It is essential to understand the experience of living with dementia from the perspective of the person with dementia so that services can be appropriately constructed. This review paper, drawing on prior work, identifies key strategies for the meaningful inclusion of persons with dementia within qualitative research studies, it examines the articulation of these strategies and shares how these strategies were operationalised within one national research study in Ireland. Strategies within the literature were categorised and then synthesized into a guide consisting of four main areas; gaining COnsent, maximizing Responses, Telling the story, and Ending on a high (CORTE). The CORTE guideline was used to as a tool for analysing relevant research reports. CORTE is a synthesized account of grouped strategies that could be used to maximize the meaningful involvement of persons with dementia and can also provide a guide for reporting the strategies used so that researchers can learn from each other.
ActonG. J.MayhewP. A.HopkinsB. A.YaukS. (1999) Communicating with individuals with dementia: The impaired person’s perspective. Journal of Gerontological Nursing25: 6–13.
2.
AguirreE.SpectorA.StreaterA.BurnellK.OrrellM. (2011) Service users’ involvement in the development of a maintenance cognitive simulation therapy (CST) programme: A comparision of the views of people with dementia, staff and family carers. Dementia10: 459–473.
AminzadehF.ByszewskiA.MolnarF. J.EisnerM. (2007) Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspective. Aging & Mental Health11: 281–290.
5.
BamfordC.BruceE. (2000) Defining the outcomes of community care: the perspectives of older people with dementia and their carers. Ageing and Society20: 543–570.
Bartlett, H., & Martin, W., (2002). Ethical issues in dementia care research. In H. Wilkinson (Ed.), The perspectives of people with dementia: Research methods and motivations (pp. 47--62). London, UK: Jessica Kingsley Publishers.
8.
BartlettR. (2012) Modifying the diary interview method to research the lives of people with dementia. Qualitative Health Research22: 1717–1726–1717–1726.
9.
BartlettR.O’ConnorD. (2010) Broadening the dementia debate: Towards social citizenship, Bristol, UK: The Policy Press.
10.
BrataasH. V.BjuganH.WilleT.HellzenO. (2010) Experiences of day care and collaboration among people with mild dementia. Journal of Clinical Nursing19: 2839–2848–2839–2848.
11.
BriggsK.AskhamJ.NormanI.RedfernS. (2003) Accomplishing care at home for people with dementia: Using observational methodology. Qualitative Health Research13: 268–280.
BrodM.StewartA. L.SandsL.WaltonP. (1999) Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL). The Gerontologist39: 25–36.
14.
CacchioneP. Z. (2011) People with dementia: Capacity to consent to research participation. Clinical Nursing Research20: 223–227–223–227.
15.
CahillS.Diaz-PonceA. M. (2011) ‘I hate having nobody here. I'd like to know where they all are’: can qualitative research detect differences in quality of life among nursing home residents with different levels of cognitive Impairment?Aging & Mental Health15: 562–572.
16.
CahillS.O’SheaE.PierceP. (2012) Creating excellence in dementia care, Dublin, Ireland. Dublin, Ireland: DOH.
17.
CharmazK. (2006b) Measuring pursuits, marking self: Meaning construction in chronic illness. International Journal of Qualitative Studies on Health and Well-being1: 27–37–27–37.
18.
Clarke, C. L, & Keady, J. (2002). Getting down to brass tacks: A discussion of data collection with people with dementia. In H. Wilkinson (Ed.), The perspectives of people with dementia: Research methods and motivations (pp. 25--46). London, UK: Jessica Kingsley Publishers.
19.
CoenR.O’MahonyD.O’BoyleC.JoyceC. R. B.HiltbrunnerB.WalshJ. B. (1993) Measuring the quality of life of dementia patients using the schedule for the evaluation of individual quality of life. Irish Journal of Psychology14: 154–163.
20.
Cooney, A., O'Shea, E., Casey, D., Murphy, K., Dempsey, L., Smyth, S., … Jordan, F. (2013). Developing a structured education reminiscence-based programme for staff in long-stay care facilities in Ireland. Journal of Clinical Nursing, 22(13/14): 1977–1987.
CotrellV.SchulzR. (1993) The perspective of the patient with Alzheimer’s Disease: A neglected dimension of dementia research. The Gerontologist33: 205–211–205–211.
23.
CowdellF. (2008) Engaging older people with dementia in research: Myth or possibility. International Journal of Older People Nursing3: 29–34–29–34.
24.
CowdellF. (2010) Care of older people with dementia in an acute hospital setting. Nursing Standard24: 42–48.
25.
CreswellJ. W. (2007) Qualitative inquiry and research design: Choosing among five traditions, (2nd ed.). Thousand Oaks, CA: Sage.
26.
DalbyP.SperlingerD. J.BoddingtonS. (2011) The lived experience of spirituality and dementia in older people living with mild to moderate dementia. Dementia11: 75–94.
27.
DayA. M.JamesI. A.MeyerT. D.LeeD. R. (2011) Do people with dementia find lies and deception in dementia care acceptable?Aging & Mental Health15: 822–829–822–829.
28.
DenzinN. K.LincolnY. S. (2000) Handbook of qualitative research, (2nd ed.). Thousand Oaks, CA: Sage.
29.
DewingJ. (2002) From ritual to relationship: A person-centred approach to consent in qualitative research with older people who have dementia. Dementia1: 157–171–157–171.
30.
DewingJ. (2007) Participatory research: A method for process consent with persons who have dementia. Dementia6: 111–125.
31.
DigbyR.MossC.BloomerM. (2012) Transferring from an acute hospital and settling into a subacute facility: the experience of patients with dementia. International Journal of Older People Nursing7: 57–64.
32.
DownsM. (1997) The emergence of the person in dementia research. Ageing and Society17: 597–607.
33.
EdelmanP.FultonB. R.KuhnD.ChangC. H. (2005) A comparison of three methods of measuring dementia specific quality of life: Perspectives of residents, staff and observers. The Gerontologist45: 27–36–27–36.
34.
EdvardssonD.FetherstonhaughD.NayR. (2010) Promoting a continuation of self and normality: Person centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing19: 2611–2618.
35.
EricssonI.KjellströmS.HellströmI. (2013) Creating relationships with persons with moderate to severe dementia. Dementia12: 63–79.
36.
FetherstonhaughD.TarziaL.NayR. (2013) Being central to decision making means I am still here!: The essence of decision making for people with dementia. Journal of Aging Studies27: 143–150–143–150.
37.
FiskJ. D.BeattieB. L.DonnellyM.ByszewskiA.MolnarF. (2007) Disclosure of the diagnosis of dementia. Alzheimer's & Dementia3: 404–410–404–410.
38.
Froggatt, A. (1988). Self-awareness in early dementia. In B. Gearing, M. Johnson, & I. Heller (Eds), Mental health problems in old age: A reader (pp. 131--136). Chichester, UK: John Wiley & Sons.
39.
GenoeR.DupuisS. L.KellerH. H.Schindel MartinL.CassolataC.EdwardH. G. (2010) Honouring identity through mealtimes in families living with dementia. Journal of Ageing Studies24: 181–193.
40.
GillL.WhiteL.CameronI. D. (2011) Interaction in community-based aged healthcare: Perceptions of people with dementia. Dementia10: 539–554–539–554.
HellströmI.NolanM.LundhU. (2007b) Sustaining ‘couplehood’: Spouses’ strategies for living positively with dementia. Dementia6: 383–409–383–409.
43.
HellströmI.NolanM.NordenfeltL.LundhU. (2007a) Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics14: 608–619–608–619.
44.
HellströmI.TorresS. (2013) A wish to know but not always tell – couples living with dementia talk about disclosure preferences. Aging & Mental Health17: 157–167–157–167.
45.
HighD. M.WhitehouseP. J.PostS. G.BergL. (1994) Guidelines for addressing ethical and legal issues in Alzheimer disease research: A position paper. Alzheimer Disease & Associated Disorders8: 66–74.
46.
Hoe, J.KatonaC.OrellM.LivingstoneG. (2007) Quality of life in dementia: Care recipient and caregiver perceptions of quality of life in dementia: The LASER-AD study. International Journal of Geriatric Psychiatry22: 1031–1036.
47.
HoeJ.KatonaC.RochB.LivingstonG. (2005) Use of the QOL-AD for measuring quality of life in people with severe dementia—the LASER-AD study. Age & Ageing34: 130–135.
48.
HoltheT.ThorsenK.JosephssonS. (2007) Occupational patterns of people with dementia in residential care: An ethnographic study. Scandinavian Journal of Occupational Health14: 96–107.
49.
HollowayI.WheelerS. (2002) Qualitative research in nursing, (2nd ed.). Oxford, UK: Blackwell Science.
50.
HubbardG.DownsM.TesterS. (2003) Including older people with dementia in research: Challenges and strategies. Journal of Aging and Mental Health7: 351–362–351–362.
JohanssonL.ChristenssonL.SidenvallB. (2011) Managing mealtime tasks: Told by persons with dementia. Journal of Clinical Nursing20: 2552–2562.
54.
KeadyJ. (1996) The experience of dementia: a review of the literature and implications for nursing practice. Journal of Clinical Nursing5: 275–288–275–288.
55.
Kitwood, T. (1995). Cultures of care: Tradition and change. In T. Kitwood, & S. Benson (Eds), The new culture of dementia care (pp. 7–11). London, UK: Hawker Publications.
56.
KitwoodT. (1997) Dementia reconsidered: The person comes first, Buckingham, UK: Open University Press.
57.
KnightR. (2005) Interviewing people with dementia using video. Journal of Dementia Care13: 31–35.
58.
LeungK.FinlayJ.SilviusJ. L.KoehnS.McClearyL.CohenC. A.DrummondN. (2011) Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians. Health and Social Care in the Community19: 372–381–372–381.
59.
LloydV.GathererA.KalsyS. (2006) Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research16: 1386–1404.
60.
LogsdonR. G.GibbonsL. E.McCurryS. M.TerriL. (1999) Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging5: 21–32–21–32.
61.
May, K. (1991). Interview techniques in qualitative research. In J. Morse (Ed.), Qualitative nursing research: A contemporary dialogue (pp. 188–201). Newbury Park, CA: Sage.
62.
McIntyreA.ReynoldsF. (2012) There’s no apprenticeship for Alzheimer's: the caring relationship when an older person experiencing dementia falls. Ageing & Society32: 873–896.
63.
McKeownJ.ClarkeA.IngletonC.RepperJ. (2010) Acitvely involving people with dementia in research. Journal of Clinical Nursing19: 1935–1943–1935–1943.
64.
McKillopJ.WilkinsonH. (2004) Make it easy on yourself! Advice to researchers from someone with dementia on being interviewed. Dementia3: 117–125–117–125.
65.
Mental Capacity Act. (2005). Chapter 9. Printed in the UK: Her Majesty's Stationery Office.
66.
MitchellP.KochT. (1997) An attempt to give nursing home residents a voice in the quality improvement process; the challenge of frailty. Journal of Clinical Nursing6: 453–461.
67.
MolyneauxV. J.ButchardS.SimpsonJ.MurrayC. (2012) The co-construction of couplehood in dementia. Dementia11: 483–502.
68.
MooreT. F.HollettJ. (2003) Giving voice to persons living with dementia: The researcher’s opportunities and challenges. Nursing Science Quarterly16: 163–167–163–167.
69.
MountainG. A.CraigC. (2012) What should be in a self-management programme for people with early dementia?Aging & Mental Health16: 576–583.
70.
MoyleW.KellettU.BallantyneA.GraciaN. (2011) Dementia and loneliness: An Australian perspective. Journal of Clinical Nursing20: 1445–1453–1445–1453.
71.
MozleyC. G.HuxleyP.SutcliffeC.BagleyH.BurnsA.ChallisD.CordingleyL. (1999) ‘Not knowing where I am doesn’t mean I don’t know what I like’: Cognitive impairment and quality of life responses in elderly people. International Journal of Geriatric Psychiatry14: 776–783.
72.
MurphyJ.OliverT. M. (2013) The use of Talking Mats to support people with dementia and their carers to make decisions together. Health & Social Care in the Community21: 171–180–171–180.
73.
Murphy, J., Tester, S., Hubbard, G., Downs, M., & McDonald, C. (2005). Enabling frail older people with a communication difficulty to express their views: The use of Talking Mats as an interview tool. Health and Social Care in the Community, 13(2), 95–107.
74.
NgA. V. (2009) Making sense of dementia using infant observation techniques: a psychoanalytic perspective on a neuropathological disease. Infant Observation: International Journal of Infant Observation and Its Applications12: 83–105.
75.
NolanM.RyanT.EnderbyP.ReidD. (2002) Towards a more inclusive vision of dementia care practice and research. Dementia1: 191–211–191–211.
76.
NygardL. (2006) How can we get access to the experiences of people with dementia?Scandinavian Journal of Occupational Therapy13: 101–112–101–112.
77.
O’ConnorD.PhinneyA.SmithA.SmallJ.PurvesB.PerryJ.BeattieL. (2007) Personhood in dementia care: Developing a research agenda for broadening the vision. Dementia6: 121–141–121–141.
78.
O’SheaE.DevaneD.MurphyK.CooneyA.CaseyD.JordanF.MurphyE. (2011) Effectiveness of a structured education reminiscence-based programme for staff on the quality of resident with dementia in long-stay units: A study protocol for a cluster randomised trial. Trials12: 41–41.
79.
ParahooK. (2006) Nursing research: Principles, practice and methods, London, UK: Palgrave.
80.
ParseR. R. (1996) Quality of life for persons living with Alzheimer’s disease: The human becoming perspective. Nursing Science Quarterly9: 126–133.
81.
Phinney, A. & Moody, E. M. (2011). Leisure Connections: Benefits and Challenges of Participating in a Social Recreation Group for People With Early Dementia. Activities, Adaptation & Aging, 35(2), 111–130.
82.
Pipon-Young, K., Lee, M., Jones, F., & Guss, R. (2011). I'm not all gone, I can still speak: The experiences of younger people with dementia, An action research study. Dementia, 11(5), 597–606.
PrinceM.BryceR.AlbaneseE.WimoA.RibeiroW.FerriC. P. (2013) The global prevalence of dementia: A systematic review and meta-analysis. Alzheimer's & Dementia: The Journal of the Alzheimer's Association9: 63–75.
85.
RaitG.WaltersK.BottomleyC.PetersenI.IliffeS.NazarethI. (2010) Survival of people with clinical diagnosis of dementia in primary care: cohort study. BMJ341: c3584–c3584.
86.
ReadS.Maslin-ProtheroS. (2011) The involvement of users and carers in health and social research: The realities of inclusion and engagement. Qualitative Health Research21: 704–713.
87.
SabatS. (2003) Some potential benefits of creating research partnerships with people with Alzheimer’s disease. Research Policy and Planning21: 5–12–5–12.
88.
SandsL.FerreiraP.StewartA.BrodM.YaffeK., What explains differences between dementia patients’ and their caregivers’ ratings of patients’ quality of life?Journal of Geriatric Psychiatry12: 272–280–272–280.
89.
SlaughterS.ColeD.JenningsE.ReimerM. (2007) Consent and assent to participate in research from people with dementia. Nurse Ethics14: 27–40.
90.
Smebye, K., & Kirkevold, M. (2012). How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Services, 12(1), 241.
91.
SpectorA.GardnerC.OrrellM. (2011) The impact of cognitive stimulation therapy groups on people with dementia: views from participants, their carers and group facilitators. Aging & Mental Health15: 945–949.
92.
Stern, P. N. (2007). On solid ground: essential properties for growing grounded theory. In A. Byrant & K. Charmaz (Eds), The Sage Handbook of Grounded Theory (pp. 114--126), London, UK: Sage.
93.
TeitelmanJ.RaberC.WattsJ. (2010) The power of the social environment in motivating persons with dementia to engage in occupation: Qualitative findings. Physical & Occupational Therapy in Geriatrics28: 321–333.
94.
TheinN. W.D'SouzaG.SheehanB. (2011) Expectations and experience of moving to a care home: Perceptions of older people with dementia. Dementia10: 7–18.
95.
ThorgrimsenL.SelwoodA.SpectorA.RoyanL.de Madariaga LopezM.WoodsR. T.OrrellM. (2003) Whose quality of life is it anyway?: the validity and reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) scale. Alzheimer’s Disease & Associated Disorders17: 201–208.
96.
van ZadelhoffE.VerbeekH.WiddershovenG.van RossumE.AbmaT. (2011) Good care in group home living for people with dementia. Experiences of residents, family and nursing staff. Journal of Clinical Nursing20: 2490–2500–2490–2500.
97.
Wilkinson, H. (2002). Including people with dementia in research: Methods and motivations. In H. Wilkinson (Ed.), The perspectives of people with dementia: Research methods and motivations (pp. 9–24). London, UK: Jessica Kingsley.
98.
Wolverson RadbourneE. L.ClarkeC.Moniz-CookE. (2010) Remaining hopeful in early-stage dementia: a qualitative study. Aging & Mental Health14: 450–460.
99.
World Health Organization (2012) Dementia a public health priority, Geneva, Switzerland: World Health Organization and Alzheimer’s Disease International.
100.
XieJ.BrayneC.MatthewsF. E.The Medical Research Council Cognitive Function and Ageing Study collaborators (2008) Survival times in people with dementia: Analysis from population based cohort study with 14 year follow-up. British Medical Journal336: 258–258.
