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Researching with People with Dementia

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Handbook of Research Methods in Health Social Sciences

Abstract

Undertaking research with people with dementia has historically been perceived as problematic, especially as the condition advances and where there are concerns over capacity to make decisions and give informed consent. Much research that does include people with dementia as participants tends to focus on people early on in the condition. By not involving people with dementia across the trajectory of the condition, we are failing to develop important understandings from the perspectives of people living with the condition across a range of research topics. Furthermore, by not involving people with dementia throughout the research process, we may not be exploring the most relevant research topics or not considering the most relevant methods and approaches to capture their experiences. There is an increased understanding on the importance of involving people with dementia in all aspects of the research process, but the challenge remains on how to do so in a meaningful and ethical way. Researchers are beginning to explore these challenges in the literature. This chapter will draw upon the evidence base as well as personal experience in the UK to consider approaches to consent and a range of diverse approaches and methods that seek to include rather than exclude people living with dementia throughout the research process.

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References

  • Allan K. Communication and consultation: exploring ways for staff to involve people with dementia in developing services. Bristol: The Policy Press; 2001.

    Google Scholar 

  • Alzheimer Europe. The ethics of dementia research. Alzheimer Europe Report. 2011. http://www.alzheimer-europe.org/EN/Ethics/Ethical-issues-in-practice/2011-Ethics-of-dementia-research. Accessed 27 Oct 2016.

  • Bamford C, Bruce E. Successes and challenges in using focus groups with older people with dementia. In: Wilkinson H, editor. The perspectives of people with dementia: research methods and motivations. London: Jessica Kingsley; 2002. p. 139–64.

    Google Scholar 

  • Barnett, E. Involving people with dementia in designing and delivering care: ‘I need to be me!’ London: Jessica Kingsley Publishers; 2000.

    Google Scholar 

  • Bartlett R. Modifying the diary interview method to research the lives of people with dementia. Qual Health Res. 2012;22(12):1717–26.

    Article  Google Scholar 

  • Bartlett H, Martin W. Ethical issues in dementia care research. In: Wilkinson H, editor. The perspectives of people with dementia: research methods and motivations. London: Jessica Kingsley Publishers; 2002. p. 47–62.

    Google Scholar 

  • Carmody J, Traynor E, Marchetti E. Barriers to qualitative dementia research: the elephant in the room. Qual Health Res. 2014;25(7):1013–9.

    Article  Google Scholar 

  • Clarke C, Keady J. Getting down to brass tacks: a discussion of data collection. In: Wilkinson H, editor. The perspectives of people with dementia: research methods and motivations. London: Jessica Kingsley Publishers; 2002. p. 25–46.

    Google Scholar 

  • Cottrell V, Schultz R. The perspective of the patient with Alzheimer’s disease: a neglected dimension of dementia research. The Gerontologist. 1993;33(2):205–11.

    Article  Google Scholar 

  • Cowdell F. Engaging older people with dementia in research: myth or possibility? Int J Nurs Older People. 2008;3(1):29–34.

    Article  Google Scholar 

  • Crossan B, McColgan G. Informed consent: old issues re-examined with reference to research involving people with dementia. Paper presented at the British Sociological Association annual conference, Glasgow; 1999.

    Google Scholar 

  • Department of Health. Mental Capacity Act. London: HMSO; 2005.

    Google Scholar 

  • Dewing J. From ritual to relationship: a person-centred approach to consent in qualitative research with older people who have dementia. Dementia: Int J Soc Res Pract. 2002;1(2):157–71.

    Article  Google Scholar 

  • Dewing J. Participatory research: a method for process consent with persons who have dementia. Dementia: Int J Soc Res Pract. 2007;6(1):11–25.

    Google Scholar 

  • Dewing J. Process consent and research with older persons living with dementia. Res Ethics Rev. 2008;4(2):59–64.

    Article  Google Scholar 

  • Digby R, Lee S, Williams A. Interviewing people with dementia in hospital: recommendations for researchers. J Clin Nurs. 2016;25(7–8):1156–65.

    Article  Google Scholar 

  • Dobson C. Conducting research with people not having the capacity to consent to their participation: a practical guide for researchers. Leicester: British Psychological Society; 2008.

    Google Scholar 

  • Downs M. The emergence of the person in dementia research. Ageing Soc. 1997;17(5):597–607.

    Article  Google Scholar 

  • Hellstrom I, Nolan M, Nordenfelt L, Lundh U. Ethical and methodological issues in interviewing persons with dementia. Nurs Ethics. 2007;14(5):608–19.

    Article  Google Scholar 

  • Henwood T, Baguley C, Neville C. Achieving ethics approval in residential aged care research: a protective process or barrier. Australas J Ageing. 2015;34(3):201–2.

    Article  Google Scholar 

  • Holland S, Kydd A. Ethical issues when involving people newly diagnosed with dementia in research. Nurs Res. 2015;22(4):25–9.

    Google Scholar 

  • Hubbard G, Downs M. Tester S. Including the perspectives of older people in institutional care during the consent process. In: Wilkinson H, editor. The perspectives of people with dementia: research methods and motivations. London: Jessica Kingsley; 2002. p. 63–82.

    Google Scholar 

  • Hubbard G, Downs M, Tester S. Including older people with dementia in research: challenges and strategies. Aging Ment Health. 2003;7(5):351–62.

    Article  Google Scholar 

  • Hughes T, Castro Romero M. A processural consent methodology with people diagnosed with dementia. Qual Ageing Older Adults. 2015;16(4):222–34.

    Article  Google Scholar 

  • Kelly S, Lafortune L, Hart N, Cowan K, Fenton M, Brayne C. Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda. Age Ageing. 2015;44(6):985–93.

    Article  Google Scholar 

  • Keyserlingk E, Glass K, Kogan S, Gauthier S. Proposed guidelines for the participation of persons with dementia as research subjects. Perspect Biol Med. 1995;38(2):319–61.

    Article  Google Scholar 

  • Killick J. “The best way to improve this place”: gathering views informally. In: Murphy C, Killick J, Allan K, editors. Hearing the user’s voice: encouraging people with dementia to reflect on their experiences of services. Stirling: Dementia Services Development Centre; 2001. p. 6–9.

    Google Scholar 

  • King A, Hopkinson J, Milton R. Reflections of a team approach to involving people with dementia in research. Int J Palliat Nurs. 2016;22(1):22–7.

    Article  Google Scholar 

  • Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press; 1997.

    Google Scholar 

  • Litherland R. Developing a national user movement of people with dementia: learning from the Dementia Engagement and Empowerment Project (DEEP). Joseph Rowntree Foundation. 2015. https://www.jrf.org.uk/report/developing-national-user-movement-people-dementia. Accessed 27 Oct 2016.

  • Ludwin K, Capstick A. Using participatory video to understand diversity among people with dementia in long-term care. J Psychol Issues Organ Cult. 2011;5(4):30–8.

    Article  Google Scholar 

  • McCormack B. The person of the voice: narrative identities in informed consent. Nurs Philos. 2002;3(2):114–9.

    Article  Google Scholar 

  • McCormack B. Researching nursing practice: does person-centredness matter? Nurs Philos. 2003;4(3):179–88.

    Article  Google Scholar 

  • McKeown J, Clarke A, Ingleton C, Repper J. Actively involving people with dementia in qualitative research. J Clin Nurs. 2010;19(13–14):1935–43.

    Google Scholar 

  • McKillop J. Did research alter anything? In: Wilkinson H, editor. The perspectives of people with dementia: research methods and motivations. London: Jessica Kingsley; 2002. p. 109–14.

    Google Scholar 

  • McKillop J, Wilkinson H. Make it easy on yourself! Advice to researchers from someone with dementia on being interviewed. Dementia: Int J Soc Res Pract. 2004;3(2):117–25.

    Article  Google Scholar 

  • Miller T. Shifting layers of professional, lay and personal narratives. In: Ribbens J, Edwards R, editors. Feminist dilemmas in qualitative research. London: Sage; 1998. p. 58–71.

    Chapter  Google Scholar 

  • Murphy C. User involvement in evaluations. In: Innes A, McCabe L, editors. Evaluation in dementia care. London: Jessica Kingsley Publishers; 2007. p. 214–29.

    Google Scholar 

  • Murphy J, Gray C, Wyke S, Cox S, van Achterberg T. The effectiveness of the talking mats framework in helping people with dementia to express their views on well-being. Dementia: Int J Soc Res Pract. 2010;9(4):454–72.

    Article  Google Scholar 

  • Murphy K, Jordan F, Hunter A, Cooney A, Casey D. Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia: Int J Soc Res Pract. 2015;14(6):800–24.

    Article  Google Scholar 

  • National Institute for Health Research. Patient and public involvement in health and social research: a handbook for researchers. 2014. http://www.rds.nihr.ac.uk/wp-content/uploads/RDS-PPI-Handbook-2014-v8-FINAL.pdf. Accessed 27 Oct 2016.

  • Parke B, Hunter K, Marck P. A novel visual method for studying complex health transitions for older people living with dementia. Int J Qual Methods. 2015;14(4):1–11.

    Article  Google Scholar 

  • Reid D, Ryan T, Enderby P. What does it mean to listen to people with dementia? Disab Soc. 2001;16(3):377–92.

    Google Scholar 

  • Robinson E. Should people with Alzheimer’s disease take part in research? In: Wilkinson H, editor. The perspectives of people with dementia: research methods and motivations. London: Jessica Kingsley Publishers; 2002. p. 101–7.

    Google Scholar 

  • Sachs G, Stocking C, Stern R, Cox D, Hougham G, Sachs R. Ethical aspects of dementia research: informed consent and proxy consent. Clin Res. 1994;42(3):403–12.

    Google Scholar 

  • Savitch N, Zaphiris P, Smith M, Litherland R, Aggarwal N, Potier E. Involving people with dementia in the development of a discussion forum: a community-centred approach. In: Clarkson J, Langdon P, Robinson P, editors. Designing accessible technology. London: Springer; 2006. p. 237–47.

    Chapter  Google Scholar 

  • Scottish Dementia Working Group Research Sub-group. Core principles for involving people with dementia in research: innovative practice. Dementia: Int J Soc Res Pract. 2014;13(5):680–5.

    Article  Google Scholar 

  • Sherratt C, Soteriou T, Evans S. Ethical issues in social research involving people with dementia. Dementia: Int J Soc Res Pract. 2007;6(4):463–79.

    Article  Google Scholar 

  • Stocking C, Hougham G, Danner D, Patterson M, Whitehouse P, Sachs G. Speaking of research advance directives: planning for future research participation. Neurology. 2006;66(9):1361–6.

    Article  Google Scholar 

  • Swarbrick C. The quest for a new methodology for dementia care research. Dementia: Int J Soc Res Pract. 2015;14(6):713–5.

    Article  Google Scholar 

  • Taylor J, DeMers S, Vig E, Borson S. The disappearing subject: exclusion of people with cognitive impairment and dementia from geriatrics research. J Am Geriatr Soc. 2012;60(3):413–9.

    Article  Google Scholar 

  • Usher K, Arthur D. Process consent: a model for enhancing informed consent in mental health nursing. J Adv Nurs. 1998;27(4):692–7.

    Article  Google Scholar 

  • Williamson T. A stronger collective voice for people with dementia. Joseph Rowntree Foundation. 2012. http://www.jrf.org.uk/publications/stronger-collective-voice. Accessed 8 Aug 2015.

  • Witham G, Beddow A, Haigh C. Reflections on access: too vulnerable to research? J Res Nurs. 2015;20(1):28–37.

    Article  Google Scholar 

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Authors and Affiliations

  1. School of Nursing and Midwifery, The University of Sheffield, Barber House Annexe, 3a Clarkehouse Road, Sheffield, S10 2LA, UK

    Jane McKeown

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  1. Jane McKeown
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Correspondence to Jane McKeown .

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Editors and Affiliations

  1. Health, Locked Bag 1797, CA.02.35, Western Sydney Univ, School of Science & Health, Locked Bag 1797, CA.02.35, Penrith, New South Wales, Australia

    Pranee Liamputtong

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McKeown, J. (2017). Researching with People with Dementia. In: Liamputtong, P. (eds) Handbook of Research Methods in Health Social Sciences . Springer, Singapore. https://doi.org/10.1007/978-981-10-2779-6_128-1

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  • DOI: https://doi.org/10.1007/978-981-10-2779-6_128-1

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  • Print ISBN: 978-981-10-2779-6

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