Person-Oriented Research Ethics and Dementia:The Lack of Consensus


  • Olivia Silva The George Washington University
  • M. Ariel Cascio Central Michigan University
  • Eric Racine Institut de recherches cliniques de Montréal, McGill University, Université de Montréal



research ethics, bioethics, dementia, selfhood, empowerment, autonomy


Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.


American Anthropological Association. (2012). Code of ethics. Retrieved December 21, 2019, from

Antelius, E. and Plejert, C. 2016. “Ethnoculturally-profiled care: Dementia caregiving targeted towards Middle Eastern immigrants living in Sweden.” Anthropology & Aging 37(1):9-26

Assari, S., and M. M. Lankarani. 2016. "Depressive symptoms are associated with more hopelessness among white than black older adults." Frontiers in Public Health 4:82. doi: 10.3389/fpubh.2016.00082.

Black, B. S., H. Taylor, P. V. Rabins, and J. Karlawish. 2014. "Researchers' perspectives on the role of study partners in dementia research." International Psychogeriatrics 26 (10):1649-1657. doi: 10.1017/s1041610214001203.

Black, B. S., M. Wechsler, and L. Fogarty. 2013. "Decision making for participation in dementia research." American Journal of Geriatric Psychiatry 21 (4):355-363. doi: 10.1016/j.jagp.2012.11.009.

Benedict R. 1934. Anthropology and the abnormal. The Journal of General Psychology 10(1):59–82.

Buller, Thomas. 2015a. "Response to commentaries by Karin Rolanda Jongsma and Suzanne van de Vathorst, and Oliver Hallich." Journal of Medical Ethics 41 (8):711.

----. 2015b. "Advance consent, critical interests and dementia research." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 41 (8):701-707.

Bunn F, Goodman C, Sworn K, Rait G, Brayne C, Robinson L, McNeilly E, and Lliffe S. 2012. Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies. PLOS Medicine 9(10): e1001331.

Cary, M. S., J. D. Rubright, J. D. Grill, and J. Karlawish. 2015. "Why are spousal caregivers more prevalent than nonspousal caregivers as study partners in AD dementia clinical trials?" Alzheimer Disease & Associated Disorders 29 (1):70-74.

Cascio, M. A., and Racine, E. 2018. Person-oriented research ethics: integrating relational and everyday ethics in research. Accountability in research, 25(3), 170-197.

Cohen, Lawrence. No Aging in India: Alzheimer's, The Bad Family, and Other Modern Things. Berkeley: University of California Press, c1998 1998.

Dempsey, L., M. Dowling, P. Larkin, and K. Murphy. 2016. "Sensitive interviewing in qualitative research." Research in Nursing & Health 39 (6):480-490. doi: 10.1002/nur.21743.

Dowson, L., C. Doyle, and V. Rayner. 2013. "Scoping the ethics of dementia research within an Australian human research context." Journal of Law & Medicine 21 (1):210-6.

Dunn, L. B., S. R. Fisher, M. Hantke, P. S. Appelbaum, D. Dohan, J. P. Young, and L. W. Roberts. 2013. ""Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice." The American Journal of Geriatric Psychiatry : Official Journal of the American Association for Geriatric Psychiatry 21 (4):337-45.

Fetterolf, M. G. 2015. “Personhood-based dementia care: Using the familial caregiver as a bridging model for professional caregivers.” Anthropology & Aging 63(1):82-100.

Forlini, C. 2017. "Patient preferences may be indicative of normative issues in dementia research." Journal of Alzheimers Disease 59 (1):11-12. doi: 10.3233/jad-170328.

George DR, Whitehouse PJ, and J. Ballenger. 2011. “The Evolving Classification of Dementia: Placing the DSM-V in a Meaningful Historical and Cultural Context and Pondering the Future of ‘Alzheimer’s.’” Culture, Medicine, and Psychiatry 35(3):417 – 435.

Gilbert, T., A. Bosquet, C. Thomas-Anterion, M. Bonnefoy, and O. Le Saux. 2017. "Assessing capacity to consent for research in cognitively impaired older patients." Clinical Interventions in Aging 12:1553-1563. doi: 10.2147/cia.s141905.

Gray, Karen, Simon Chester Evans, Amanda Griffiths, and Justine Schneider. 2017. "Critical reflections on methodological challenge in arts and dementia evaluation and research." Dementia 17 (6):775-784.

Grill, Joshua D., and Jason Karlawish. 2010. "Addressing the challenges to successful recruitment and retention in Alzheimer's disease clinical trials." Alzheimer's Research & Therapy 2 (34):2-11 doi: 10.1186/alzrt58.

Hall, Alex, Christine Brown Wilson, Emma Stanmore, and Chris Todd. International journal of nursing studies Todd. 2017. "Implementing monitoring technologies in care homes for people with dementia: A qualitative exploration using Normalization Process Theory." 72:60-70.

Hallich, Oliver. 2015. "Tom Buller on the principle of precedent autonomy and the relation between critical and experiential interests." Journal of Medical Ethics 41:709-711.

Heggestad, A. K. T., P. Nortvedt, and A. Slettebo. 2013. "The importance of moral sensitivity when including persons with dementia in qualitative research." Nursing Ethics 20 (1):30-40. doi: 10.1177/0969733012455564.

Henwood, T., C. Baguley, and C. Neville. 2015. "Achieving ethics approval in residential aged care research: A protective process or barrier." Australasian Journal on Ageing 34 (3):201-201. doi: 10.1111/ajag.12202.

Higgins, P. 2013. "Involving people with dementia in research." Nursing Times 109 (28):20-3.

Hollan, D. 1997. “The Relevance of Person-Centered Ethnography to Cross-Cultural Psychiatry.” Transcultural Psychiatry 34 (2):219-234. doi: doi:10.1177/136346159703400203.

Holland, S., and A. Kydd. 2015. "Ethical issues when involving people newly diagnosed with dementia in research." Nurse Researcher 22 (4):25-29.

Hughes, T., and M. C. Romero. 2015. "A processural consent methodology with people diagnosed with dementia." Quality in Ageing and Older Adults 16 (4):222-234. doi: 10.1108/qaoa-03-2015-0012.

Jenkins, C., A. Smythe, M. Galant-Miecznikowska, P. Bentham, and J. Oyebode. 2016. "Overcoming challenges of conducting research in nursing homes." Nursing Older People 28 (5):16-23.

Johnson, R. A., and J. Karlawish. 2015. "A review of ethical issues in dementia." International Psychogeriatrics 27 (10):1635-47.

Jongsma, K., W. Bos, and S. van de Vathorst. 2015. "Morally relevant similarities and differences between children and dementia patients as research subjects: Representation in legal documents and ethical guidelines." Bioethics 29 (9):662-70.

Jongsma, K. R., and S. van de Vathorst. 2015a. "Beyond competence: advance directives in dementia research." Monash Bioethics Review 33 (2-3):167-180. doi: 10.1007/s40592-015-0034-y.

Jongsma, K. R., and S. van de Vathorst. 2015b. "Dementia research and advance consent: It is not about critical interests." Journal of Medical Ethics 41 (8):708-9.

Juengst, Eric T. Journal of Anti-Aging Medicine. 2002. "Growing pains: bioethical perspectives on growth hormone replacement research." 5 (1):73-79.

Kalichman, M. 2009. “Evidence-Based Research Ethics." The American Journal of Bioethics 9 (6-7):85-87.

Kim, S. Y. H., H. M. Kim, K. A. Ryan, P. S. Appelbaum, D. S. Knopman, L. Damschroder, and R. De Vries. 2013. "How important is 'accuracy' of surrogate decision-making for research participation?" PLoS One 8 (1):1-8. doi: 10.1371/journal.pone.0054790.

Kleinman, A. 1988. The illness narratives: Suffering, healing, and the human condition. New York: Basic Books.

Knopman, D., E. Alford, K. Tate, M. Long, and A. S. Khachaturian. 2017. "Patients come from populations and populations contain patients. A two-stage scientific and ethics review: The next adaptation for single institutional review boards." Alzheimer's & Dementia: The Journal of the Alzheimer's Association 13 (8):940-946.

Leibing, A., & Cohen, L. (Eds.). 2006. Thinking About Dementia: Culture, Loss, and the Anthropology of Senility. New Brunswick, New Jersey; London: Rutgers University Press. doi:10.2307/j.ctt5hjbhp

LeVine, R.A. 1982. Culture, Behavior, and Personality. New Brunswick, New Jersey, USA: Aldine Publishing Company.

Lock, Margaret M. 1993. Encounters with aging: mythologies of menopause in Japan and North America. Berkeley: University of California Press.

----. 2013. The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton University Press.

Lock, M., & Kaufert, P. 2001. Menopause, local biologies, and cultures of aging. American Journal of Human Biology, 13(4), 494-504.

Lichtner, V. 2014. "The everyday ethics of field work research with vulnerable patients." Studies in Health Technology & Informatics 205:813-7.

Mahin-Babaei, Fariba, Jamal Hilal, and Julian Hughes. 2016. "The basis, ethics and provision of palliative care for dementia: A review." 83:3-8.

Mayo Clinic. 2018. "Diagnosing Alzheimer's: How Alzheimer's is diagnosed." Mayo Clinic, Last Modified October, 2016, accessed March 23rd.

McDougall, Rosalind. 2015. "Reviewing literature in bioethics research: Increasing rigour in non-systematic reviews." Bioethics 29 (7):523-528.

McNally, M., and W. Lahey. 2015. "Frailty's place in ethics and law: Some thoughts on equality and autonomy and on limits and possibilities for aging citizens." Interdisciplinary Topics In Gerontology And Geriatrics 41:174-85.

Meloni, F., K. Vanthuyne, and C. Rousseau. 2015. “Towards a Relational Ethics: Rethinking Ethics, Agency and Dependency in Research with Children and Youth.” Anthropological Theory 15 (1):106-123. doi: 10.1177/1463499614565945.

Monroe, T. B., K. A. Herr, L. C. Mion, and R. L. Cowan. 2013. "Ethical and legal issues in pain research in cognitively impaired older adults." International Journal of Nursing Studies 50 (9):1283-1287. doi: 10.1016/j.ijnurstu.2012.11.023.

Murray, A. 2013. "The mental capacity act and dementia research." Nursing Older People 25 (3):14-20.

Novek, S., and H. Wilkinson. 2017. "Safe and inclusive research practices for qualitative research involving people with dementia: A review of key issues and strategies." Dementia 0 (0):1-18.

Oliver M. 1983. Social Work with Disabled People. Basingstoke: Macmillan.

Oneill, Desmond. 2013. "Consent, assent and dissent in dementia care and research." In Ethics for Graduate Researchers: A Cross-Disciplinary Approach, edited by Cathriona Russell, Linda Hogan, and Maureen Junker-Kenny, 121-136. London, UK: Elsevier.

Onyemelukwe, C. 2013. "Neuroscience research involving older persons in Canada: Some legal and neuroethical concerns." Medicine & Law 32 (3):389-422.

Overton, E., P. S. Appelbaum, S. R. Fisher, D. Dohan, L. W. Roberts, and L. B. Dunn. 2013. "Alternative decision-makers' perspectives on assent and dissent for dementia research." American Journal of Geriatric Psychiatry 21 (4):346-354. doi: 10.1016/j.jagp.2013.01.027.

Pachana, N. A., J. Liddle, N. M. Peel, E. Beattie, C. Juang, and B. G. Knight. 2015. "Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus." Journal of Alzheimers Disease 43 (3):701-707. doi: 10.3233/jad-141956.

Palmer, B. W., A. L. Harmell, L. L. Pinto, L. B. Dunn, S. Y. Kim, S. Golshan, and D. V. Jeste. 2017. "Determinants of capacity to consent to research on Alzheimer's disease." Clinical Gerontologist 40 (1):24-34.

Partridge, Brad, Jayne Lucke, Helen Bartlett, and Wayne Hall. Rejuvenation research Hall. 2009. "Ethical, social, and personal implications of extended human lifespan identified by members of the public." 12 (5):351-357.

Persson, A., Newman, C. E., Mao, L., & de Wit, J. (2016). On the margins of pharmaceutical citizenship: not taking HIV medication in the “treatment revolution” era. Medical anthropology quarterly, 30(3), 359-377.

Porteri, C., and C. Petrini. 2015. "Research involving subjects with Alzheimer's disease in Italy: The possible role of family members." BMC Medical Ethics 16 (1):12.

Poscia, A., A. Collamati, S. Milovanovic, D. L. Vetrano, G. Liotta, T. Petitti, M. L. Di Pietro, N. Magnavita, W. Ricciardi, A. Cherubini, and G. Onder. 2017. "Methodological issues in the observational studies conducted in older population: A narrative review." Epidemiology Biostatistics and Public Health 14 (2):1-7. doi: 10.2427/12627.

Prusaczyk, B., S. M. Cherney, C. R. Carpenter, and J. M. DuBois. 2017. "Informed consent to research with cognitively impaired adults: Transdisciplinary challenges and opportunities." Clinical Gerontologist 40 (1):63-73. doi: 10.1080/07317115.2016.1201714.

Rebekah, Luff, Laybourne Anne, Ferreira Zara, and Meyer Julienne. 2015. "A guide to research with care homes." Quality in Ageing and Older Adults 16 (4):186-194. doi: 10.1108/QAOA-06-2015-0027.

Reed, P., J. Carson, and Z. Gibb. 2017. "Transcending the tragedy discourse of dementia: An ethical imperative for promoting selfhood, meaningful relationships, and well-being." AMA Journal of Ethics 19 (7):693-703.

Robillard, Julie M., Tanya L. Feng, and Allyson Rosen. 2017. "When patient engagement and research ethics collide: Lessons from a dementia forum." JAD Journal of Alzheimer's Disease 59 (1):1-10.

Rosen, Allyson, and Julie C. Weitlauf. 2015. "Different diagnosis, shared vulnerabilities: The value of cross disorder validation of capacity to consent." JAD Journal of Alzheimer's Disease 46 (1):11-13.

Scheper-Hughes, Nancy, and Margaret M. Lock. 1987. "The mindful body: A prolegomenon to future work in medical anthropology." Medical Anthropology Quarterly 1 (1):6-41.

Swarbrick, C. M., E. Sampson, and J. Keady. 2017. "Notes from the hospital bedside: Reflections on researcher roles and responsibilities at the end of life in dementia." Quality in Ageing and Older Adults 18 (3):201-211. doi: 10.1108/qaoa-09-2016-0038.

Taylor, J. S. 2008. On recognition, caring, and dementia. Medical anthropology quarterly, 22(4), 313-335.

Taylor, J. S., DeMers, S. M., Vig, E. K. and Borson, S. 2012. The Disappearing Subject: Exclusion of People with Cognitive Impairment and Dementia from Geriatrics Research. Journal of the American Geriatrics Society, 60: 413-419. doi:10.1111/j.1532-5415.2011.03847.x

Thorogood, A., C. D. St-Pierre, and B. M. Knoppers. 2017. "Substitute consent to data sharing: A way forward for international dementia research?" Journal of Law and the Biosciences 4 (1):133-158. doi: 10.1093/jlb/lsw063.

US National Institutes of Health. 2017. "Estimates of funding for various research, condition, and disease categories (RCDC)." National Institutes of Health, accessed 04/03/2018.

van Rookhuijzen, A. E., D. P. Touwen, W. de Ruijter, D. P. Engberts, and R. C. van der Mast. 2014. "Deliberating clinical research with cognitively impaired older people and their relatives: An ethical add-on study to the protocol "Effects of Temporary Discontinuation of Antihypertensive Treatment in the Elderly (DANTE) with Cognitive Impairment"." The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry 22 (11):1233-40.

Wadekar, M., A. Sharma, and G. Battaglia. 2015. "Patient-Centered Outcomes Research (PCOR): How can we optimize outcomes in CNS research?" Innovations in Clinical Neuroscience 12 (3-4):27.

West, E., A. Stuckelberger, S. Pautex, J. Staaks, and M. Gysels. 2017. "Operationalising ethical challenges in dementia research-a systematic review of current evidence." Age and Ageing 46 (4):678-687. doi: 10.1093/ageing/afw250.

Whelan, P. J., R. Walwyn, F. Gaughran, and A. Macdonald. 2013. "Impact of the demand for 'proxy assent' on recruitment to a randomised controlled trial of vaccination testing in care homes." Journal of Medical Ethics 39 (1):36-40.

Wildeman, S., L. B. Dunn, and C. Onyemelukwe. 2013. "Incapacity in Canada: Review of laws and policies on research involving decisionally impaired adults." The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry 21 (4):314-25.

Witham, G., A. Beddow, and C. Haigh. 2015. "Reflections on access: Too vulnerable to research?" Journal of Research in Nursing 20 (1):28-37. doi: 10.1177/1744987113499338.

Wood, F., H. Prout, A. Bayer, D. Duncan, J. Nuttall, K. Hood, C. C. Butler, and Paad Study Team. 2013. "Consent, including advanced consent, of older adults to research in care homes: A qualitative study of stakeholders' views in South Wales." Trials [Electronic Resource] 14:247.

World Health Organization. 2015. “Dementia: A public health priority.” World Health Organization, Last Modified 2015, accessed January 5, 2020.

----. 2018. "Dementia." World Health Organization, Last Modified December 2017, accessed March 23, 2019.

Young, B. 2015. “Longing glances: Photographs from the series ‘Far From Home.’” Anthropology & Aging 36(2):206-211.