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Ethical Guidelines of the Alzheimer Society of Canada

Published online by Cambridge University Press:  18 September 2015

John D. Fisk*
Affiliation:
Departments of Psychology, Psychiatry and Medicine, Dalhousie University, Halifax
A. Dessa Sadovnick
Affiliation:
Department of Medical Genetics, University of British Columbia, Vancouver
Carole A. Cohen
Affiliation:
Department of Psychiatry, University of Toronto, Toronto
Serge Gauthier
Affiliation:
McGill Centre for Studies in Aging, McGill University, Montreal
John Dossetor
Affiliation:
Bioethics Centre, University of Alberta and Capital Health, Edmonton
Astrid Eberhart
Affiliation:
Alzheimer Society of Canada
Linda LeDuc
Affiliation:
Alzheimer Society of Canada
*
Alzheimer Society of Canada, 20 Eglinton Avenue West, Suite 1200, Toronto, Ontario, Canada M4R 1K8
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Abstract:

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Alzheimer's disease raises numerous ethical issues which vary and evolve over the course of the illness. In recognition of the need for ongoing discussion of these issues, the Alzheimer Society of Canada established a Task Force on Ethics in 1995. Through a process of “discourse ethics” and consultation on a national scale, the Task Force produced a series of guidelines dealing with the issues of: communicating the diagnosis, driving, respecting individual choice, quality of life, participation in research, genetic testing, the use of restraints, and end-of-life care. This manuscript presents a summary of these guidelines as well as a summary of the ideas on which they were based. It was the hope of the Society that the publication of these guidelines will serve to facilitate discussion of the ethics of care of those with Alzheimer's disease.

Type
Original Articles
Copyright
Copyright © Canadian Neurological Sciences Federation 1998

References

REFERENCES

1.Tri-Council Working Group. Code of Ethical Conduct for Research Involving Humans. Ottawa: Minister of Supplies and Services Canada, 1997.Google Scholar
2.Post, SG, Whitehouse, PJ. Fairhill guidelines on ethics of the care of people with Alzheimer’s disease: a clinical summary. J Am Ger Soc 1995; 43: 14231429.CrossRefGoogle ScholarPubMed
3.Habermas, J. Justification and Application: Remarks on Discourse Ethics. Cambridge, MA: MIT Press, 1993.Google Scholar
4.Alzheimer Society of Canada. Tough Issues: Ethical Guidlines of the Alzheimer Society of Canada. Toronto: Alzheimer Society of Canada, 1997.Google Scholar
5.Cohen, CA, Whitehouse, PJ, Post, SG, et al. Ethical issues in Alzheimer’s disease: the experience of a national Alzheimer Society Task Force. Alz Dis Relat Disorder (in press).Google Scholar
6.Drickamer, MA, Lachs, MS. Should patients with Alzheimer’s disease be told their diagnosis? N Engl J Med 1992; 326: 947951.CrossRefGoogle ScholarPubMed
7.Leach, J, Levy, R. Reflections on the NINCDS/ADRDA criteria for the diagnosis of Alzheimer’s disease. Int J Geriatr Psychiat 1994; 9: 173179.CrossRefGoogle Scholar
8.Blackler, D, Albert, MS, Bassett, SS, et al. Reliability and validity of NINCDS-ADRDA criteria for Alzheimer’s disease: the National Institute of Mental Health Genetics Initiative. Arch Neurol 1994; 51: 11981204.CrossRefGoogle Scholar
9.Schofield, PW, Tang, M, Marder, K, et al. Consistency of clinical diagnosis in a community-based longitudinal study of dementia and Alzheimer’s disease. Neurology 1995; 45: 21592164.CrossRefGoogle Scholar
10.Erde, EL, Nadal, EC, Scholl, TO. On truth telling and the diagnosis of Alzheimer’s disease. J Fam Prac 1988; 26: 401406.Google ScholarPubMed
11.Gilliard, J, Gwilliam, C. Sharing the diagnosis: a survey of memory disorders clinics, their policies on informing people with dementia and their families, and the support they offer. Int J Geriatr Psychiat 1996; 11: 10011003.3.0.CO;2-I>CrossRefGoogle Scholar
12.Parasuraman, R, Nestor, PG. Attention and driving skills in aging and Alzheimer’s disease. Human Factors 1991; 33: 539557.CrossRefGoogle ScholarPubMed
13.Trobe, JD, Waller, PF, Cook-Flannagan, CA, Teshima, SM, Bieliauskas, LA. Crashes and violations among drivers with Alzheimer disease. Arch Neurol 1996; 53: 411416.CrossRefGoogle ScholarPubMed
14.Lundberg, C, Johansson, K, Ball, K, et al. Dementia and driving: an attempt at consensus. Alz Dis Relat Disorder 1997; 11: 2837.CrossRefGoogle ScholarPubMed
15.Dobbs, A. Evaluating the driving competence of dementia patients. Alz Dis Relat Disorder 1997; 11(Suppl. 1): 812.CrossRefGoogle ScholarPubMed
16.Hunt, LA, Murphy, CF, Carr, D, et al. Reliability of the Washington University road test. Arch Neurol 1997; 54: 707712.CrossRefGoogle ScholarPubMed
17.Friedland, RP. Strategies for driving cessation in Alzheimer disease. Alz Dis Relat Disorder 1997; 11(Suppl. 1): 7375.CrossRefGoogle ScholarPubMed
18.Drachman, DA, Swearer, JM. and Collaborative Study Group. Driving and Alzheimer’s disease: the risk of crashes. Neurology 1993; 43: 24482456.CrossRefGoogle ScholarPubMed
19.Marson, DC, Mclnturff, B, Hawkins, L, et al. Consistency of physician judgments of capacity to consent in mild Alzheimer’s disease. J Am Geriatr Soc 1997; 45: 453457.CrossRefGoogle ScholarPubMed
20.Molloy, DW, Siberfield, M, Darzins, P, et al. Measuring capacity to complete an advance directive. J Am Geriatr Soc 1996; 44: 660664.CrossRefGoogle ScholarPubMed
21.The American Academy of Neurology Ethics and Humanities Subcommittee. Ethical issues in the management of the demented patient. Neurology 1996; 46: 11801183.CrossRefGoogle Scholar
22.Dossetor, JB, Fraser, RS. Preserving dignity: the use of advance directives for decision-making in health care. Edmonton: The Bioethics Centre, University of Alberta, 1997.Google Scholar
23.Faden, R, German, PS. Quality of life: considerations in geriatrics. Clin Ethics 1994; 10: 541551.Google ScholarPubMed
24.Guyatt, GH, Van Zanten, SJO, Feeny, DH, Patrick, DL. Measuring quality of life in clinical trials: a taxonomy and review. Can Med Assoc J 1989; 140: 14411448.Google ScholarPubMed
25.Fried, LP, Storer, DJ, King, DE, Lodder, F. Diagnosis of illness presentation in the elderly. J Am Geriatr Soc 1991; 39: 117123.CrossRefGoogle ScholarPubMed
26.Zarit, SH, Todd, PA, Zarit, JM. Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 1986; 26: 260266.CrossRefGoogle ScholarPubMed
27.Morgan, DL, March, SJ. The impact of life events on networks of personal relationships: a comparison of widowhood and caring for a spouse with Alzheimer’s disease. J Soc Personal Relations 1992; 9: 563584.CrossRefGoogle Scholar
28.Medical Research Council of Canada. Guidelines on Research Involving Human Subjects. Ottawa: Minister of Supplies and Services Canada, 1987.Google Scholar
29.High, DM, Whitehouse, PJ, Post, SJ, Berg, L. Guidelines for addressing ethical and legal issues in Alzheimer disease research: a position paper. Alz Dis Relat Disorder 1994; 8: 6674.CrossRefGoogle ScholarPubMed
30.Marson, DC, Schmitt, FA, Ingram, KK, Harrell, LE. Determining the competency of Alzheimer patients to consent to treatment and research. Alz Dis Relat Disorder 1994; 8: 518.CrossRefGoogle ScholarPubMed
31.Keyserlingk, EW, Glass, K, Kogan, S, Gauthier, S. Proposed guidelines for the participation of persons with dementia as research subjects. Perspectives Biol Med 1995; 38: 319362.Google ScholarPubMed
32.Sachs, GA. Advance consent for dementia research. Alz Dis Relat Disorder 1994; 8: 1927.CrossRefGoogle ScholarPubMed
33.Epstein, CJ. 1996 ASHG Presidential Address: towards the 21st century. Am J Hum Genetics 1996; 60: 19.Google Scholar
34.Goate, AM, Chartier-Harlin, MC, Mullan, M, et al. Segregation of a missense mutation in the amyloid precursor protein gene with familial Alzheimer’s disease. Nature 1991; 349: 704706.CrossRefGoogle ScholarPubMed
35. St. George-Hyslop, P, Haines, J, Rogaev, EI, et al. Genetic evidence for a novel familial Alzheimer’s disease locus on chromosome 14. Nature Genetics 1992; 2: 330334.CrossRefGoogle Scholar
36.Levy-Lahad, E, Wijsman, EM, Nemens, et al. A familial Alzheimer’s disease locus on chromosome 1. Science 1995; 269: 970973.CrossRefGoogle ScholarPubMed
37.American College of Medical Genetics/American Society of Human Genetics Working Group on ApoE and Alzheimer Disease. Statement on use of Apolipoprotein E testing for Alzheimer disease. J Am Med Assoc 1995; 274: 16271629.CrossRefGoogle Scholar
38.Blacker, D, Haines, JL, Rodes, L, et al. ApoE-4 and age at onset of Alzheimer’s disease: the NIMH Genetics Initiative. Neurology 1997; 48: 139147.CrossRefGoogle ScholarPubMed
39.National Institute on Aging/Alzheimer’s Association Working Group. Apolipoprotein E genotyping in Alzheimer’s disease. Lancet 1996; 347: 10911095.CrossRefGoogle Scholar
40.Merz, JF. Is genetics research “minimal risk”? IRB 1996; 18: 78.Google ScholarPubMed
41.Capezutti, E, Evans, L, Strumpf, N, Maislin, G. Physical restraint use and falls in nursing home residents. J Am Geriatr Soc 1996; 44: 624633.CrossRefGoogle Scholar
42.Powell, C, Mitchell-Pedersen, L, Fingerote, E, Edmund, L. Freedom from restraint: consequences of reducing physical restraints in the management of the elderly. Can Med Assoc J 1989; 141: 561564.Google ScholarPubMed
43.O’Keeffe, S, Jack, CIA, Lye, M. Use of restraints and bedrails in a British hospital. J Am Geriatr Soc 1996; 44: 10861088.CrossRefGoogle Scholar
44.Inouye, SK, Charpentier, PA. Percipitating factors for delirium in hospitalized elderly persons: predictive model and interrelationship with baseline variability. J Am Med Assoc 1996; 275: 852857.CrossRefGoogle Scholar
45.Frengley, JD. The use of physical restraints and the absence of kindness. J Am Geriatr Soc 1996; 44: 11251127.CrossRefGoogle ScholarPubMed
46.Schnelle, JF, Smith, RL. To use physical restraints or not? J Am Geriatr Soc 1996; 44: 727728.CrossRefGoogle ScholarPubMed
47.Herrmann, N, Lanctot, KL, Naranjo, CA. Behavioural disorders in demented elderly patients: current issues in pharmacotherapy. CNS Drugs 1996; 6(4): 280300.CrossRefGoogle Scholar
48.Boroson, S, Raskind, MA. Clinical features and pharmacologic treatment of behavioural symptoms of Alzheimer’s disease. Neurology 1997; 48(Suppl. 6): S17-S24.Google Scholar
49.Jarrett, PG, Rockwood, K, Mallery, L. Behavioural problems in nursing home residents: safe ways to manage dementia. Postgrad Med 1995; 97: 189196.CrossRefGoogle Scholar
50.Sachs, GA, Ahronheim, JC, Volicer, L, Lynn, J. Good care of dying patients: the alternative to physician-assisted suicide and euthanasia. J Am Geriatr Soc 1995; 43: 553562.CrossRefGoogle Scholar
51.Emanuel, EJ, Emanuel, LL. Proxy decision making for incompetent patients: an ethical and empirical analysis. J Am Med Assoc 1992; 267: 20672071.CrossRefGoogle ScholarPubMed
52.Lynn, J. Procedures for making medical decisions for incompetent adults. J Am Med Assoc 1992; 267: 20822084.CrossRefGoogle ScholarPubMed
53.American Geriatrics Society. Measuring quality of care at the end of life: a statement of principles. J Am Geriatr Soc 1997; 45: 526527.CrossRefGoogle Scholar