Developing poetry as a research methodology with rarer forms of dementia: Four research protocols

People living with rarer forms of dementia tend to have progressive cognitive symptoms affecting skills other than memory and/ or onset before the age of 65 years. They are often misdiagnosed and due to symptom profile or age of onset, do not usually fit well with care pathways designed for older people with typical Alzheimer’s disease or vascular dementia. Although the arts have been increasingly used as interventions to support people with dementia, there is very little attention given to rarer dementia forms in arts and health research or practice. The objective of the present international study seeks to systematically explore four diverse forms of poetry writing within this population through virtual and in-person small and large group formats. Our approach includes investigating poetic processes as methodology through the lens of an arts-based methodological approach in order to explore how poems construct knowledge and a felt experience. We will also use more traditional qualitative approaches to understand the experience of writing, reading and listening to poetry as an intervention that can be used with different rarer forms of dementia. To the best of our knowledge, this will be the first study to explore poetry using multiple research protocols. The results will have implications for methodology development, co-constructed poetic inquiry and multiple opportunities for involving poetry in supporting people with dementia and family members.

Alexander, H. A. (2003). Aesthetic inquiry in education: Community,
transcendence and the meaning of pedagogy. Journal of Aesthetic
Education, 37(2), 1–18. https://doi.org/10.2307/3527451
Allen, J. P. (2015). The ancient Egyptian pyramid texts, (2nd ed.).
Society for Biblical Literature. translator.
Alzheimer’s Society (2017). Turning up the volume: Unheard voices
of people with dementia. Author.
Andrews, T. (2012). What is social constructionism? Grounded
Theory Review, 11(1), 39. http://groundedtheoryreview.com/
2012/06/01/what-is-social-constructionism/
Austin, D., & Forinash, M. (2005). Arts-based inquiry. IN: Music
therapy research (2nd ed., pp. 458–471). N. H. Gilsum: Barcelona
Publishers.
Ball, S., Leach, B., Bousfield, J., Smith, P., & Marjanovic, S. (2021).
Arts-based approaches to public engagement with research.
Rand.
Bartlett, R. (2014a). The emergent modes of dementia activism.
Ageing & Society, 34(4), 623–644. https://doi.org/10.1017/
S0144686X12001158
Bartlett, R. (2014b). Citizenship in action: The lived experiences of
citizens with dementia who campaign for social change. Disability
& Society, 29(8), 1291–1304. https://doi.org/10.1080/
09687599.2014.924905
Beissinger, M. H. (2012). Oral poetry (pp. 978–981). The Princeton encyclopedia of poetry and poetics: Princeton University Press.Berger, P., & Luckmann, T. (1991). The social construction of reality.
Penguin.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology.
Qualitative Research in Psychology, 3(2), 77–101.
https://doi.org/10.1191/1478088706qp063oa
Breton, A. (1948). Le cadavre exquis: Son exaltation par Andr´e
Breton. Paris La Dragonne, Galerie Nina Dausset, (October 7–
30).
British Psychological Society (2016). Psychological dimensions of
dementia: Putting the person at the centre of care. author.
Brotherhood, E. V., Stott, J., Windle, G., Barker, S., Culley, S.,
Harding, E., Camic, P. M., Caufield, M., Ezeofor, V., Hoare, Z.,
McKee-Jackson, R., Roberts, J., Sharp, R., Suarez-Gonzalez,
A., Sullivan, M. P., Tudor Edwards, R.,Walton, J.,Waddington,
C., Winrow, E., & Crutch, S. J. (2020). Protocol for the rare
dementia support (RDS) impact study. International Journal of
Geriatric Psychiatry, 35(8), 833–841. https://doi.org/10.1002/
gps.5253
Bryman, A. (2008). Of methods and methodology. Qualitative Research
in Organisations and Management, 3(2), 159–168.
https://doi.org/10.1108/17465640810900568
Camic, P. M. (2008). Playing in the mud: Health psychology, the arts, and
creative approaches to health care. Journal of Health Psychology,
13(2), 287–298. https://doi.org/10.1177/1359105307086698
Camic, P. M (Ed.), (2021). (2nd ed.). Qualitative research in psychology:
Expanding perspectives in methodology and design:
American Psychological Association.
Carey, J (2020). A little history of poetry. Yale University Press.
https://doi.org/10.12987/9780300252521
Cartwright, A. V., Stoner, C. R., Pione, R. D., & Spector, A. (2021).
The experiences of those affected by parental young onset
dementia: A qualitative systematic literature review. Dementia,
20(7), 2618–2639. https://doi.org/10.1177/1471301220988231
Clemerson, G., Walsh, S., & Isaac, C. (2014). Towards living well
with young onset dementia: An exploration of coping from the
perspective of those diagnosed. Dementia, 13(4), 451–466.
https://doi.org/10.1177/1471301212474149
York (2016). In S. Clift, & P. M Camic (Eds.), Oxford textbook of
creative arts, health and wellbeing: International perspectives
on practice, policy and research. Oxford University Press.
Daykin, N., & Stickley, T. (2016). The role of qualitative research in
arts and health. In S. Clift, & P. M. Camic (Eds.), Oxford
textbook of creative arts, health and wellbeing: International
perspectives on practice, policy and research. Oxford University
Press.
Department of Constitutional AffairsLondon (2007). The mental
capacity act code of practice. TSO. https://www.gov.uk/
government/publications/mental-capacity-act-code-of-practice
Dewing, J. (2008). Personhood and dementia care: Revisiting tom kitwood’s ideas. International Journal of Older People Nursing,3(1), 3–13. https://doi.org/10.1111/j.1748-3743.2007.00103.x
Finley, S. (2007). Arts-based research. In G. Knowles, & A. L. Cole (Eds.), HandbookHandbook of the arts in qualitative research (pp. 71–82).
Sage.
Finnegan, R. (2012). Oral literature in Africa. Open Book Publishers.
Fraser, K. D. (2011). Fatima al Sayah, FArts-based methods in health
research: A systematic review of the literature. Arts & Health,
3(2), 110–145. https://doi.org/10.1080/17533015.2011.561357
Goodenough, B., Fleming, R., Young, M., Burns, K., Jones, C., &
Forbes, F. (2017). Raising awareness of research evidence
among health professionals delivering dementia care: Are
knowledge translation workshops useful? Gerontology & Geriatrics
Education, 38(4), 392–406. https://doi.org/10.1080/
02701960.2016.1247064
Gregory, H. (2011). Using poetry to improve the quality of life and
care for people with dementia: A qualitative analysis of the try to
remember programme. Arts &; Health, 3(2), 160–172. https://
doi.org/10.1080/17533015.2011.584885
Guzm´an-Gar´cia, A., Hughes, J. C., James, I. A., & Rochester, L.
(2013). Dancing as a psychosocial intervention in care homes: A
systematic review of the literature. International Journal of
Geriatric Psychiatry, 28(9), 914–924. https://doi.org/10.1002/
gps.3913
Hadas, R. (2011). Strange relation: A memoir of marriage, dementia
and poetry. Paul Dry Books.
Hammersley, M. (1992). What’s wrong with ethnography?
Routledge.
Hanauer, D. I. (2010). Poetry as research. John Benjamins.
Harvey, R. J., Roques, P., Fox, N. C., & Rossor, M. N. (1996). Non-
Alzheimer dementias in young-patients. British Journal of
Psychiatry, 168, 384–385. https://doi.org/doi:10.1192/bjp.168.
3.384b
Hendriks, S., Peetoom, K., Bakker, C., van der Flier, W. M., Papma,
J. M., Koopmans, R., Verhey, F. R. J., de Vugt, M., K¨ohler, S.,
Withall, A., Parlevliet, J. L., Uysal-Bozkir, O¨ ., Gibson, R. C.,
Neita, S. M., Nielsen, T. R., Salem, L. C., Nyberg, J., Lopes,
M. A., Dominguez, J. C., & Ruano, L. (2021). Young-onset
dementia epidemiology study group global prevalence of
young-onset dementia: A systematic review and meta-analysis.
JAMA Neurology, 78(9), 1080–1090. https://doi.org/10.1001/
jamaneurol.2021.2161
Higgs, P., & Gilleard, C. (2016). Interrogating personhood and dementia.
Aging & Mental Health, 20(8), 773–780. http://dx.doi.
org/10.1080/13607863.2015.1118012
Kidd, L. L., Zauszniewski, J. A., & Morris, D. L (2011). Benefits of a
poetry writing intervention for family caregivers of elders with
dementia. Issues in Mental Health Nursing, 32(9), 598–604.
https://doi.org/10.3109/01612840.2011.576801
Kit wood, T. M. (1997). Dementia reconsidered: The person comes
first. Open University Press.
Konishi, J (1984). A history of Japanese literature: The archaic and
ancient ages. Princeton University Press.
Kriss, A., & Mulligan (2013). Raising the exquisite corpse: Collaborative
story-writing in inpatient group psychotherapy. The
New School Psychology Bulletin, 10(1), 21–26. online ISSN:
1931-7948. https://doi.org/10.1037/e543732013-003
Lafrenière, D., & Cox, S. M. (2012). ‘If you can call it a poem’:
Toward a framework for the assessment of arts-based works.Qualitative Research, 13(3), 318–336. https://doi.org/10.1177/
1468794112446104
Lee, P. H. (2002). The Columbia anthology of traditional Korean
poetry. Columbia University Press.
Liu,W. C.,& Yucheng Lo, I. (Eds.) (1990). Sunflower splendor: Three
thousand years of Chinese poetry: Indiana University Press.
Living Words (2021). Bringing the inside out: Living Words
Press.Folkestone
Malterud, K., Siersma, V., & Guassora, A. D. (2016). Sample size in
qualitative interview studies: Guided by information power.
Qualitative Health Research, 26(13), 1753–1760. https://doi.
org/10.1177/1049732315617444
Malterud, K., Siersma, V., & Guassora, A. D. (2021). Information
power: Sample content and size in qualitative studies. In P. M.
Camic (Ed.), Qualitative research in psychology: Expanding
perspectives in methodology and design (2nd ed.): American
Psychological Association. https://doi.org/10.1037/0000252-
004
McCulliss (2013). Poetic inquiry and multidisciplinary qualitative
research. Journal of Poetry Therapy, 26(2), 83–114. https://doi.
org/10.1080/08893675.2013.794536.
McNiff, S. (2007). Arts-based research. In G. Knowles, & A. L. Cole
(Eds.), Handbook of the arts in qualitative research (pp. 29–41).
Sage.
Mental Capacity Act (2005). Originally. https://www.legislation.gov.
uk/ukpga/2005/9/contents
Millenaar, J. K., Bakker, C., Koopmans, R. T., Verhey, F. R., Kurz, A.,&
de Vugt,M. E. (2016). The care needs and experiences with the use
of services of people with young-onset dementia and their caregivers:
A systematic review. International Journal of Geriatric
Psychiatry, 31(12), 1261–1276. https://doi.org/10.1002/gps.4502
Morse, J. M. (2015). All data are not equal. Qualitative Health Research,
25(9), 1169–1170. https://doi.org/10.1177/1049732315597655
Nyman, S. R., & Szymczynska, P. (2016). Meaningful activities for
improving the wellbeing of people with dementia: Beyond mere
pleasure to meeting fundamental psychological needs. Perspectives
in Public Health, 136(2), 99–107. https://doi.org/10.
1177/1757913915626193
O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook,
D. A. (2014). Standards for reporting qualitative research: A
synthesis of recommendations. Academic Medicine, 89(9),
1245–1251. https://doi.org/10.1097/ACM.0000000000000388Petrescu, I., MacFarlane, K., & Ranzijn, R. (2014). Psychological
effects of poetry workshops with people with early stage dementia:
An exploratory study. Dementia, 13(2), 207–215.
https://doi.org/10.1177/1471301212456279
Sinner, A., Leggo, C., Irwin, R. L., Gouzouasis, P., & Grauer, K.
(2006). Arts-based educational research dissertations: Reviewing
the practices of new scholars. Canadian Journal of Education,
29(4), 1223–1270. https://doi.org/10.2307/20054216
Sullivan, M. P., Camic, P. M., Grillo, A., & Harding, E. (2021).
Situating rare dementia support: A multisite analysis. 50th
annual conference of the British Gerontological Society. Lancaster
University, 7-9.
Swinnen, A. M. C. (2016). A study of poetry interventions in dementia
care. Dementia, 15(6), 1377–1404. https://doi.org/10.
1177/1471301214560378. Healing words.
Swinnen, A. M. C., & de Medeiros, K. (2018). “Play” and people
living with dementia: A humanities-based inquiry of TimeSlips
and the Alzheimer’s poetry project. The Gerontologist, 58(2),
261–269. https://doi.org/10.1093/geront/gnw196
TCPS (2018). Tri-council policy statement: Ethical conduct for research
involving humans. https://ethics.gc.ca/eng/policy-politique_tcps2-
eptc2_2018.html
UK Dementia Research Institute (2021). Supporting people living
with rare dementias: In conversation with Prof Nick Fox. https://
ukdri.ac.uk/news-and-events/supporting-
WHO (2020). Dementia. https://www.who.int/news-room/fact-sheets/
detail/dementia
Woolley, J. D., Khan, B. K., Murthy, N. K., Miller, B. L., & Rankin,
K. P (2011). The diagnostic challenge of psychiatric symptoms
in neurodegenerative disease, diagnostic challenge of psychiatric
symptoms in neurodegenerative disease: Rates of and risk
factors for prior psychiatric diagnosis in patients with early
neurodegenerative disease. The Journal of Clinical Psychiatry,
72(2), 126–133. https://doi.org/10.4088/JCP.10m06382oli
Zeilig, H., Killick, J., & Fox, C. (2014). Participative arts for people
living with a dementia: A critical review. International Journal
of Ageing and Later Life, 9(1), 7–34. https://doi.org/10.3384/
ijal.1652-8670.14238
Zeilig, H., West, J., & Williams, M. (2018). Co-creativity: Possibilities
for using the arts with people with a dementia. Quality in
Ageing and Older Adults, 19(2), 35–145. https://doi.org/10.
1108/QAOA-02-2018-0008