AASCIT - Journal - All Issues

Journal of Social Sciences and Humanities

The Journal

Indexing

Manuscript Information

Research into the Experience of Dementia: Methodological and Ethical Challenges

Journal of Social Sciences and Humanities
Vol.1 , No. 1, Publication Date: Mar. 10, 2018, Page: 15-19

3656 Views Since March 10, 2018, 337 Downloads Since Mar. 10, 2018

Paper in PDF (251K)

Follow on

Authors

[1]	Caroline Hampson, Department of Health, Psychology and Social Sciences, University of Cumbria, Lancaster, United Kingdom.
[2]	Karen Morris, Department of Health, Psychology and Social Sciences, University of Cumbria, Carlisle, United Kingdom.

Abstract

Conducting research in the field of dementia care can be fraught with moral and ethical dilemmas, particularly with regard to consent and capacity. These issues apply to all aspects of the research process and are an important consideration for the research to be considered ethical and of relevance to the future of dementia care. This article considers the importance of ethical issues in research involving people with dementia, with specific regard to consent and capacity and on minimising harm. Methodological suggestions are proposed which may assist in ensuring research is ethical and maximise participation of people with dementia. In conclusion, it is argued that consideration of these factors at a methodological level can increase the potential for engagement without compromising the wellbeing, dignity and protection of the person with dementia.

Keywords

Ethics, Dementia, Methodology, Research

Reference

[01]	Wilkinson, H. (2002). The Perspectives of People with Dementia: Research Methods and Motivations. Philadelphia, PA: Jessica Kingsley Publishers.
[02]	Alzheimer Europe (2013) Involving people with dementia: Ethics of dementia research. Luxembourg: Alzheimer Europe.
[03]	Millett, S. (2011) 'Self and embodiment: A bio-phenomenological approach to dementia', Dementia, 0 (0), pp. 1-14.
[04]	Cohen-Mansfield, J., Golander, H. and Arnheim, G. (2000) 'Self-identity in older persons suffering from dementia: preliminary results', Social science & medicine, 51 (3), pp. 381-394.
[05]	Nygård, L. (2006). How can we get access to the experiences of people with dementia? Suggestions and reflections. Scandinavian Journal of Occupational Therapy, 13 (2), 101-112.
[06]	McKeown, J., Clarke, A., Ingleton, C., & Repper, J. (2010). Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19 (13-14), 1935-1943.
[07]	Wiersma, E. C. (2011) 'Using Photovoice with people with early-stage Alzheimer’s disease: A discussion of methodology', Dementia, 10 (2), pp. 203-216.
[08]	Cotrell, V. and Schulz, R. (1993) 'The Perspective of the Patient with Alzheimer's Disease: A Neglected Dimension of Dementia Research', The Gerontologist, 33 (2), pp. 205-211.
[09]	Moore, T. F., & Hollett, J. (2003). Giving voice to persons living with dementia: the researcher's opportunities and challenges. Nursing science quarterly, 16 (2), 163-167.
[10]	McKillop, J. and Wilkinson, H. (2004) 'Make it Easy on Yourself!: Advice to Researchers from Someone with Dementia on Being Interviewed', Dementia, 3 (2), pp. 117-125.
[11]	Bartlett, R. (2012) 'Modifying the diary interview method to research the lives of people with dementia', Qualitative health research, 22 (12), pp. 1717-1726.
[12]	Medical Research Council (2007) MRC Ethics Guide 2007: Medical research involving adults who cannot consent. London: Medical Research Council.
[13]	Royal College of Nursing (2011) Informed consent in health and social care research: RCN guide for nurses (2nd Edition). London: Royal College of Nurses.
[14]	Health Research Authority (2014) Consent and Participant Information Sheet Preparation Guidance. London: Health Research Authority.
[15]	Beuscher, L. and Grando, V. T. (2009) 'Challenges in conducting qualitative research with individuals with dementia', Research in Gerontological nursing, 2 (1), pp. 6-11.
[16]	Cubit, K. (2010) 'Informed consent for research involving people with dementia: A grey area', Contemporary nurse, 34 (2), pp. 230-236.
[17]	Edelstein, B. (2000) 'Challenges in the assessment of decision-making capacity', Journal of Aging studies, 14 (4), pp. 423-437.
[18]	Karlawish, J. (2007) 'Measuring decision-making capacity in cognitively impaired individuals', Neurosignals, 16 (1), pp. 91-98.
[19]	Beattie, E. (2009) 'Research participation of individuals with dementia: Decisional capacity, informed consent, and considerations for nurse investigators', Research in gerontological nursing, 2 (2), pp. 94-102.
[20]	Grisso, T. and Appelbaum, P. S. (1998) Assessing competence to consent to treatment: A guide for physicians and other health professionals. Oxford University Press, USA.
[21]	Dunn, L. B., Nowrangi, M. A., Palmer, B. W., Jeste, D. V. and Saks, E. R. (2006) 'Assessing decisional capacity for clinical research or treatment: a review of instruments', American Journal of Psychiatry, 163 (8), pp. 1323-1334.
[22]	Lai, J. M. and Karlawish, J. (2007) 'Assessing the capacity to make everyday decisions: a guide for clinicians and an agenda for future research', The American Journal of Geriatric Psychiatry, 15 (2), pp. 101-111.
[23]	Pratt, R. (2002). Nobody’s ever asked how I felt’. In H. Wilkinson (Ed.), The perspectives of people with dementia: Research methods and motivations (pp. 165-182). London: Jessica Kingsley Publishers.
[24]	Hougham, G. W. (2005) 'Waste not, want not: Cognitive impairment should not preclude research participation', The American Journal of Bioethics, 5 (1), pp. 36-37.
[25]	Hougham, G. W., Sachs, G. A., Danner, D., Mintz, J., Patterson, M., Roberts, L. W., Siminoff, L. A., Sugarman, J., Whitehouse, P. J. and Wirshing, D. (2003) 'Empirical research on informed consent with the cognitively impaired', IRB: Ethics & Human Research, 25 (5), pp. S26-S32.
[26]	Hubbard, G., Downs, M., & Tester, S. (2002). Including the perspectives of older people in institutional care during the consent process. The perspectives of people with dementia. Research methods and motivations, 63-82.
[27]	The Scottish Dementia Working Group Research Sub-group (2013) Core principles for involving people with dementia in research. Edinburgh: The University of Edinburgh.
[28]	Dewing, J. (2007). Participatory research A method for process consent with persons who have dementia. Dementia, 6 (1), 11-25.
[29]	Clarke, C., & Keady, J. (2002). Getting down to brass tacks: A discussion of data collection with people with dementia. The perspectives of people with dementia: Research methods and motivations, 25-46.
[30]	Moody, H. R. (1992). Ethics in an aging society. Baltimore: John Hopkins University Press.
[31]	Grout, G. (2004). Using negotiated consent in research and practice. Nursing older people, 16 (4), 18-20.
[32]	Kim, S. Y. (2011). The ethics of informed consent in Alzheimer disease research. Nature Reviews Neurology, 7 (7), 410-414.
[33]	Black, B. S., Rabins, P. V., Sugarman, J., & Karlawish, J. H. (2010). Seeking assent and respecting dissent in dementia research. The American Journal of Geriatric Psychiatry, 18 (1), 77-85.
[34]	Batchelor-Aselage, M., Amella, E., Zapka, J., Mueller, M., & Beck, C. (2014). Research with dementia patients in the nursing home setting: A protocol for informed consent and assent. IRB: Ethics & Human Research, 36 (2), 14-20.
[35]	Pratt, R., & Wilkinson, H. (2001). T̓ell Me the Truth ̕: The Effect of Being Told the Diagnosis of Dementia from the Perspective of the Person with Dementia: Mental Health Foundation London.
[36]	Cowles, K. V. (1988). Issues in qualitative research on sensitive topics. Western Journal of Nursing Research, 10 (2), 163-179.
[37]	Hadjistavropoulos, T., & Smythe, W. E. (2001). Elements of risk in qualitative research. Ethics & Behavior, 11 (2), 163-174.
[38]	Kavanaugh, K., & Ayres, L. (1998). “Not as bad as it could have been”: Assessing and mitigating harm during research interviews on sensitive topics. Research in Nursing & Health, 21 (1), 91-97.
[39]	Sabat, S. R. (1994). Excess disability and malignant social psychology: A case study of Alzheimer's disease. Journal of community & applied social psychology, 4 (3), 157-166.