Ethical Issues and Dementia - Alzheimer's Association · Alzheimer’s Association Green-Field Library 1 . Ethical Issues and Dementia . Individuals and families living with Alzheimer’s

Alzheimer’s Association Green-Field Library 1

Ethical Issues and Dementia

Individuals and families living with Alzheimer’s disease will face many decisions throughout the course of the disease including decisions about care, treatment, participation in research, end of life issues, autonomy and safety. These statements were created to help persons with dementia and their families become educated about different areas of concern and provide the Association's positions around ethical, medical and care topics related to Alzheimer's disease or dementia. The statements are based on relevant research, best practice and expert opinion.

This list is a reviewed collection of items prepared by the Alzheimer's Association Green-Field Library staff. More information can be found at Ethical and Care Issues.

On this resource list:

Assisted Oral Feeding & Tube Feeding Challenging Behaviors Driving and Dementia Electronic Medical Records Electronic Tracking End-of-Life Care Genetic Testing Placebo Control Protection or Participants in Research Respect for Autonomy Telling the Truth in Diagnosis Therapeutic Goals

http://www.alz.org/living_with_alzheimers_ethical_care_issues.asp�


Assisted Oral Feeding & Tube Feeding

Angus, F., Burakoff, R. (2003, February). The percutaneous endoscopic gastrostomy tube: medical and ethical issues in placement. American Journal of Gastroenterology, 98(2), 272-277.

Baron, M. (2006, September). Tube feeding decisions in patients with end-stage dementia.

Health Care Food & Nutrition Focus, 23(9), 1-7. Cervo, F.A., Bryan, L., Farber, S. (2006, June). To PEG or not to PEG: a review of evidence for

placing feeding tubes in advanced dementia and the decision-making process. Geriatrics, 61(6), 30-35.

DeLegge, M.H. (2009, April/May). Tube feeding in patients with dementia: where are we?

Nutrition in Clinical Practice, 24(2), 214-216. Dharmarajan, T.S., Unnikrishnan, D., Pitchumoni, C.S. (2001, September). Percutaneous

endoscopic gastrostomy and outcome in dementia. American Journal of Gastroenterology, 96(9), 2556-2563.

Eggenberger, S.K., Nelms, T.P. (2004, September). Artificial hydration and nutrition in advanced Alzheimer’s disease: facilitating family decision-making. Journal of Clinical Nursing, 13(6), 661-667. Finucane, T.E., Christmas, C., Travis, K. (1999, October 13). Tube feeding in patients with

advanced dementia: a review of the evidence. Journal of the American Medical Association, 282(14), 1365-1370.

Fisher, R., Connolly, E. (2005, January). Artificial nutrition and hydration in the management

of end-stage dementias. Geriatrics & Aging, 8(1), 42-45. Gaines, D.I., Durkalski, V., Patel, A., DeLegge, M.H. (2009, January/February). Dementia and

cognitive impairment are not associated with earlier mortality after percutaneous endoscopic gastrostomy. Journal of Parenteral and Enteral Nutrition, 33(1), 62-66.

Ganzini, L. (2006, June). Artificial nutrition and hydration at the end of life: ethics and evidence.

Palliative and Supportive Care, 4(2), 135-143. Gillick, M.R., Volandes, A.E. (2008, June). The standard of caring: why do we still use

feeding tubes in patients with advanced dementia? Journal of the American Medical Directors Association, 9(5), 364-367.

McClave, S.A., Chang, W. (2003, November). Complications of enteral access. Gastrointestinal

Endoscopy, 58(5), 739-751.


Behaviors & Symptoms Ballard, C.G., Gauthier, S., Cummings, J.L., Brodaty, H., Grossberg, G.T., R obert, P., Cyketsos,

C.G. (2009, May). Management of agitation and aggression associated with Alzheimer’s disease. Nature R eviews, 5, 245-255.

Steinberg, M., Shao, H., Zandi, P., Lyketsos, C.G., Welsh-Bohmer, K.A., Norton, M.C.,

Breitner, J.C., Steffens, D.C., Tschanz, J.T. (2008). Point and 5-year period prevalence of neuropsychiatric symptoms in dementia: the Cache County study. International Journal of Geriatric Psychiatry, 23(2), 170-177.

Treloar, A., Crugel, M., Prasanna, A., Solomons, L., Fox, C., Paton, C., Katona, C. (2010).

Ethical dilemmas: should anti-psychotics ever be prescribed for people with dementia? British Journal of Psychiatry, 197(2), 88-90.

U.S. Food & Drug Administration. (2005, April 11). Public health advisory: deaths with

antipsychotics in elderly patients with behavioral disturbances. http:/ / www.fda.gov. M053171 Accessed February 28, 2012.

Driving & Dementia

Adler, G. (2010, February). Driving decision-making in older adults with dementia. Dementia, 9(1), 45-60. Berger, J.T., Rosner, F. (2000, Winter). Ethical challenges posed by dementia and driving. Journal of Clinical Ethics, 11(4), 304-308. Carr, D.B., Duchek, J., Morris, J.C. (2000, January). Characteristics of motor vehicle crashes of drivers with dementia of the Alzheimer type. Journal of the American Geriatrics Society, 48(1), 18-22. Croston, J., Meuser, T.M., Berg-Weger, M., Grant, E.A., Carr, D.B. (2009, April/June). Driving

retirement in older adults with dementia. Topics in Geriatric Rehabilitation, 25(2), 154- 162.

Hopkins, R.W., Kilik, L., Day, D.J., Rows, C., Tseng, H. (2004, July). Driving and dementia in

Ontario: a quantitative assessment of the problem. Canadian Journal of Psychiatry, 49(7), 434-438.

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/DrugSafetyInformationforHeathcareProfessionals/PublicHealthAdvisories/ucm053171.htm�


Man-Son-Hing, M., Marshall, S.C., Molnar, F.J., Wilson, K.G. (2007, June). Systematic review

of driving risk and the efficacy of compensatory strategies in persons with dementia. Journal of the American Geriatrics Society, 55(6), 878-884.

National Ethics Committee of the Veterans Health Administration. (2007, September). Impaired

driving in older adults: ethical challenges for health care professionals. http://www.ethics.va.gov. Accessed November 9, 2011.

Rapoport, J.J., Herrmann, N., Molnar, F.J., Man-Son-Hing, M., Marshall, S.C., Shulman, K.,

Naglie, G. (2007, September). Sharing the responsibility for assessing the risk of the driver with dementia. Canadian Medical Association Journal, 177(6), 591-601.

Reger, M.A., Welsh, R.K., Watson, G.S., Cholerton, B., Baker, L.D., Craft, S. (2004, January). The relationship between neuropsychological functioning and driving ability in dementia: a meta-analysis. Neuropsychology, 18(1), 85-93. Snyder, C.H. (2005, October). Dementia and driving: autonomy versus safety. Journal of the

American Academy of Nurse Practitioners, 17(10), 393-402.

Electronic Tracking

Hughes, J.C., Louw, S.J. (2002, October 19). Electronic tagging of people with dementia who wander: ethical considerations are possibly more important than practical benefits. British Medical Journal, 325(7369), 847-848.

Moffat, P. (2008, February). Should we tag people with dementia? International Journal of

Palliative Nursing, 14(2), 56. Niemeijer, A., Hertogh, C. (2008, August). Implantable tags: don’t close the door for Aunt

Millie! American Journal of Bioethics, 8(8), 50-52. Sifford, K.S., Bharucha, A. (2010, January). Benefits and challenges of electronic surveillance in

nursing home research. Research in Gerontological Nursing, 3(1), 5-10.

http://www.ethics.va.gov/docs/necrpts/NEC_Report_20070930_Impaired_Driving_in_Older_Adults.pdf�


End of Life Care

Coetzee, R.H., Leask, S.J., Jones, R.G. (2003, February). The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia. International Journal of Geriatric Psychiatry, 18(2), 169-173. Finucane, T. (2001, Winter). Thinking about life-sustaining treatment late in the life of a demented person. Georgia Law Review, 35(2), 691-705. Garavaglia, B. (2006, October). Keeping an ethical perspective on end-of-life issues. Nursing

Home Long Term Care Management, 55(10), 62-64. Hinkka, H., Kosunem, E., Lammi, E.K., Metsanoja, R., Puustelli, A., Kellokumpu-Lehtinen, P.

(2002, May). Decision making in terminal care: a survey of Finnish doctors’ treatment decisions in end-of-life scenarios involving a terminal cancer and a terminal dementia patient. Palliative Medicine, 16(3), 195-204.

Low, J.A., Chan, D.K.Y., Hung, W.T., Chye, R. (2003, August). Treatment of recurrent aspiration pneumonia in end-stage dementia: preferences and choices of a group of elderly nursing home residents. Internal Medicine Journal, 33(8), 345-349. Michel, J., Pautex, S., Zekry, D., Zulian, G., Gold, G. (2002, October). End-of-life care of persons with dementia. Journal of Gerontology, 57(10), M640-M644. Parsons, C., Hughes, C.M., Passmore, A.P., Lapane, K.L. (2010, June 1). Withholding, discontinuing, and withdrawing medications in dementia patients at the end of life. Drugs & Aging, 27(6), 435-449. Richardson, S.S., Sullivan, G., Hill, A., Yu, W. (2007, February). Use of aggressive medical

treatments near the end of life: differences between patients with and without dementia. HSR: Health Services Research, 42(1), 183-200.

Van der Steen, J.T., Muller, M.T., Ooms, M.E., Van der Wal, G., Ribbe, M.W. (2000, April). Decisions to treat or not to treat pneumonia in demented psychogeriatric nursing home patients: development of a guideline. Journal of Medical Ethics, 26(2), 114-120.


Genetic Testing

Green, M.J., Botkin, J.R. (2003, April). “Genetic exceptionalism” in medicine: clarifying the differences between genetic and nongenetic tests. Annals of Internal Medicine, 138(7), 571-576.

Green, R.C., Roberts, J.S., Cupples, L.A., Relkin, N.R., Whitehouse, P.J., Brown, T., La Russe, S., Eckert, M.S., Butson, M., Sadovnick, A.D., Quaid, K.A., Chen, C., Cook- Deegan, R., Farrer, L.A. (2009, July 16). Disclosure of APOE genotype for risk of Alzheimer’s disease. New England Journal of Medicine, 361(3), 245-254. Goldman, J.S., Hou, C.E. (2004, April/June). Early-onset Alzheimer disease: when is genetic

testing appropriate? Alzheimer Disease and Associated Disorders, 18(2), 65-67. Hayden, E.C. (2008, October). Alzheimer’s tests under fire. Nature, 455(7217), 1155. Kane, R.A., Kane, R.L. (2009, July 16). Effect of genetic testing for risk of Alzheimer’s disease.

New England Journal of Medicine, 361(3), 298-299. Kapp, M.B. (2000, December). Physicians’ legal duties regarding the use of genetic tests to predict and diagnose Alzheimer disease. Journal of Legal Medicine, 21(4), 445-475. Liao, S.M. (2009, May). Is there a duty to share genetic information? Journal of Medical Ethics,

35(5), 306-309. Nee, L.E., Tierney, M.C., Lippa, C.F. (2004, July/August). Genetic aspects of Alzheimer’s

disease, Pick’s disease, and other dementias. American Journal of Alzheimer’s Disease and Other Dementias, 19(4), 219-225.

Scully, J.L., Porz, R., Rehmann-Sutter, C. (2007, May). You don’t make genetic test decisions from one day to the next: using time to preserve moral space. Bioethics, 21(4), 208-217. Williamson, J., Goldman, J.S., Mayeux, R. (2007, July). Genetic research and genetic testing in

Alzheimer’s disease: a view from the bridge. Nature Clinical Practice Neurology, 3(7), 356-357.


Placebo Control

Goldney, R.D., Stoffell, B.F. (2000, August). Ethical issues in placebo-controlled trails in Alzheimer’s disease. Medical Journal of Australia, 173(3),147-148. Issa, A.M., Keyserlingk, E.W. (2000, October). Current and future clinical trials for Alzheimer

disease: evolving ethical concerns. Progress in Neuro-Psychopharmacology and Biological Psychiatry, 24(8), 1229-1249.

Kvarstein, G., Mawe, L., Indahl, A., Hol, P.K., Tennoe, B., Digernes, R., Tonnessen, T.I.,

Beivik, H., Stubhaug, A. (2010, January). Placebo control-still the most ethical study design [Letter to the editor]. Pain, 148(1), 174-175.

Protection of Participants in Research & Informed Consent

Black, B.S., Gogarty, L.A., Phillips, H., Finucane, T., Loreck, D.J., Baker, A., Blass, D., Rabins,

P.V. (2009, June). Surrogate decision-makers’ understanding of dementia patients’ prior wishes for end-of-life care. Journal of Aging Health, 21(4), 627-650.

Black, B.S., Rabins, P.V., Sugarman, J., Karlawish, J.H. (2010, January). Seeking assent and

respecting dissent in dementia research. American Journal of Geriatric Psychiatry, 18(1), 77-85.

Cahill, M., Wichman, A. (2000, January/March). Research involving persons with cognitive

impairments: results of a survey of Alzheimer disease research centers in the United States. Alzheimer’s Disease and Associated Disorders, 14(1), 20-27.

Hyun, I., Griggins, C., Weiss, M., Robbins, D., Robichaud, A., Daly, B. (2006, Winter). When patients do not have a proxy: a procedure for medical decision making when there is no one to speak for the patient. Journal of Clinical Ethics, 17(4), 323-330. Kapp, M.B. (2006, January/February). Informed consent implications of diagnostic evaluations

for dementia. American Journal of Alzheimer’s Disease and Other Dementias, 21(1), 24-27.

Kapp, M.B. (2001, November). Legal interventions for persons with dementia in the USA: ethical, policy and practical aspects. Aging & Mental Health, 5(4), 312-315. Karlawish, J. (2008). Measuring decision-making capacity in cognitively impaired individuals.

Neurosignals, 16(1), 91-98.


Kim, S.Y., Kim, H.M., Langa, K.M., Karlawish, J.H., Knopman, D.S., Appelbaum, P.S. (2009,

January). Surrogate consent for dementia research: a national survey of older Americans. Neurology, 72(2), 149-155.

Korczyn, A.D. (2007, September). Drug trials in dementia: challenging ethical dilemmas. Current

Alzheimer Research, 4(4), 468-472. Molnar, F.J., Man-Son-Hing, M., Fergusson, D. (2009, March). Systematic review of measures

of clinical significance employed in randomized controlled trials of drugs for dementia. Journal of the American Geriatrics Society, 57(3), 536-546.

Murphy, J., Scott, J., Kaufman, D., Geller, G., LeRoy, L., Hudson, K. (2008, November). Public

expectations for return of results from large-cohort genetic research. American Journal of Bioethics, 8(11), 36-43.

Pierce, R. (2010, February). A changing landscape for advance directives in dementia research.

Social Science & Medicine, 70(4), 623-630. Post, S.G. (2003, April/June). Full-spectrum proxy consent for research participation when

persons with Alzheimer disease lose decisional capacities: research ethics and the common good. Alzheimer Disease and Associated Disorders, 17(Suppl 1), S3-S11.

Rhodes, R. (2005, October). Rethinking research ethics. American Journal of Bioethics, 10(10), 19-36. Respect for Autonomy

Black, B.S., Rabins, P.V., Sugarman, J., Karlawish, J.H. (2010, January). Seeking assent and respecting dissent in dementia research. American Journal of Geriatric Psychiatry, 18(1), 77-85.

De Boer, M.E., Hertogh, C.M., Droes, R., Jonker, C., Eefsting, J.A. (2010, March). Advance directives in dementia: issues of validity and effectiveness. International Psychogeriatrics, 22(2), 201-208. Howe, E.G. (2006, Winter). Do we undervalue feelings in patients who are cognitively impaired?

Journal of Clinical Ethics, 17(4), 291-301. Kane, M.N. (2001, March/April). Legal guardianship and other alternatives in the care of elders

with Alzheimer’s disease. American Journal of Alzheimer’s disease and Other Dementias, 16(2), 89-96.

Kapp, M.B. (2001, November). Legal interventions for persons with dementia in the USA: ethical policy and practical aspects. Aging & Mental health, 5(4), 312-315.


Karlawish, J.H., Casarett, D.J., James, B.D., Xie, S.X., Kim, S.Y. (2005, May). The ability of

persons with Alzheimer disease (AD) to make a decision about taking an AD treatment. Neurology, 64(9), 1514-1519.

Kim, S.Y.H., Kim, H.M., Langa, K.M., Karlawish, J.H.T., Knopman, D.S., Appelbaum, P.S. (2009, January 13). Surrogate consent for dementia research: a national survey of older

Americans. Neurology, 72(2), 149-155. Murray, L.M., Boyd, S. (2009, March). Protecting Personhood and Achieving Quality of Life for

Older Adults With Dementia in the U.S. Health Care System. Journal of Aging and Health, 21(2), 350-373.

Pierce, R. (2010, February). A changing landscape for advance directives in dementia research. Social Science & Medicine, 70(4), 623-630. Powers, B.A. (2003, November). The significance of losing things for nursing home residents

with dementia and their families. Journal of Gerontological Nursing, 29(11), 43-52. Sabat, S.R. (2005, November/December). Capacity for decision-making in Alzheimer’s disease: selfhood, positioning and semiotic people. Australian and New Zealand Journal of Psychiatry, 39(11-12), 1030-1035.

Sailors, P.R. (2001). Autonomy, benevolence, and Alzheimer’s disease. Cambridge Quarterly of

Healthcare Ethics, 10(2), 184-193. Stocking, C.B., Hougham, G.W., Danner, D.D., Patterson, M.B., Whitehouse, P.J., Sachs, G.A.

(2008, October). Variable judgments of decisional capacity in cognitively impaired research subjects. Journal of the American Geriatrics Society, 56(10), 1893-1897.

Tweedle, F. (2009, August/September). Covert medication in older adults who lack decision-

making capacity. British Journal of Nursing, 18(15), 936-939. Whitney, S.N., McCullough, L.B. (2007, July). Physicians’ silent decisions: because patient

autonomy does not always come first. American Journal of Bioethics, 7(7), 33-38. Woods, B., Pratt, R. (2005, September). Awareness in dementia: ethical and legal issues in

relation to people with dementia. Aging & Mental Health, 9(5), 423-429.


Telling Truth in Diagnosis

Hamdy, R.C. (2004, January). Alzheimer’s disease: to tell or not to tell. Southern Medical Journal, 97(1), 1.

Marzanski, M. (2000, April). Would you like to know what is wrong with you? On telling the

truth to patients with dementia. Journal of Medical Ethics, 26(2), 108-113. Pinner, G., Bouman, W.P. (2002, June). To tell or not to tell: on disclosing the diagnosis of

dementia. International Psychogeriatrics, 14(2), 127-137. Whitehouse, P., Frisoni, G., Post, S. (2004, February). Breaking the diagnosis of dementia. Lancet Neurology, 3(2), 124-128.

Therapeutic Goals

Ballard, C., Lana, M.M., Theodoulou, M., Douglas, S., McShane, R., Jacoby, R., Kossakowski, K., Yu, L., Juszczak, E. (2008, April). A randomized, blinded, placebo-controlled trial in

dementia patients continuing or stopping neuroleptics (The DART-AD Trial). PLoS Medicine, 5(4), e76.

Gauthier, S. (2005, April 16). Drugs for Alzheimer’s disease and related dementias: clear rules

about stopping treatment in individual patients are needed. British Medical Journal, 330, 857-858.

Karlawish, J.H.T., Casarett, D.J., James, B.D., Xie, S.X., Kim, S.Y.H. (2005, May 10). The

ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment. Neurology, 64(9), 1514-1519.

Leibing, A. (2009, March). Tense prescriptions? Alzheimer medications and the anthropology of

uncertainty. Transcultural Psychiatry, 46(1), 180-206. Lockhart, B.P., Lestage, P.J. (2002, January/February). Cognition enhancing or neuroprotective

compounds for the treatment of cognitive disorders: Why? When? Which? Experimental Gerontology, 38(1-2), 119-128.

Mitchell, S.L., Teno, J.M., Kiely, D.K., Shaffer, M.L., Jones, R.N., Prigerson, H.G., Volicer, L.,

Givens, J.L., Hamel, M.B. (2009, October 15). The clinical course of advanced dementia. New England Journal of Medicine, 361(16), 1529-1538.


Post, S.G., Stuckey, J.C., Whitehouse, P.J., Ollerton, S., Durkin, C., Robbins, D., and FallCreek, S.J. (2001, April/June). A focus group on cognition-enhancing medications in Alzheimer disease: disparities between professionals and consumers. Alzheimer Disease and

Associated Disorders, 15(2), 80-88. Rabins, P.V., Black, B.S. (2007, June). Measuring quality of life in dementia: purposes, goals,

challenges and progress. International Psychogeriatrics, 19(3), 401-407. Taylor, H.A., Black, B.S., Rabins, P.V. (2008, Summer). Deciding in the best interest of clients with dementia: the experience of public guardians. Journal of Clinical Ethics, 19(2),

120-126. Van der Steen, J.T., Ooms, M., Ader, H.J., Ribbe, M.W., Van der Wal, G., (2002, August

12-26). Withholding antibiotic treatment in pneumonia patients with dementia. Archives of Internal Medicine, 162(15), 1753-1760. Van der Steen, J.T., Ooms, M.E., Van der Wal, G., Ribbe, M.W. (2005, March/April).

Withholding or starting antibiotic treatment in patients with dementia and pneumonia: prediction of mortality with physicians’ judgment of illness severity and with specific prognostic models. Medical Decision Making, 25(2), 210-221.

Suicide & Assisted Suicide

Draper, B., Peisah, C., Snowdon, J., Brodaty, H. (2010, January). Early dementia diagnosis and the risk of suicide and euthanasia. Alzheimer’s & Dementia: Journal of the Alzheimer’s Association, 6(1), 75-82. Gastmans, C., Denier, Y. (2010, April). What if patients with dementia use decision aids to

make an advance euthanasia request? American Journal of Bioethics, 10(4), 25-26. Orentlicher, D., Callahan, C.M. (2004, December). Feeding tubes, slippery slopes, and physician- assisted suicide. Journal of Legal Medicine, 25(4), 389-409. Rabins, P.V. (2007, November 6). Can suicide be a rational and ethical act in persons with early

or pre-dementia? American Journal of Bioethics, 7(6), 47-49.


Ethical Issues and Dementia A selected list of references compiled by Mary Ann Urbashich, M.A.L.S.

Alzheimer’s Association Green-Field Library and Resource Center Alzheimer’s Association National Office Chicago, IL 60601

Updated January 2012

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Ethical Issues and Dementia - Alzheimer's Association · Alzheimer’s Association Green-Field Library 1 . Ethical Issues and Dementia . Individuals and families living with Alzheimer’s