Much has been written about the stigmatisation and discrimination ascribed to people with dementia in society and in research. This marginalisation has led to a silencing of their voices and their experiences both on a national and international scale, and an often limited understanding about how people with dementia experience daily life. In this study, a participatory research project was conducted in collaboration with people with early-stage dementia who attended an adult school in Denmark. The study explored how to work collaboratively with people with dementia to develop their own research projects. Based on the findings, a qualitative participatory research model has been designed to support the active engagement of people with early-stage dementia in research. The project involved 12 people with early-stage dementia, who were divided into two groups (n = 6 in each group) and then trained in research skills. Each group was then supported to design, develop and undertake a group research project. This was one continuous process, and constantly took account of the individual competencies of each group member. Based upon the knowledge gained from the training in research skills and the participatory research project The Balanced Participation Model was developed. The model illustrates five phases in a participatory research process focusing on the considerations needed for participant recruitment, planning, training in research skills, the participatory research project, and the evaluation and dissemination of results. The core of the model highlights the importance of the researcher role in facilitating the collaboration.
ArnsteinS. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35, 216–224.
3.
BarnesC.MercerG. (1997). Chapter 1. Doing disability research (pp. 1–14). Leeds, UK: The Disability Press.
4.
BergoldJ.ThomasS. (2012). Participatory research methods: A methodological approach in motion. Qualitative Social Research, 13(1), 191–222.
5.
BlumenthalD. S. (2011). Is community-based participatory research possible?American Journal of Preventive Medicine, 40(3), 386–389.
6.
BraunV.ClarkeV. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
7.
BurnsD.HydeP.KillettA.PolandF.GrayR. (2014). Participatory organizational research: Examining voices in the co-production of knowledge. British Journal of Management, 25, 133–144.
8.
CareyM. (2010). Should I stay or should I go? Practical, ethical and political challenges to “service user” participation within.Social Work Research. Qualitative Social Work, 10(2), 224–243.
9.
ClareL.WoodsB. (2008). Cognitive rehabilitation and cognitive training for early-stage Alzheimer´s disease and vascular dementia (review). The Cochrane Library, (4), 1–39.
10.
ClarkeC. L.KeadyJ. (2002). Getting down to brass tasks. A discussion of data collection with people with dementia. In WilkinsonH. (Ed.), The perspectives of people with dementia – Research methods and motivations (pp. 25–46). London, UK: Jessica Kingsley Publishers.
11.
ConderJ. (2011). Reflections on a participatory project: The rewards and challenges for the lead researchers. Journal of Intellectual Developmental Disability, 36(1), 39–48. DOI: 10.3109/13668250.2010.548753.
12.
CornwallA. (2008). Unpacking participation: Models, meanings and practices. Community Development Journal, 43(3), 269–283.
DewarB. (2005). Beyond tokenistic involvement of older people in research – A framework for future development and understanding. Journal of Clinical Nursing, 14(1), 48–53.
15.
DewingJ. (2007). Participatory research: A method for process consent with persons who have dementia. Dementia, 6(1), 11–25. DOI: 10.1177/1471301207075625.
16.
DupuisS. L.GilliesJ. (2014). Learning as a vehicle for individual and social transformation. Therapeutic Recreation Journal, XLVIII(2), 113–134.
17.
DupuisS. L.GilliesJ.CarsonJ. (2012). Moving beyond patient and client approaches: Mobilizing authentic partnerships in dementia care, support and services. Dementia, 11(4), 427–452.
18.
EhdeD. M.WegenerS. T.WilliamsR. M.EphraimP. L.StevensonJ. E.IsenbergP. J.MacKenzieE. J. (2013). Developing, testing, and sustaining rehabilitation interventions via participatory action research. Archives of Physical Medicine and Rehabilitation, 94(1), 30–42. DOI: http://dx.doi.org/10.1016/j.apmr.2012.10.025.
Freire, P. (1972). Pedagogy of the Oppressed. Harmondsworth: Penguin.
21.
Freire, P. (1976). Education, the Practice of Freedom. London: Writers and Readers Publishing Cooperative.
22.
FudgeN.WolfeC. D. A.McKevittC. (2007). Involving older people in health research. Age and Ageing, 38(5), 492–500.
23.
HansonE.MagnussonL.ArvidssonH.ClaessonA.KeadyJ.NolanM. (2007). Working together with persons with early stage dementia and their family members to design a user-friendly technology-based support service. Dementia, 6(3), 411–434.
24.
HellströmI.NolanM.LundhU. (2007). Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics, 14(5), 608–619. DOI: 10.1177/0969733007080206.
25.
HubbardG.DownsM.TesterS. (2003). Including the perspectives of older people in institutional care during the consent process. In WilkinsonH. (Ed.), The perspectives of people with dementia: Research methods and motivations (pp. 63–82). London, UK: Jessica Kingsley Publishers.
KeadyJ.WilliamsS.Hughes-RobetsJ. (2005). Emancipatory practice development through life-story work: Changing care in a memory clinic in north wales. Practice Development in Health Care, 4(4), 203–212.
28.
KellyS.LafortuneL.HartN.CowanK.FentonM.BrayneC. (2015). 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, 44(6), 985–993.
29.
KitwoodT. (1997). Dementia reconsidered: The person comes first. Buckingham, UK: Open University Press.
30.
KnightB. G.LutzkyS. M.Macofsky-UrbanF. (1993). A meta-analytic review of interventions for caregiver distress: Recommendations for future research. The Gerontologist, 33(2), 240–248.
31.
KnobziN.FlickerS. (2010). Lessons learned from undertaking community-based participatory research dissertations: The trials and triumphs of two junior health scholars. Progress in Community Health Partnerships: Research, Education and Action, 4(4), 347–356.
32.
LawE. (2013). Dementia research – What do different public groups want? A survey by the Scottish dementia clinical research network. Dementia, 12(1), 23–28. DOI: 10.1177/0142723711420309.
33.
LittlechildR.TannerD.HallK. (2015). Co-research with older people: Perspectives on impact. Qualitative Social Work, 14(1), 18–35.
34.
McKeownJ. (2010). Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19(13–14), 1935–1943. DOI: 10.1111/j.1365-2702.2009.03136.x.
35.
McKillopJ. (2004). Make it easy on yourself!: Advice to researchers from someone with dementia on being interviewed. Dementia, 3(2), 117–125. DOI: 10.1177/1471301204042332.
36.
McParlandP.KellyF.InnesA. (2017). Dichotomising dementia: Is there another way?.Sociology of Health & Illness, 39(2), 258–269.
NomuraM. (2009). Empowering older people with early dementia and family caregivers: A participatory action research study. International Journal of Nursing Studies, 46(4), 431–441. DOI: 10.1016/j.ijnurstu.2007.09.009.
Pipon YoungF. (2012). I'm not all gone, I can still speak: The experiences of younger people with dementia. An action research study. Dementia, 11(5), 597–616. DOI: 10.1177/1471301211421087.
41.
ReedJ.CookG.BolterV.Douglas, B. (2006). Older people ‘Getting things done’ – Involvement in policy and planning initiatives. York, UK: Joseph Rowntree Foundation.
42.
RoyA. (2012). Avoiding the involvement overdose: Drugs, ethnicity and participatory research practice. Critical Social Policy, 32(4), 636–654.
43.
StacciariniJ.ShattellM.CoadyM.WiensB. (2011). Review: Community-based participatory research approach to address mental health in minority populations. Community Mental Health Journal, 47(5), 489–497. DOI: 10.1007/s10597-010-9319-z.
44.
StaniszewskaS. (2009). Patient and public involvement in health services and health research: A brief overview of evidence, policy and activity. Journal of Research in Nursing, 14(4), 295–298. DOI: 10.1177/1744987109106811.
45.
TandonR. (2005). Participatory research: Revisiting the roots. New Delhi, India: Mosaic Books.
46.
TannerD. (2012). Co-research with older people with dementia: Experience and reflections. Journal of Mental Health, 21(3), 296–306. DOI: 10.3109/09638237.2011.651658.
47.
ThoftD. S. (2017). Involving people with early stage dementia in qualitative research about their lifeworld perspectives. Aalborg, Denmark: Aalborg University Press.
48.
TrainaI. (2014). Social inclusion of vulnerable groups through participatory and emancipatory approaches. implementing active citizenship and socially innovative actions in the framework of civil & human rights model of disability. Dottorato di ricerca in Scienze pedagogiche, Alma Mater Studiorum Università di Bologna, 26 Ciclo. DOI: 10.6092/unibo/amsdottorato/6481.
WardA.SorensenK. A.KousgaardH.ThoftD. S.ParkesJ. (2018). Going back to school – An opportunity for lifelong learning for people with dementia in Denmark (innovative practice). Dementia: The international Journal of Social Research and Practice. DOI: 10.1177/1471301218763190.
51.
WardA.ThoftD. S.LomaxH.ParkesJ. (2018). A visual and creative approach to exploring people with dementia’s experiences of being students at a school in Denmark. Dementia: The international Journal of Social Research and Practice. DOI: 10.1177/1471301218786636.
52.
WardP. R. (2009). Critical perspectives on consumer involvement in health research: Epistemological dissonance and the know-do gap. Journal of Sociology, 46(1), 63–82.
53.
White, S. (1996). Depoliticising development: The uses and abuses of participation. Development in Practice, 6(1), 142–155.
54.
WilkinsonH. (2002). Including people with dementia in research: Methods and motivation. In WilkinsonH. (Ed.), The perspectives of people with dementia: Research methods and motivations (pp. 9–24). London, UK: Jessica Kingsley Publishers.
55.
WilkinsonH.HubbardG. (2003). Exploring innovative ways of seeking the views of older people in health and social care research. Research, Planning and Policy, 21(2), 1–4.
56.
WinbladB.AmouyelP.AndrieuS.BallardC.BrayneC.BrodatyH., … WimoA. (2016). Defeating Alzheimer's disease and other dementias: A priority for European Science and Society. The Lancet Neurology, 15(5), 455–532.
