‘I still want to be part of the world...where I belong’. A case study of the experiences of a man with Alzheimer’s of dementia-friendly guided tours at an art museum
Article Sidebar
Main Article Content
Abstract
There is a growing interest in the role art museums might play in enriching the lives of persons with dementia. The literature has started incorporating the views of persons with dementia in the knowledge production, but in-depth explorations of their art experiences are still rare in the literature. This article adds to the research with a case study of a man with Alzheimer’s who regularly takes part in dementia-friendly guided tours at his local art museum. The article examines through a narrative analysis the role his visits to the art museum might play in the way he navigates life with Alzheimer’s. The authors argue that the art experiences are important cultural resources in the man’s effort to ‘hold his own’ faced with Alzheimer’s. The study is bound to a Norwegian context, but the art programme has similarities with related programmes at art museums in other countries.
Metrics
Article Details
This work is licensed under a Creative Commons Attribution 4.0 International License.
Since 2020 the International Journal of Ageing and Later Life uses a Creative Commons: Attribution license, which allows users to distribute the work and to reform or build upon it without the author's permission. Full reference to the author must be given.
References
Abma, T. A. & Stake, R. E. (2014). Science of the particular: An advocacy of naturalistic case study in health research. Qualitative Health Research 24(8): 1150–1161. doi: 10.1177/1049732314543196
Bamberg, M. & Andrews, M. (2004). Considering Counter-Narratives: Narrating, Resisting, Making Sense. John Benjamins Publishing Company, Amsterdam.
Bartlett, R. & O’Connor, D. (2010). Broadening the Dementia Debate: Towards Social Citizenship. Policy Press.
Beard, R. L., Knauss, J. & Moyer, D. (2009). Managing disability and en¬joying life: How we reframe dementia through personal narratives. Journal of Aging Studies 23(4): 227–235. doi: 10.1016/j.jaging.2008.01.002
Birt, L., Poland, F., Csipke, E. & Charlesworth, G. (2017). Shifting demen¬tia discourses from deficit to active citizenship. Sociology of Health & Illness 39(2): 199–211. doi: 10.1111/1467-9566.12530
Burnside, L. D., Knecht, M. J., Hopley, E. K. & Logsdon, R. G. (2017). Here: Now – Conceptual model of the impact of an experiential arts program on persons with dementia and their care partners. Dementia 16(1): 29– 45. doi: 10.1177/1471301215577220
Camic, P. M., Baker, E. L. & Tischler, V. (2016). Theorizing how art gallery interventions impact people with dementia and their caregivers. The Gerontologist 56(6): 1033–1041. doi: 10.1093/geront/gnv063
Camic, P. M. & Chatterjee, H. J. (2013). Museums and art galleries as part¬ners for public health interventions. Perspectives in Public Health 133(1): 66–71. doi: 10.1177/1757913912468523
Camic, P. M., Tischler, V. & Pearman, C. H. (2014). Viewing and making to¬gether: A multi-session art-gallery-based intervention for people with dementia and their cares. Aging & Mental Health 18(2): 161–168. doi: 10.1080/13607863.2013.818101
de Medeiros, K. & Basting, A. (2014). “Shall I compare thee to a dose of do¬nepezil?”: Cultural arts interventions in dementia care research. Geron¬tologist 54(3): 344–353. doi: 10.1093/geront/gnt055
Dupuis, S. L., Kontos, P., Mitchell, G., Jonas-Simpson, C., Gray, J., O’Con¬nor, D. & Nedlund, A.-C. (2016). Re-claiming citizenship through the arts. Dementia 15(3): 358–380. doi: 10.1177/1471301216637206
Fangen, K. (2010). Deltagende observasjon [Participatory Observation] (2. utg.). Fagbokforlaget, Bergen.
Flatt, J. D., Liptak, A., Oakley, M. A., Gogan, J., Varner, T. & Lingler, J. H. (2015). Subjective experiences of an art museum engagement activity for persons with early Alzheimer’s disease and their family caregiv-ers. American Journal of Alzheimer’s Disease and Other Dementias 30(4): 380–389. doi: 10.1177/1533317514549953
Frank, A. W. (2005). What is dialogical research, and why should we do it? Qualitative Health Research 15(7): 964–974. doi: 10.1177/1049732305279078
Frank, A. W. (2010). Letting Stories Breathe: A Socio-Narratology. University of Chicago Press, Chicago.
Frank, A. W. (2012a). Practicing dialogical narrative analysis. In J. Hol¬stein & J. Gubrium (eds.), Varieties of Narrative Analysis (pp. 33–52). Sage Publications. doi: 10.4135/9781506335117.n3
Frank, A. W. (2012b). Holding one’s own as an art of living: Reflections on companion stories and narrative analysis. Ars Vivendi Journal 2: 2–10.
Frank, A. W. (2013). The Wounded Storyteller: Body, Illness, and Ethics. Uni¬versity of Chicago Press.
Gubrium, J. & Holstein, J. (2009). Analyzing Narrative Reality. Sage Publica¬tions, Thousand Oaks. doi: 10.4135/9781452234854.
Harper, D. (2002). Talking about pictures: A case for photo elicitation. Vi¬sual Studies 17(1): 13–26. doi: 10.1080/14725860220137345
Hubbard, G., Downs, M. G. & Tester, S. (2003). Including older people with dementia in research: Challenges and strategies. Aging & Mental Health 7(5): 351–362. doi: 10.1080/1360786031000150685
Hughes, J. C. (2019). Citizenship and authenticity in dementia: A scoping review. Maturitas 125: 11–16. doi: 10.1016/j.maturitas.2019.04.001
Hydén, L.-C., Lindemann, H. & Brockmeier, J. (2014). Beyond Loss: Demen¬tia, Identity, Personhood. Oxford University Press.
Johnson, J., Culverwell, A., Hulbert, S., Robertson, M. & Camic, P. M. (2017). Museum activities in dementia care: Using visual analog scales to measure subjective wellbeing. Dementia (London, England) 16(5): 591–610. doi: 10.1177/1471301215611763
Keady, J., Hydén, L.-C., Johnson, A. & Swarbrick, C. (2017). Social Re¬search Methods in Dementia Studies: Inclusion and Innovation. Rout¬ledge, Milton.
Kelly, F. & Innes, A. (2013). Human rights, citizenship and dementia care nursing. International Journal of Older People Nursing 8(1): 61–70. doi: 10.1111/j.1748-3743.2011.00308.x
Kullberg, A. & Odzakovic, E. (2018). Walking interviews as a research method with people living with dementia in their local community. In J. Keady, L.-C. Hyden, A. Johnson & C. Swarbrick (eds.), Social Re-search Methods in Dementia Studies: Inclusion and Innovation (pp. 23–37). Routledge.
Lea, E., Hansen, C. & Synnes, O. (2020). Kunsten å ta kunsten på alvor. Personer med demens på kunstmuseum. Journal of Arts, Culture & Health 2(01): 51–57.
Lea, E. & Synnes, O. (2020). An intimate connection: Exploring the visual art experiences of persons with dementia. Dementia 1471301220911264 20(3):848–866. doi: 10.1177/1471301220911264
Lindemann, H. (2014). Second nature and the tragedy of Alzheimer’s. In L. C. Hydén, H. Lindemann & J. Brockmeier (eds.), Beyond Loss: Demen¬tia, Identity, Personhood (pp. 11–23). Oxford University Press, London.
Loseke, D. R. (2007). The study of identity as cultural, institutional, orga¬nizational, and personal narratives: Theoretical and empirical integra¬tions. The Sociological Quarterly 48(4): 661–688. JSTOR.
Mattingly, C. (1994). The concept of therapeutic “emplotment”. Social Sci¬ence & Medicine 38(6): 811–822. doi: 10.1016/0277-9536(94)90153-8
Mattingly, C. (1998). Healing Dramas and Clinical Plots: The Narrative Struc¬ture of Experience. Cambridge University Press, Cambridge.
Mattingly, C. F. (2007). Acted narratives: From storytelling to emergent dramas. In Clandinin, Jean D. (ed.), Handbook of Narrative Inquiry: Map¬ping a Methodology (pp. 405–425). Sage Publications, Thousand Oaks doi: 10.4135/9781452226552
O’Connor, D. & Nedlund, A.-C. (2016). Editorial introduction: Spe¬cial issue on citizenship and dementia. Dementia 15(3): 285–288. doi: 10.1177/1471301216647150
Riessman, C. K. (2008). Narrative Methods for the Human Sciences (pp. X, 251). Sage Publications, Los Angeles.
Schall, A., Tesky, V. A., Adams, A.-K. & Pantel, J. (2018). Art museum-based intervention to promote emotional well-being and improve quality of life in people with dementia: The ARTEMIS project. Dementia 17(6): 728–743. doi: 10.1177/1471301217730451
Schöttler, T. (2016). Pictorial narrativity: Transcending intrinsically incom¬plete representation. In N. Igl & S. Zeman (eds.), Perspectives on Nar¬rativity and Narrative Perspectivization (pp. 161–182). John Benjamins Publishing Company, Amsterdam.
Shoesmith, E. K., Charura, D. & Surr, C. (2020). What are the elements needed to create an effective visual art intervention for people with dementia? A qualitative exploration. Dementia (London, England) 147130122093848– 1471301220938481 20(4):1336–1355. doi: 10.1177/1471301220938481
Stake, R. E. (1995). The Art of Case Study Research. Sage Publications, Thou¬sand Oaks.
Steeman, E., Godderis, J., Grypdonck, M., De Bal, N. & De Casterle, B. D. (2007). Living with dementia from the perspective of older peo¬ple: Is it a positive story? Aging & Mental Health 11(2): 119–130. doi: 10.1080/13607860600963364
Synnes. O. (2015). Narratives of nostalgia in the face of death: The impor¬tance of lighter stories of the past in palliative care. Journal of Aging Studies 34: 169–176. doi: 10.1016/j.jaging.2015.02.007
Synnes, O. & Malterud, K. (2019). Queer narratives and minority stress: Sto¬ries from lesbian, gay and bisexual individuals in Norway. Scandinavian Journal of Public Health 47(2): 105–114. doi: 10.1177/1403494818759841
Swaffer, K. (2016). What the Hell Happened to my brain? Living beyond De¬mentia. Jessica Kingsley Publishers, London.
United Nations. (1948). The Universal Declaration of Human Rights. Available on https://www.un.org/en/universal-declaration-human-rights/ (Accessed: November 1, 2020).
van Hensbroek, P. B. (2010). Cultural citizenship as a normative no¬tion for activist practices. Citizenship Studies 14(3): 317–330. doi: 10.1080/13621021003731880
Varga, A. K. & Raney, R. (1988). Stories told by pictures. Style 22(2): 194–208.
Whitehouse, P. J. & George, D. R. (2008). The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis (Reprint edition). St. Martin’s Griffin, New York.
Windle, G., Gregory, S., Howson-Griffiths, T., Newman, A., O’Brien, D. & Goulding, A. (2018). Exploring the theoretical foundations of visual art programmes for people living with dementia. Dementia 17(6): 702–727. doi: 10.1177/1471301217726613
Windle, G., Gregory, S., Newman, A., Goulding, A., O’Brien, D. & Parkin¬son, C. (2014). Understanding the impact of visual arts interventions for people living with dementia: A realist review protocol. Systematic Reviews 3: 91. doi: 10.1186/2046-4053-3-91
World Health Organization. (2016). International AD. World Alzheimer Re¬port 2016. Available on http://www.alz.co.uk/research/WorldAlzhei¬merReport2016.pdf (Accessed: November 1, 2020).
World Health Organization. (2017). Global Action Plan on the Public Health Re¬sponse to Dementia 2017–2025. Available on https://apps.who.int/iris/ bitstream/handle/10665/259615/9789241513487-eng.pdf (Accessed: November 1, 2020).
Xanthopoulou, P. & McCabe, R. (2019). Subjective experiences of cognitive decline and receiving a diagnosis of dementia: Qualitative interviews with people recently diagnosed in memory clinics in the UK. BMJ Open 9(8). doi: 10.1136/bmjopen-2018-026071