Persons with Alzheimer Disease Who Have a Family Caregiver: Results from the Resources for Enhancing Alzheimer's Caregiver Health (Reach) Project." American Journal of Geriatric Psychiatry 12(3): 250-257, 2004.

Borenstein, A., et al. "Consumption of Fruit and Vegetable Juices Predicts a Reduced Risk of Alzheimer's Disease: The Kame Project." Presented at the First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

Brauner, D. J., et al. "Treating Nondementia Illnesses in Patients with Dementia." Journal of the American Medical Association 283(24): 3230-3235, 2000.

Bryden, C. "A Person-Centred Approach to Counselling, Psychotherapy and Rehabilitation of People Diagnosed with Dementia in the Early Stages." Dementia 1(2): 141-156, 2002.

Craft, S., et al. "Therapeutic Effects of Intranasal Insulin in Patients with AD and Amnestic MCI." Presented at the First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

De La Monte, S. and Wands, J. "Review of Insulin and Insulin-like Growth Factor Expression, Signaling, and Malfunction in the Central Nervous System: Relevance to Alzheimer's Disease." Journal of Alzheimer's Disease 7(1): 45-61, March 3, 2005.

Durga, J., et al. "Effect of 3-Year Folic Acid Supplementation on Cognitive Function in Older Adults: A Randomized, Double Blind, Controlled Trial." Presented at First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

"Estrogen Replacement Linked to Dementia." Nature Medicine 10: 765, 2004.

Garfield, F. B., et al. "Assessment of Health Economics in Alzheimer's Disease (Ahead): Treatment with Galantamine in Sweden." Pharmacoeconomics 20(9): 629-637, 2002.

Gatz, M., et al. "Potentially Modifiable Risk Factors for Dementia: Evidence from Identical Twins." Presented at First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

Gaugler, J. E., et al. "Adult Day Service Use and Reductions in Caregiving Hours: Effects on Stress and Psychological Well-Being for Dementia Caregivers." International Journal of Geriatric Psychiatry 18(1): 55-62, 2003.

Haan, M. and Wallace, R. "Can Dementia Be Prevented? Brain Aging in a Population-Based Context." Annual Review of Public Health 25: 1-24, 2004.

Hara, H., et al. "Development of a Safe Oral Aß Vaccine Using Recombinant Adeno-Associated Virus Vector for Alzheimer's Disease." Journal of Alzheimer's Disease 6(5): 483-488, October 2004.

Hurley, A., et al. "Effect of Fever-Management Strategy on the Progression of Dementia of the Alzheimer Type." Alzheimer Disease and Associated Disorders 10(1): 5-10, 1996.

Margallo-Lana, M., et al. "Prevalence and Pharmacological Management of Behavioural and Psychological Symptoms Amongst Dementia Sufferers Living in Care Environments." International Journal of Geriatric Psychiatry 16(1): 39-44, 2001.

Marx, J. "Prevent Alzheimer's: A Lifelong Commitment?" Science 309: 864-866, 2005.

Maslow, K., et al. "Guidelines and Care Management Issues for People with Alzheimer's Disease and Other Dementias." Disease Management & Health Outcomes 10(11): 693-706, 2002.

Monsonego, A., and Weiner, H. "Immunotherapeutic Approaches to Alzheimer's Disease." Science 302(5646): 834-838, October 31, 2003.

Petersen, A. "Brain Imaging Study Is Launched for Alzheimer's." Wall Street Journal. October 14, 2004, p. D2.

Petersen, A. "Longer Use of Alzheimer's Drugs Gets Boost." Wall Street Journal. September 7, 2004, p. D4.

Ritter, J. "Rush Uses Gene Therapy in Alzheimer's Battle." Chicago Sun-Times. September 22, 2004, p. 8.

Sager, M., et al. "Wisconsin Registry for Alzheimer's Prevention: Prospective Cohort Study of Preclinical AD." Presented at First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

Santaguida, P. S., et al. Pharmacological Treatment of Dementia Summary, Evidence Report / Technology Assessment No. 97. AHRQ Publication No. 04-E018-1. Rockville, MD: Agency for Healthcare Research and Quality. April 2004.

Selkoe, D., "Alzheimer Disease: Mechanistic Understanding Predicts Novel Therapies." Annals of Internal Medicine 140(8): 1-12, 2004.

Sheiman, S. L. and Pomerantz, J. "Tube Feeding in Dementia: A Controversial Practice." Journal of Nutrition, Health & Aging 2(3): 184-189, 1998.

Sink, K. M., et al. "Pharmacological Treatment of Neuropsychiatric Symptoms of Dementia: A Review of the Evidence." Journal of the American Medical Association 293(5): 596-608, 2005.

Sloane, P. D., et al. "The Public Health Impact of Alzheimer's Disease, 2000-2050: Potential Implication of Treatment Advances." Annual Review of Public Health 23: 213-231, 2002.

Stern, Y. "Lifestyle and Other Risk Factors: Cognitive Reserve."Presented at First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

VanScoy, H. "Viable Alzheimer's Treatments on the Horizon." January 7, 2005. http://health.myway.com/art/id/523301.html (accessed January 18, 2005).

Vedantam, S. "Study Looks Into Roots of Alzheimer's: Brain Area for Daydreaming Is Affected." Washington Post. August 24, 2005, p. A9.

Weiss, R. "A Tale of Politics: PET Scans' Change in Medicare Coverage." Washington Post. October 14, 2004, p. A1.

Wilcock, G., et al. "A Placebo-controlled, Double-blind Trial of the Selective Aß-42 Lowering Agent, Flurizan (MPC-7869, (R)-flurbiprofen) in Patients with Mild to Moderate Alzheimer's Disease." Presented at First International Conference on the Prevention of Dementia of the Alzheimer's Association. June 18-21, 2005.

Zlokovic, B. V. "Neurovascular Mechanisms of Alzheimer's Neurodegeneration." Trends in Neurosciences 28(4): 202-208, 2005.

Caregiving

Burdens & Benefits

Acton, G. and Kang, J. "Interventions to Reduce the Burden of Caregiving for an Adult with Dementia: A Meta-Analysis." Research in Nursing Health 24: 349-360, 2001.

AARP. In the Middle: A Report on Multicultural Boomers Coping with Family and Aging Issues. Washington, D.C.: AARP, 2001.

Bedard, M., et al. "Understanding Burden Differences Between Men and Women Caregivers: The Contribution of Care Recipient Problem Behaviors." International Psychogeriatrics 17: 99-118, 2005.

Bell, C. M., et al. "The Association between Caregiver Burden and Caregiver Health-Related Quality of Life in Alzheimer Disease." Alzheimer Disease & Associated Disorders 15(3): 129-136, 2001.

Black, W. and Almeida, O. "A Systematic Review of the Association Between the Behavioral and Psychological Symptoms of Dementia and Burden of Care." International Psychogeriatrics 16: 295-315, 2004.

Boerner, K., et al. "Positive Aspects of Caregiving and Adaptation to Bereavement." Psychology and Aging 19(4): 668-675, 2004.

Bourgeois, M. S., et al. "Interventions for Caregivers of Patients with Alzheimer's Disease: A Review and Analysis of Content, Process, and Outcomes." International Journal of Aging and Human Development 43(1): 35-92, 1996.

Brodaty, H., et al. "Meta-Analysis of Psychosocial Interventions for Caregivers of People with Dementia." Journal of the American Geriatrics Society 51(5): 657-664, 2003.

Carter, R. and Golant, S. K. Helping Yourself Help Others: A Book for Caregivers. New York: Times Books, 1996.

Caron, C. D. and Bowers, B. "Deciding Whether to Continue, Share, or Relinquish Caregiving: Caregiver Views." Qualitative Health Research 13(9): 1252-1271, 2003.

Chumbler, N., et al. "Gender, Kinship, and Caregiver Burden: The Case of Community-Dwelling Memory Impaired Seniors." International Journal of Geriatric Psychiatry 18(8): 722-732, 2003.

Ducharme, F., et al. "'Taking Care of Myself': Efficacy of an Intervention Programme for Caregivers of a Relative with Dementia Living in a Long-Term Care Setting." Dementia 4(1): 23-47, 2005.

Dunham, C. C. and Dietz, B. ".If I'm Not Allowed to Put My Family First': Challenges Experienced by Women Who Are Caregiving for Family Members with Dementia." Journal of Women and Aging 15(1): 55-69, 2003.

Emanuel, E., et al. "Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers." Annals of Internal Medicine 132(6): 451-459, March 21, 2000.

Fredman, L., et al. "Pragmatic and Internal Validity Issues in Sampling in Caregiver Studies: A Comparison of Population-Based, Registry-Based, and Ancillary Studies." Journal of Aging and Health 16(2): 175-203, 2004.

Gallicchio, L., et al. "Gender Differences in Burden and Depression Among Informal Caregiver of Demented Elders in the Community." International Journal of Geriatric Psychiatry 17(2): 154-163, 2002.

Gilley, D. W., et al. "Caregiver Psychological Adjustment and Institutionalization of Persons with Alzheimer's Disease." Journal of Aging and Health 17(2): 172-189, 2005.

Gilmour, H., et al. "Living Alone with Dementia: A Case Study Approach to Understanding Risk." Dementia 2(3): 403-420, 2003.

Gross, J. "Alzheimer's in the Living Room: How One Family Rallies to Cope." New York Times. September 16, 2004. Letters to the Editor, September 19, 2004, p. A1.

Gundersen, M. "Being a Burden: Reflections on Refusing Medical Care." Hastings Center Report 34(5): 37-43, September-October 2004.

Gwyther, L. "Family Issues in Dementia: Finding a New Normal." Neurological Clinics 18: 993-1010, 2000.

Haley, L., et al. "Well-Being, Appraisal, and Coping in African-American and Caucasian Dementia Caregivers: Findings from the REACH Study." Aging & Mental Health 8(4): 316-329, 2004.

Hellstrom, I., et al. "'We Do Things Together': A Case Study of 'Couplehood' in Dementia." Dementia 4(1): 7-22, 2005.

Heru, A. "Family Functioning in the Caregivers of Patients with Dementia." International Journal of Geriatric Psychiatry 19(6): 533-577, 2004.

Ho, A., et al. A Look at Working-Age Caregivers' Roles, Health Concerns, and Need for Support. Commonwealth Fund. 2005. http://www.cmwf.org/ (accessed August 25, 2005).

Janevic, M. and Connell, C. "Racial, Ethnic, and Cultural Differences in the Dementia Caregiving Experience: Recent Findings." Geronotologist 41(4): 334-347, 2001.

Karlawish, J. H. T., et al. "Why Would Caregivers Not Want to Treat Their Relative's Alzheimer's Disease?" Journal of the American Geriatrics Society 51(10): 1391-1397, 2003.

Kiecolt-Glaser, J., et al. "Chronic Stress Alters The Immune Response To Influenza Virus Vaccine In Older Adults." Proceedings of the National Academy of Sciences of the United States of America 93: 3043-3047, 1996.

Lawler, P. "The Caregiving Society." New Atlantis 8: 3-13, Spring 2005.

Ledoux, N. "Connecting with the Cognitively Impaired: Dementia and Alzheimer's Disease." Caring 22(8): 30-32; 33-35, 2003.

Levine, C. "One Loss May Hide Another." Hastings Center Report 34(6): 17-19, November-December 2004.

Mittelman, M. S., et al. "Sustained Benefit of Supportive Intervention for Depressive Symptoms in Caregivers of Patients with Alzheimer's Disease." American Journal of Psychiatry 161(5): 850-856, 2004.

Navaie-Waliser, M., et al. "When the Caregiver Needs Care: The Plight of Vulnerable Caregivers." American Journal of Public Health 92(3): 409-413, 2002.

Peacock, S. C. and Forbes, D. "Interventions for Caregivers of Persons with Dementia: A Systematic Review." Canadian Journal of Nursing Research 35(4): 88-107, 2003.

Perry, J. and O'Connor, D. "Preserving Personhood: (Re)Membering the Spouse with Dementia." Family Relations 51(1): 55-62, 2002.

Phillips, L. R., et al. "Abuse of Female Caregivers by Care Recipients: Another Form of Elder Abuse." Journal of Elder Abuse & Neglect 12(3-4): 123-143, 2000.

Phinney A. and Chesla, C. "The Lived Body in Dementia." Journal of Aging Studies 17: 283-299, 2003.

Raschick, M. and Ingersoll-Dayton, B. "The Costs and Rewards of Caregiving among Aging Spouses and Adult Children." Family Relations 53(3): 317-325, 2004.

Sands, L., et al. "What Explains Differences between Dementia Patients' and Their Caregivers' Ratings of Patients' Quality of Life?" American Journal of Geriatric Psychiatry 12: 272-280, 2004.

Savundranayagam, M., et al. "Investigating the Effects of Communication Problems on Caregiver Burden." Journals of Gerontology Series B-Psychological Sciences and Social Sciences 60: S48-S55, 2005.

Schulz, R. and Beach, S. "Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study." Journal of the American Medical Association 282: 2215-2219, 1999.

Schulz, R. and Martire, L. "Family Caregiving of Persons with Dementia: Prevalence, Health Effects, and Support Strategies." American Journal of Geriatric Psychiatry 12: 240-249, 2004.

Snyder L. "Satisfactions and Challenges in Spiritual Faith and Practice for Persons With Dementia." Dementia2(3): 299-313, 2003.

Szinovacz, M. "Caring for a Demented Relative at Home: Effects on Parent-Adolescent Relationships and Family Dynamics." Journal of Aging Studies 17: 445-472, 2003.

Ward, R., et al. "A Kiss Is Still a Kiss?: The Construction of Sexuality in Dementia Care." Dementia 4(1): 49-72, 2005.

By Family Members

Alzheimer's Association and National Alliance for Caregiving. Families Care: Alzheimer's Caregiving in the United States 2004. http://www.alz.org.Resources/ factsheets/caregiverreport.pdf.

Acton, G. J. and Winter, M. "Interventions for Family Members Caring for an Elder with Dementia." Annual Review of Nursing Research 20: 149-179, 2002.

Annerstedt, L., et al. "Family Caregiving in Dementia-an Analysis of the Caregiver's Burden and the 'Breaking-Point' When Home Care Becomes Inadequate." Scandinavian Journal of Public Health 28(1): 23-31, 2000.

Barber, C. E. and Lyness, K. "Ethical Issues in Family Care of Older Persons with Dementia: Implications for Family Therapists." Home Health Care Services Quarterly 20(3): 1-26, 2001.

Brodaty, H. and Green, A. "Defining the Role of the Caregiver in Alzheimer's Disease Treatment." Drugs & Aging 19(12): 891-898, 2002.

Burgener, S. and Twigg, P. "Relationships among Caregiver Factors and Quality of Life in Care Recipients with Irreversible Dementia." Alzheimer Disease & Associated Disorders 16(2): 88-102, 2002.

"Caregiving: Strategies for Caring for Someone with Alzheimer's Disease. Learning How to Manage Alzheimer's-Related Behaviors Can Ease the Burden for Both the Person with Dementia and the Family." Harvard Women's Health Watch 11(4): 3-5, 2003.

Cloutterbuck, J. and Mahoney, D. "African American Dementia Caregivers: The Duality of Respect." Dementia 2(2): 221-243, 2003.

Coon, D. W., et al. "Well-Being, Appraisal, and Coping in Latina and Caucasian Female Dementia Caregivers: Findings from the Reach Study." Aging & Mental Health 8(4): 330-345, 2004.

Farran, C., et al. "Spirituality in Multicultural Caregivers of Persons with Dementia." Dementia 2: 353-377, 2003.

Gottlieb, B. H. and Wolfe, J. "Coping with Family Caregiving to Persons with Dementia: A Critical Review." Aging & Mental Health 6(4): 325-342, 2002.

Hagen, B. "Nursing Home Placement: Factors Affecting Caregivers' Decisions to Place Family Members with Dementia." Journal of Gerontological Nursing 27(2): 44-53, 2001.

Haight, B. K., et al. "Life Review: Treating the Dyadic Family Unit with Dementia." Clinical Psychology & Psychotherapy 10(3): 165-174, 2003.

Hepburn, K. W., et al. "The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Family Caregiver Training Program." Gerontologist 43(6): 908-915, 2003.

Kneebone, I. and Martin, P. "Coping and Caregivers of People with Dementia." British Journal of Health Psychology 8: 1-17, 2003.

Levesque, L., et al. "Is There a Difference between Family Caregiving of Institutionalized Elders with or without Dementia?" Western Journal of Nursing Research 21(4): 472-497, 1999.

Levine, C., ed. Always on Call: When Illness Turns Families into Caregivers. Nashville, TN: Vanderbilt University Press, 2004.

Lo, B., et al. "Family Decision-making on Trial: Who Decides for Incompetent Patients?" New England Journal of Medicine 322: 1228-1232, 1990.

*Mace, N. and Rabins, P. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. New York: Warner Books, 1999.

Mausbach, B., et al. "Ethnicity and Time to Institutionalization of Dementia Patients: A Comparison of Latina and Caucasian Female Family Caregivers." Journal of the American Geriatrics Society 52: 1077-1084, 2004.

Navaie-Waliser, M., et al. "Informal Caregiving-Differential Experiences by Gender." Medical Care 40(12): 1249-1259, 2002.

Nelson, J. Alzheimer's: Hard Questions for Families. New York: Doubleday, 1996.

Nightingale, M. "Religion, Spirituality, and Ethnicity: What is Means for Caregivers of Persons with Alzheimer's Disease and Related Disorders." Dementia 2: 379-391, 2003.

Nolan, M., et al. "Working with Family Carers of People with Dementia: 'Negotiated' Coping as an Essential Outcome." Dementia 1(1): 75-93, 2002.

Schulz, R. Handbook on Dementia Caregiving: Evidence-Based Interventions for Family Caregivers. New York: Springer Publishing Co., 2000.

Shakespeare, C. and Clare, L. "Negotiating the Impact of Forgetting: Dimensions of Resistance in Task-Oriented Conversations between People with Early-Stage Dementia and Their Partners." Dementia 3(2): 211-232, 2004.

Winakur, J. "What Are We Going to Do With Dad?" Washington Post. August 7, 2005, p. B1.


By Institutions

Bailey, F., et al. "Improving Processes of Hospital Care During the Last Hours of Life." Archives of Internal Medicine 165(15): 1722-1727, August 8, 2005.

Carey, B. "In the Hospital, a Degrading Shift From Person to Patient." New York Times. August 16, 2005, p. A1.

Cohen, C. A., et al. "Dementia Caregiving: The Role of the Primary Care Physician." Canadian Journal of Neurological Sciences 28: S72-S76, 2001.

Connell, C. M., et al. "Attitudes toward the Diagnosis and Disclosure of Dementia among Family Caregivers and Primary Care Physicians." Gerontologist 44(4): 500-507, 2004.

Cummings, J. L., et al. "Guidelines for Managing Alzheimer's Disease: Part II. Treatment." American Family Physician 65(12): 2525-2534, 2002.

Dembner, A. "Ageism Said To Erode Care Given To Elders." Boston Globe. March 7, 2005 p. A1.

Fallis, D. "In Va.'s Assisted Living Homes, Violent Preyed on the Vulnerable." Washington Post. May 24, 2004, p. A1.

Hamilton, W. "The New Nursing Home, Emphasis on Home." New York Times. April 23, 2005, p. A1.

Kapp, M. "Legal Anxieties and End-of-Life Care in Nursing Homes." 19 Issues in Law and Medicine 111, Fall 2003.

Karp, N. and Wood, E. "Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly." American Bar Association Commission on Law and Aging, July 2003.

Leitsch, S. A., et al. "Medical and Social Adult Day Service Programs-A Comparison of Characteristics, Dementia Clients, and Their Family Caregivers." Research on Aging 23(4): 473-498, 2001.

Lieberman, M. A. and Fisher, L. "The Effects of Nursing Home Placement on Family Caregivers of Patients with Alzheimer's Disease." Gerontologist 41(6): 819-826, 2001.

Long, A. and Slevin, E. "Living with Dementia: Communicating with an Older Person and Her Family." Nursing Ethics 6(1): 23-36, 1999.

Petersen, A. "Negotiating the Terms Of Your Death: Medical Advances Give Patients More Control Over How and When They Die." Wall Street Journal. May 10, 2005, p. D1.

Said, C. "Physician's Personal Touch." San Francisco Chronicle. August 7, 2005, p. E1.

Schulz, R., et al. "Long-term Care Placement of Dementia Patients and Caregiver Health and Well-Being." Journal of the American Medical Association 292(8): 961-967, 2004.

Teno, J., et al. "Family Perspectives on End of Life Care." Journal of the American Medical Association 291(1): 88-93, January 7, 2004.

Tibaldi, V., et al. "A Randomized Controlled Trial of a Home Hospital Intervention for Frail Elderly Demented Patients: Behavioral Disturbances and Caregiver's Stress." Archives of Gerontology and Geriatrics 38: 431-436, 2004.

Wennberg, J., et al. "Use Of Medicare Claims Data To Monitor Provider-Specific Performance Among Patients With Severe Chronic Illness." Health Affairs: The Policy Journal of the Health Sphere. http://www.healthaffairs.org (accessed October 7, 2004).

Hospice

Fine, P. and Jennings, B. "Case Study: CPR in Hospice." Hastings Center Report 33(3): 9-10, May-June 2003.

Haley, W. E., et al. "Family Caregiving in Hospice: Effects on Psychological and Health Functioning among Spousal Caregivers of Hospice Patients with Lung Cancer or Dementia." Hospice Journal 15(4): 1-18, 2001.

Henig, R. "Will We Ever Arrive at the Good Death?" New York Times. August 7, 2005, p. 26.

Jennings, B., et al. Access to Hospice Care: Expanding Boundaries, Overcoming Barriers. Garrison, New York: Hastings Center, 2003.

Ryan, R. "Palliative Care and Terminal Illness." National Catholic Bioethics Quarterly 1(3): 313-320, Autumn 2001.

Caregiving Generally

Bornat, J., ed. Reminiscence Reviewed: Evaluations, Achievements, Perspectives (Rethinking Old Age). Bristol, PA: Open University Press, 1994.

Capossela, C., et al. Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill. New York: Fireside, 2004.

Lawler, P. "Caregiving and the American Individual." Presented at the September 10, 2004 meeting of the President's Council on Bioethics, Washington, D.C., available online at http://www.bioethics.gov.

Lo, B. and Dornbrand, L. "Guiding the Hand That Feeds: Caring For the Demented Elderly." New England Journal of Medicine 311: 402-404, 1984.

*Lynn, J. and Harrold, J. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford University Press, 1999.

*May, W. F. The Patient's Ordeal. Bloomington, IN: Indiana University Press, 1994.

Schulz, R. and Patterson, L. "Caregiving in Geriatric Psychiatry." American Journal of Geriatric Psychiatry 12(3): 234-237, 2004.

Dementia

Cayton, H. "Telling Stories: Choices and Challenges on the Journey of Dementia." Dementia 3: 9-17, 2004.

Farran C., et al. "Alzheimer's Disease Caregiving Information and Skills. Part II: Family Caregiver Issues and Concerns." Research in Nursing and Health 27: 40-51, 2004.

Forbat, L. "Relationship Difficulties in Dementia Care: A Discursive Analysis of Two Women's Accounts." Dementia 2(1): 67-84, 2003.

Hall, G. "Everyday Ethics: Issues in Caring For People with Dementing Illnesses." Presented at the June 24, 2004 meeting of the President's Council on Bioethics, Washington, D.C., available online at http://www.bioethics.gov.

Katsuno T. "Personal Spirituality of Persons with Early-Stage Dementia: Is It Related to Perceived Quality of Life?" Dementia 2: 315-335, 2003.

Ory, M., et al. "Prevalence and Impact of Caregiving: A Detailed Comparison Between Dementia and Non-Dementia Caregivers." Gerontologist 39(2): 177-185, 1999.

*Rabins, P., et al. Practical Dementia Care. 2nd ed. New York: Oxford University Press, forthcoming 2006 (1st ed. 1999).

Radin, L. and Radin, G., eds. What If It's Not Alzheimer's? A Caregiver's Guide to Dementia. Amherst, New York: Prometheus Books, 2003.

Rango, D. "The Nursing Home Resident with Dementia." Annals of Internal Medicine 102(6) 835-841, 1995.

Roeline, H., et al. "Discomfort in Nursing Home Patients With Severe Dementia in Whom Artificial Nutrition and Hydration Is Forgone." Archives of Internal Medicine 165(15): 1737-1742, August 8, 2005.

Sachs, G., et al, "Barriers to Excellent End-of-Life Care for Patients with Dementia." Journal of the American Medical Association 284(19): 2423, 2000.

Scarpinato, N., et al. "Kitty's Dilemma: Making Treatment Decisions When a Patient with Dementia Says She Wants to End Her Life." American Journal of Nursing 100(3): 49-51, March 2000.

Vernooij-Dassen, M. andMoniz-Cook, E. "Editorial: How Can the Quality of Home-Based Interventions Be Improved?" Dementia 4(2): 163-169, 2005.

End of Life

Albinsson, L. and Strang, P. "A Palliative Approach to Existential Issues and Death in End-Stage Dementia Care." Journal of Palliative Care 18(3): 168-174, 2002.

American Bar Association Commission on Law & Aging. End of Life Care Legislation Summary. Chicago, IL: ABA, June 2001.

American Bar Association Commission on Law & Aging. End of Life Legal Trends. Chicago, IL: ABA, April 2000.

Baird, R. and Rosenbaum, S., eds. Caring for the Dying: Critical Issues at the Edge of Life. Amherst, New York: Prometheus Books, 2003.

Blank, R., and Merrick, J., eds. End-of-Life Decision Making: A Cross National Study. Boston, MA: MIT Press, 2004.

Buchanan, A., et al. Deciding For Others: The Ethics of Surrogate Decision Making. Cambridge, U.K.: Cambridge University Press, 1990.

*Burt, R. Taking Care of Strangers: The Rule of Law in Doctor-Patient Relations. New York: Free Press, 1979.

Buzzee, S. "The Pain Relief Promotion Act: Congress's Misguided Intervention into End-of-Life Care." 70 University of Cincinnati Law Review 217, Fall 2001.

Caron, C. D., et al. "End-of-Life Decision Making in Dementia: The Perspective of Family Caregivers." Dementia 4(1): 113-136, 2005.

Hafemeister, T. "End-of-Life Decision Making, Therapeutic Jurisprudence, and Preventive Law: Hierarchial v. Consensus-Based Decision-Making Model." 41 Arizona Law Review 329, Summer 1999.

Kissine, D. "The Contribution of Demoralization to End of Life Decision-making." Hastings Center Report 34(4): 21-31, July-August 2004.

Kübler-Ross, E. On Death and Dying. New York: Macmillan Publishing Co., 1969.

Kunin, J. "Withholding Artificial Feeding from the Severely Demented: Merciful or Immoral? Contrasts between Secular and Jewish Perspectives." Journal of Medical Ethics 29(4): 208-212, 2003.

Lynn, J. "The End of Life." Testimony presented at the March 3, 2005 meeting of the President's Council on Bioethics, Washington, D.C., available at www.bioethics.gov.

Mendelson, D. and Jost, T. "A Comparative Study of the Law of Palliative Care and End-of-Life Treatment." 31 Journal of Law, Medicine, and Ethics 130, Spring 2003.

Miller, J. E. When You Know You're Dying-Twelve Thoughts to Guide You Through the Days Ahead. Fort Wayne, IN: Willowgreen Publishing, 1997.

Owen, J. E., et al. "End of Life Care and Reactions to Death in African-American and White Family Caregivers of Relatives with Alzheimer's Disease." Omega-Journal of Death and Dying 43(4): 349-361, 2001.

Quill, T. Caring for Patients at the End of Life: Facing an Uncertain Future Together. New York: Oxford University Press, 2001.

Sachs, G. "Sometimes Dying Still Stings." Journal of the American Medical Association 284(19): 2423, 2000.

Salmon, J. R., et al. "Transformative Aspects of Caregiving at Life's End." Journal of Pain and Symptom Management 29(2): 121-129, 2005.

Schulz, R., et al. "End-of-Life Care and the Effects of Bereavement on Family Caregivers of Persons with Dementia." New England Journal of Medicine 349(20): 1936-1942, 2003.

Financial Costs

Chiu, L., et al. "Cost Comparisons between Family-Based Care and Nursing Home Care for Dementia." Journal of Advanced Nursing 29(4): 1005-1012, 1999.

Langa, K., et al. "National Estimates of the Quantity and Cost of Informal Caregiving for the Elderly with Dementia." Journal of Internal Medicine 16: 770-778, 2001.

Seshamani, M., and Alastair, G. "Time to Death and Health Expenditure: An Improved Model for the Impact of Demographic Change on Healthcare Cost." Age and Aging 33: 556-561, 2004.

Living Arrangements

Gibson, M. Assisted Living: Beyond 50.03: A Report to the Nation on Independent Living and Disability. Washington, D.C.: AARP, May 2, 2005.

Graham, T. "Stay-At-Home Elders." Washington Post. August 2, 2005, p. F1.

Kalb, C., et al. "Aging: Small Is Beautiful." Newsweek. August 1, 2005, p. 46.

Pot, A. M., et al. "Institutionalization of Demented Elderly: The Role of Caregiver Characteristics." International Journal of Geriatric Psychiatry 16(3): 273-280, 2001.

Schafer, R. Housing America's Seniors. Cambridge, MA: Joint Center for Housing Studies of Harvard University, 2000.

Long-Term Care

Roper, A. W. The Costs of Long-term Care: Public Perceptions Versus Reality. Washington, D.C.: AARP, December 2001.

Spicker, S. F. and Ingman, S., eds. Vitalizing Long-term Care. New York: Springer Publishing Company, 1984.

U.S. Senate, Special Committee on Aging. Long-term Care Report: Findings from Committee Hearings of the 107th Congress. (S. Prt. 107-74), Washington, D.C.: U.S. Government Printing Office, 2002.

Death & Dying

Dignity

Caplan, A. "Dignity Is a Social Construct." December 24, 2003. http://bmj.bmjjournals.com (accessed January 5, 2004).

Kass, L. "A Commentary on Paul Ramsey: Averting One's Eyes, or Facing the Music?-On Dignity in Death." Hastings Center Studies 2(2): 67-80, May 1974.

Kass, L. Life, Liberty and the Defense of Dignity: The Challenge for Bioethics. San Francisco, CA: Encounter Books, 2002.

Kilner, J., Miller, A., Pellegrino, E., eds. Dignity and Dying: A Christian Appraisal. Grand Rapids, MI: Eerdmans Publishing Co., 1996.

Macklin, R. "Dignity Is A Useless Concept." (editorial) BMJ December 24, 2003. http://bmj.bmjjournals.com (accessed January 5, 2004).

McIntyre, M. "Dignity in Dementia: Person-Centered Care in Community." Journal Of Aging Studies 17: 473-484, 2003.

Mohler, R. "The Culture of Death and the Gospel of Life: An Evangelical Response to Evangelium Vitae." Ethics & Medicine: An International Christian Perspective on Bioethics 13(1): 2-4, 1997.

Sulmasy, D. "Death, Dignity, and the Theory of Value." Ethical Perspectives 9: 103-118, 2003.

Euthanasia & Assisted Suicide

Angelo, E. "Depression and Assisted Suicide in the Terminally Ill." National Catholic Bioethics Quarterly 1(3): 307-312, Autumn 2001.

Barton, M. "Oregon's Oxymoron: The Death with Dignity Act." National Catholic Bioethics Quarterly 4(4): 739-754, Winter 2004.

Carlson, E. The Unfit: A History of a Bad Idea. Cold Spring Harbor, N.Y.: Cold Spring Harbor Laboratory Press, 2001.

Doerflinger, R. "Assisted Suicide: Pro-choice or Anti-life?" Hastings Center Report 19(1): S16-19, 1989.

Dougherty, M. "Irrationality of the Irrationality Argument against Suicide." National Catholic Bioethics Quarterly 4(3): 489-493, Autumn 2004.

Evans, R. "How Then Should We Die?: California's 'Death with Dignity' Act." Ethics & Medicine: An International Christian Perspective on Bioethics 16(3): 79-86, 2000.

Fieger, G. and Pellegrino, E. "A Public Debate on Legalizing Physician-Assisted Suicide." Bannockburn, IL: Center for Bioethics and Human Dignity, 1995. (audio)

Fletcher, D. "Holy Dying, Assisted Dying?: An Anglican Perspective on Physician-Assisted Suicide." Ethics & Medicine: An International Journal of Bioethics 20(1): 35-42, Spring 2004.

Foley, K. and Hendin, H. "The Oregon Report: Don't Ask, Don't Tell." Hastings Center Report 29(3): 37-42, 1999.

Foley, K. and Hendin, H., eds. The Case Against Assisted Suicide: For the Right to End-of-Life Care. Baltimore, MD: Johns Hopkins University Press, 2004.

George, R. "Always to Care, Never to Kill." Interview by National Review Online. March 21, 2005. http://www.nationalreview.com (accessed March 24, 2005).

Gómez-Lobo, A. "On Euthanasia." in Morality and the Human Goods: An Introduction to Natural Law Ethics. Washington, D.C.: Georgetown University Press, 2002, pp. 98-111.

Gorsuch, N. "The Legalization of Assisted Suicide and the Law of Unintended Consequences: A Review of the Dutch and Oregon Experiments and Leading Utilitarian Arguments for Legal Change." 2004 Wisconsin Law Review 1347, 2004.

Harrington, C. "Mental Competence and End-of-Life Decision Making: Death Row Volunteering and Euthanasia." 29 Journal of Health Politics, Policy, and Law 1109, December 2004.

Hendin, H., et al. "Physician-Assisted Suicide and Euthanasia in the Netherlands: Lessons from the Dutch." Presented at the March 3, 2005 Meeting of the President's Council on Bioethics. Washington, D.C., available online at http://www.bioethics.gov. Reprinted from the Journal of the American Medical Association 277(21): 1720-1722, 1997.

Hendin, H. Suicide in America. New York: W.W. Norton and Co., 1996.

Howsepian, A. "Some Reservations About Suicide." Ethics & Medicine: An International Christian Perspective on Bioethics 12(2): 34-40, 1996.

Jansen-van der Weide, M., et al. "Granted, Undecided, Withdrawn, and Refused Requests for Euthanasia and Physician-Assisted Suicide." Archives of Internal Medicine 165(15): 1698-1704, August 8, 2005.

Kaplan, K., et al. "Suicide, Physician-Assisted Suicide, and Euthanasia in Men versus Women Around the World: The Degree of Physician Control." Ethics & Medicine: An International Journal of Bioethics 18(1): 33-48, Spring 2002.

Kass, L. "Neither for Love nor Money: Why Doctors Must Not Kill." The Public Interest 94: 25-46, Winter 1989.

Kilner, J. and Mitchell, C. Does God Need Our Help? Cloning, Assisted Suicide, & Other Challenges in Bioethics. Wheaton, IL: Tyndale House Publishers, 2003.

Lawler, P. "Euthanasia." in Postmodernism Rightly Understood: The Return to Realism in American Thought. Lanham, MD: Rowman & Littlefield Publishers, 1999, pp. 141-146.

Lee, D. "Physician-Assisted Suicide: A Conservative Critique of Intervention." Hastings Center Report 33(1): 17-19, January-February 2003.

Lee, P. "Personhood, Dignity, Suicide, and Euthanasia." National Catholic Bioethics Quarterly 1(3): 329-343, Autumn 2001.

L'Heureux, J. "Victory in Maine on Physician-Assisted Suicide." National Catholic Bioethics Quarterly 1(3): 299-305, Autumn 2001.

Marker, R. "An Inside Look at the Right to Die Movement." National Catholic Bioethics Quarterly 1(3): 363-394, Autumn 2001.

Mathuan, D. "Did Paul Condone Suicide? Implications for Assisted Suicide and Assisted Euthanasia." Ethics & Medicine: An International Christian Perspective on Bioethics 12(3): 55-60, 1996.

Mayo, D. and Gunderson, M. "Vitalism Revitalized: Vulnerable Populations, Prejudice, and Physician-Assisted Suicide." Hastings Center Report 32(4): 14-21, July-August 2002.

McConchie, D. "Redefining the Active/Passive Euthanasia Debate- art I." Ethics & Medicine: An International Christian Perspective on Bioethics 15(3): 70-74, 1999.

McConchie, D. "Redefining the Active/Passive Euthanasia Debate-Part II." Ethics & Medicine: An International Christian Perspective on Bioethics 16(1): 6-11, 2000.

Meilaender, G. "Euthanasia and Christian Vision," in The Limits of Love: Some Theological Explorations. University Park, PA: Pennsylvania State University Press, 1987, pp. 79-99.

Myers, R. "Physician-Assisted Suicide: A Current Legal Perspective." National Catholic Bioethics Quarterly 1(3): 345-361, Autumn 2001.

New York State Task Force on Life and the Law. When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context. New York State Task Force on Life and the Law. May 1994.

Quill, T. "Opening the Black Box: Physicians' Inner Responses to Patients' Requests for Physician-Assisted Death." Journal of Palliative Medicine 7(3): 469-4711, June 2004.

Quill, T., et al. "Palliative Treatments of Last Resort: Choosing the Least Harmful Alternative." Annals of Internal Medicine 132(6): 488-493, March 21, 2000.

Quill, T. and Battin, P. Physician-Assisted Dying: The Case for Palliative Care and Patient Choice. Baltimore, MD: Johns Hopkins University Press, 2004.

Schneider, C., ed. Law at the End of Life: The Supreme Court and Assisted Suicide. Ann Arbor, MI: University of Michigan Press, 2004.

Schudt, K. "Choosing Oblivion: The Irrationality of Suicide." National Catholic Bioethics Quarterly 2(4): 609-614, Winter 2002.

Smith, W. Forced Exit: The Slippery Slope from Assisted Suicide to Legalized Murder. Dallas, TX: Spence Publishing Company, 2003.

Thomas, K. "Confronting End-of-Life Decisions: Should We Expand the Right To Die?" 44 Federal Lawyer 30, May 1997.

Valko, N. "Should Sedation be Terminal?" National Catholic Bioethics Quarterly 2(4): 601-608, Winter 2002.

Verhagen, E. and Sauer, P. "The Groningen Protocol-Euthanasia in Severely Ill Newborns." New England Journal of Medicine 352: 959-962, March 10, 2005.

Vermaat, J. "'Euthanasia' in the Third Reich: Lessons for Today?" Ethics & Medicine: An International Journal of Bioethics 18(1): 21-32, Spring 2002.

Wernow, J. "Confronting the Pine Box with the Ballot Box: A Critical Appraisal of Oregon's Attempt to 'Do' Medical Ethics by Public Ballot." Ethics & Medicine: An International Christian Perspective on Bioethics 13(3): 71-75, 1997.

Witteck, H. "Decision-Making at the End-of-Life and the Incompetent Patient: A Comparative Approach." 22 Medicine and Law 533, 2003.

Wolf, S. "Assessing Physician Compliance with the Rules for Euthanasia and Assisted Suicide." Archives of Internal Medicine 165(15): 1677-1679, August 8, 2005.

Wolfson, A. "Killing Off the Dying?" The Public Interest 131: 50-70, Spring 1998.

Medical Standards / Best Practices

Ahronheim, J., et al. "Treatment of the Dying in the Acute Care Hospital." Internal Medicine 156: 2094-2100, October 14, 1996.

Arras, J., ed. Bringing the Hospital Home: Ethical and Social Implications of High-Tech Home Care. Baltimore, MD: Johns Hopkins University Press, 1995.

Asch, D., et al. "The Sequence of Withdrawing Life-Sustaining Treatments from Patients." American Journal of Medicine 107: 153-156, August 1999.

Buntin-Mushock, M., et al. "Age-Dependent Opioid Escalation in Chronic Pain Patients." Anesthesia & Analgesia 100: 1740-1745, June 2005.

Carmel, S. "Life-Sustaining Treatments: What Doctors Do, What They Want for Themselves, and What Elderly Persons Want." Social Science and Medicine 49: 1401-1408, 1999.

Chevlen, E. and Smith, W. Power Over Pain: How to Get the Pain Control You Need. Steubenville, OH: International Task Force, 2002.

Health Care Provided to Non-Ambulatory Persons: Hearing Before the Senate Committee on Health, Education, Labor, and Pensions, 108th Congress. Statements of: Mr. Rud Turnbull, Co-Director, University of Kansas Beach Center on Disability; Dr. James L. Bernat, Professor of Medicine, Dartmouth Medical School; Dr. Deborah Warden, Director, Defense and Veterans Head Injury Program; and Dr. J. Donald Schumacher, President and CEO, National Hospice and Palliative Care Association. April 6, 2005.

New York State Task Force on Life and the Law. The Determination of Death. New York State Task Force on Life and the Law. January 1989.

Schwartz, J. "For the End of Life, Hospital Pairs Ethics and Medicine." New York Times. July 4, 2005, p. B1.

Wenger, N., et al. "Withholding Versus Withdrawing Life-Sustaining Treatment: Patient Factors and Documentation Associated with Dialysis Decisions." Journal of American Geriatrics Society 48: S75-S83, 2000.

Wennberg, J. "Variation in Use of Medicare Services Among Regions and Selected Academic Medical Centers: Is More Better?" Ducan W. Clark Lecture presented to the New York Academy of Medicine, January 24, 2005.

Williams, M. "End-of-Life Care and Organ Donation Decisions." 15 Probate And Property 58, September/October 2001.

Youngner, S., et al., eds. The Definition of Death: Contemporary Controversies. Baltimore, MD: Johns Hopkins University Press, 1999.

Nutrition & Hydration

Atkinson, A. "Artificial Nutrition and Hydration for Patients in Persistent Vegetative State: Continuing Reflections." Ethics & Medicine: An International Christian Perspective on Bioethics 16(3): 73-75, 2000.

Brown, S. "British Man Adds New Wrinkle in End-of-Life Debate." Seattle Times. May 31, 2005, http://www.seattletimes.nwsource.com (accessed May 31, 2005).

Cataldo, P. "Pope John Paul II on Nutrition and Hydration: A Change of Catholic Teaching?" National Catholic Bioethics Quarterly 4(3): 513-536, Autumn 2004.

Craig, G. "Palliative Care from the Perspective of a Consultant Geriatrician: The Dangers of Withholding Hydration." Ethics & Medicine: An International Christian Perspective on Bioethics 15(1): 15-19, 1999.

Craig, G. "Paradise Lost: The Devolution of Medical Practice." Ethics & Medicine: An International Christian Perspective on Bioethics 16(1): 1-3, 2000.

Kopaczynski, G. "Initial Reactions to the Pope's March 20, 2004, Allocution." National Catholic Bioethics Quarterly 4(3): 473-482, Autumn 2004.

Lynn, J., ed. By No Extraordinary Means: The Choice to Forego Life-Sustaining Food and Water. Bloomington & Indianapolis, IN: Indiana University Press, 1986.

Lynn, J. and Childress, J. "Must Patients Always be Given Food and Water?" Hastings Center Report 13(5): 17-21, October 1983.

Marker, R. "Case Study: Terri Schiavo and the Catholic Connection." National Catholic Bioethics Quarterly 4(3): 555-569, Autumn 2004.

Marker, R. "Mental Disability and Death by Dehydration." National Catholic Bioethics Quarterly 2(1): 125-136, Spring 2002.

Meilaender, G. "Withdrawing Food and Water," in The Limits of Love: Some Theological Explorations. University Park, PA: Pennsylvania State University Press, 1987, pp. 102-111.

Orr, R. "Clinical Ethics Case Consultation." Ethics & Medicine: An International Journal of Bioethics 18(1): 11-13, Spring 2002.

Quill, T. "Terri Schiavo-A Tragedy Compounded." New England Journal of Medicine. 352(16): 1630-1633, April 21, 2005.

Repenshek, M. and Sloser, J. "Medically Assisted Nutrition and Hydration." Hastings Center Report 34(6): 13-16, November-December 2004.

Shannon, T. and Walter, J. "Implications of the Papal Allocution on Feeding Tubes."Hastings Center Report 34(4): 18-20, July-August 2004.

Torchia, J. "Artificial Hydration and Nutrition for the PVS Patient." National Catholic Bioethics Quarterly 3(4): 719-730, Winter 2003.

Persistent Vegetative State

Hollins, S. "Something Worth Writing Home About: Clear and Convincing Evidence, Living Wills, and Cruzan v. Director Missouri Department of Health," 1991 Symposium: The Rehnquist Court. 22 University of Toledo Law Review 871, Spring 1991.

O'Brien, D., et al. "Utilitarian Pessimism, Human Dignity, and the Vegetative State: A Practical Analysis of the Papal Statement." National Catholic Bioethics Quarterly 4(3): 497-512, Autumn 2004.

Orr, R. and Meilaender, G. "Ethics & Life's Ending: An Exchange." First Things 145: 31-38, August/September 2004.

Pope John Paul II. "On Life-Sustaining Treatments and the Vegetative State: Scientific Advances and Ethical Dilemmas." National Catholic Bioethics Quarterly 4(3): 573-576, Autumn 2004.

Torchia, J. "Postmodernism and the Persistent Vegetative State." National Catholic Bioethics Quarterly 2(2): 257-275, Summer 2002.

World Federation of Catholic Medical Associations and the Pontifical Academy for Life. "Considerations on the Scientific and Ethical Problems Related to the Vegetative State." National Catholic Bioethics Quarterly 4(3): 579-581, Autumn 2004.

Quality of Life

Byock, I. Dying Well: A Prospect for Growth at the End of Life. New York: Riverhead Books, 1997.

Campbell, C. "A Relative Value?" National Review September 1, 2004. http://www.nationalreview.com (accessed September 1, 2004).

Nussbaum, M., et al. The Quality of Life. Oxford, U.K.: Clarendon Press, 1993.

Weyerer, S. and Schaufele, M. "The Assessment of Quality of Life in Dementia." International Psychogeriatrics 15(3): 213-218, 2003.

Trajectories

Brody, J. "Facing Up to the Inevitable, in Search of a Good Death." New York Times. December 30, 2003, p. F5.

Lynn, J. and Adamson, D. "Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age." Santa Monica, CA: RAND, 2003.

National Health Center for Health Statistics. "Home Health Care Patients: Data from the 2000 National Home and Hospice Care Survey." www.cdc.gov (accessed May 2, 2005).

Dementias other than Alzheimer's

Boccardi, M. et al. "Frontotemporal Dementia as a Neural System Disease." Neurobiology of Aging 26: 37-44, 2005.

Caselli, R. J. "Current Issues in the Diagnosis and Management of Dementia." Seminars in Neurology 23(3): 231-240, 2003.

Dawson, T. and Dawson, V. "Molecular Pathways of Neurodegeneration in Parkinson's Disease." Science 302(5646): 819-822, October 31, 2003.

DeKosky, S. and Marek, K. "Looking Backward to Move Forward: Early Detection of Neurodegenerative Disorders." Science 302(5646): 830-834, October 31, 2003.

Diehl, J., et al. "A Support Group for Caregivers of Patients with Frontotemporal Dementia." Dementia 2(2): 151-161, 2003.

Jeste, D., et al. "Consensus Statement on the Upcoming Crisis in Geriatric Mental Health: Research Agenda for the Next 2 Decades." Archives of General Psychiatry56: 848-853, 1999.

Langa, K. M., et al. "Mixed Dementia: Emerging Concepts and Therapeutic Implications." Journal of the American Medical Association 292(23): 2901-2908, 2004.

Saint-Cyr, J., et al. "Neuropsychological Consequences of Chronic Bilateral Stimulation of the Subthalamic Nucleus in Parkinson's Disease." Brain 123: 2091-2108, 2000.

Demographics

American Society

Alzheimer's Community

Alzheimer's Association. "Statistics about Alzheimer's Disease." August 2005. http://www.alz.org/AboutAD/statistics.asp (accessed August 24, 2005).

Grant, W. "Year 2000 Prevalence of Alzheimer's Disease in the United States." Archives of Neurology 61: 802-803, 2004.

Hebert, L. E., et al. "Alzheimer Disease in the U.S. Population: Prevalence Estimates Using the 2000 Census." Archives of Neurology 60: 1119-1122, 2003.

Hebert, L. E., et al. "State-Specific Projections through 2025 of Alzheimer Disease Prevalence." Neurology 62(9): 1645, 2004.

Baby Boomers

Baek, E. and DeVaney, S. "Assessing the Baby Boomer's Financial Wellness." Family and Consumer Sciences Research Journal 32(4): 321-348, 2004.

Butrica, B. and Uccello, C. "How Will Boomers Fare at Retirement?" AARP Public Policy Institute Issues Paper 2004(05): 7-11, 2004.

Hodge, P. "Baby Boomer Public Policy: A New Vision" Harvard Generations Policy Journal 1: 7-21, Winter 2004.

International Longevity Center. 2004 Annual Report: Here Come the Baby Boomers. New York: International Longevity Center, 2004.

Marsa, L. "Boomers Only-Employment of Baby Boomers Past Retirement Age." Omni October 1, 1992, http://www.findarticles.com (accessed May 2005).

Weiss, M. "Great Expectations-Baby Boomer Wealth Forecasts Wilt." American Demographics May 1, 2003, www.AdAge.com (accessed May 1, 2005).

Caregivers

Administration on Aging. "Family Caregiving." May 2003. http://www.aoa. gov/press/fact/alpha/fact_family_caregiver.asp (accessed May 2005).

Alzheimer's Association and National Alliance for Caregiving. Families Care: Alzheimer's Caregiving in the United States 2004. Washington, D.C.: Alzheimer's Association and the National Alliance for Caregiving, September 2004.

American Hospital Association. "TrendWatch." June 2001. http://www.hospitalconnect.com/ahapolicyforum/trendwatch/twjune2001.html (accessed August 22, 2005).

Feldman, P. "Labor Market Issues In Home Care" in Fox, D. and Raphael, C., eds. Home-Based Care For a New Century. Malden, MA: Blackwell Publishers, 1997.

Gibson, M., et al. Across the States: Profiles of Long-term Care 2004. Washington, D.C.: AARP, May 2, 2005.

Krisberg, K. "Public Health Work Force Not Prepared for Aging Population: Increasing Number of Seniors on Horizon." May 18, 2005. http://www.medscape.com (accessed May 18, 2005).

National Alliance for Caregiving. Caregiving in the U.S. Washington, D.C.: National Alliance for Caregiving and AARP, April 2004.

National Center for Assisted Living. 2001 Facts and Trends: The Assisted Living Sourcebook. Washington, D.C.: National Center for Assisted Living, 2001.

National Council of State Boards of Nursing. National Council Licensure Examination-Registered Nurse/Practical Nurse Examination Statistics: Statistics from Years 1995-2002. 2002.

National Family Caregivers Association. "Caregiving Statistics." August 24, 2005. http://www.thefamilycaregiver.org/who/stats.cfm (accessed August 24, 2005).

National Family Caregivers Association. "Comparing Survey Stats and Understanding Why They Differ." 2000. http://www.thefamilycaregiver.org/ (accessed May 2005).

Public Policy Institute. Fact Sheet Number 91: Family Caregiving and Long-Term Care. Washington, D.C.: Public Policy Institute, November 2002.

Stone, R. "The Direct Care Worker: The Third Rail of Home Care Policy." Annual Review of Public Health 25: 521-537, 2004.

Stone, R. and Wiener, J. Who Will Care For Us? Addressing the Long-Term Care Workforce Crisis. Washington, D.C.: The Urban Institute and the American Association of Homes and Services for the Aging, 2001.

U.S. Department of Health and Human Services. The Future Supply of Long-Term Care Workers in Relation to the Aging Baby Boom Generation. Report to Congress. May 14, 2003, available at http://www.hss.gov (accessed April 2005).

Family Structure

Bureau of the Census, Economics and Statistics Administration, U.S. Department of Commerce. "United States: Selected Social Characteristics: 2003 American Community Survey Summary Tables." 2003. http://factfinder.census.gov (accessed May 2, 2005).

Gill, R. Posterity Lost: Progress, Ideology, and the Decline of the American Family. Lanham, MD: Rowman & Littlefield Publishers, 1997.

Liang, J., et al. "Health and Living Arrangements Among Older Americans." Journal of Aging and Health 17(3): 305-335, June 2005.

National Center for Health Statistics, U.S. Department of Health and Human Services. "Births, Marriages, Divorces, and Deaths: Provisional Data for October 2004." National Vital Statistics Reports 53(18), April 19, 2005.

Wellner, A. "Is 'Increasing Mobility' a Threat to U.S. Elder Care?" April 2005. http://www.prb.org (accessed April 30, 2005).

General

AARP, Public Policy Institute. The State of 50+ America 2005. Washington, D.C.: Public Policy Institute, 2005.

Administration on Aging. "Older Population by Age: 1900-2000." http://www.aoa.gov/prof/Statistics/online_stat_data/AgePop2050.asp (accessed April 30, 2005).

Administration on Aging. "A Profile of Older Americans: 2003." Washington, D.C.: U.S. Department of Health and Human Services, 2003.

Administration on Aging, U.S. Department of Health and Human Services. "A Statistical Profile of Older Americans Aged 65+." http://www.aoa.gov (accessed May 2005).

Binstock, R. "The Aging Society: An Introductory Overview." Testimony presented at the June 24, 2004 meeting of the President's Council on Bioethics, Washington, D.C., available online at http://www.bioethics.gov.

Bureau of the Census, Economics and Statistics Administration, U.S. Department of Commerce. "Facts for Features: Older Americans Month." Washington, D.C.: U.S. Department of Commerce, March 24, 2005.

Bureau of the Census, Economics and Statistics Administration, U.S. Department of Commerce. "United States: General Demographic Characteristics: 2003 American Community Survey Summary Tables." 2003. http://factfinder.census.gov (accessed May 2, 2005).

Bureau of the Census, Economics and Statistics Administration, U.S. Department of Commerce. "United States: Population and Housing Narrative Profile: 2003 American Community Survey Tables." 2003. http://factfinder.census.gov (accessed May 2, 2005).

Butler, R., ed. Life in an Older America. New York: Century Foundation Press, 1999.

Camarota, S. "Immigration in an Aging Society: Workers, Birth Rates, and Social Security." Center for Immigration Studies, April 2005.

Collins, G. "Rethinking Retirement in the Context of an Aging Workforce." Journal of a Career Development 30(2): 145-157, 2003.

Friedland, R. and Summer, L. "Demography Is Not Destiny, Revisited." Center on an Aging Society, Georgetown University, March 2005. Available online at http://ihcrp.georgetown.edu/agingsociety.

"Getting Older, Staying Healthier: The Demographics of Health Care." Testimony of James Lubitz, Acting Chief, Aging and Chronic Diseases, Statistics Branch, National Center for Health Statistics, Centers for Disease Control and Prevention, before the Joint Economic Committee, U.S. Senate, July 22, 2004.

Hogan, C., et al. A Statistical Profile of Decedents in the Medicare Program. Washington, D.C.: Medicare Payment Advisory Commission, 2000.

Hooyman, N. and Kiyak, H. Social Gerontology. Boston, MA: Allyn and Bacon, 1996.

Institute for Health and Aging, University of California-San Francisco. Chronic Care in America: A Twenty-first Century Challenge. Princeton, N.J.: Robert Wood Johnson Foundation, 1996.

International Longevity Center. Annual Report 2003: Aging is a Woman's Issue. New York: International Longevity Center, 2003.

Jitapunkul, S., et al. "Disability-free Life Expectancy of Elderly People in a Population Undergoing Demographic and Epidemiologic Transition." Age and Aging 32(4): 401-405, July 2003.

Johns Hopkins University Partnership for Solutions. "Chronic Conditions: Making the Case for Ongoing Care." September 2004 Update. http://www.rwjf. org (accessed August 24, 2005).

Kassner, E. and Bectel, R. Midlife and Older Americans with Disabilities: Who Gets Help? A Chartbook. Washington, D.C.: AARP Public Policy Institute, 1998.

Knickman, J. "The 2030 problem: Caring for Aging Baby Boomers." Health Services Research 37(4): 849-884, August 2002.

Korczyk, S. Back to Which Future: The U.S. Aging Crisis Revisited, Washington, D.C.: Public Policy Institute, December 2002.

Living Stronger, Earning Longer: Redefining Retirement in the 21st Century Work Place. Hearing Before the Senate Special Committee on Aging, 108th Congress. Statements of Senator Herb Kohl, Ranking Member, and Senator Gordon Smith, Chairman. April 27, 2005.

Manton, K. and Gu, X. L. "Changes in the Prevalence of Chronic Disability in the United States Black and Nonblack Population Above Age 65 from 1982 to 1999." Proceedings of the National Academy of Sciences of the United States of America 98: 6354-6359, 2001.

Moody, H. Aging: Concepts and Controversies. 4th ed. Thousand Oaks, CA: Sage Publications, Inc., 2002.

National Aging Information Center, Administration on Aging. Aging In The Twenty-first Century. Washington, D.C.: Government Printing Office, 1996.

Novelli, W. "2011 in America: A Blueprint for Change." Harvard Generations Policy Journal 1: 23-33, Winter 2004.

Older Americans 2004: Key Indicators of Well-Being. Federal Interagency Forum on Aging-Related Statistics. Available online at http://www.agingstats. gov.

Poterba, J. "Demographic Structure and Asset Returns." The Review of Economics and Statistics 83(4): 565-584, November 1, 2001.

Rix, S. Aging and Work-A View from the United States. Washington, D.C.: Public Policy Institute, 2004.

Social Security Administration. "Income of the Population 55 and Older." March 2005. SSA Publication No. 13-11871. http://www.ssa.gov/policy/ docs/statcomps/income_pop55 (accessed May 2, 2005).

U. S. Census Bureau. Estimates of the Resident Population by Selected Age Groups for the United States and States and for Puerto Rico: July 1, 2004. U.S. Census Bureau, 2005. Available online at http://www.census.gov.

U.S. Census Bureau. State Interim Population Projections by Age and Sex: 2004-2030, Table 3, "Ranking of States by Projected Percent of Population Age 65 and Over: 2000, 2010, and 2030." U.S. Census Bureau, 2005. Available online at http://www.census.gov.

U.S. Census Bureau. U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin, Table 2a, "Projected Population of the United States, by Age and Sex: 2000 to 2050." U.S. Census Bureau, 2004. Available online at http://www.census.gov.

Vallin, J. "The Demographic 'Givens': Changes in the Generational Structures of Human Populations." Presentation to the X Plenary Session of the Pontifical Academy of Social Sciences. Rome, April 28, 2004.

Winn, F. "Structural Impediments to the Efficient Use of Older Workers in the United States." Experimental Aging Research 25(4): 451-459, October 1999.

Global

Callahan, D., ed. A World Growing Old. Washington, D.C.: Georgetown University Press, 1995.

Hewitt, P. "The Geopolitics of Global Aging." Harvard Generations Policy Journal 1: 103-113, Winter 2004.

International Longevity Center. Annual Report 2002: The ILC Explores the Impact of the World's Decreasing Birth Rates, Increasing Longevity, and Population Aging. New York: International Longevity Center, 2002.

Longman, P. The Empty Cradle: How Falling Birthrates Threaten World Prosperity and What to Do About It. New York: Basic Books, 2004.

McKinsey Global Institute. The Coming Demographic Deficit: How Aging Populations Will Reduce Global Savings. Washington, D.C.: McKinsey Global Institute, 2004.

United Nations Division for Social Policy and Development. "The Aging of the World's Population." January 15, 2003. http://www.un.org (accessed May 2, 2005).

Wattenberg, B. Fewer: How the New Demography of Depopulation Will Shape Our Future. Chicago, IL: Ivan R. Dee Publisher, 2004.

Whiteford, P. "Anticipating Population Ageing-Challenges And Responses." May 2, 2005. http://www.oecd.org (accessed May 2, 2005).

Economic Matters

Collins, S., et al. "Will You Still Need Me? The Health and Financial Security of Older Americans." Commonwealth Fund. http://www.cmwf.org (accessed June 2005).

Lee, R. and Edwards, R. "The Fiscal Impact of Population Aging in the US: Assessing the Uncertainties." Prepared for the National Bureau of Economic Research's Tax Policy and Economy Meeting, October 30, 2001. http://repositories.cdlib.org (accessed May 2, 2005).

Lindquist, L. and Golub, R. "Cruise Ship Care: A Proposed Alternative to Assisted Living Facilities." Journal of the American Geriatrics Society 52(11): 1951-1954, November 2004.

Rivlin, A. and Sawhill, I., eds. Restoring Fiscal Sanity 2005. Washington, D.C.: Brookings Institution Press, 2005.

Robertson, T. "More Retirees Pay the Bills with Reverse Mortgages." Boston Globe. April 25, 2005, p. A1.

Ethical Reflections

Autonomy & Its Limits

Bellard, L. "Restraining the Paternalism of Attorneys and Families in End-of-Life Decision-Making while Recognizing that Patients Want More than Just Autonomy." 14 Georgetown Journal of Legal Ethics 803, Spring 2001.

*Burt, R. Death Is That Man Taking Names: Intersections of American Medicine, Law, and Culture. Berkeley, CA: University of California Press, 2002.

Channick, S. "The Myth of Autonomy at the End-of-Life: Questioning the Paradigm of Rights." 44 Villanova Law Review 577, 1999.

Davis, J. "The Concept of Precedent Autonomy." Bioethics 16: 114-133, 2002.

Dresser, R. "Autonomy Revisited: The Limits of Anticipatory Choices." in Binstock, R., et al., eds. Dementia and Aging: Ethics, Values, and Policy Choices. Baltimore, MD: Johns Hopkins University Press, 1992.

Dresser, R. and Robertson, J. "Quality of Life and Non-Treatment Decisions for Incompetent Patients: A Critique of the Orthodox Approach." Law, Medicine & Health Care 17(3): 234-244, Fall 1989.

Dworkin, R. Life's Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom. New York: Vintage Books, 1994.

Dworkin, R. Limits: The Role of the Law in Bioethical Decision Making. Bloomington, IN: Indiana University Press, 1996.

Francis, L. "Decision Making at the End of Life: Patients with Alzheimer's or Other Dementias." 35 Georgia Law Review 539, Winter 2001.

Gready, R., et al. "Actual and Perceived Stability of Preferences for Life-Sustaining Treatment." Journal of Clinical Ethics 11(4): 334-346, Winter 2000.

Hyun, I. "Waiver of Informed Consent, Cultural Sensitivity, and the Problems of Unjust Families and Traditions." Hastings Center Report 32(5): 14-22, September-October 2002.

Meier, D. and Morrison, R. "Autonomy Reconsidered." New England Journal of Medicine 346(14): 1087-1089, April 4, 2002.

Peters, Jr., P. "The Illusion of Autonomy at the End of Life: Unconsented Life Support and the Wrongful Life Analogy." 45 UCLA Law Review 673, February 1998.

Price, M. "Mercy and Autonomy: The Failure of Battin's Justification for Euthanasia." National Catholic Bioethics Quarterly 4(3): 483-487, Autumn 2004.

Roser, T. "Are Patients Suffering from Dementia Ready to Make End-of-Life Decisions?" Presented at the Ethics and Aging Conference of the Center for Clinical Bioethics, Georgetown University. June 17-19, 2004.

Schneider, C. The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York: Oxford University Press, 1998.

Soto de Mayor, S. "Autonomy, Euthanasia, and the Holy Spirit." Ethics & Medicine: An International Christian Perspective on Bioethics 16(3): 75-79, 2000.

Meaning of Aging

*Butler, R. and Kiikuni, K., eds. Who Is Responsible for My Old Age? New York: Springer Publishing Company, 1993.

Callahan, D. The Troubled Dream of Life: In Search of a Peaceful Death. Washington, D.C.: Georgetown University Press, 2000.

Cole, T. "After the Life Cycle: The Moral Challenge of Later Life." Presented at the December 2, 2004 meeting of the President's Council on Bioethics. Washington, D.C., available online at http://www.bioethics.gov.

Cole, T. The Journey of Life: A Cultural History of Aging in America, Cambridge, U.K: Cambridge University Press, 1992.

Cole, T. and Winkler, M., eds. The Oxford Book of Aging. Oxford, U.K.: Oxford University Press, 1994.

*Cole, T., ed. What Does It Mean to Grow Old? Reflections from the Humanities. Durham, N.C.: Duke University Press, 1986.

Hollinger, D. "Theological Foundations for Death and Dying Issues." Ethics & Medicine: An International Christian Perspective on Bioethics 12(3): 60-65, 1996.

Jecker, N., ed. Aging & Ethics: Philosophical Problems in Gerontology. Totowa, New Jersey: Humana Press, 1992.

Kass, L. "The Case for Mortality." The American Scholar 52(2): 173-191, 1983.

Maxwell, F. The Measure of My Days. New York: Penguin, 1968.

*May, W. F. "The Virtues and Vices of the Elderly" in Cole, T., et al., eds. What Does It Mean to Grow Old? Reflections from the Humanities. Durham, N.C.: Duke University Press, 1986. pp. 41-61.

McFadden, S., and Atchley, R., eds. Aging and the Meaning of Time: A Multidisciplinary Exploration. New York: Springer Publishing, 2001.

*Meilaender, G. "I Want To Burden My Loved Ones" in Things That Count: Essays Moral and Theological. Wilmington, DE: ISI Books, 2000. pp. 79-84. (Originally published in First Things, October 1991); "Addendum to 'I Want To Burden My Loved Ones.'" Presented at the September 9, 2004 meeting of the President's Council on Bioethics. Washington, D.C., available at online at http://www.bioethics.gov.

Moody, H. Ethics in an Aging Society. Baltimore, MD: Johns Hopkins University Press, 1992.

Nuland, S. How We Die: Reflections on Life's Final Chapter. New York: Alfred A. Knopf, 1994.

*Pipher, M. Another Country: Navigating the Emotional Territory of Our Elders. New York: Riverhead Books, 1999.

Walker, M. Mother Time: Women, Aging, and Ethics. Lanham, MD: Rowman & Littlefield Publishers, 1999.

Medical Ethics

Arras, J. "The Severely Demented, Minimally Functional Patient: An Ethical Analysis." Journal of the American Geriatric Society 36(10): 938-944, October 1988.

Cameron, N. The New Medicine: Life and Death After Hippocrates. Chicago, IL: Bioethics Press, 2001.

Cohen, C. Casebook on the Termination of Life-Sustaining Treatment and the Care of the Dying. Bloomington, IN: Indiana University Press, July 1, 1988.

Dresser, R. "Schiavo's Legacy: The Need for an Objective Standard." Hastings Center Report 35(3): 20-22, March-April 2005.

Dresser, R. "Treatment Decisions for Dementia Patients: The Search for Normative Boundaries," Presented at the December 2, 2004 meeting of the President's Council on Bioethics. Washington, D.C., available online at http://www.bioethics.gov.

Field, M. and Cassel, C., eds, Institute of Medicine. Approaching Death: Improving Care at the End of Life. Washington, D.C.: National Academy Press, 1997.

Firlik, A. "Margo's Logo." Journal of the American Medical Association 265: 201, 1991.

Hanson, M. and Callahan, D., eds. The Goals of Medicine: The Forgotten Issue in Health Care Reform. Washington, D.C.: Georgetown University Press, 1999.

Hardwig, J. Is There a Duty to Die? And Other Essays in Medical Ethics. New York: Routledge, 2000.

Hastings Center. Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying. Bloomington, IN: Indiana University Press, 1987.

Hippocrates. The Theory and Practice of Medicine. New York: Philosophical Library, 1964.

Hollinger, D. "Curing, Caring, and Beyond: Reflections for a Clinical Ethic." Ethics & Medicine: An International Journal of Bioethics 19(1): 45-53, Spring 2003.

Kaplan, K. and Schwartz, M. "Watching over Patient Life and Death: Kevorkian, Hippocrates and Maimonides." Ethics & Medicine: An International Christian Perspective on Bioethics 14(2): 49-53, 1998.

Kass, L. "Ethical Dilemmas in the Care of the Ill I: What is the Physician's Service?" Journal of the American Medical Association 244(16): 1811-1816, October 17, 1980.

Kass, L. "Ethical Dilemmas in the Care of the Ill II: What is the Patient's Good?" Journal of the American Medical Association 244(17): 1946-1949, October 24/31, 1980.

Kelly, D. Contemporary Catholic Health Care Ethics. Washington, D.C.: Georgetown University Press, 2004.

Kelly, G. Medico-Moral Problems. St. Louis, MO: The Catholic Hospital Association of the United States and Canada, 1958.

Keoian, J. "'Double Effect' and Palliative Care: A Legal and Ethical Outline." Ethics & Medicine: An International Christian Perspective on Bioethics 15(2): 53-54, 1999.

Kilner, J. Who Lives? Who Dies? Ethical Criteria in Patient Selection. New Haven, CT: Yale University Press, 1990.

Lo, B. "Ethical Decisions in Clinical Medicine" in Fauci, A., et al., eds. Harrison's Principles of Internal Medicine. 14th ed. New York: McGraw Hill, 1998.

Lo, B. Resolving Ethical Dilemmas: A Guide for Clinicians. Baltimore, MD: Williams & Wilkins, 1995.

Macklin, R. Against Relativism. Oxford, U.K.: Oxford University Press, 1999.

Markova, S. "Opinions and Attitudes of Medical Students Towards Basic Principles of the Hippocratic Oath." Ethics & Medicine: An International Christian Perspective on Bioethics 15(3): 66-69, 1999.

May, W. E. Catholic Bioethics and the Gift of Human Life. Huntington, IN: Our Sunday Visitor, 2000.

May, W. F. The Physician's Covenant: Images of the Healer in Medical Ethics. Louisville, KY: Westminster John Knox Press, 2000.

McHugh, P. "Annihilating Terri Schiavo." Commentary 119(6): 27-32, June 2005.

McKenny, G. To Relieve the Human Condition: Bioethics, Technology, and the Body. Albany, N.Y.: State University of New York Press, 1997.

Meilaender, G. "Living Life's End." First Things 153: 17-21, May 2005.

Monagle, J. and Thomasma, D., eds. Health Care Ethics: Critical Issues for the 21st Century. Gaithersburg, MD: Aspen Publishers, 1998.

Osler, W. The Principles and Practice of Medicine. 3rd ed. New York: D. Appleton, 1898.

Pellegrino, E. "Ethics and Aging: The Physician Patient Relationship." Presented at the Ethics and Aging Conference of the Georgetown University Center for Clinical Bioethics. June 17-19, 2004.

Pellegrino, E. and Thomasma, D. Virtues in Medical Practice. New York: Oxford University Press, 1993.

Pence, G. Classic Cases in Medical Ethics. New York: McGraw-Hill, 1990.

Pence, G., ed. Classic Works in Medical Ethics. Boston: McGraw-Hill, 1998.

The President's Commission For The Study of Ethical Problems In Medicine and Biomedical and Behavioral Research. Deciding to Forgo Life-Sustaining Treatment. Washington, D.C.: U.S. Government Printing Office, 1983.

Quill, T. "Principle of Double Effect and End-of-Life Pain Management: Additional Myths and a Limited Role." Journal of Palliative Medicine 1(4): 333-336, Winter 1998.

Quill, T. Death and Dignity: Making Choices and Taking Charge. New York: W.W. Norton & Co., 1993.

Quill T., et al. "Palliative Options of Last Resort: A Comparison of Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-assisted Suicide, and Voluntary Active Euthanasia." Journal of the American Medical Association 278: 2099-2104, 1997.

Rae, S., et al. Bioethics: A Christian Approach in a Pluralistic Age. Grand Rapids, MI: William B. Eerdmans Publishing Company, 1999.

Ramsey, P. Ethics at the Edges of Life: Medical and Legal Intersections. New Haven, CT: Yale University Press, 1978.

*Ramsey, P. The Patient as Person. New Haven, CT: Yale University Press, 1970.

Siberski, J. "Decisional Capacity in the Elderly: Dementia, Executive Function, and Assessment." Presented at the Ethics and Aging Conference of the Georgetown University Center for Clinical Bioethics. June 17-19, 2004.

Intergenerational Readings

Abramson, A. and Silverstein, M. Images of Aging in America 2004: A Summary of Selected Findings. Washington, D.C.: AARP, November 2004.

*Daniels, N. Am I My Parent's Keeper?: An Essay on Justice Between the Young and the Old. Oxford, U.K.: Oxford University Press, 1988.

Davis, D. "What Does Society Owe the Elderly?" Presented at the Ethics and Aging Conference of the Georgetown University Center for Clinical Bioethics. June 17-19, 2004.

Donati, P. "Social Policy, the Family, and Intergenerational Solidarity." Presentation to the X Plenary Session of the Pontifical Academy of Social Sciences. Rome, April 30, 2004.

Etzioni, A. "End Game: What the Elderly Have Earned." American Scholar Journal. Spring 2005. pp. 32- 40.

Fukuyama, F. Economic, Political and Cultural Consequences of Changes in Generational Relations. Presentation to the X Plenary Session of the Pontifical Academy of Social Sciences. Rome, April 29, 2004.

Glendon, M. "Discovering Our Dependence." First Things 146: 11-13, October 2004.

Lewin, T. "Financially-Set Grandparents Help Keep Families Afloat, Too." New York Times. July 14, 2005, p. A1.

Neale, A. "Intergenerational Equity and Age-Based Rationing." Presented at the Ethics and Aging Conference of the Center for Clinical Bioethics, Georgetown University. June 17-19, 2004.

Tietmeyer, H. "Intergenerational Solidarity and the Crisis of the Welfare State: Pensions, Social Security, and Health Care." Presentation to the X Plenary Session of the Pontifical Academy of Social Sciences. Rome, April 30, 2004.

Longevity

Conboy, I. "Notch-Mediated Restoration of Regenerative Potential to Aged Muscle." Science 302(5650): 1575-1577, November 28, 2003.

Couzin, J. "Is Long Life in the Blood?" Science 302(5644): 1373-1375, October 17, 2003.

Dominus, S. "Life in the Age of Old, Old Age." New York Times. February 22, 2004, sec. 6, p. 26.

Doyle, J. "The Burden of Immortality: Slowing the Aging Process Gives Birth to Ethical, Sociological Questions." San Francisco Chronicle. April 25, 2004, p. E1.

Finch, C. and Crimmins, E. "Inflammatory Exposure and Historical Change in Human Life-Spans." Science 305(5691): 1736-1739, September 17, 2004.

Hall, S. Merchants of Immortality: Chasing the Dream of Human Life Extension. Boston, MA: Houghton Mifflin Company, 2003.

Hekimi, S. and Guarente, L. "Genetics and the Specificity of the Aging Process." Science 299(5611): 1351-1354, February 28, 2003.

Kipling, D., et al. "What Can Progeroid Syndromes Tell Us About Human Aging?" Science 305(5689): 1426-1431, September 3, 2004.

LaFee, S. "So, You Want to Live to be 125?" Copley News Service. December 12, 2004, http://www.copleynews.com (accessed December 13, 2004).

Longo, V. and Finch, C. "Evolutionary Medicine: From Dwarf Model Systems to Healthy Centenarians?" Science 299(5611): 1342-1346, February 28, 2003.

Mueller, L. "A Demographic View of Limits on Life-Span." Science 301(5637): 1185, August 29, 2003.

Olshansky, S. and Carnes, B. The Quest for Immortality: Science at the Frontiers of Aging. New York: W.W. Norton & Company, 2001.

Redfearn, S. "Joy.Or Pain?To Some Extent, How You Feel for the Rest of Your Life Is Under Your Control. Here's What Science Shows Can Boost Your Chances of Living Healthier, Happier and Longer." Washington Post. August 2, 2005, p. F1.

Tatar, M., et al. "The Endocrine Regulation of Aging by Insulin-like Signals." Science 299(5611): 1345-1351, February 28, 2003.

Scott, J. "Life at the Top in America Isn't Just Better, It's Longer." New York Times. May 16, 2005, p. A1.

Woods, M. "Walking Towards a Better Memory." Toledo Blade. August 3, 2005, p. D1.

Literary Sources

Albee, E. Three Tall Women: A Play in Two Acts. New York: Dutton, 1995.

Bernlef, J. Out of Mind. Translation by Adrienne Dixon. London, U.K.: Faber, 1989.

Cicero. On Old Age. The Harvard Classics. http://www.bartleby. com/9/2/1.html (accessed August 24, 2005).

Delinksy, B. Shades of Grace. New York: Harper & Collins, 1996.

Dische, I. Strange Traffic: Stories. New York: Metropolitan Books, 1995.

Ignatieff, M. Scar Tissue. New York: Farrar, Strauss & Giroux, 1994.

Lewis, C. S. A Grief Observed. New York: Bantam Books, 1980.

President's Council on Bioethics. Being Human: Readings from the President's Council on Bioethics. Washington, D.C.: The President's Council on Bioethics, 2003.

Shakespeare. King Lear in Harbage, A., ed., William Shakespeare: The Complete Works. New York: Penguin Books, Inc. 1969.

Siddons, A. Fault Lines. New York: Harper & Collins, 1995.

Xenophon. Apology of Socrates. Translated by H. G. Dakyns. Project Gutenberg e-text #1171. January 1988.

Miscellaneous

Alzheimer's Association. Ethical Issues in Alzheimer's Disease. Chicago, IL: Alzheimer's Disease and Related Disorders Association, Inc., 2001.

Callahan, D., et al., eds. A World Growing Old: The Coming Health Care Challenges. Washington, D.C.: Georgetown University Press, 1997.

Chong, L., et al. "Deconstructing Aging." Science 305(5689): 1419-1419, September 3, 2004.

Federal Health Programs and Those Who Cannot Care for Themselves: What Are Their Rights, and Our Responsibilities?Hearing Before the Senate Subcommittee on Criminal Justice, Drug Policy, and Human Resources, 108th Congress. Statements of the Honorable Dave Weldon, MD, Member of the U.S. House of Representatives; Mr. Donald A. Young, MD, Deputy Assistant Secretary for Planning and Evaluation, Department of Health and Human Services; Ms. Diane Coleman, J.D., President, Not Dead Yet; Mr. Bob Sedlmeyer; Ms. Kate Adamson; and Mr. Robert Destro, Professor, Columbus School of Law, Catholic University of America. April 19, 2005.

Fukuyama, F. Our Posthuman Future: Consequences of the Biotechnology Revolution. New York: Farrar, Straus, and Giroux, 2002.

Helmuth, L. "The Wisdom of the Wizened." Science 299(5611): 1300-1302, February 28, 2003.

Huget, J. "Blogging Through the Ages." Washington Post. July 25, 2005, p. F01.

Martin, G., et al. "Research on Aging: The End of the Beginning." Science 299(5611): 1339-1341, February 28, 2003.

Public Policy

Andrews, E. "Greenspan Urges Congress To Rein In Federal Benefits." New York Times. April 22, 2005, sec. C, p. 2.

Binstock, R., et al., eds. Dementia and Aging: Ethics, Values, and Policy Choices. Baltimore, MD: Johns Hopkins University Press, 1992.

Bonnie, R. and Wallace, R., eds. National Research Council of the National Academies. Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America. Washington, D.C.: National Academy Press, 2002.

Burt, R. "The Aging Society: Policy Implications." Presented at the September 10, 2004 meeting of the President's Council on Bioethics. Washington, D.C., available online at http://www.bioethics.gov.

Callahan, C. and Mays, J. "Estimating the Number of Individuals in the U.S. Without Health Insurance." Report by Actuarial Research Corporation for U.S. Department of Health and Human Services. http://aspe.hhs.gov (accessed April 8, 2005).

Callahan, D. "Medical Technology, Innovation, and the Nature of Medical Progress."  Presented at the March 3, 2005 meeting of the President's Council on Bioethics. Washington, D.C., available at online at http://www.bioethics.gov.

Callahan, D. Setting Limits: Medical Goals in an Aging Society. Washington, D.C.: Georgetown University Press, 2000.

Carson, B. "Diagnosing the Crisis in Health Care" in The Big Picture: Getting Perspective on What's Really Important in Life. Grand Rapids, MI: Zondervan, 1999, pp. 218-257.

Chopko, M. "Responsible Public Policy at the End-of-Life." 75 University of Detroit Mercy Law Review 557, Spring 1998.

Friedland, R. "Policy Options for Caregivers." Presented at the September 8, 2005 meeting of the President's Council on Bioethics. Washington, D.C., available online at http://www.bioethics.gov.

Friedland, R. and Feder, J. "The Value of Social Security and Medicare to Families." Generations, Spring 2005.

Fumento, M. Bioevolution: How Biotechnology Is Changing Our World. San Francisco, CA: Encounter Books, 2003.

Glendon, M. "Challenges Posed by the Changing Age Structure and Dependency Ratio in the United States." Presented at the September 10, 2004 meeting of the President's Council on Bioethics, Washington, D.C., available online at http://www.bioethics.gov.

Gross, J. "The Middle Class Struggles in the Medicaid Maze." New York Times. July 9, 2005, sec. B, p. 1.

Hendricks J. "Public Policies and Old Age Identity." Journal of Aging Studies 18: 245-260, 2004.

Hilfiker, D. "Allowing the Debilitated to Die, Facing our Ethical Choices." New England Journal of Medicine 308(12): 716-719, 1983.

International Longevity Center. Redesigning Healthcare for an Older America: Seven Guiding Principles. New York: International Longevity Center, 2004.

Johnson, S. "End-of-Life Decision Making: What We Don't Know, We Make Up; What We Do Know, We Ignore." 31 Indiana Law Review 13, 1998.

Kuttner, R. "A New Model for Elder Care." Boston Globe. May 11, 2005, p. A17.

Lubitz, J. and Prihoda, R. "Use and Cost of Medicare Services in the Last Two Years of Life." Health Care Financing Review 5: 117-131, 1984.

Lynn, J. Sick to Death: And Not Going to Take It Anymore! Los Angeles, CA: University of California Press, 2004.

Organization for Economic Cooperation & Development. "Ensuring Quality Long-term Care for Older People." March 16, 2005. http://www.oecd.org (accessed May 2, 2005).

Sternberg, S. "A Bitter Pill for Older Patients: Excluded from Drug Trials, the Elderly Face Unknown Risks." USA Today. May 5, 2005, p. 1D.

Steuerle, C. E. and Van de Water, P., "Long-Run Budget Projections and Their Implications for Funding Elderly Entitlements" in Altman, S. and Shactman, D., eds., Policies for an Aging Society. Baltimore, MD: Johns Hopkins University Press, 2002.

Temkin-Greener, H., et al. "The Use and Cost of Health Services Prior to Death: A Comparison of the Medicare-only and the Medicare-Medicaid Elderly Populations." Milbank Quarterly 70(4): 679-701, 1992.

Thomas, R. "Eldercare: The Challenge of the Twenty-First Century." Harvard Generations Policy Journal, 2004, http://www.genpolicy.com (accessed May, 2004).

Ubel, P. Pricing Life: Why It's Time for Health Care Rationing. Cambridge, MA: MIT Press, 2000.

U.S. Congress, Office of Technology Assessment. Life-Sustaining Technologies and the Elderly, OTA-BA-306. Washington, D.C.: U.S. Government Printing Office, July 1987.

Sources of Information and Support

Institutional

Government

Administration on Aging
Washington, D.C. 20201
(202) 619-0724
http://www.aoa.dhhs.gov
State and Area Agencies on Aging Locator: http://www.aoa.gov/eldfam/ How_To_Find/Agencies/Agencies.asp
Elders & Families Website: http://www.aoa.gov/eldfam/eldfam.asp

Agency for Healthcare Research and Quality
Office of Communications
540 Gaither Rd., Ste. 2000
Rockville, Maryland 20850
(301) 427-1364
http://www.ahrq.gov
AHRQ supports research on health care outcomes; quality; cost, use, and access.

Alzheimer's Disease Education and Referral Center
P.O. Box 8250 Silver Spring, Maryland 20907-8250
1-800-438-4380
http://www.alzheimers.org
Created by Congress to "compile, archive, and disseminate information concerning Alzheimer's disease" for health professionals and the public.

Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, Maryland 21244-1850
1-800-MEDICARE
(410)-786-3000
Main Website: http://www.cms.hhs.gov
Medicare Website: http://www.medicare.gov
Medicaid Consumer Information Website: http://www.cms.hhs.gov/ medicaid/consumer.asp

Department of Health and Human Services
200 Independence Ave., S.W. Washington, D.C. 20201
1-877-696-6775               
(202)-619-0257
Main Website: http://www.hhs.gov/
National Strategy for Suicide Prevention- Suicide Among the Elderly Website: http://www.mentalhealth.samhsa.gov/suicideprevention/elderly.asp

Department of Veterans Affairs
810 Vermont Ave., N.W. Washington, D.C. 20420
1-800-827-1000
Main Website: http://www.va.gov/
National Cemetery Administration Website: http://www.cem.va.gov

Eldercare Locator, U.S. Administration on Aging
1-800-677-1116
http://www.eldercare.gov/
The Eldercare Locator connects older Americans and their caregivers with sources of information on senior services. The service links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers.

MedLinePlus Health Information

U.S. National Library of Medicine
8600 Rockville Pike
Bethesda, Maryland 20894
(888) FIND-NLM  (888) 346-3656
http://www.nlm.nih.gov/medlineplus

National Institutes of Health

National Institutes of Health
9000 Rockville Pike Bethesda, Maryland 20892
(301) 496-4000
Main Website: http://www.nih.gov
NIH Senior Health Website: http://nihseniorhealth.gov/listoftopics.html
Includes: The National Center for Complimentary and Alternative Medicine
1-888-644-6226  http://nccam.nih.gov/
and The National Institute of Neurological Disorders and Stroke
(800) 352-9424  http://www.ninds.nih.gov/

National Institute on Aging
Building 31, Rm. 5C27
31 Center Drive, MSC 2292 Bethesda, Maryland 20892
http://www.nia.nih.gov/
NIA leads the federal effort on aging research and its site includes written materials and other educational resources.

National Library of Medicine
8600 Rockville Pike
Bethesda, Maryland 20894
(888) FIND-NLM
(301) 594-5983
http://www.nlm.nih.gov/

Senate Special Committee on Aging
G31 Dirksen Senate Office Building
Washington, D.C. 20510
(202) 224-5364
http://www.senate.gov/~aging

Senior Community Service Employment Program, Department of Labor
Employment and Training Agency of the U.S. Department of Labor
Frances Perkins Building
200 Constitution Ave., N.W.
Washington, D.C. 20210
1-877-US-2JOBS
http://www.doleta.gov/seniors/

Senior Corps
1201 New York Ave., N.W.
Washington, D.C. 20525
(202) 606-5000
(202) 565-2799
http://www.seniorcorps.org/
Network of local volunteer opportunities for persons 55 and older organized by the federal government.

Social Security Administration
Office of Public Inquiries
Windsor Park Building
6401 Security Blvd.
Baltimore, Maryland 21235
1-800-772-1213
http://www.ssa.gov

White House Conference on Aging
4350 East-West Highway, Ste. 300
Bethesda, Maryland 20814
(301) 443-9462
http://www.whcoa.gov/

Private

AARP
601 E St., N.W.
Washington, D.C. 20049
1-888-OUR-AARP
http://www.aarp.org
AARP is a nonprofit, membership organization for people age 50 and over that provides health information, advocates in the public policy arena, and supplies information on aging resources.

Aging with Dignity
P.O. Box 1661
Tallahassee, Florida 32302
1-888-5-WISHES 
http://www.agingwithdignity.org
Provides the Five Wishes Living Will.

Alliance for Aging Research
2021 K St., N.W., Ste. 305
Washington, D.C. 20006
(202) 293-2856
http://www.agingresearch.org/
Promotes medical and behavioral research into the aging process and works toward improving baby boomer health by "developing, implementing and advocating programs in research, professional and consumer health education and public policy."

Alliance for Retired Americans
888 16th St., N.W.
Washington, D.C. 20006
(202) 974-8222
http://www.retiredamericans.org/

Alzheimer's Association
225 N. Michigan Ave., Fl. 17
Chicago, Illinois 60601-7633
1-800-272-3900  312-335-8700
http://www.alz.org/

American Academy of Hospice and Palliative Medicine
4700 W. Lake Ave.
Glenview, Illinois 60025
(847) 375-4712
http://www.aahpm.org/

American Academy of Pain Medicine
4700 W. Lake
Glenview, IL 60025
(847) 375-4731
http://www.painmed.org/

American Association for Geriatric Psychiatry
7910 Woodmont Ave., Ste. 1050
Bethesda, Maryland 20814-3004
(301) 654-7850
Main Website: http://www.aagponline.org/
Geriatric Mental Health Foundation (GMHF) Website: http://www.gmhf online.org/gmhf/
A national association representing and serving members of the field of geriatric psychiatry. The Foundation website includes mental health information for older adults and their families, including finding a geriatric psychiatrist.

American Association of Homes and Services for the Aging
2519 Connecticut Ave., N.W.
Washington, D.C. 20008-1520 (202) 783-2242
http://www.aahsa.org/
The AAHSA represents over 5,600 not-for-profit nursing homes, retirement communities, assisted living facilities, and home and community-based service providers. The site includes consumer information and member information.

American Association of Suicidology
5221 Wisconsin Ave., N.W.
Washington, D.C. 20015
(202) 237-2280
http://www.suicidology.org
National 24-Hour Suicide Prevention Lifeline: 1-800-273-TALK
Also provides referrals for mental health professionals, substance abuse assistance, housing, etc.

American Bar Association Commission on Law and Aging
740 15th St., N.W.
Washington, D.C. 20005-1022
(202) 662-8690
http://www.abanet.org/aging/

American Chronic Pain Association
P.O. Box 850 Rocklin, California 95677
1-800-533-3231
http://www.theacpa.org/
This organization coordinates local groups that provide support for those suffering from chronic pain. The site also provides educational materials.

American Federation for Aging Research
70 West 40th St., 11th Floor
New York, New York 10018
(888) 582-2327  (212) 703-9977
http://www.afar.org/

American Geriatrics Society (AGS)
The Empire State Building
350 Fifth Ave., Ste. 801
New York, New York 10118
1-800-563-4916  (212) 755-6810
Main Web Site: http://www.americangeriatrics.org
Foundation for Health in Aging Website: http://www.healthinaging.org/

American Health Assistance Foundation
22512 Gateway Center Dr.
Clarksburg, Maryland 20871
1-800-437-2423  (301) 948-3244
http://www.ahaf.org
A nonprofit funding research on age-related and degenerative diseases, educating the public, and providing emergency financial assistance to Alzheimer's disease patients and their caregivers.

American Hospice Foundation
2120 L St., N.W., Ste. 200
Washington, D.C. 20037
(202) 223-0204
http://www.americanhospice.org
"Provides a searchable database of hospices, teaches courses and workshops on end of life issues for consumers, providers, and hospices, and researches consumer needs."

American Physical Therapy Association
Section on Geriatrics
1111 North Fairfax St.
Alexandria, Virginia 22314
1-800-999-2782 ext.3238
http://www.geratricspt.org

American Society on Aging
833 Market St., Ste. 511 San Francisco, California 94103
(800) 537-9728  (415) 974-9600
Main Website: http://www.asaging.org/
Lifetime Education and Renewal Network Website: http://www.asaging.org /learn/index.html
An association for professionals in the aging fieldoffering educational programming, publications and training.

Americans for Better Care of the Dying
P.O. Box 5578
Washington, D.C. 20016
http://www.abcd-caring.org/
Advocating for "public policy reforms such as improved pain management, better financial reimbursement systems, enhanced continuity of care, and support for family caregivers."

Assisted Living Federation of America
11200 Waples Mill Rd, Ste. 150
Fairfax, Virginia 22030
(703) 691-8100
http://www.alfa.org/
The site provides consumer information on assisted living, including lists of residences.

Association for Death Education and Counseling
60 Revere Drive, Ste. 500
Northbrook, Illinois 60062
(847) 509-0403
http://www.adec.org

Center for Advanced Illness Coordinated Care
113 Holland Avenue, 11T
Albany, New York 12208
(518) 626-6125
http://www.coordinatedcare.net/
A non-profit educational organization that provides training and consultation in the AICC Program, a 6-visit intervention of structured conversations and specialized care coordination for patients with advanced illness and their families.

Center for Home Care Policy and Research
Visiting Nurse Service of New York
107 East 70th St.
New York, New York 10021
(212) 609-1531
http://www.vnsny.org/research/

Center on an Aging Society
Health Policy Institute
Georgetown University
2233 Wisconsin Avenue, NW, Suite 525
Washington, D.C. 20007
(202) 687-9840
http://www.aging-society.org

Center to Advance Palliative Care
1255 Fifth Ave., Ste. C-2
New York, New York 10029
(212) 201-2670
http://www.capc.org/
Supported by the Robert Wood Johnson Foundation and the Mount Sinai School of Medicine (NY), "CAPC provides health care professionals with the tools, training, and technical assistance necessary to start and sustain palliative care programs in hospitals and other health care settings."

Children of Aging Parents
P.O. Box 167
Richmond, Virginia 18954
1-800-227-7294
http://www.caps4caregivers.org/
A nonprofit offering assistance to caregivers of the elderly or chronically ill by providing information, referrals and support on caregiving, including respite care, and housing.

City of Hope Pain/Palliative Care Resource Center
1500 East Duarte Rd.
Duarte, California 91010
(626) 359-8111 ext. 63829
http://www.cityofhope.org/prc
A clearinghouse collecting and "disseminating information and resources to assist others in improving the quality of pain management and end of life care (such as) pain assessment tools, patient education materials, quality assurance materials, end of life resources, research instruments." An index of documents is available for downloading from their website.

Family Caregiver Alliance
180 Montgomery St., Ste. 1100
San Francisco, California 94104
(800) 445-8106
(415) 434-3388
http://www.caregiver.org/
Support group for caregivers of those suffering from Alzheimer's and other brain disorders.

Fisher Center for Alzheimer's Research Foundation
One Intrepid Square
West 46th Street & 12th Ave.
New York, New York 10036
1-800-ALZINFO
http://www.alzinfo.org/

Funeral Consumers Alliance
33 Patchen Rd.
South Burlington, Vermont 05403
1-800-765-0107
http://www.funerals.org/
A nonprofit organization that provides educational materials on funeral choices, refers individuals to appropriate societies and agencies supplying local services, and serves as a consumer advocate for reforms on the national, state, and local levels.

Generations United
1333 H St., N.W., Ste. 500 W
Washington, D.C. 20005
(202) 289-3979
http://www.gu.org
A membership organization promoting intergenerational strategies, programs, and public policies. It also provides training for practitioners who work with grandparents caring for grandchildren.

Gerontological Society of America
1030 15th St., N.W., Ste. 250
Washington, D.C. 20005
Main Telephone: (202) 842-1275
National Academy on an Aging Society: (202) 408-3375
Main Website: http://www.geron.org/
National Academy on an Aging Society Web Site: http://www.agingsociety.org/

Global Action on Aging
P.O. Box 20022
New York, New York 10025
(212) 557-3163
http://www.globalaging.org/
A non-profit organization with special consultative status with the United Nations Economic and Social Council. It carries out research on emerging topics and publishes the results on its website.

Grantmakers In Aging
7333 Paragon Rd., Ste. 220
Dayton, Ohio 45459-4157
(937) 435-3156
http://www.giaging.org/
A professional organization for grantmakers working for older adults.

Gray Panthers
733 15th St., N.W., Ste. 437
Washington, D.C. 20005
1-800-280-5362
(202) 737-6637
http://www.graypanthers.org
Think tank concerned with forced retirement, government programs, health insurance, and nursing home abuse.

HelpAge International
P.O. Box 32832
London N1 9ZN, United Kingdom
011-44-20-7278-7778
http://www.helpage.org/
Focuses on the health status and other needs of older adults in developing countries.

Hospice and Palliative Nurses Association
One Penn Center West, Ste. 229
Pittsburgh, Pennsylvania 15276
(412) 787-9301
http://www.hpna.org

Hospice Association of America
228 Seventh Street, S.E.
Washington, D.C. 20003
(202) 546-4759
http://www.nahc.org/haa/
A national organization representing more than 2,800 hospices and thousands of caregivers and volunteers who serve terminally ill patients and their families. Its website provides basic consumer information about hospice care and the hospice industry.

Hospice Education Institute
3 Unity Square
P.O. Box 98
Machiasport, Maine 04655-0098
1-800-331-1620  (207) 255-8800
http://www.hospiceworld.org
An independent, not-for-profit organization, serving members of the public and health care professionals with information and education about caring for the dying and bereaved. It provides information about good hospice and palliative care, information and referrals to hospices and palliative care organizations in the U.S., and help discussing issues related to caring for the dying and bereaved.

Hospice Foundation of America
1621 Connecticut Ave., N.W., Ste. 300
Washington, D.C. 20009
1-800-854-3402
http://www.hospicefoundation.org
With programs for heath care professionals, and individuals "who are coping with issues of caregiving, hospice selection, terminal illness, and grief."

Institute for the Study of Aging
1414 Ave. of the Americas, Ste. 1502
New York, New York 10019
(212) 935-2402
http://www.aging-institute.org/
www.hospicecare.com

Intergenerational Innovations
3200 N.E. 125th St., Ste. 1
Seattle, Washington 98125
(206) 525-8181
http://www.intergenerate.org
A nonprofit organization that develops and implements programs and activities connecting youth and the elderly in volunteer service to each other.

International Longevity Center
60 E. 86th St.
New York, New York 10028
(212) 288-1468
http://www.ilcusa.org/

International Psychogeriatric Association
550 Frontage Rd., Ste. 3759
Northfield, Illinois 60093
United States
(847) 501-3310
http://www.ipa-online.org

John Douglas French Alzheimer's Foundation
11620 Wilshire Blvd., Suite 270
Los Angeles, California 90025
(310) 445-4656
http://www.jdfaf.org/

Kaiser Family Foundation
2400 Sand Hill Rd.
Menlo Park, California 94025
(650) 854-9400
Main Website: http://www.kff.org/
State Health Facts Website: http://www.statehealthfacts.kff.org/
Conducts policy research on health and health policy issues. The website also provides resources on the health benefits available in each state.

Kennedy Institute of Ethics at Georgetown University
Georgetown University
Washington, D.C. 20057
(202) 687-8099
http://kennedyinstitute.georgetown.edu/

Little Brothers-Friends of the Elderly
954 W. Washington Blvd., 5th Fl.
Chicago, Illinois 60607-2224
(312) 829-3055
http://www.littlebrothers.org
A national, non-profit, volunteer-based organization "committed to relieving isolation and loneliness among the elderly."

Meals On Wheels Association of America
203 S. Union St.
Alexandria, Virginia 22314
(703) 548-5558
http://www.mealsonwheels.org/
Includes a list of local chapters of the volunteer program that provides meals to the homebound.

Medicare Rights Center
1460 Broadway, 17th Floor
New York, New York 10036
(212) 869-3850
http://www.medicarerights.org
An independent source of health care information and assistance for people with Medicare, "MRC provides telephone hotline services, teaches people with Medicare and those who counsel them, and brings the consumer voice to the national policy debate."

Michigan Center on the Demography of Aging
P.O. Box 1248
Ann Arbor Michigan 48106-1248
(734) 647-5000
http://www.icpsr.umich.edu/NACDA/
Hosts the National Archive of Computerized Data on Aging.

National Academy of Elder Law Attorneys, Inc.
1604 North Country Club Rd.
Tucson, Arizona 85716
(520) 881-4005
http://www.naela.org/
Provides a database of elder law attorneys practicing in the U.S.

National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, Maryland 20814
(301) 718-8444
http://www.cargiving.org
A non-profit coalition of national organizations working on family caregiving issues.

National Asian Pacific Center on Aging
1511 Third Ave., Ste. 914
Seattle, Washington 98101
(206) 624-1221
http://www.napca.org

National Association of Area Agencies on Aging
1730 Rhode Island Ave, N.W., Ste. 1200
Washington, D.C. 20036
(202) 872-0888
http://www.n4a.org

National Association of Professional Geriatric Care Managers
1604 N. Country Club Rd.
Tucson, Arizona 85716
(520) 881-8008
http://www.caremanager.org/
A non-profit association of professional practitioners "working towards the highest quality of care for the elderly and their families." They provide a pamphlet detailing what to look for when hiring a care manager.

National Caucus and Center on Black Aged
1220 L St., N.W., Ste. 800
Washington, D.C. 20005
(202) 637-8400
http://www.ncba-aged.org

National Center on Women & Aging
The Heller School for Social Policy and Management
Brandeis University
Waltham, MA 02454-9110
1-800-929-1995  (781) 736-3866
http://heller.brandeis.edu/national/

National Chronic Pain Outreach Association
P.O. Box 274
Millboro, Virginia 24460
(540) 862-9437
http://www.chronicpain.org/
A non-profit organization seeking "to lessen the suffering of people with chronic pain by educating pain sufferers, health care professionals, and the public about chronic pain and its management through written materials and support groups."

National Council on the Aging
300 D St., S.W., Ste. 801
Washington, D.C. 20024
(202) 479-1200
Main Site: http://www.ncoa.org BenefitsCheckUp Site: http://www.benefitscheckup.org
A national network of organizations including senior centers, adult day service centers, local agencies on aging, faith congregations, senior housing facilities, employment services, and other consumer organizations that hosts a website detailing government benefit programs.

National Family Caregivers Association
10400 Connecticut Ave., Ste. 500
Kensington, Maryland 20895-3944
1-800-896-3650  (301) 942-6430
http://www.thefamilycaregiver.org/

National Gerontological Nursing Association
7794 Grow Dr.
Pensacola, Florida 32514
1-800-723-0560
(850) 473-1174
http://www.ngna.org/

National Hispanic Council on Aging
1341 Connecticut Ave., 4th Fl.
Washington, D.C. 20036
(202) 429-0787
http://www.nhcoa.org

National Hospice & Palliative Care Organization
1700 Diagonal Rd., Ste. 625
Alexandria, Virginia 22314
1-800-658-8898
(703) 837-1500
Main Web Site: http://www.nhpco.org/
Caring Connections Website: http://www.caringinfo.org/
Includes resources on advance directives, grief loss, caregiving, financial issues, hospice and palliative care. The site provides free, state-specific advance directive documents and instructions.

National Indian Council on Aging
10501 Montgomery Blvd., N.E., Ste. 210
Albuquerque, New Mexico 87111-3846
(505) 292-2001
http://www.nicoa.org

Nationsal Network of Estate Planning Attorneys
10831 Old Mill Rd., Ste. 400
Omaha, Nebraska 68154
1-800-638-8681
http://the.nnepa.com/public/

National Pain Education Council
1010 Washington Blvd., 7th Fl.
Stamford, Connecticut 06901
(888) 536-7545
http://www.npecweb.org/

National Pain Foundation
300 E. Hampden Ave., Ste. 100
Englewood, Colorado 80113
http://www.painconnection.org/

National Policy & Resource Center on Nutrition & Aging
Florida International University, OE 200
Miami, Florida 33199
(305) 348-1517
http://www.fiu.edu/~nutreldr

National Resource Center on Native American Aging
P.O. Box 9037
Grand Forks, North Dakota 58202-9037
(701) 777-3848
http://www.med.und.nodak.edu/depts/rural/nrcnaa/index.html

National Resource Center on Supportive Housing and Home Modification
Andrus Gerontology Center, University of Southern California
3715 McClintock Avenue
Los Angeles, California 90089
(213) 740-1364
http://www.homemods.org/

National Self-Help Clearinghouse
Graduate School and University Center of the City University of New York
365 5th Ave., Ste. 3300
New York, New York 10016
(212) 817-1822
http://www.selfhelpweb.org/
A not-for-profit organization providing support for self-help groups and referral services for individuals.

National Senior Citizens Law Center
1101 14th St., N.W., Ste. 400
Washington, D.C. 20005
(202) 289-6976
http://www.nsclc.org

Older Women's League
1750 New York Ave., N.W., Ste. 350
Washington, D.C. 20006
1-800-825-3695
(202) 783-6686
http://www.owl-national.org

Palliative Care Policy Center
RAND Health
1200 South Hayes St., Ste. 6402
Arlington, Virginia 22202-5050
(703) 413-1100 ext. 5457
http://www.medicaring.org/
Providing support to "hospitals, nursing homes, health systems, hospices, and other organizations that serve individuals nearing the end of life," in part by providing a database of information designed to "help improve the experience of dying patients and their families."

POLST
"Physician Orders for Life-Sustaining Treatment"
Center for Ethics in Health Care
Oregon Health & Science University
3181 S.W. Sam Jackson Park Rd.
Mailcode: UHN-86
Portland, Oregon 97239-3098
Phone: (503) 494-3965
http://www.polst.org
See Chapter 2 of our report for more information on this document, designed to help health care professionals honor the end-of-life treatment desires of patients.

Rainbow Bridge
P.O. Box 12675
Denver, Colorado 80212-0675
(303) 623-1176
http://www.rainbowb.org/
Rainbow Bridge is a non-profit dedicated to improving the lives of elders in nursing homes through intergenerational relationships with children. Over 13,000 children have participated since 1994.

Retirement and Intergenerational Studies Laboratory
The Strom Thurmond Institute of Government & Public Affairs
Clemson University
Silas Pearman Boulevard
Clemson, South Carolina 29634
(864) 656-4700
http://www.strom.clemson.edu/teams/risl/index.html
The Retirement and Intergenerational Studies Laboratory provides resources and assistance to community organization seeking to add intergenerational programs to their activities.

Rural Assistance Center
P.O. Box 9037
Grand Forks, North Dakota 58202
1-800-270-1898
http://www.raconline.org
RAC helps rural communities and other rural stakeholders access the full range of available programs, funding, and research that can enable them to provide quality health and human services to rural residents. It offers customized assistance, searchable databases, and research publications.

SeniorNet
1171 Homestead Rd., Ste. 280
Santa Clara, California 95050
(408) 615-0699
http://www.seniornet.org
A non-profit providing older adults education for and access to computer technologies. The organization supports over 240 Learning Centers throughout the U.S., publishes a quarterly newsletter and a variety of instructional materials, offers discounts on computer-related and other products and services, holds regional conferences, and operates numerous online discussion boards.

Share the Care
P.O. Box 957
Murray Hill Station
New York, New York 10156
http://www.sharethecare.org
Anon-profit organization dedicated to educating the public, health professionals and clergy about group caregiving as an option for meeting the needs of the seriously ill or dying, those in rehabilitiation, the elderly in need of assistance and their caregivers. Provides a blueprint for how to take a group of friends, relatives, neighbors, coworkers, and acquaintances and turn them into a "caregiver family."

Temple University Center for Intergenerational Learning
1601 North Broad St., Room 206
Philadelphia, Pennsylvania 19122
(215) 204-6970
http://www.temple.edu/cil/
A national resource for intergenerational educational programming.

University of California-Irvine Institute for Brain Aging and Dementia
23461 El Toro Rd., Ste. 150
Laguna Woods, California 92653
(949) 768-3635
http://www.alz.uci.edu/

University of North Texas Media Library Film and Video Collection on Aging
P.O. Box 305190
Denton, Texas 76203
(940) 565-2484
http://www.library.unt.edu/media/fvca.htm
Their collection is home to over 700 audio-visual titles concerned with different aspects of aging and long-term care available for rent by educational institutions.

U.S. Living Will Registry
523 Westfield Ave., P.O. Box 2789
Westfield, New Jersey 07091-2789
1-800-LIV-WILL
http://www.uslivingwillregistry.com/
A privately held organization that electronically stores advance directives, organ donor information and emergency contact information, and makes them available to health care providers across the country 24 hours a day through an automated system. Registration is free when through a member health care provider or community partner.

Volunteer Services of America
1660 Duke St.
Alexandria, Virginia 22314
(800) 899-0089
(703) 341-5000
http://www.voa.org
Volunteers of America is a national, nonprofit, spiritually based organization providing local human service programs and opportunities for individual and community involvement. It provides educational information and assisted living resources.

Well Spouse Association
63 West Main St., Ste. H
Freehold, New Jersey 07728
1-800-838-0879
http://www.wellspouse.org/

Women's Institute for a Secure Retirement
1725 K St., N.W., Ste. 201
Washington, D.C. 20006
(202) 393-5452
http://www.wiser.heinz.org/
WISER is a non-profit organization that provides women with the skills and information they need to improve their economic circumstances and plan for a financially sound retirement. It operates through workshops, seminars, newsletters, reports, fact sheets, consumer guides and its website.

World Health Network
American Academy of Anti-Aging Medicine
1510 W. Montana St.
Chicago, Illinois 60614
(773) 528-1000
http://www.worldhealth.net/
A non-profit organization with a membership of 11,500 physicians and scientists from 65 countries dedicated to the advancement of therapeutics related to the science of longevity medicine. A4M educates physicians, scientists, and members of the public on anti-aging issues.

Web-Based Resources

Ageing and Life Course Programme  (World Health Organization)
http://www.who.int/hpr/ageing/index.htm
The WHO Ageing and Life Course website highlights global issues in aging, including elder abuse, health care access and quality, and age-friendly standards.

AgeVenture News Service
http://www.demko.com/
AgeVenture seeks to communicate scientific advances in aging research by reporting peer-reviewed findings, researching retirement lifestyle trends, and publishing self-help resources.

Alzheimer Research Forum
http://www.alzforum.org/
The Alzheimer Research Forum was founded in 1996 to create an online scientific community dedicated to developing treatments and preventions for Alzheimer's disease. Access to the web site is free and available to the public.

Alzheimer's Solutions
http://www.caregiving-solutions.com/
Hosted by the son of an Alzheimer's patient, this site provides general information about the disease.

American Self-Help Group Clearinghouse
http://www.mentalhelp.net/selfhelp/selfhelp.php?id=858
The Self-Help Sourcebook Online is a searchable database that includes information on over 1,000 national, international and demonstrational model self-help support groups, ideas for starting groups, and opportunities to link with others to develop new national or international self-help groups.

Beyond Indigo
http://www.beyondindigo.com/
Beyond Indigo provides grief support services and related information.

Beyond the Veil
http://www.beyondtheveil.net
Provides resources on dying, caregiving, spirituality, funerals, advance directives, and organ donation.

CareGuide@Home
http://www.eldercare.com/
Run by a care management company offering products and services for sale, the website also provides free information on caregiving and aging.

Death and Dying
http://www.online96.com/seniors/dying.html
Provides links to resources on aging, death, dying, hospice, funerals, grief, and more.

Dying Well
http://www.dyingwell.org/
Dr. Ira Byock, long-time palliative care physician and advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine, provides written resources and referrals to organizations, web sites and books to "empower persons with life threatening illness and their families to live fully".

ElderCare Online
http://www.ec-online.net/
ElderCare Online provides knowledge, tools and community to help caregivers improve the quality of life for both themselves and their aging loved ones.

ElderNet
http://www.eldernet.com
A seniors' guide to health, housing, legal, financial, retirement, lifestyles, news and entertainment information on the web.

End of Life/ Palliative Education Resource Center
http://www.eperc.mcw.edu/index.htm
EPERC shares educational resource material among health professional educators involved in palliative care education.

Ethical Wills
http://www.ethicalwill.com/
Dr. Barry K. Baines, a family physician and medical director of a home-based hospice program in Minnesota, hosts this site, which provides resources to help people "write and preserve their legacy of values at any stage of life."

Ethnic Elders Care
http://www.ethnicelderscare.net/
Ethnic Elders Care seeks "to increase public awareness of dementia among ethnic elders and to optimize the quality of life of family caregivers and ethnic elders with Alzheimer's disease and related disorders."

Finding Our Way: Living with Dying in America
http://www.findingourway.net
Archives for a 15-week articles series that ran in 160 newspapers in 2001.

Friendly4Seniors
http://www.friendly4seniors.com
With a database of over 2,000 senior-related listings.

Geriatric Web
http://geriatricweb.sc.edu/
GeriatricWeb is a web-based geriatric digital library intended to be used in the education of health care professionals and in the clinical care of the older patient.

GeroNurse Online
http://www.geronurseonline.org/
GeroNurseOnline is a comprehensive website providing current best practice information on care of older adults. It is hosted by the American Nurses Association.

GriefNet, Inc.
http://www.griefnet.org/
An internet community of persons dealing with grief, death, and major loss, the site hosts numerous email support groups and two web sites offering "an integrated approach to on-line grief support."

GrowthHouse.org
http://www.growthhouse.org
Growth House, Inc., provides links to resources for life-threatening illness and end-of-life care. Includes a search engine that gives access to a comprehensive collection of reviewed resources for end-of-life care.

HealthFinder
http://www.healthfinder.gov
A guide to government agencies, publications, databases, non-profit organizations, and support groups compiled by the U.S. Department of Health and Human Services.

Health and Age
http://www.healthandage.com/
Written and edited by medical professionals this site presents health information that "empowers people of all ages to identify, understand, prevent, treat, and communicate effectively with their health professionals" about their medical conditions. It is funded by Health Education Foundation (WHEF), an independent, non-profit organization.

Health and Retirement Study
http://hrsonline.isr.umich.edu/
The University of Michigan Health and Retirement Study (HRS) surveys more than 22,000 Americans over the age of 50 every two years. Supported by the National Institute on Aging, the study paints an emerging portrait of an aging America's physical and mental health, insurance coverage, financial status, family support systems, labor market status, and retirement planning. HRS data products are available without cost to researchers and analysts.

Hospice Net
http://www.hospicenet.org
Hospice Net is an independent, nonprofit organization that publishes information on dealing with life-threatening illnesses for patients and caregivers. Topics include bereavement, pain management, hospice care, talking to children, and caregiving. The site also includes tips on finding and choosing a hospice. (See also, http://www.hospiceweb.com.)

Infoaging.org
http://www.infoaging.org
Launched by the American Federation for Aging Research and supported by a grant from Pfizer Inc., the site contains the latest research-based information on a wide range of age-related diseases, conditions, issues, features, and news.

Intergenerational Initiative
http://www.siu.edu/offices/iii/
Hosted by Southern Illinois University, this website hosts several publications and a retiree volunteer program.

MealCall.org
http://www.mealcall.org/
MealCall helps seniors and family members connect with local Meals-on-Wheels and other similar programs. MealCall also helps find volunteers for Meals-on-Wheels delivery.

MedWeb
http://www.medweb.emory.edu/medweb/
Maintained by the staff of the Robert W. Woodruff Health Sciences Center Library of Emory University, MedWeb is a catalog of biomedical and health related web sites with a primarily for the academic and research community.

Merck Manual of Geriatrics
http://www.merck.com/mrkshared/mmg/home.jsp
An online, interdisciplinary manual regarding geriatric care for clinicians and residents.

MyZiva.net (Nursing Home Guide)
http://www.myziva.net/
MyZiva.Net is an independent, free nursing home resource for prospective residents, caregivers and healthcare professionals that helps with finding and comparing nursing homes.

National Public Radio: The End of Life
http://www.npr.org/programs/death/
Includes transcripts of roundtable discussions and conferences, readings, and a bibliography.

Nolo.com Encyclopedia: Health Care & Elder Care
http://www.nolo.com/encyclopedia/ret_ency.html
Includes articles on health and financial issues such as Medicare, long-term care, and estate planning.

On Our Own Terms: Moyers on Dying
http://www.pbs.org/wnet/onourownterms/
This website, based on a PBS special, includes resources on care, and links to final days sites, and therapy sites.

Our Senior Years
http://www.oursenioryears.com

Pain.com
http://www.pain.com/
Sponsored by a private foundation, this site is an educational resource on pain and pain management for health care professionals and consumers.

Painlaw.org
http://www.painlaw.org/
A public resource of general information on the legal aspects of pain management and end-of-life care hosted by the Bazelon Center for Mental Health Law, a national legal advocacy group for people with mental disabilities.

Palliative Drugs
http://www.palliativedrugs.org/
This site provides independent information for health professionals about the use of drugs in palliative care.

Secrets of Aging
http://www.secretsofaging.org/
Produced by the Boston Museum of Science, this website provides public access to the latest scientific research on aging.

SeniorJournal.com

http://www.seniorjournal.com
This site provides daily news and information for baby boomers.

Senior Corner
http://seniors.tcnet.org/
Includes articles on health, caregiving, and senior needs and local and national resources for seniors.

Senior Women Web
http://www.seniorwomen.com/
This website attempts to address women's interests and concerns, especially the issues of community and connectivity.

WebMD
Main Website: http://my.webmd.com/
RxList Website: http://www.rxlist.com/
Provides generalized health information.

WidowNet
http://www.widownet.org/
Hosted by a widower, this site provides online resources and discussion opportunities.

WiredSeniors.com
http://www.wiredseniors.com
Includes SeniorsSearch.com, a search engine geared to individuals over 50.

 


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