Hostname: page-component-cd9895bd7-q99xh Total loading time: 0 Render date: 2024-12-23T05:48:24.409Z Has data issue: false hasContentIssue false
  • English
  • Français

A multiple perspective view of personhood in dementia

Published online by Cambridge University Press:  18 February 2021

Niamh Hennelly Open the ORCID record for Niamh Hennelly [Opens in a new window]  and
Eamon O'Shea
Niamh Hennelly*
Affiliation:
Centre for Economic and Social Research on Dementia, National University of Ireland, Galway, Ireland
Eamon O'Shea
Affiliation:
Centre for Economic and Social Research on Dementia, National University of Ireland, Galway, Ireland
*
*Corresponding author. Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Personhood has been a key influence on the development of person-centred care models in dementia. However, there is ambiguity around the concept and interpretation of personhood, and what it means in practical terms for the delivery of care to people with dementia. This study examines the conceptualisation of personhood within the formal care system for people with dementia in Ireland. A multiple perspective study design examines the experiences of personhood in dementia from the perspectives of people with dementia, family carers and a range of formal carers. Semi-structured interviews with participants were conducted in both community and long-term care settings. Interpretative phenomenological analysis is used to examine the data. A total of 31 participants were interviewed: eight people with dementia, eight family carers and 15 formal carers. There is general consensus on the core elements of personhood among all participants: interests and preferences; lifecourse experiences; social interaction; family; and place. However, there is ambiguity among family carers and formal carers in the interpretation of changes to personhood as the disease progresses. Interpersonal and structural barriers to supporting personhood are identified by all participants. The findings provide guidance on the traits of personhood-enhancing care, including effective communication skills, and the potential of health and social care reform to support the core elements of personhood among people with dementia.

Keywords

selfidentityperson-centred careperson with dementiaformal carersfamily carers
Type
Article
Information
Ageing & Society , Volume 42 , Issue 9 , September 2022 , pp. 2103 - 2121
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adams, T and Gardiner, P (2005) Communication and interaction within dementia care triads: developing a theory for relationship-centred care. Dementia 4, 185–205.CrossRefGoogle Scholar
Baldwin, C, Capstick, A, Phinney, A, Purves, B, O'Connor, D, Chaudhury, H and Bartlett, R (2007) Conceptualizing personhood in dementia. In Baldwin, C and Capstick, A (eds), Tom Kitwood on Dementia: A Reader and Critical Commentary. Maidenhead, UK: Open University Press, pp. 171–188.Google Scholar
Bartlett, R, Milne, R and Croucher, R (2019) Strategies to improve recruitment of people with dementia to research studies. Dementia 18, 2494–2504.CrossRefGoogle ScholarPubMed
Batra, S, Sullivan, J, Williams, BR and Geldmacher, DS (2016) Qualitative assessment of self-identity in people with advanced dementia. Dementia 15, 1260–1278.CrossRefGoogle ScholarPubMed
Beard, RL and Fox, PJ (2008) Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Social Science & Medicine 66, 1509–1520.CrossRefGoogle ScholarPubMed
Borley, G and Hardy, S (2017) A qualitative study on becoming cared for in Alzheimer's disease: the effects to women's sense of identity. Aging & Mental Health 21, 1017–1022.CrossRefGoogle ScholarPubMed
Brooker, D (2007) Person-centred Dementia Care: Making Services Better. London: Jessica Kingsley Publishers.Google Scholar
Bryden, C (2018) A continuing sense of self in the lived experience of dementia. Journal of Religion, Spirituality and Aging 30, 279–290.CrossRefGoogle Scholar
Buron, B (2008) Levels of personhood: a model for dementia care. Geriatric Nursing 29, 324–332.CrossRefGoogle Scholar
Caddell, LS and Clare, L (2010) The impact of dementia on self and identity: a systematic review. Clinical Psychology Review 30, 113–126.CrossRefGoogle ScholarPubMed
Caddell, LS and Clare, L (2012) Identity, mood, and quality of life in people with early-stage dementia. International Psychogeriatrics 24, 1306–1315.CrossRefGoogle ScholarPubMed
Chaudhury, H (1999) Self and reminiscence of place: a conceptual study. Journal of Aging and Identity 4, 231–253.CrossRefGoogle Scholar
Chaudhury, H (2008) Remembering Home: Rediscovering the Self in Dementia. Baltimore, MD: Johns Hopkins University Press.Google Scholar
Cohen-Mansfield, J, Parpura-Gill, A and Golander, H (2006) Salience of self-identity roles in persons with dementia: differences in perceptions among elderly persons, family members and caregivers. Social Science & Medicine 62, 745–757.CrossRefGoogle ScholarPubMed
Colomer, J and de Vries, J (2016) Person-centred dementia care: a reality check in two nursing homes in Ireland. Dementia 15, 1158–1170.CrossRefGoogle ScholarPubMed
De Craemer, W (1983) A cross-cultural perspective on personhood. Milbank Memorial Fund Quarterly, Health and Society 61, 19–34.CrossRefGoogle ScholarPubMed
Dementia Engagement and Empowerment Project (2013) Writing Dementia-friendly Information. Available at http://dementiavoices.org.uk/wp-content/uploads/2013/11/DEEP-Guide-Writing-dementia-friendly-information.pdf.Google Scholar
Denscombe, M (2014) The Good Research Guide: For Small-scale Social Research Projects. Buckingham, UK: McGraw-Hill Education.Google Scholar
Department of Health (2014) The Irish National Dementia Strategy. Dublin: Department of Health.Google Scholar
Dewing, J (2008) Personhood and dementia: revisiting Tom Kitwood's ideas. International Journal of Older People Nursing 3, 3–13.CrossRefGoogle ScholarPubMed
Donnelly, S, O'Brien, M, Begley, E and Brennan, J (2016) ‘I'd Prefer to Stay at Home but I Don't Have a Choice’: Meeting Older People's Preference for Care: Policy, but What About Practice? Dublin: University College Dublin.Google Scholar
Fazio, S, Pace, D, Flinner, J and Kallmyer, B (2018) The fundamentals of person-centered care for individuals with dementia. The Gerontologist 58, S10–S19.CrossRefGoogle ScholarPubMed
Harris, PB and Keady, J (2009) Selfhood in younger onset dementia: transitions and testimonies. Aging & Mental Health 13, 437–444.CrossRefGoogle ScholarPubMed
Hellström, I, Nolan, M and Lundh, U (2005) ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia 4, 7–22.CrossRefGoogle Scholar
Hennelly, N and O'Shea, E (2019) Personhood, dementia policy and the Irish National Dementia Strategy. Dementia 18, 1810–1825.CrossRefGoogle ScholarPubMed
Higgs, P and Gilleard, C (2016) Interrogating personhood and dementia. Aging & Mental Health 20, 773–780.CrossRefGoogle ScholarPubMed
Hunter, PV, Hadjistavropoulos, T, Smythe, WE, Malloy, DC, Kaasalainen, S and Williams, J (2013) The Personhood in Dementia Questionnaire (PDQ): establishing an association between beliefs about personhood and health providers’ approaches to person-centred care. Journal of Aging Studies 27, 276–287.CrossRefGoogle ScholarPubMed
Jenkins, N (2014) Dementia and the inter-embodied self. Social Theory and Health 12, 125–137.CrossRefGoogle Scholar
Kendall, M, Murray, SA, Carduff, E, Worth, A, Harris, F, Lloyd, A, Cavers, D, Grant, L, Boyd, K and Sheikh, A (2009) Use of multiperspective qualitative interviews to understand patients’ and carers’ beliefs, experiences, and needs. British Medical Journal 339, b4122.CrossRefGoogle Scholar
Kitwood, T (1997) Dementia Reconsidered: The Person Comes First. Buckingham, UK: Open University Press.Google Scholar
Kitwood, T and Bredin, K (1992) Towards a theory of dementia care: personhood and well-being. Ageing & Society 12, 269–287.CrossRefGoogle ScholarPubMed
Kontos, PC (2005) Embodied selfhood in Alzheimer's disease: rethinking person-centered care. Dementia 4, 553–570.CrossRefGoogle Scholar
Kontos, PC and Martin, W (2013) Embodiment and dementia: exploring critical narratives of selfhood, surveillance, and dementia care. Dementia 12, 288–302.CrossRefGoogle ScholarPubMed
Larkin, M, Shaw, R and Flowers, P (2019) Multiperspectival designs and processes in interpretative phenomenological analysis research. Qualitative Research in Psychology 16, 182–198.CrossRefGoogle Scholar
Malloy, DC and Hadjistavropoulos, T (2004) The problem of pain management among persons with dementia, personhood, and the ontology of relationships. Nursing Philosophy 5, 147–159.CrossRefGoogle ScholarPubMed
McCormack, B (2004) Person-centredness in gerontological nursing: an overview of the literature. Journal of Clinical Nursing 13, 31–38.CrossRefGoogle ScholarPubMed
McCormack, B, Dewing, J and McCance, T (2011) Developing person-centred care: addressing contextual challenges through practice development. Online Journal of Issues in Nursing 16, 3.Google ScholarPubMed
Meagher, M and Conroy, P (2015) The Distant Voice: A Working Paper on the First 50 Health Information and Quality Authority (Hiqa) Inspections of Residential Services for People with Disabilities. Dublin: Inclusion Ireland.Google Scholar
Nowell, ZC, Thornton, A and Simpson, J (2013) The subjective experience of personhood in dementia care settings. Dementia 12, 394–409.CrossRefGoogle ScholarPubMed
O'Connor, D, Phinney, A, Smith, A, Small, J, Purves, B, Perry, J, Drance, E, Donnelly, M, Chaudhury, H and Beattie, L (2007) Personhood in dementia care: developing a research agenda for broadening the vision. Dementia 6, 121–142.CrossRefGoogle Scholar
Pietkiewicz, I and Smith, JA (2014) A practical guide to using interpretative phenomenological analysis in qualitative research psychology. Psychological Journal 20, 7–14.Google Scholar
Prince, M, Wimo, A, Guerchet, M, Ali, G, Wu, Y and Prina, M (2015) World Alzheimer Report 2015. The Global Impact of Dementia. An Analysis of Prevalence, Incidence, Cost and Trends. London: Alzheimer's Disease International.Google Scholar
Public Health Agency of Canada (2019) A Dementia Strategy for Canada: Together We Aspire. Ottawa: Public Health Agency of Canada.Google Scholar
Quinn, C, Clare, L, McGuinness, T and Woods, RT (2012) Negotiating the balance: the triadic relationship between spousal caregivers, people with dementia and Admiral Nurses. Dementia 12, 588–605.CrossRefGoogle ScholarPubMed
Robbins, JC (2019) Expanding personhood beyond remembered selves: the sociality of memory at an Alzheimer's center in Poland. Medical Anthropology Quarterly 33, 483–500.CrossRefGoogle ScholarPubMed
Sabat, SR and Collins, M (1999) Intact social, cognitive ability, and selfhood: a case study of Alzheimer's disease. American Journal of Alzheimer's Disease and Other Dementias 14, 11–19.CrossRefGoogle Scholar
Sabat, SR and Harré, R (1992) The construction and deconstruction of self in Alzheimer's disease. Ageing & Society 12, 443–461.CrossRefGoogle Scholar
Seaman, AT (2020) ‘Like he's a kid’: relationality, family caregiving, and Alzheimer's disease. Medical Anthropology 39, 29–40.CrossRefGoogle Scholar
Selberg, S (2015) Modern art as public care: Alzheimer's and the aesthetics of universal personhood. Medical Anthropology Quarterly 29, 473–491.CrossRefGoogle ScholarPubMed
Shakespeare, T, Zeilig, H and Mittler, P (2019) Rights in mind: thinking differently about dementia and disability. Dementia 18, 1075–1088.CrossRefGoogle ScholarPubMed
Slaughter, S, Cole, D, Jennings, E and Reimer, MA (2007) Consent and assent to participate in research from people with dementia. Nursing Ethics 14, 27–40.CrossRefGoogle ScholarPubMed
Small, JA, Geldart, K, Gutman, G and Clarke Scott, MA (1998) The discourse of self in dementia. Ageing & Society 18, 291–316.CrossRefGoogle Scholar
Smith, JA, Jarman, M and Osborn, M (1999) Doing interpretative phenomenological analysis. In Murray, M and Chamberlain, K (eds), Qualitative Health Psychology: Theories and Methods. London: Sage, pp. 218–240.CrossRefGoogle Scholar
Smith, JA, Flowers, P and Larkin, M (2009) Interpretative Phenomenological Analysis: Theory, Method and Research. London: Sage.Google Scholar
Surr, CA (2006) Preservation of self in people with dementia living in residential care: a socio-biographical approach. Social Science & Medicine 62, 1720–1730.CrossRefGoogle ScholarPubMed
Tappen, RM, Williams-Burgess, C, Edelstein, J, Touhy, T and Fishman, S (1997) Communicating with individuals with Alzheimer's disease: examination of recommended strategies. Archives of Psychiatric Nursing 11, 249–256.CrossRefGoogle ScholarPubMed
The Institute of Public Health in Ireland (2018) Improving Home Care Services in Ireland: An Overview of the Findings of the Department of Health's Public Consultation. Dublin: The Institute of Public Health in Ireland.Google Scholar
Tolhurst, E, Bhattacharyya, S and Kingston, P (2014) Young onset dementia: the impact of emergent age-based factors upon personhood. Dementia 13, 193–206.CrossRefGoogle ScholarPubMed
Twigg, J and Buse, CE (2013) Dress, dementia and the embodiment of identity. Dementia 12, 326–336.CrossRefGoogle Scholar
Ummel, D and Achille, M (2016) How not to let secrets out when conducting qualitative research with dyads. Qualitative Health Research 26, 807–815.CrossRefGoogle ScholarPubMed
Walsh, S, O'Shea, E, Pierse, T, Kennelly, B, Keogh, F and Doherty, E (2020) Public preferences for home care services for people with dementia: a discrete choice experiment on personhood. Social Science & Medicine 245, 112675.CrossRefGoogle ScholarPubMed
Welsh Government (2018) Dementia Action Plan for Wales 2018–2022. Cardiff: Welsh Government.Google Scholar
World Health Organization (2020) Towards an Age-friendly World. Available at https://www.who.int/ageing/age-friendly-world/en/.Google Scholar
Zeiler, K (2014) A philosophical defense of the idea that we can hold each other in personhood: intercorporeal personhood in dementia care. Medicine, Health Care and Philosophy 17, 131–141.CrossRefGoogle ScholarPubMed