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Published Online:https://doi.org/10.12968/ijpn.2016.22.1.22

Abstract

The article reflects on the ways in which a person-centred approach was used to ensure that people with dementia were given an opportunity to participate in research. The authors discuss three key issues—the importance of including people with dementia in research, informed consent and the possibility of accidental disclosure of diagnosis. The study was an in-depth examination of the ways in which the cancer team manages patients with memory problems and patients with dementia, and the experiences of these patients and their families in accessing outpatient cancer treatment and care in Wales. The study findings will be reported elsewhere. This article aims to add to the small body of existing knowledge within the literature that describes the experiences of researchers in actively involving people with dementia in research.

References

  • Alzheimer Europe (2012) Involving people with dementia. http://tinyurl.com/qcm9dor (accessed 23 December 2015) Google Scholar
  • Alzheimer's Society (2013) Involving people with dementia. http://tinyurl.com/oq3ouqw (accessed 23 December 2015) Google Scholar
  • Baldwin C (2010) Towards a person centred ethic in dementia care: doing right or being good? In: Downs M, Bowers B, eds. Excellence in Dementia Care: Research into Practice. Open University Press, Maidenhead Google Scholar
  • Barnett E (2000) Including the Person with Dementia in Designing and Delivering Care: ‘I Need to be Me!’ Jessica Kingsley Publishers, London Google Scholar
  • Brooker D (2003) What is person-centred care in dementia? Rev Clin Gerontol 13(3): 215–22 CrossrefGoogle Scholar
  • Brooker D (2010) Quality: the perspective of the person with dementia. In: Downs M, Bowers B, eds. Excellence in Dementia Care: Research into Practice. Open University Press, Maidenhead Google Scholar
  • Bryden C (2005) Dancing with Dementia: My Story of Living Positively with Dementia. Jessica Kingsley Press, London Google Scholar
  • Dementia Engagement and Empowerment Project (2013) Writing dementia-friendly information. http://tinyurl.com/qa3zezc (accessed 23 December 2015) Google Scholar
  • Department of Health (2001) Research Governance Framework for Health and Social Care. http://tinyurl.com/cupej9z (accessed 23 December 2015) Google Scholar
  • Department of Health (2008) Guidance on nominating a consultee for research involving adults who lack capacity to consent. http://tinyurl.com/h584m85 (accessed 23 December 2015) Google Scholar
  • Department of Health (2012) Prime Minister's challenge on dementia 2020. http://tinyurl.com/nxekk9o (accessed 23 December 2015) Google Scholar
  • Department of Health (2013) Patients First and Foremost. The Initial Government Response to the Report of The Mid Staffordshire NHS Foundation Trust Public Inquiry. http://tinyurl.com/cfceb3k (accessed 23 December 2015) Google Scholar
  • Dewing J (2002) From ritual to relationship: a person-centred approach to consent in qualitative research with older people who have a dementia. Dementia 1(2): 157–70 CrossrefGoogle Scholar
  • Dewing J (2007) Participatory research. A method for process consent with persons who have dementia. Dementia 6(1): 11–25 CrossrefGoogle Scholar
  • Dewing J (2008) Personhood and dementia: revisiting Tom Kitwood's ideas. Int J Older People Nurs 3(1): 3–13 Crossref, MedlineGoogle Scholar
  • Goldsmith M (2002) Hearing the Voice of People with Dementia: Opportunities and Obstacles. Jessica Kingsley Publishers, London Google Scholar
  • Gray DE (2014) Doing Research in the Real World. 3rd edn. Sage, London Google Scholar
  • Hellström I, Nolan M, Nordenfelt L et al. (2007) Ethical and methodological issues in interviewing people with dementia. Nurs Ethics 14(5): 608–19 Crossref, MedlineGoogle Scholar
  • Hubbard G, Downs M, Tester S (2003) Including older people with dementia in research: challenges and strategies. Ageing Ment Health 7(5): 351–62 Crossref, MedlineGoogle Scholar
  • Joseph Rowntree Foundation (2012) A stronger collective voice for people with dementia. http://tinyurl.com/j2c4tcn (accessed 23 December 2015) Google Scholar
  • Kitwood T (1997) Dementia Reconsidered: The Person Comes First (Rethinking Ageing). Open University Press, Maidenhead Google Scholar
  • McKillop J (2002) Did research alter anything? In: Wilkinson H, ed. The Perspectives of People with Dementia: Research Methods and Motivations. Jessica Kingsley Publishers, London Google Scholar
  • Marzanski M (2000) Would you like to know what's wrong with you? On telling the truth to patients with dementia. J Med Ethics 26(2): 108–13 Crossref, MedlineGoogle Scholar
  • National Institute for Health and Care Excellence (2006) Dementia: supporting people with dementia and their carers in health and social care. http://tinyurl.com/qbu46qu (accessed 23 December 2015) Google Scholar
  • Phinney A (2008) Towards understanding subjective experiences of dementia. In: Downs M, Bowers B, ed. Excellence in Dementia Care: Research into Practice. Open University Press, Maidenhead: 35–5 Google Scholar
  • Pratt R (2002) Nobody's ever asked me how I felt. In: Wilkinson H, ed. The Perspectives of People with Dementia: Research Methods and Motivations. Jessica Kingsley Publishers, London Google Scholar
  • Robinson E (2002) Should people with Alzheimer's disease take part in research? In: Wilkinson H, ed. The Perspectives of People with Dementia. Jessica Kingsley Publishers, London Google Scholar
  • Rogers C (1961) On Becoming a Person: A Therapist's View of Psychotherapy. Constable and Robinson, London Google Scholar
  • Royal College of Nursing (RCN) (2004) Research ethics: RCN guidance for nurses. http://tinyurl.com/ntk5mnb (accessed 23 December 2015) Google Scholar
  • Scottish Dementia Working Group (2013) Core principles for involving people with dementia in research. http://tinyurl.com/qfksgza (accessed 23 December 2015) Google Scholar
  • Wilkinson H (2002) The Perspectives of People with Dementia. Jessica Kingsley Publishers, London Google Scholar
  • World Medical Association (WMA) (1964) WMA Declaration of Helsinki—Ethical Principles for Medical Research Involving Human Subjects. http://tinyurl.com/cf6rwem (accessed 23 December 2015) Google Scholar

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