Abstract
Older people with dementia are a particularly challenging user group to involve in the process of designing interactive systems that could assist them. It may also be difficult to involve family caregivers of people with dementia, as they are most likely to be older themselves and uncertain about technology. Paid care staff, whilst younger, may be unclear about the benefits of technology and lack confidence in their ability to incorporate it into their work. Over the past 7 years, the authors of this paper have worked closely with people with dementia, their families and professional care staff to develop and evaluate a multimedia computer system to support communication between people with dementia and caregivers. To achieve this, a number of user involvement issues were addressed, ranging from legal and ethical considerations of working with people with dementia to the reluctance of hard-pressed staff to add to their workload for a research project. In addition, developing and conducting evaluations and eliciting the views of people with dementia who have working memory impairment plus additional cognitive and social difficulties emerged as a central issue. A variety of approaches were explored within this project, which are described in this paper, including familiarizing the whole team with the unique difficulties posed by dementia, continuous confirmation of participants’ consent, and ways to measure enjoyment, engagement, and joint interaction using observation.
Similar content being viewed by others
References
Abowd, G.D., Mynatt, E.D., Rodden, T.: The human experience. IEEE Pervasive Comput. 1(1), 48–57 (2002)
Alm, N., Ellis, M., Astell, A., Dye, R., Gowans, G., Campbell, J.: A cognitive prosthesis and communication support for people with dementia. Neuropsychol. Rehabil. 14(1/2), 117–134 (2004)
Alzheimer’s Society (2006) Facts about dementia. Available online at: http://www.alzheimers.org.uk/Facts_about_dementia/Statistics/index.htm. (accessed 8 June 2006)
Arnott, J., Alm, N., Waller, A.: Cognitive prostheses: communication, rehabilitation and beyond. In: Proceedings of IEEE Systems Man and Cybernetics Conference, Tokyo (New York: IEEE), Part VI, pp. 346–351 (1999)
Astell, A.J.: Personhood and technology in dementia. Q. Age. 7(1), 15–25 (2006)
Astell, A.J.: Personhood and technology in dementia. Psychiatr. Times XX11(13), 28–29 (2005)
Astell, A.J., Ellis, M., Alm, N., Campbell, J., Dye, R., Gowans, G.: Autobiographical significance and conceptual knowledge in Alzheimer’s disease. J. Cogn. Neurosci. Suppl. 127 (2005)
Astell, A.J., Ellis, M.P., Alm., N., Dye, R., Gowans, G., Vaughn, P.: Living in the moment: developing an interactive multimedia activity system for elderly people with dementia. In: Proceedings of the International Workshop on Cognitive Prostheses and Assisted Communication (CPAC 2006), 29 January 2006, Sydney, Australia. ACM, New York, pp. 16–20 (2006)
Astell, A.J., Ellis, M., Alm, N., Dye, R., Gowans, G., Campbell, J.: Using hypermedia to support communication in Alzheimer’s disease: the CIRCA project. In: Schmorrow, D. (ed.) Foundations of augmented cognition pp. 758–767. Lawrence Erlbaum, New Jersey (2005)
Astrom, S., Nilsson, M., Norberg, A., Sandman, P.O., Winblad, B.: Staff burnout in dementia care—relations to empathy and attitudes. Int. J. Nurs. Stud. 28(1), 65–75 (1991)
Baines, S., Saxby, P., Ehlert, K.: Reality orientation and reminiscence therapy: a controlled cross-over study of elderly confused people. Br. J. Psychiatry 151, 222–231 (1987)
Butterworth, G.: Theory of mind, the facts of embodiment. In: Lewis, C., Mitchell, P. (eds.) Children’s early understanding of mind: origins and development. Lawrence Erlbaum Associates, Hove (1994)
Corkum, V., Moore, C.: The origins of joint visual attention in infants. Dev. Psychol. 34(1), 28–38 (1998)
Eisma, R., Dickinson, A., Goodman, J., Syme, A., Tiwari, L., Newell, A.F.: Early user involvement in the development of information technology related products for older people. Int. J. Univers. Access Inf. Soc. 3(2), 131–140 (2004)
Emery, N.J.: The eyes have it: the neuroethology, function and evolution of social gaze. Neurosci. Biobehav. Rev. 24, 581–604 (2000)
Flom, R., Pick, A.D.: Verbal encouragement and joint attention in 18-month old infants. Infant Behav. Dev. 26, 121–134 (2003)
Folstein, M.F., Folstein, S.E., Mchugh, P.R.: Mini-mental state—a practical method for grading the cognitive state of patients for the clinician. J. Psychiatry 12, 189–198 (1975)
Greenfield, P.M.: A theory of the teacher in the learning activities of daily life. In: Rogoff, B., Lave, J. (eds.) Everyday Cognition: Its Development in Social Context. Harvard University Press, Cambridge (1984)
Helander, M., Landauer, T.K., Prabhu, P. (eds.) Handbook of human–computer interaction. Elsevier, Amsterdam (1997)
Hine, N., Judson, A., Ashraf, S., Arnott, J., Sixsmith, A., Brown, S., Garner, P.: Modelling the behaviour of elderly people as a means of monitoring well being. In: Ardissono, L., Brna, P., Mitrovic, A. (eds.) Proceedings of the 10th International Conference on User Modelling UM 2005, Edinburgh, Scotland, (Berlin: Springer), pp. 241–250 (2005)
Holden U.P., Woods R.T.: Positive approaches to Dementia care, 3rd edn. Churchill Livingstone, Edinburgh (1995)
Husted, J.T., Raver, C.C.: Scaffolding in low-income mother–child dyads: relations with joint attention and dyadic reciprocity. Int. J. Behav. Dev. 26(2), 113–119 (2002)
Kautz, H., Arnstein, L., Borriello, G., Etzioni, O., Fox, D.: An overview of the assisted cognition project. In: AAAI-2002 workshop on automation as caregiver: the role of intelligent technology in elder care. Edmonton, Alberta (2002)
Kitwood, T.: The dialectics of dementia: with particular reference to Alzheimer’s disease. Age Soc 10, 177–196 (1990)
Kitwood, T.: Toward a theory of dementia care: ethics and interaction. J. Clin. Ethics 9(1), 23–34 (1998)
Lopez-Arrieta, J.M., Birks, J.: Nimodipine for primary degenerative, mixed and vascular dementia. Cochrane Database Syst. Rev. 3, CD000147 12137606 (2002)
McKenna, S., Nait-Charif, H.: Summarising contextual activity and detecting unusual inactivity in a supportive home environment. Pattern Anal. Appl. 7(4), 386–401 (2004)
McKenna, S., Marquis-Faulkes, F., Newell, A.F., Gregor, P.: Requirements gathering using drama for computer vision based monitoring in supportive home environments. Int. Soc. Gerontechnol. 5(1), 29–45 (2006)
Melenhorst, A., Rogers, W., Caylor, E.: The use of communication technologies by older adults: exploring the befits from the user’s perspective. In: Proceedings of the human factors and ergonomics society 45th annual meeting, pp 221–225 (2001)
Mynatt, E., Rogers, W.: Developing technology to suppport the functional independence of older adults. Age. Int. 27(1):24–41 (2002)
Nielsen J.: Usability engineering. AP Professional, Boston (1993)
Patterson, M.L.: A sequential functional model of nonverbal exchange. Psychol. Rev. 89(3), 231–249 (1982)
Preece J.: A guide to usability—human factors in computing. Addison Wesley and Open University, London (1994)
Rogoff B.: Apprenticeship in thinking: cognitive development in social context. Oxford University Press, New York (1990)
Rogoff, B., Ellis, S., Gardner, W.: The adjustment of adult-child instruction according to the child’s age and task. Dev. Psychol. 20, 193–199 (1984)
Sagar, H.J., Cohen, N.J., Sullivan, E.V., Corkin., S., Growdon, J.H.: Remote memory functions in Alzheimer’s disease and Parkinson’s disease. Brain 111(1):185–206 (1988)
Shneiderman, B. (1992) Designing the user interface: strategies for effective human–computer interaction. Addison-Wesley, Reading
Sloan, D.: Two cultures? The disconnect between the web standards movement and research-based web design guidelines for older people. Gerontechnology 5(2):106–111 (2006)
Vandermaas-Peeler, M., Way, E., And Umpleby, J.: Parental guidance in a cooking activity with preschoolers. Appl. Dev. Psychol. 24, 75–89 (2003)
Vickers, P., Banwell, L., Heaford, S., Sainz de Salces, F. (2008) Painting the ideal home. Univers. Access Inf. Soc
Wimo, A., Winblad, B., Aguero-Torres, H., Von Strauss, E.: The magnitude of dementia occurrence in the world. Alzheimer Dis. Assoc. Disord. 17(2), 63–67 (2003)
Winzelberg, G.S., Williams, C.S., Preisser, J.S., Zimmerman, S., Sloane, P.D.: Factors associated with nursing assistant quality-of-life ratings for residents with dementia in long-term care facilities. Gerontologist 45, 106–114 (2005)
Wood, D.J.: Teaching young children: some relationships between social interaction, language, and thought. In: Olson, D.R. (ed.) The Social Foundation of Language and Thought. W. W. Norton, New York (1980)
Wood, D.J.: Teaching the young child: some relationships between social interaction, language and thought. In: Lloyd, P., Fernyhough, C. (eds.) Lev Vygotsky: Critical Assessments. The Zone of Proximal Development. Routledge, New York (1999)
Woods, R.T.: Psychological therapies in dementia. In: Woods, R.T. (ed.) Psychological Problems of Ageing. Wiley, Chichester (1999)
Acknowledgments
We are grateful for the encouragement, support, and participation in this work by Alzheimer Scotland, City of Dundee Social Work Department, and in particular the Whitfield and Oakland Day Centres. A particular thank you is due to all the people with dementia and their families and carers who work with us. Funding for this research was provided by the Engineering and Physical Sciences Research Council; The Royal Society of Edinburgh; Lloyds TSB Foundation for Scotland; The Japanese Rehabilitation Society; and the Advanced Telecommunications Research Institute, Kyoto, Japan.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Astell, A., Alm, N., Gowans, G. et al. Involving older people with dementia and their carers in designing computer based support systems: some methodological considerations. Univ Access Inf Soc 8, 49–58 (2009). https://doi.org/10.1007/s10209-008-0129-9
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10209-008-0129-9