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Developing a carer communication intervention to support personhood and quality of life in dementia

Published online by Cambridge University Press:  18 January 2011

TONY JOHNSTONE YOUNG ,
CHRIS MANTHORP ,
DAVID HOWELLS  and
ELLEN TULLO
TONY JOHNSTONE YOUNG*
Affiliation:
School of Education, Communication and Language Sciences, University of Newcastle, Newcastle-upon-Tyne, UK.
CHRIS MANTHORP
Affiliation:
Barchester Healthcare, London, UK.
DAVID HOWELLS
Affiliation:
Cardiff and Vale National Health Service Trust, Cardiff, UK.
ELLEN TULLO
Affiliation:
Institute of Ageing and Health, University of Newcastle, Newcastle-upon-Tyne, UK.
*
Address for correspondence: Tony Young, School of Education, Communication and Language Sciences, King George VI Building, Newcastle University, Queen Victoria Road, Newcastle upon Tyne NE1 7RU, UK. E-mail: tony.young@ncl.ac.uk
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Abstract

Dementia and dementia care present huge and growing challenges, both to individuals and to societies worldwide. In the United Kingdom, the context for the study reported here, recent key policy initiatives have highlighted problems in care provision, noting a lack of appropriate carer guidance, and an overemphasis on strictly biomedical interventions. Communication practices which support agency and empowerment have been identified as areas for particular improvement. A number of communication training and guidance packages are currently available, but these exhibit shortcomings, including a lack of user input and cross-referencing to other communications theory or to relevant empirical evidence; a lack of individualisation; and high context-specificity. In general, their uptake and level of application to care is very low. As a response, the study described here developed a new communications intervention characterised by the direct involvement of a broad spectrum of lay and professional stakeholders. This inter-group dialogue produced an agreed free-to-users, user-informed and user-relevant dementia communications toolkit (DEMTEC), which is empirically supported and adaptable to different socio-cultural and care environments. We detail the conceptual background to the toolkit, the inclusive and iterative methodology for its formulation, and how it can be used to help support ‘personhood’ and quality of life and to challenge the socially-constructed ‘othering’ of people with dementia.

Keywords

dementiacarercommunicationpersonhoodempowerment
Type
Articles
Information
Ageing & Society , Volume 31 , Issue 6 , August 2011 , pp. 1003 - 1025
Copyright
Copyright © Cambridge University Press 2011

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References

Adams, T. and Gardiner, P. 2005. Communication and interaction within dementia care triads: developing a theory for relationship-centred care. Dementia, 4, 2, 185–205.CrossRefGoogle Scholar
Alzheimer's Disease International 2009. World Alzheimer Report. Alzheimer's Disease International, London. Available online at http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf [Accessed 11 August 2010].Google Scholar
Alzheimer's Society 2010 a. A to Z of Dementia. Communicating. Alzheimer's Society, London. Available online at http://www.alzheimers.org.uk/site/scripts/services_info.php?serviceID=26 [Accessed 17 July 2010].Google Scholar
Alzheimer's Society 2010 b. Statistics. Alzheimer's Society, London. Available online at http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200120anddocumentID=341 [Accessed 17 July 2010].Google Scholar
Banerjee, S., Smith, S. C., Lamping, D. L., Harwood, R. H., Foley, B., Smith, P., Murray, J., Prince, M., Levin, E., Mann, A. and Knapp, M. 2006. Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia. Journal of Neurology, Neurosurgery and Psychiatry, 77, 2, 146–8.Google Scholar
Bayles, K. A. and Kaszniak, A. W. 1987. Communication and Cognition in Normal Aging and Dementia. College Hill/Little Brown, Boston, Massachusetts.Google Scholar
Carpiac-Claver, M. L. and Levy-Storms, L. 2007. In a manner of speaking: a qualitative analysis of verbal and non-verbal communication between nursing aides and nursing home residents. Health Communication, 22, 1, 59–67.CrossRefGoogle Scholar
Commission for Social Care Inspection (CSCI) 2008. See Me, Not Just the Dementia. Understanding People's Experiences of Living in a Care Home. CSCI (now Care Quality Commission), Newcastle-upon-Tyne, UK. Available online at http://www.cqc.org.uk/_db/_documents/Dementia%20Report-web.pdf [Accessed 16 July 2010].Google Scholar
Crisp, J. 1999. Towards a partnership in maintaining personhood. In Adams, T. and Clarke, C. (eds), Dementia Care: Developing Partnerships in Practice. Harcourt Brace, Toronto, 95–120.Google Scholar
Davis, D. H. 2004. Dementia: sociological and philosophical constructions. Social Science and Medicine, 58, 2, 369–78.Google Scholar
Department of Health and Medical Research Council 2009. Report from the Ministerial Summit on Dementia Research. Medical Research Council, London. Available online at http://www.mrc.ac.uk/consumption/idcplg?IdcService=GET_FILEanddID=24618anddDocName=MRC006472andallowInterrupt=1 [Accessed 18 July 2010].Google Scholar
Dodd, B., Worral, L. and Hickson, L. 1990. Communication: A Guide for Residential Care Staff. Australian Government Publishing Service, Canberra.Google Scholar
Done, D. J. and Thomas, J. A. 2001. Training in communication skills for informal carers of people suffering from dementia: a cluster randomized clinical trial comparing a therapist led workshop and a booklet. International Journal of Geriatric Psychiatry, 16, 8, 816–21.Google Scholar
Enderby, P. 1990. Assisting carers to communicate with patients suffering from dementia. In Stokes, G. and Goudie, F. (eds), Working with Dementia. Winslow, Bicester, UK, 128–33.Google Scholar
Fritsch, T., Kwak, J., Grant, S., Lang, J., Montgomery, R. R. and Basting, A. D. 2009. Impact of TimeSlips, a creative expression intervention program, on nursing home residents with dementia and their caregivers. The Gerontologist, 49, 1, 117–27.Google Scholar
Gibson, F. 1999. Can we risk person-centred communication? Journal of Dementia Care, 7, 5, 20–4.Google Scholar
Giles, H., and Ogay, T. 2006. Communication accommodation theory. In Whaley, B. B. and Samter, W. (eds), Explaining Communication. Contemporary Theories and Exemplars. Lawrence Erlbaum, Mahwah, New Jersey, 293–311.Google Scholar
Goldsmith, M. 1996. Hearing the Voice of People with Dementia: Opportunities and Obstacles. Jessica Kingsley, London.Google Scholar
Hairon, N. 2008. Improving Communication Skills in Care of Those with Dementia. Nursing Times Publishing, London. Available online at http://www.nursingtimes.net/nursing-practice-clinical-research/improving-communication-skills-in-care-of-those-with-dementia/1493021.article [Accessed 18 July 2010].Google ScholarPubMed
Hummert, M. L., Shaner, J. L., Garstka, T. A. and Henry, C. 1998. Communication with older adults: the influence of age stereotypes, context, and communicator age. Human Communication Research, 25, 1, 124–51.Google Scholar
Kemper, S. and Harden, T. 1999. Disentangling what is beneficial about elderspeak from what is not. Psychology and Aging, 14, 4, 656–70.Google Scholar
Kitwood, T. 1993. Discover the person, not the disease. Journal of Dementia Care, 1, 1, 16–17.Google Scholar
Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.Google Scholar
Knight, P. T. 2001. Complexity and curriculum: a process approach to curriculum-making. Teaching in Higher Education, 6, 3, 369–81.CrossRefGoogle Scholar
Kohler, S. 2004. How to Communicate with Alzheimer's. A Practical Guide and Workbook for Families. Granny's Rocker Publishing, Venice.Google Scholar
Kontos, P. C. 2004. Ethnographic reflections on selfhood, embodiment and Alzheimer's Disease. Ageing and Society, 24, 829–49.CrossRefGoogle Scholar
Koury, L. N. and Lubinski, R. 1995. Effective in-service training for staff working with communication impaired patients. In Lubinski, R. (ed.), Dementia and Communication. Singular, San Diego, California, 279–89.Google Scholar
Kruijver, I. P., Kerkstra, A., Francke, A. L., Bensing, J. M. and van de Wiel, H. B. 2000. Evaluation of communication training programs in nursing care: a review of the literature. Patient Education Counseling, 39, 1, 129–45.Google Scholar
Levy-Storms, L. 2008. Therapeutic communication training in long-term care institutions: recommendations for further research. Patient Education and Counseling, 73, 1, 8–21.Google Scholar
Lingard, L. and Kennedy, T. J. 2007. Qualitative Research in Medical Education. Association for the Study of Medical Education, Edinburgh.Google Scholar
Lubinski, R. 1995. Learned helplessness: application to communication of the elderly. In Lubinski, R. (ed.), Dementia and Communication. Singular, San Diego, California, 142–51.Google Scholar
Mace, N. L. and Rabins, P. V. 1999. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Johns Hopkins University Press, Baltimore, Maryland.Google Scholar
Magai, C., Cohen, C. I. and Gomberg, D. 2002. Impact of training dementia caregivers in sensitivity to nonverbal emotion signals. International Psychogeriatrics, 14, 1, 25–38.Google Scholar
National Audit Office 2007. Improving Services and Support for People with Dementia. National Audit Office, London. Available online at http://www.nao.org.uk/whats_new/0607/0607604.aspx [Accessed 16 July 2010].Google Scholar
National Institute for Health and Clinical Excellence (NICE) and Social Care Institute for Excellence 2006. Dementia: Supporting People with Dementia and Their Carers in Health and Social Care. NICE, London. Available online at http://www.nice.org.uk/guidance/cg42 [Accessed 17 July 2010].Google Scholar
Orange, J. B. 1995. Perspectives of family members regarding communication changes. In Lubinski, R. (ed.), Dementia and Communication. Singular, San Diego, California, 168–86.Google Scholar
Peterson, D., Berg-Weger, M., McGillick, J. and Schwartz, J. 2002. Basic care I: the effect of dementia-specific training on certified nursing assistants and other staff. American Journal of Alzheimer's Disease and Other Dementias, 17, 3, 154–64.Google Scholar
Rau, M. T. 1995. Impact on families. In Lubinski, R. (ed.), Dementia and Communication. Singular, San Diego, California, 152–67.Google Scholar
Ripich, D. N., Wykle, M. and Niles, S. 1995. Alzheimer's disease caregivers: the FOCUSED program. Geriatric Nursing, 16, 1, 15–9.CrossRefGoogle ScholarPubMed
Ripich, D. N., Ziol, E., Fritsch, T. and Durand, E. J. 2000. Training Alzheimer's disease caregivers for successful communication. Clinical Gerontologist, 21, 1, 37–56.CrossRefGoogle Scholar
Ryan, E. B., Giles, H., Bartolucci, G. and Henwood, K. 1986. Psycholinguistic and social psychological components of communication by and with the elderly. Language and Communication, 6, 1, 1–22.Google Scholar
Ryan, E. B., Meredith, S. D., MacLean, M. J. and Orange, J. B. 1995. Changing the way we talk with elders: promoting health using the communication enhancement model. International Journal of Aging and Human Development, 41, 2, 89–107.Google Scholar
Santo Pietro, M. J. and Ostuni, E. 2003. Successful Communication with Persons with Alzheimer's Disease: An In-service Manual. Butterworth Heinemann, St. Louis, Missouri.Google Scholar
Savundranayagam, M. Y., Ryan, E. B., Anas, A. P. and Orange, J. B. 2007. Communication and dementia: staff perceptions of conversational strategies. Clinical Gerontologist, 31, 2, 47–63.Google Scholar
Savundranayagam, M. Y., Ryan, E. B. and Hummert, M. L. 2007. Communication, health and ageing: promoting empowerment. In Weatherall, A., Watson, B. M. and Gallois, C. (eds), Language, Discourse and Social Psychology. Palgrave Macmillan, Basingstoke, UK, 81–107.Google Scholar
Schrinjnmaekers, V. J. J., van Rossum, E., Candel, M. J. J., Frederiks, C. M. A., Derix, M. M. A., Sielhorst, H. and van den Brandt, P. A. 2003. Effects of emotion-oriented care on work-related outcomes of professional caregivers in homes for elderly persons. Journals of Gerontology: Social Sciences, 58, 1, 50–7.CrossRefGoogle Scholar
Sherman, B. 2000. Dementia with Dignity: A Guide for Carers. McGraw-Hill, New York.Google Scholar
Sloane, P. D., Brooker, D., Cohen, L., Douglass, C., Edelman, P., Fulton, B. R., Jarrot, S., Kasayka, R., Kuhn, D., Preisser, J. S., Williams, C. S. and Zimmermann, S. 2007. Dementia care mapping as a research tool. International Journal of Geriatric Psychiatry, 22, 6, 580–9.Google Scholar
Small, J. A., Gutman, G., Makela, S. and Hillhouse, B. 2003. Effectiveness of communication strategies used by caregivers of persons with Alzheimer's disease during activities of daily living. Journal of Speech, Language and Hearing Research, 46, 2, 353–67.Google Scholar
Smith, S. C., Lamping, D. L., Banerjee, S., Harwood, R. H., Foley, B., Smith, P., Cook, J. C., Murray, J., Prince, M., Levin, E., Mann, A. and Knapp, M. 2007. Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychological Medicine, 37, 5, 737–46.Google Scholar
Smith, S. C., Murray, J., Banerjee, S., Foley, B., Cook, J. C., Lamping, D. L., Prince, M., Harwood, R. H., Levin, E. and Mann, A. 2005. What constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers. International Journal of Geriatric Psychiatry, 20, 9, 889–95.CrossRefGoogle ScholarPubMed
Sutcliffe, L. 1992. An examination of the implications of adopting a process approach to curriculum planning, implementation and evaluation. Journal of Advanced Nursing, 17, 12, 1496–502.CrossRefGoogle ScholarPubMed
Ward, R., Vass, A. A., Aggarwal, N., Garfield, C. and Cybyk, B. 2008. A different story: exploring patterns of communication in residential dementia care. Ageing and Society, 28, 629–51.CrossRefGoogle Scholar
Watson, B. M. and Gallois, C. 2004. Emotional expression as a linguistic strategy: its importance in medical interactions. In Ng, S. H., Candlin, C. N. and Chu, C. Y. (eds), Language Matters: Communication, Identity and Culture. City University of Hong Kong Press, Hong Kong, 63–84.Google Scholar
Whitehouse, P. J. and George, D. R. 2009. Banking on stories for healthier cognitive ageing. Lancet, 373, 9670, 1166–7.CrossRefGoogle ScholarPubMed
Williams, C. L., Hyer, K., Kelly, A., Leger-Krall, S. and Trappen, R. M. 2005. Development of nurse competencies to improve dementia care. Geriatric Nursing, 26, 2, 98–105.Google Scholar
Worral, L. and Hickson, L. 2003. Communication Disability in Ageing: Prevention in Intervention. Singular, San Diego, California.Google Scholar
Young, T. J. and Manthorp, C. 2009. Towards a code of practice for effective communication with people with dementing illnesses. Journal of Language and Social Psychology, 28, 2, 174–89.CrossRefGoogle Scholar
Young, T. J., Manthorp, C. and Howells, D. 2010. Communication and Dementia: New Perspectives, New Approaches. Editorial Aresta, Barcelona.Google Scholar