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From conversation to connection: a cross-case analysis of life-story work with five couples where one partner has semantic dementia

Published online by Cambridge University Press:  27 June 2018

Jackie Kindell ,
Ray Wilkinson  and
John Keady
Jackie Kindell*
Affiliation:
Pennine Care NHS Foundation Trust, Ashton-under-Lyne, UK
Ray Wilkinson
Affiliation:
Department of Human Communication Sciences, University of Sheffield, UK
John Keady
Affiliation:
Division of Nursing, Midwifery & Social Work/Greater Manchester Mental Health NHS Foundation Trust, University of Manchester, UK
*
*Corresponding author. Email: jackie.kindell@nhs.net
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Abstract

Semantic dementia causes progressive communication difficulties that significantly impact on the person and their family. There is a paucity of research examining conversation skills in this condition and associated interventions to support interaction, such as life-story work. This study used a multiple case study design to: (a) explore the everyday conversation experiences of five individuals with semantic dementia and their spouses; and (b) examine how intervention using interaction-focused life-story work could support communication needs. A total of 74 home visits were conducted over a longitudinal period. An innovative combination of conversation analysis of video and audio data alongside biographical interviewing was used. Information derived from these strands was utilised to design an individually tailored life-story intervention. Cross-case analysis examined the contribution of life-story work to interaction and other aspects of care. Results showed that a range of challenges and skills were present within conversation. Life-story work was delivered in all cases using a variety of formats and the work could be conceptualised under various points of connection: interactional, emotional, new, practical and future. Detailed assessment was important to define aims for intervention and appropriate format(s) for life-story work for the individual concerned. Outcomes for communication in this study were not solely about supporting the telling of facts about the person's life but represented a broader focus to facilitate embodied and emotional connections. This study demonstrates that creativity within life-story work is important to foster social interaction, beyond information exchange, using both verbal and non-verbal behaviours. In addition, video data show promise for exploring in-the-moment outcomes for research and practice, particularly to capture the non-verbal dimensions of this work.

Keywords

semantic dementiaconversationlife storynarrativeinteractionintervention
Type
Article
Information
Ageing & Society , Volume 39 , Issue 10 , October 2019 , pp. 2322 - 2345
Copyright
Copyright © Cambridge University Press 2018 

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References

Alzheimer's Disease International (2009) World Alzheimer's Report: The Global Prevalence of Dementia. London: Alzheimer's Disease International.Google Scholar
Bourgeois, M (1990) Enhancing conversation skills in patients with Alzheimer's disease using a prosthetic memory aid. Journal of Applied Behavior Analysis 23, 1, 29–42.Google Scholar
Bourgeois, M (1993) Effects of memory aids on the dyadic conversations of individuals with dementia. Journal of Applied Behaviour Analysis 269, 1, 77–87.Google Scholar
Bourgeois, M, Dijkstra, K, Burgio, L and Allen-Burge, R (2001) Memory aids as an augmentative and alternative communication strategy for nursing home residents with dementia. Augmentative and Alternative Communication 17, 3, 196–210.Google Scholar
British Psychological Society (2008) Conducting Research with People Not Having the Capacity to Consent to their Participation: A Practical Guide for Researchers. Leicester, UK: British Psychological Society.Google Scholar
Brooker, D (2007) Person-centred Dementia Care: Making Services Better. London: Jessica Kingsley Publishers.Google Scholar
Brown, G and Yule, G (1983) Teaching the Spoken Language: An Approach Based on the Analysis of Conversational English. Cambridge: Cambridge University Press.Google Scholar
Brown, P and Levinson, S (1987) Politeness: Some Universals in Language Usage. Cambridge: Cambridge University Press.Google Scholar
Carthery-Goulart, MT, da Costa da Silveira, A, Machado, TH, Mansur, LL, de Mattos Pimenta Parente, MA, Hosogi Senaha, ML, Dozzi Brucki, SM and Nitrini, R (2013) Nonpharmacological interventions for cognitive impairments following primary progressive aphasia: a systematic review of the literature. Dementia & Neuropsychologia 7, 1, 122–131.Google Scholar
Charmaz, KC (2006) Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. London: Sage.Google Scholar
Eastern Cognitive Disorders Clinic Australia (2014) Frontotemporal Dementia Toolkit. Available http://ecdc.org.au/ (Accessed 15 January 2016).Google Scholar
Egan, M, Berube, D, Racine, G, Leonard, C and Rochon, E (2010) Methods to enhance verbal communication between individuals with Alzheimer's Disease and their formal and informal caregivers: a systematic review. International Journal of Alzheimer's Disease. Article ID 906818.Google Scholar
Eggenberger, E, Heimerl, K and Bennett, MI (2013) Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings. International Psychogeriatrics 25, 3, 345–358.Google Scholar
Ekström, A, Ferm, U and Samuelsson, C (2017) Digital communication support and Alzheimer's disease. Dementia 16, 6, 711–731.Google Scholar
Goffman, E (1967) Interactional Ritual: Essays on Face to Face Behavior. New York: Pantheon.Google Scholar
Gorno-Tempini, ML, Hillis, AE, Weintraub, S, Kertesz, A, Mendez, M, Cappa, SF, Ogar, JM, Rohrer, JD, Black, S, Boeve, BF, Manes, F, Dronkers, NF, Vandenberghe, RMD, Rascovsky, K, Patterson, K, Miller, BL, Knopman, DS, Hodges, JR, Mesulam, MM and Grossman, M (2011) Classification of primary progressive aphasia and its variants. Neurology 76, 11, 1006–1014.Google Scholar
Gridley, K, Brooks, J, Birks, Y, Baxter, K and Parker, G (2016) Improving care for people with dementia: development and initial feasibility study for evaluation of life story work in dementia care. Health Services and Delivery Research 4, 23. doi:10.3310/hsdr04230.Google Scholar
Hamilton, HE (2008) Narrative as snapshot: glimpses into the past in Alzheimer's discourse. Narrative Inquiry 18, 1, 53–82.Google Scholar
Hansebo, G and Kihlgren, M (2000) Patient life stories and current situation as told by carers in nursing home wards. Clinical Nursing Research 9, 3, 260–279.Google Scholar
Hodges, JR and Patterson, K (2007) Semantic dementia: a unique clinicopathological syndrome. Lancet Neurology 6, 11, 1004–1014.Google Scholar
Hutchby, I and Woofitt, R (2008) Conversation Analysis. Cambridge: Polity Press.Google Scholar
Hydén, LC (2011) Narrative collaboration and scaffolding in dementia. Journal of Aging Studies 25, 4, 339–347.Google Scholar
Hydén, LC (2013) Storytelling in dementia: embodiment as a resource. Dementia 12, 3, 359–367.Google Scholar
Hydén, LC, Plejert, C, Samulesson, C and Orulv, L (2012) Feedback and common ground in conversational storytelling involving people with Alzheimer's disease. Journal of Interactional Research in Communication Disorders 4, 2, 211–247.Google Scholar
Ingersoll-Dayton, B, Spencer, B, Kwak, M, Scherrer, K, Allen, RS and Campbell, R (2013) The couples life story approach: a dyadic intervention for dementia. Journal of Gerontological Social Work 53, 3, 237–254.Google Scholar
Jefferson, G (2004) Glossary of transcript symbols with an introduction. In Lerner, G (ed.), Conversation Analysis: Studies from the First Generation. Amsterdam: John Benjamins, pp. 13–31.Google Scholar
Jokel, R, Graham, N, Leonard, C and Rochon, E (2014) Word retrieval therapies in primary progressive aphasia. Aphasiology 28, 8/9, 1038–1068.Google Scholar
Kindell, J, Burrow, S, Wilkinson, R and Keady, J (2014 a) Life story resources in dementia care: a review. Quality in Ageing and Older Adults 15, 3, 151–161.Google Scholar
Kindell, J, Keady, J, Sage, K and Wilkinson, R (2017 b) Everyday conversation in dementia: a review of the literature to inform research and practice. International Journal of Language and Communication Disorders 52, 4, 392–406.Google Scholar
Kindell, J, Sage, K and Cruice, M (2015) Supporting communication in semantic dementia: clinical consensus from expert practitioners. Quality in Ageing and Older Adults 16, 3, 153–164.Google Scholar
Kindell, J, Sage, K, Wilkinson, R and Keady, J (2014 b) Living with semantic dementia: a case study of one family's experience. Qualitative Health Research 24, 3, 401–411.Google Scholar
Kindell, J, Wilkinson, R, Sage, K and Keady, J (2017 a) Combining music and life story to enhance participation in family interaction in semantic dementia: a longitudinal study of one family's experience. Arts and Health. https://doi.org/10.1080/17533015.2017.1342269.Google Scholar
Kitwood, T (1997 a) Dementia Reconsidered: The Person Comes First. Philadelphia: Open University Press.Google Scholar
Kitwood, T (1997 b) The uniqueness of persons in dementia. In Marshall, M (ed.), State of the Art in Dementia Care. London: Centre for Policy on Ageing, pp. 36–39.Google Scholar
McKeown, J, Clarke, A and Repper, J (2006) Life story work in health and social care: systematic literature review. Journal of Advanced Nursing 55, 2, 237–247.Google Scholar
McKeown, J, Ryan, T, Button, L, Galloway, S, Wattam, M, Jepson, C and Rimmer, K (2013) Told in South Yorkshire – Life Story Work & People with Dementia. Available online at www.toldinsouthyorkshire.co.uk (Accessed 26 January 2017).Google Scholar
McKeown, J, Ryan, T and Clarke, A (2015) ‘You have to be mindful of whose story it is’: the challenges of undertaking life story work with people with dementia and their family carers. Dementia 14, 2, 238–256.Google Scholar
McPerson, A, Furniss, FG, Sdogati, C, Cesaroni, B, Tartaglini, B and Lindesay, J (2001) Effects of individualized memory aids on the conversation of persons with severe dementia: a pilot study. Aging & Mental Health 5, 3, 289–294.Google Scholar
Mental Capacity Act (2005) Code of Practice. London: The Stationery Office.Google Scholar
Moos, I and Björn, A (2006) Use of life story in the institutional care of people with dementia: a review of intervention studies. Ageing & Society 26, 3, 431–454.Google Scholar
Neary, D, Snowden, JS, Gustafson, L, Passant, U, Stuss, D, Black, S, Freedman, M, Kertesz, A, Robert, PH, Albert, M, Boone, K, Miller, BL, Cummings, J and Benson, DF (1998) Frontotemporal lobar degeneration: a consensus on clinical diagnostic criteria. Neurology 51, 6, 1546–1554.Google Scholar
Perkins, L, Whitworth, A and Lesser, R (1998) Conversing in dementia: a conversation analytic approach. Journal of Neurolinguistics 11, 1/2, 33–55.Google Scholar
Riessman, CK (2008) Narrative Methods for the Human Sciences. Sage California: Thousand Oaks.Google Scholar
Rogers, MA and Alarcon, NB (1998) Dissolution of spoken language in primary progressive aphasia. Aphasiology 12, 17, 635–650.Google Scholar
Schegloff, EA (2003) Conversation analysis and communication disorders. In Goodwin, C (ed.), Conversation and Brain Damage. Oxford: Oxford University Press, pp. 21–55.Google Scholar
Selting, M (2010) Affectivity in conversational storytelling: an analysis of displays of anger or indignation in complaint stories. Pragmatics 20, 2, 229–277.Google Scholar
Simmons-Mackie, N and Damico, J (1997) Reformulating the definition of compensatory strategies in aphasia. Aphasiology 11, 8, 761–781.Google Scholar
Snowden, J, Kindell, J and Neary, D (2006) Diagnosing semantic dementia and managing communication difficulties. In Bryan, K and Maxim, J (eds), Communication Disability in the Dementias. London: Whurr, pp. 125–146.Google Scholar
Spilkin, ML and Bethlehem, D (2003) A conversation analysis approach to facilitating communication with memory books. Advances in Speech–Language Pathology 5, 2, 105–118.Google Scholar
Subramaniamay, P, Woods, B and Whitaker, C (2014) Life review and life story books for people with mild to moderate dementia: a randomised controlled trial. Aging & Mental Health 18, 3, 363–375.Google Scholar
Wadham, O, Simpson, J, Rust, J and Murray, C (2016) Couples’ shared experiences of dementia: a meta-synthesis of the impact upon relationships and couplehood. Aging and Mental Health 20, 5, 463–473.Google Scholar
Westerhof, GJ, Bohlmeijer, E and Webster, JD (2010) Reminiscence and mental health: a review of recent progress in theory, research and interventions. Ageing & Society 30, 4, 697–721.Google Scholar
Williams, S and Keady, J (2008) Narrative research and analysis. In Watson, R, McKenna, H, Cowman, S and Keady, J (eds), Nursing Research Designs and Methods. Philadelphia: Churchill Livingstone Elsevier, pp. 331–340.Google Scholar
Woods, RT, Bruce, E, Edwards, RT, Elvish, R, Hoare, Z, Hounsome, B, Keady, J, Moniz-Cook, ED, Orgeta, V, Orrell, M, Rees, J and Russell, IT (2012) REMCARE: reminiscence groups for people with dementia and their family caregivers – effectiveness and cost-effectiveness pragmatic multicentre randomised trial. Health Technology Assessment 16, 48. https://doi.org/10.3310/hta16480Google Scholar
Yin, RK (2009) Case Study Research: Design and Methods. California: Sage.Google Scholar