Abstract
As the world population ages, there is a large number of people with dementia that shall dwell in our nations with the years to come. The growing number of individuals suffering from dementia shall escalate the ethical issues related to dementia that are relevant for clinical practice and research. Some of these issues and overview of them shall be addressed in the current chapter. These include issues early detection and diagnosis, issues in dementia related to genetic testing, the role of neuroscience to enhance cognition in these subjects, ethical issues with the use of medications in mild cognitive impairment. There are also other ethical dilemmas related to proper diagnostic disclosure, apt informed consent procedures, proper conflict of interest declarations, research study issues in dementia care trials, issues with the use of placebo and the medical treatments in these subjects. This moves on to issues in the late stages of dementia, framing of therapeutic goals and end-of-life care in these patients. Issues related to old-age home care, testamentary capacity, certification, human rights, elder abuse and many such factors are discussed.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Similar content being viewed by others
References
Bail, K. D. (2003). Electronic tagging of people with dementia: Devices may be preferable to locked doors. BMJ, 326(7383), 281–286.
Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C., & Bond, J. (2004). Disclosing a diagnosis of dementia: A systematic review. International Journal of Geriatric Psychiatry, 19(2), 151–169.
Benbow, S. M., & Beeston, D. (2012). Sexuality, aging, and dementia. International Psychogeriatrics, 24(7), 1026–1033.
Berghmans, R. L. (1998). Advance directives for non-therapeutic dementia research: Some ethical and policy considerations. Journal of Medical Ethics, 24(1), 32–37.
Black, B. S., Fogarty, L. A., Phillips, H., Finucane, T., Loreck, D. J., Baker, A., Blass, D. M., & Rabins, P. V. (2009). Surrogate decision makers’ understanding of dementia patients’ prior wishes for end-of-life care. Journal of Aging and Health, 21(4), 627–650.
Black, B. S., Wechsler, M., & Fogarty, L. (2013). Decision making for participation in dementia research. The American Journal of Geriatric Psychiatry, 21(4), 355–363.
Bolmsjö, I. Å., Sandman, L., & Andersson, E. (2006). Everyday ethics in the care of elderly people. Nursing Ethics, 13(3), 249–263.
Brannelly, T. (2006). Negotiating ethics in dementia care: An analysis of an ethic of care in practice. Dementia, 5(2), 197–212.
Brodaty, H., Draper, B., & Low, L. F. (2003). Nursing home staff attitudes towards residents with dementia: Strain and satisfaction with work. Journal of Advanced Nursing, 44(6), 583–590.
Brown, L. B., & Ott, B. R. (2004). Driving and dementia: A review of the literature. Journal of Geriatric Psychiatr Neurol, 17(4), 232–240.
Cantone, D., Attena, F., Cerrone, S., Fabozzi, A., Rossiello, R., Spagnoli, L., & Pelullo, C. P. (2019). Lying to patients with dementia: Attitudes versus behaviours in nurses. Nursing Ethics, 26(4), 984–992.
Carmody, J., Traynor, V., Iverson, D., & Marchetti, E. (2013). Driving, dementia and A ustralian physicians: Primum non nocere? Internal Medicine Journal, 43(6), 625–630.
Caron, C. D., Griffith, J., & Arcand, M. (2005). End-of-life decision making in dementia: The perspective of family caregivers. Dementia, 4(1), 113–136.
Carr, D. B., & O’Neill, D. (2015). Mobility and safety issues in drivers with dementia. International Psychogeriatrics, 27(10), 1613–1622.
Carter, K., Monaghan, S., O’Brien, J., Teodorczuk, A., Mosimann, U., & Taylor, J. P. (2015). Driving and dementia: A clinical decision pathway. International Journal of Geriatric Psychiatry, 30(2), 210–216.
Chiu, H. F., & Brodaty, H. (2013). Arguments against the biomarker-driven diagnosis of AD. International Psychogeriatrics, 25(2), 177–181.
Cohen-Mansfield, J. (2003). Consent and refusal in dementia research: Conceptual and practical considerations. Alzheimer Disease & Associated Disorders, 17, S17-25.
Congedo, M., Causarano, R. I., Alberti, F., Bonito, V., Borghi, L., Colombi, L., Defanti, C. A., Marcello, N., Porteri, C., Pucci, E., & Tarquini, D. (2010). Ethical issues in end of life treatments for patients with dementia. European Journal of Neurology, 17(6), 774–779.
Cornett, P. F., & Hall, J. R. (2008). Issues in disclosing a diagnosis of dementia. Archives of Clinical Neuropsychology, 23(3), 251–256.
Cubit, K. (2010). Informed consent for research involving people with dementia: A grey area. Contemporary Nurse, 34(2), 230–236.
Culley, H., Barber, R., Hope, A., & James, I. (2013). Therapeutic lying in dementia care. Nursing Standard, 28(1), 35–39.
De Boer, M. E., Hertogh, C. M., Dröes, R. M., Jonker, C., & Eefsting, J. A. (2010). Advance directives in dementia: Issues of validity and effectiveness. International Psychogeriatrics, 22(2), 201–208.
De Lepeleire, J., Buntinx, F., & Aertgeerts, B. (2004). Disclosing the diagnosis of dementia: The performance of Flemish general practitioners. International Psychogeriatrics, 16(4), 421–428.
De Vries, R., Ryan, K. A., Stanczyk, A., Appelbaum, P. S., Damschroder, L., Knopman, D. S., & Kim, S. Y. (2013). Public’s approach to surrogate consent for dementia research: Cautious pragmatism. The American Journal of Geriatric Psychiatry, 21(4), 364–372.
Dewing, J. (2007). Participatory research: A method for process consent with persons who have dementia. Dementia, 6(1), 11–25.
Dhingra, I., De Sousa, A., & Sonavane, S. (2016). Sexuality in older adults: Clinical and psychosocial dilemmas. J Geriatr Ment Health, 3(2), 131–139.
Edberg, A. K., Bird, M., Richards, D. A., Woods, R., Keeley, P., & Davis-Quarrell, V. (2008). Strain in nursing care of people with dementia: Nurses’ experience in Australia, Sweden and United Kingdom. Aging & Mental Health, 12(2), 236–243.
Elliott, B. A., Gessert, C. E., & Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: Narrative and ethics. Scandinavian Journal of Caring Sciences, 23(2), 251–258.
Elvish, R., James, I., & Milne, D. (2010). Lying in dementia care: An example of a culture that deceives in people’s best interests. Aging & Mental Health, 14(3), 255–262.
Farah, M. J. (2005). Neuroethics: The practical and the philosophical. Trends in Cognitive Sciences, 9(1), 34–40.
Fetherstonhaugh, D., McAuliffe, L., Bauer, M., & Shanley, C. (2017). Decision-making on behalf of people living with dementia: How do surrogate decision-makers decide? Journal of Medical Ethics, 43(1), 35–40.
Goldman, J. S. (2015). Genetic testing and counseling in the diagnosis and management of young-onset dementias. Psychiatria Clinica, 38(2), 295–308.
Grigorovich, A., & Kontos, P. (2018). Advancing an ethic of embodied relational sexuality to guide decision-making in dementia care. The Gerontologist, 58(2), 219–225.
Gu, L. (2015). Nursing interventions in managing wandering behavior in patients with dementia: A literature review. Archives of Psychiatric Nursing, 29(6), 454–457.
Haw, C., & Stubbs, J. (2010). Administration of medicines in food and drink: A study of older inpatients with severe mental illness. International Psychogeriatrics, 22(3), 409–416.
Hedera, P. (2001). Ethical principles and pitfalls of genetic testing for dementia. Journal of Geriatric Psychiatry and Neurology, 14(4), 213–221.
Hellström, I., Nolan, M., Nordenfelt, L., & Lundh, U. (2007). Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics, 14(5), 608–619.
Herrmann, N., Rapoport, M. J., Sambrook, R., Hébert, R., McCracken, P., & Robillard, A. (2006). Predictors of driving cessation in mild-to-moderate dementia. Canadian Medical Association Journal, 175(6), 591–595.
Hughes, J. C., Hope, T., Reader, S., & Rice, D. (2002). Dementia and ethics: The views of informal carers. Journal of the Royal Society of Medicine, 95(5), 242–246.
Hughes, J. C., Ingram, T. A., Jarvis, A., Denton, E., Lampshire, Z., & Wernham, C. (2017). Consent for the diagnosis of preclinical dementia states: A review. Maturitas, 98, 30–34.
Jacoby, R., & Steer, P. (2007). How to assess capacity to make a will. BMJ, 335(7611), 155–157.
Jakobsen, R., & Sørlie, V. (2010). Dignity of older people in a nursing home: Narratives of care providers. Nursing Ethics, 17(3), 289–300.
James, I. A., & Caiazza, R. (2018). Therapeutic lies in dementia care: Should psychologists teach others to be person-centered liars? Behavioural and Cognitive Psychotherapy, 46(4), 454–462.
Jiménez, M. A., Jaén, M. C., García, M. V., & Barahona-Alvarez, H. (2013). Decision-making in older people with dementia. Reviews in Clinical Gerontology, 23(4), 307–316.
Kennedy, K. M. (2012). Testamentary capacity: A practical guide to assessment of ability to make a valid will. Journal of Forensic and Legal Medicine, 19(4), 191–195.
Kim, S. Y., Kim, H. M., Knopman, D. S., De Vries, R., Damschroder, L., & Appelbaum, P. S. (2011). Effect of public deliberation on attitudes toward surrogate consent for dementia research. Neurology, 77(24), 2097–2104.
Kontos, P., Grigorovich, A., Kontos, A. P., & Miller, K. L. (2016). Citizenship, human rights, and dementia: Towards a new embodied relational ethic of sexuality. Dementia, 15(3), 315–329.
Koppelman, E. R. (2002). Dementia and dignity: Towards a new method of surrogate decision making. Journal of Medicine and Philosophy, 27(1), 65–85.
Laakkonen, M. L., Raivio, M. M., Eloniemi-Sulkava, U., Saarenheimo, M., Pietilä, M., Tilvis, R. S., & Pitkälä, K. H. (2008). How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? Journal of Medical Ethics, 34(6), 427–430.
Latha, K. S. (2010). The noncompliant patient in psychiatry: The case for and against covert/surreptitious medication. Mens Sana Monographs, 8(1), 96–129.
Levy, N. (2007). Neuroethics: Challenges for the 21st century. Cambridge University Press.
Lodha, P., & De Sousa, A. (2020). Ethics of electronic tagging of people with dementia. Indian Journal of Medical Ethics, 5(1), 83–84.
Mezey, M. D., Mitty, E. L., Bottrell, M. M., Ramsey, G. C., & Fisher, T. (2000). Advance directives: Older adults with dementia. Clinics in Geriatric Medicine, 16(2), 255–268.
Miles, S. H. (2005). The Hippocratic Oath and the ethics of medicine. Oxford University Press
Miskelly, F. (2005). Electronic tracking of patients with dementia and wandering using mobile phone technology. Age and Ageing, 34(5), 497–499.
O’Neill, D. (2013). Should patients with dementia who wander be electronically tagged? BMJ, 346, 3606.
Parsons, C., Hughes, C. M., Passmore, A. P., & Lapane, K. L. (2010). Withholding, discontinuing and withdrawing medications in dementia patients at the end of life. Drugs and Aging, 27(6), 435–449.
Parsons, C., McCorry, N., Murphy, K., Byrne, S., O’Sullivan, D., O’Mahony, D., Passmore, P., Patterson, S., & Hughes, C. (2014). Assessment of factors that influence physician decision making regarding medication use in patients with dementia at the end of life. International Journal of Geriatric Psychiatry, 29(3), 281–290.
Post, S. G. (1994). Genetics, ethics, and Alzheimer disease. Journal of the American Geriatrics Society, 42(7), 782–786.
Post, S. G. (2000). Key issues in the ethics of dementia care. Neurologic Clinics, 18(4), 1011–1022.
Powers, B. A. (2001). Ethnographic analysis of everyday ethics in the care of nursing home residents with dementia: A taxonomy. Nursing Research, 50(6), 332–339.
Powers, B. A. (2003). Nursing home ethics: Everyday issues affecting residents with dementia. Springer Publishing Company.
Powers, B. A. (2005). Everyday ethics in assisted living facilities: A framework for assessing resident-focused issues. Journal of Gerontological Nursing, 31(1), 31–37.
Prvulovic, D., & Hampel, H. (2011). Ethical considerations of biomarker use in neurodegenerative diseases—a case study of Alzheimer’s disease. Progress Neurobiology, 95(4), 517–519.
Foster, C., Herring, J., Doron, I., (Eds.) (2014). The law and ethics of dementia. Bloomsbury Publishing.
Rabins, P. V., Lyketsos, C. G., & Steele, C. D. (2006). Practical dementia care. Oxford Uiniversity Press.
Robinson, L., Hughes, J., Daley, S., Keady, J., Ballard, C., & Volicer, L. (2005). End-of-life care and dementia. Reviews in Clinical Gerontology, 15(2), 135–148.
Roskies, A. (2002). Neuroethics for the new millenium. Neuron, 35(1), 21–23.
Shulman, K. I., Cohen, C. A., & Hull, I. (2005). Psychiatric issues in retrospective challenges of testamentary capacity. International Journal of Geriatric Psychiatry, 20(1), 63–69.
Shulman, K. I., Cohen, C. A., Kirsh, F. C., Hull, I. M., & Champine, P. R. (2007). Assessment of testamentary capacity and vulnerability to undue influence. American Journal of Psychiatry, 164(5), 722–727.
Singh, A. R. (2008). Covert treatment in psychiatry: Do no harm, true, but also dare to care. Mens Sana Monographs, 6(1), 81–109.
Slaughter, S., Cole, D., Jennings, E., & Reimer, M. A. (2007). Consent and assent to participate in research from people with dementia. Nursing Ethics, 14(1), 27–40.
Snyder, C. H. (2005). Dementia and driving: Autonomy versus safety. Journal of the American Academy of Nurse Practitioners, 17(10), 393–402.
Tarzia, L., Fetherstonhaugh, D., & Bauer, M. (2012). Dementia, sexuality and consent in residential aged care facilities. Journal of Medical Ethics, 38(10), 609–613.
Tjia, J., & Givens, J. (2012). Ethical framework for medication discontinuation in nursing home residents with limited life expectancy. Clinics in Geriatric Medicine, 28(2), 255–272.
Tuckett, A. G. (2012). The experience of lying in dementia care: A qualitative study. Nursing Ethics, 19(1), 7–20.
Warner, J., & Nomani, E. (2008). Giving consent in dementia research. Lancet, 372(9634), 183–185.
Welsh, S., & Deahl, M. (2002). Covert medication–ever ethically justifiable? Psychiatric Bulletin, 26(4), 123–126.
Whitehouse, P., Frisoni, G. B., & Post, S. (2004). Breaking the diagnosis of dementia. Lancet Neurology, 3(2), 124–128.
Wright, C. F., Hall, A., Matthews, F. E., & Brayne, C. (2009). Biomarkers, dementia, and public health. Annals New York Academy of Sciences, 1180(1), 11–19.
Acknowledgements
Nil
Conflict of Interest
Nil
Funding
Nil
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2021 The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd.
About this chapter
Cite this chapter
De Sousa, A., D’Souza, R. (2021). Ethical Issues in Dementia—Global Challenges. In: Shankardass, M.K. (eds) Dementia Care. Springer, Singapore. https://doi.org/10.1007/978-981-16-3864-0_16
Download citation
DOI: https://doi.org/10.1007/978-981-16-3864-0_16
Published:
Publisher Name: Springer, Singapore
Print ISBN: 978-981-16-3863-3
Online ISBN: 978-981-16-3864-0
eBook Packages: Social SciencesSocial Sciences (R0)