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.

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. 3^rd 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. 2^nd 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.

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).

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.” 12^th 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 11^th 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.

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. 2^nd ed. New York: Oxford University Press, forthcoming 2006 (1^st 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.

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 107^th 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, 108^th 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.

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 21^st 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. 4^th 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 21^st Century. Gaithersburg, MD: Aspen Publishers, 1998.

Osler, W. The Principles and Practice of Medicine. 3^rd 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