917
Views
2
CrossRef citations to date
0
Altmetric
Special Issue: Contemporary Controversies and Challenges

Dementia enquirers: pioneering approaches to dementia research in UK

, , , , , & ORCID Icon show all
Pages 129-147 | Received 03 Sep 2020, Accepted 10 Apr 2021, Published online: 07 Jun 2021

References

  • Alzheimer’s Society. n.d. “Dementia Experience Toolkit.” Accessed August 28, 2020. https://www.alzheimers.org.uk/dementia-professionals/dementia-experience-toolkit
  • Barnes, C. 2003. “What a Difference a Decade Makes: Reflections on Doing ‘Emancipatory’ Disability Research.” Disability & Society 18 (1): 3–17. doi:10.1080/713662197.
  • Berry, P., T. Davies, C. Fordyce, H. Gordon, P. Hare, A. Houston, R. Litherland, M. McLintock, W. Mitchell, and T. Shorthouse. 2020. “Dementia Enquirers – People with Dementia in the Driving Seat of Research.” Dementia 19 (1): 68–73. doi:10.1177/1471301219876506.
  • Bethell, J., E. Commisso, H. M. Rostad, M. Puts, J. Babineau, A. Grinbergs-Saull, M. B. Wighton, et al. 2018. “Patient Engagement in Research Related to Dementia: A Scoping Review.” Dementia 17 (8): 944–975. doi:10.1177/1471301218789292.
  • Boxall, K., I. Carson, and D. Docherty. 2004. “Room at the Academy? People with Learning Difficulties and Higher Education.” Disability & Society 19 (2): 99–112. doi:10.1080/0968759042000181749.
  • Danieli, A., and C. Woodhams. 2005. “Emancipatory Research Methodology and Disability: A Critique.” International Journal of Social Research Methodology 8 (4): 281–296. doi:10.1080/1364557042000232853.
  • DEEP. 2020. “The DEEP-Ethics Gold Standards for Dementia Research.” Accessed August 28, 2020. https://www.dementiavoices.org.uk/wp-content/uploads/2020/07/The-DEEP-Ethics-Gold-Standards-for-Dementia-Research.pdf
  • Eley, R. M. 2016. “Telling It as It Is: Involving People with Dementia and Family Carers Inpolicy Making, Service Design and Workforce Development.” Working with Older People 20 (4): 219–222. doi:10.1108/WWOP-09-2016-0026.
  • Fletcher, J. R. 2020. “Unethical Governance: Capacity Legislation and the Exclusion of People Diagnosed with Dementia from Research.” Research Ethics. https://doi.org/10.1177/1747016120982023
  • Gove, D., A. Diaz-Ponce, J. Georges, E. Moniz-Cook, G. Mountain, R. Chattat, L. Øksnebjerg, and European Working Group of People with Dementia. 2018. “Alzheimer Europe’s Position on Involving People with Dementia in Research through PPI (Patient and Public Involvement).” Aging & Mental Health 22 (6): 723–729. doi:10.1080/13607863.2017.1317334.
  • Houston, A., G. Rook, R. Ashworth, P. Hare, E. Law, R. Litherland, K. Manji, L. Series, and T. Shakespeare. 2020. “A Scoping Review Exploring the Inclusion of People with Dementia in the Ethical Review Process.” Research Ethics.
  • Hughes, E. 1945. “Dilemmas and Contradictions of Status.” American Journal of Sociology 50 (5): 353–359. doi:10.1086/219652.
  • Mental Health Foundation. 2015. Dementia, Rights, and the Social Model of Disability: A New Direction for Policy and Practice? London, UK: Mental Health Foundation. https://www.mentalhealth.org.uk/sites/default/files/dementia-rights-policy-discussion.pdf
  • Rose, D. 2017. “Service User/Survivor-Led Research in Mental Health: Epistemological Possibilities.” Disability & Society 32 (6): 773–789. doi:10.1080/09687599.2017.1320270.
  • Scottish Dementia Working Group [Research Sub-Group]. 2014. “Core Principles for Involving People with Dementia in Research: Innovative Practice.” Dementia 13 (5): 680–685.
  • Shakespeare, T., H. Zeilig, and P. Mittler. 2019. “Rights in Mind: Thinking Differently about Dementia and Disability.” Dementia 18 (3): 1075–1088. doi:10.1177/1471301217701506.
  • Slay, J. & Stephens, L. 2013. “Co-production in mental health: A literature review”. London: new economics foundation.
  • Social Care Institute of Excellence. 2013. “Co-Production in Social Care: What It Is and How to Do It.” London: Social Care Institute of Excellence. Consulted May 10, 2020. https://www.scie.org.uk/publications/guides/guide51/about-this-guide.asp.
  • Staley, K. 2009. Exploring Impact: Public Involvement in NHS, Public Health and Social Care Research. Eastleigh: INVOLVE.
  • Stevenson, M., and B. J. Taylor. 2019. “Involving Individuals with Dementia as Co-Researchers in Analysis of Findings from a Qualitative Study.” Dementia 18 (2): 701–712. doi:10.1177/1471301217690904.
  • Thorogood, A., A. Mäki-Petäjä-Leinonen, H. Brodaty, G. Dalpé, G. Chris, S. Gauthier, D. Gove, et al. 2018. “Consent Recommendations for Research and International Data Sharing Involving Persons with Dementia.” Alzheimer’s & Dementia 14 (10): 1334–1343. doi:10.1016/j.jalz.2018.05.011.
  • Tuffrey-Wijne, I., and G. Butler. 2009. “Co-Researching with People with Learning Disabilities: An Experience of Involvement in Qualitative Data Analysis.” Health Expectations 13 (2): 174–184. doi:10.1111/j.1369-7625.2009.00576.x.
  • Waite, J., F. Poland, and G. Charlesworth. 2019. “Facilitators and Barriers to Co-Research by People with Dementia and Academic Researchers: Findings from a Qualitative Study.” Health Expectations 22 (4): 761–771. doi:10.1111/hex.12891.
  • Williams, O., S. Sarre, S. C. Papoulias, S. Knowles, G. Robert, P. Beresford, D. Rose, S. Carr, M. Kaur, and V. J. Palmer. 2020. “Lost in the Shadows: Reflections on the Dark Side of co-Production.” Health Research Policy and Systems 18 (1): 10. doi:10.1186/s12961-020-00558-0.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.