Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-08T08:25:24.011Z Has data issue: false hasContentIssue false
  • English
  • Français

Ethical aspects of using GPS for tracking people with dementia: recommendations for practice

Published online by Cambridge University Press:  03 October 2011

Ruth Landau  and
Shirli Werner
Ruth Landau*
Affiliation:
Paul Baerwald School of Social Work and Social Welfare, The Hebrew University of Jerusalem, Jerusalem, Israel
Shirli Werner
Affiliation:
Paul Baerwald School of Social Work and Social Welfare, The Hebrew University of Jerusalem, Jerusalem, Israel
*
Correspondence should be addressed to: Ruth Landau, PhD, Associate Professor, Paul Baerwald School of Social Work and Social Welfare, The Hebrew University of Jerusalem, Mount Scopus, Jerusalem 91905, Israel. Phone: +972 3 6426793; Fax: +972 3 6415918. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background: Problems with out-of-home mobility are among the more common behavioral disturbances in dementia. Today people with dementia can be aided by easily accessible assistive technologies, such as tracking devices using Global Positioning Systems (GPS). Attitudes toward these technologies are still inconclusive and their use with people with dementia raises ethical concerns. The lack of ethical consensus on the use of GPS for people with dementia underlines the need for clearer policies and practical guidelines.

Methods: Here we summarize qualitative and quantitative findings from a larger research project on the ethical aspects of using GPS for tracking people with dementia.

Results: The findings are formulated in a list of recommendations for policy-makers as well as for professional and family caregivers. Among other points, the recommendations indicate that the preferences and best interests of the people with dementia should be central to the difficult decisions required in dementia care. Further, no-one should be coerced into using tracking technology and, where possible, people with dementia must be involved in the decision-making and their consent sought.

Conclusions: The decision whether, when and how to use GPS for tracking people with dementia should be made at the time of diagnosis jointly by the person with dementia, his/her family and professional caregivers. This decision should be made in formal structured meetings facilitated by a professional team.

Keywords

dementiaautonomysafetycaregiversGPS
Type
Research Article
Information
International Psychogeriatrics , Volume 24 , Issue 3 , March 2012 , pp. 358 - 366
Copyright
Copyright © International Psychogeriatric Association 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer's Disease International (2010). The Global Voice on Dementia: Statistics. Available at: http://www.alz.co.uk/research/statistics; last accessed 9 May 2011.Google Scholar
Alzheimer's Society UK (2007). Alzheimer's Society Comments on Rights, Risks, and Restraints: A Study Investigating Restraint in the Care of Older People. Available at: http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=238.Google Scholar
Becker, D. and Kahana, Z. (1993). Informed consent in demented patients: a question of hours. Medicine and Law, 12, 271–276.Google ScholarPubMed
Berger, J. T., DeRenzo, E. G. and Schwartz, J. (2008). Surrogate decision-making: Reconciling ethical theory and clinical practice. Annals of Internal Medicine, 149, 48–53.CrossRefGoogle ScholarPubMed
Black, B. S. et al. (2009). Surrogate decision makers’ understanding of dementia patients’ prior wishes for end of life care. Journal of Aging and Health, 21, 627–650.CrossRefGoogle ScholarPubMed
Boyle, G. (2008). The Mental Capacity Act 2005: Promoting the citizenship of people with dementia? Health and Social Care in the Community, 16, 529–537.CrossRefGoogle ScholarPubMed
Brittain, K., Corner, L., Robinson, L. and Bond, J. (2010). Ageing in place and technologies of place: the lived experience of people with dementia in changing social, physical and technological environments. Sociology of Health and Illness, 32, 272–287.CrossRefGoogle ScholarPubMed
Dorsten, A. M., Sifford, K. S., Bharucha, A., Mecca, L. P. and Wactlar, H. (2009). Ethical perspectives on emerging assistive technologies: insights from focus groups with stakeholders in long term facilities. Journal of Empirical Research on Human Research Ethics, 4, 25–36.CrossRefGoogle Scholar
Elliott, B. A., Gessert, C. E. and Peden-McAlpine, C. (2008). Family decision making in advanced dementia: narrative and ethics. Scandinavian Journal of Caring Sciences, 23, 251–258.CrossRefGoogle Scholar
Essen, A. (2008). The two facets of electronic care surveillance: an exploration of the views of older people who live with monitoring devices. Social Science and Medicine, 67, 128–136.CrossRefGoogle ScholarPubMed
Fisk, J. D., Beattie, B. L. and Donelly, M. (2007). Ethical considerations for decision making for treatment and research participation. Alzheimer's and Dementia, 3, 411–417.CrossRefGoogle ScholarPubMed
Georges, J., Jansen, S., Jackson, J., Meyrieux, A., Sadowska, A. and Selmes, M. (2008). Alzheimer's disease in real life: the dementia carer's survey. International Journal of Geriatric Psychiatry, 23, 546–551.CrossRefGoogle ScholarPubMed
Harada, T. et al. (2008). Microchips will decrease the burden on the family of elderly people with wandering dementia. International Medical Journal, 15, 25–27.Google Scholar
Hudson, D. L. and Cohen, M. E. (2010). Intelligent agents in home healthcare. Annals of Telecommunications -Annales de Telecommunications, 65, 693–700.Google Scholar
Hughes, J. C., Newby, J., Louw, S. J., Campbell, G. and Hutton, J. L. (2008). Ethical issues and tagging in dementia: a survey. Journal of Ethics in Mental Health, 3, 1–6.Google Scholar
Keating, D. T., Nayeem, K., Gilmartin, J. J. and O'Keeffe, S. T. (2005). Advance directives for truth disclosure. Chest, 128, 1037–1039.CrossRefGoogle ScholarPubMed
Kearns, W. D. and Fozard, J. L. (2007). Technologies to manage wandering. In Nelson, A. L. and Algase, D. L. (eds.), Evidence-based Protocols for Managing Wandering Behaviors (pp. 277–297). New York: Springer Publishing Company.Google Scholar
Kelly, K., Reinhart, S. and Brooks-Danso, A. (2008). Executive summary: professional partners supporting family caregivers. Journal of Social Work Education, 44, 5–15.CrossRefGoogle Scholar
Kettl, P. (2007). Helping families with end-of-life care in Alzheimer's disease. Journal of Clinical Psychiatry, 68, 445–450.CrossRefGoogle ScholarPubMed
Knapp, S. and Vande Creek, L. (2005). Ethical and patient management issues with older, impaired drivers. Professional Psychology: Research and Practice, 36, 197–202.CrossRefGoogle Scholar
Landau, R., Werner, S., Auslander, G. K., Shoval, N. and Heinik, J. (2009). Attitudes of family and professional caregivers towards the use of GPS for tracking patients with dementia: an exploratory study. British Journal of Social Work, 39, 670–692.CrossRefGoogle Scholar
Landau, R., Auslander, G. K., Werner, S., Shoval, N. and Heinik, I. (2010a). Family and professional caregivers’ views of using advanced technology to track people with dementia: a qualitative study. Qualitative Health Research, 20, 409–419.CrossRefGoogle Scholar
Landau, R., Werner, S., Auslander, G. K., Shoval, N. and Heinik, J. (2010b). What do cognitively intact older people think about the use of electronic tracking devices for people with dementia. International Psychogeriatrics, 22, 1301–1309.CrossRefGoogle ScholarPubMed
Landau, R., Auslander, G. K., Werner, S., Shoval, N. and Heinik, J. (2011). Who should make the decision on the use of GPS for people with dementia? Aging and Mental Health, 15, 78–84.CrossRefGoogle ScholarPubMed
Lautrette, A., Ciroldi, M., Ksibi, H. and Azoulay, E. (2006). End-of-life family conferences: rooted in the evidence. Critical Care Medicine, 34, S364–S372.CrossRefGoogle ScholarPubMed
Loewy, E. and Springer Loewy, R. (2000). The Ethics of Terminal Care: Orchestrating the End of Life. New York: Kluwer Academic/PlenumGoogle Scholar
McCreadie, C. and Tinker, A. (2005). The acceptability of assistive technology to older people. Ageing & Society, 25, 91–110.CrossRefGoogle Scholar
McShane, R., Hope, T. and Wilkinson, J. (1994). Tracking patients who wander: ethics and technology. Lancet, 343, 1274.CrossRefGoogle ScholarPubMed
McShane, R., Gedling, K., Kenward, B., Kenward, R., Hope, T. and Jacoby, R. (1998). The feasibility of electronic tracking devices in dementia: Aa telephone survey and case series. International Journal of Geriatric Psychiatry, 13, 556–563.3.0.CO;2-6>CrossRefGoogle Scholar
Moorman, S. M. and Carr, D. (2008). Spouses’ effectiveness as end of life health care surrogates: uncertainty and errors of overtreatment or undertreatment. Gerontologist, 48, 811–819.CrossRefGoogle ScholarPubMed
Moorman, S. M., Hauser, R. M. and Carr, D. (2009). Do older adults know their spouses’ end of life treatment preferences? Research on Aging, 31, 463–491.CrossRefGoogle ScholarPubMed
Niemeijer, A. R., Fredericks, B. J. M., Riphagen, I. I,. Legemaate, J., Eefsting, J. A. and Hertogh, C. M. P. M. (2010). Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: an overview of the literature. International Psychogeriatrics, 22 (Special Issue), 1129–1142.CrossRefGoogle ScholarPubMed
O'Leary, E. and Barry, N. (2004). Professional and ethical issues when working with older adults. In Tribe, R. and Morrissey, J. (eds.), Handbook of Professional and ethical practice for psychologists (pp. 197–208). Hove and New York: Brunner-Routledge.Google Scholar
Papastavrou, E., Kalokerinou, A., Papacostas, S., Tsangari, H. and Sourtzi, P. (2007). Caring for a relative with dementia: family caregiver burden. Journal of Advanced Nursing, 58, 446–457.CrossRefGoogle ScholarPubMed
Rialle, V., Ollivet, C., Guigui, C. and Herve, C. (2008). What do family caregivers of Alzheimer's disease patients desire in smart home technologies? Methods of Information in Medicine, 47, 63–69.Google ScholarPubMed
Robinson, L. et al. (2006). Wandering in dementia: a systematic literature review of the effectiveness of non-pharmacological interventions to prevent wandering in dementia and evaluation of the ethical implications and acceptability of their use. Health Technology Assessment, 10 (26), 1–124.CrossRefGoogle ScholarPubMed
Robinson, L. et al. (2007). Balancing rights and risks: conflicting perspectives in the management of wandering in dementia. Health, Risk and Society, 9, 389–406.CrossRefGoogle Scholar
Robinson, L., Brittain, K., Lindsay, S., Jackson, D. and Olivier, P. (2009). Keeping In Touch Everyday (KITE) project: developing assistive technologies with people with dementia and their carers to promote independence. International Psychogeriatrics, 21, 494–502.CrossRefGoogle ScholarPubMed
Robinson, L., Barnford, C., Briel, R., Spencer, J. and Whitty, P. (2010). Improving patient-centred care for people with dementia in medical encounters: an educational intervention for old age psychiatrists. Psychogeriatrics, 22, 129–138.CrossRefGoogle Scholar
Shoval, N. et al. (2008). The use of advanced tracking technologies for the analysis of mobility in Alzheimer's disease and related cognitive diseases. BMC Geriatrics, 8, 7.CrossRefGoogle ScholarPubMed
Siegel, M. D. (2009). End of life decision making in the ICU. Clinics in Chest Medicine, 30, 181–194.CrossRefGoogle ScholarPubMed
Stenwall, E. et al. (2007). Encountering the older confused patient: professional carers experiences. Scandinavian Journal of Caring Sciences, 21, 515–522.CrossRefGoogle ScholarPubMed
Topo, P. (2009). Dementia patients and their caregivers:a literature review. Journal of Applied Gerontology, 28, 5–37.CrossRefGoogle Scholar
van Hoof, J., Kort, H. S., Rutten, P. G. and Duijnstee, M. S. (2011). Ageing-in-place with the use of ambient intelligence technology: perspectives of older users. International Journal of Medical Informatics, 80, 310–311.CrossRefGoogle ScholarPubMed
Weissman, D. E. (2004). Decision making at a time of crisis near the end of life. JAMA, 292, 1738–1743.CrossRefGoogle Scholar
Werner, S. and Landau, R. (2011). Social workers’ and students’ attitudes toward electronic tracking of people with Alzheimer's disease. Social Work Education, 30, 541–557.CrossRefGoogle Scholar
Westphall, A., Dingjan, P. and Attoe, R. (2010). What can low and high technologies do for late-life mental disorders? Current Opinions in Psychiatry, 23, 510–515CrossRefGoogle Scholar
Wey, S. (2007). The Ethical Use of Technology. Available at: www.atdementia.org.uk; last accessed 18 June 2008.Google Scholar
Wigg, J. M. (2010). Liberating the wanderers: Using technology to unlock doors for those with dementia. Sociology of Health and Illness, 32, 288–303.CrossRefGoogle ScholarPubMed
White, E. B., Montgomery, P. and McShane, R. (2010). Electronic tracking for people with dementia who get lost outside the home: a study of the experience of familial carers. British Journal of Occupational Therapy, 73, 152–159.CrossRefGoogle Scholar
Zwijsen, S. A., Niemeijer, A. R. and Hertogh, C. M. (2011). Ethics of using assistive technology in the care for community-dwelling elderly people: an overview of the literature. Aging and Mental Health, 15, 419–427.CrossRefGoogle ScholarPubMed