Involving older people with dementia and their carers in designing computer based support systems: some methodological considerations

  • Arlene AstellEmail author
  • Norman Alm
  • Gary Gowans
  • Maggie Ellis
  • Richard Dye
  • Phillip Vaughan
Long Paper


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.


Dementia User centred design Iterative design Requirements gathering Evaluation 



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.


  1. 1.
    Abowd, G.D., Mynatt, E.D., Rodden, T.: The human experience. IEEE Pervasive Comput. 1(1), 48–57 (2002)Google Scholar
  2. 2.
    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)CrossRefGoogle Scholar
  3. 3.
    Alzheimer’s Society (2006) Facts about dementia. Available online at: (accessed 8 June 2006)
  4. 4.
    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)Google Scholar
  5. 5.
    Astell, A.J.: Personhood and technology in dementia. Q. Age. 7(1), 15–25 (2006)Google Scholar
  6. 6.
    Astell, A.J.: Personhood and technology in dementia. Psychiatr. Times XX11(13), 28–29 (2005)Google Scholar
  7. 7.
    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)Google Scholar
  8. 8.
    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)Google Scholar
  9. 9.
    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)Google Scholar
  10. 10.
    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)CrossRefGoogle Scholar
  11. 11.
    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)CrossRefGoogle Scholar
  12. 12.
    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)Google Scholar
  13. 13.
    Corkum, V., Moore, C.: The origins of joint visual attention in infants. Dev. Psychol. 34(1), 28–38 (1998)CrossRefGoogle Scholar
  14. 14.
    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)CrossRefGoogle Scholar
  15. 15.
    Emery, N.J.: The eyes have it: the neuroethology, function and evolution of social gaze. Neurosci. Biobehav. Rev. 24, 581–604 (2000)CrossRefGoogle Scholar
  16. 16.
    Flom, R., Pick, A.D.: Verbal encouragement and joint attention in 18-month old infants. Infant Behav. Dev. 26, 121–134 (2003)CrossRefGoogle Scholar
  17. 17.
    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)CrossRefGoogle Scholar
  18. 18.
    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)Google Scholar
  19. 19.
    Helander, M., Landauer, T.K., Prabhu, P. (eds.) Handbook of human–computer interaction. Elsevier, Amsterdam (1997)Google Scholar
  20. 20.
    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)Google Scholar
  21. 21.
    Holden U.P., Woods R.T.: Positive approaches to Dementia care, 3rd edn. Churchill Livingstone, Edinburgh (1995)Google Scholar
  22. 22.
    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)CrossRefGoogle Scholar
  23. 23.
    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)Google Scholar
  24. 24.
    Kitwood, T.: The dialectics of dementia: with particular reference to Alzheimer’s disease. Age Soc 10, 177–196 (1990)CrossRefGoogle Scholar
  25. 25.
    Kitwood, T.: Toward a theory of dementia care: ethics and interaction. J. Clin. Ethics 9(1), 23–34 (1998)Google Scholar
  26. 26.
    Lopez-Arrieta, J.M., Birks, J.: Nimodipine for primary degenerative, mixed and vascular dementia. Cochrane Database Syst. Rev. 3, CD000147 12137606 (2002)Google Scholar
  27. 27.
    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)CrossRefGoogle Scholar
  28. 28.
    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)CrossRefGoogle Scholar
  29. 29.
    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)Google Scholar
  30. 30.
    Mynatt, E., Rogers, W.: Developing technology to suppport the functional independence of older adults. Age. Int. 27(1):24–41 (2002)CrossRefGoogle Scholar
  31. 31.
    Nielsen J.: Usability engineering. AP Professional, Boston (1993)zbMATHGoogle Scholar
  32. 32.
    Patterson, M.L.: A sequential functional model of nonverbal exchange. Psychol. Rev. 89(3), 231–249 (1982)CrossRefGoogle Scholar
  33. 33.
    Preece J.: A guide to usability—human factors in computing. Addison Wesley and Open University, London (1994)Google Scholar
  34. 34.
    Rogoff B.: Apprenticeship in thinking: cognitive development in social context. Oxford University Press, New York (1990)Google Scholar
  35. 35.
    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)CrossRefGoogle Scholar
  36. 36.
    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)CrossRefGoogle Scholar
  37. 37.
    Shneiderman, B. (1992) Designing the user interface: strategies for effective human–computer interaction. Addison-Wesley, ReadingGoogle Scholar
  38. 38.
    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)CrossRefGoogle Scholar
  39. 39.
    Vandermaas-Peeler, M., Way, E., And Umpleby, J.: Parental guidance in a cooking activity with preschoolers. Appl. Dev. Psychol. 24, 75–89 (2003)CrossRefGoogle Scholar
  40. 40.
    Vickers, P., Banwell, L., Heaford, S., Sainz de Salces, F. (2008) Painting the ideal home. Univers. Access Inf. SocGoogle Scholar
  41. 41.
    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)CrossRefGoogle Scholar
  42. 42.
    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)Google Scholar
  43. 43.
    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)Google Scholar
  44. 44.
    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)Google Scholar
  45. 45.
    Woods, R.T.: Psychological therapies in dementia. In: Woods, R.T. (ed.) Psychological Problems of Ageing. Wiley, Chichester (1999)Google Scholar

Copyright information

© Springer-Verlag 2008

Authors and Affiliations

  • Arlene Astell
    • 1
    Email author
  • Norman Alm
    • 2
  • Gary Gowans
    • 3
  • Maggie Ellis
    • 1
  • Richard Dye
    • 2
  • Phillip Vaughan
    • 3
  1. 1.School of PsychologySt Andrews UniversityFifeUK
  2. 2.School of ComputingUniversity of DundeeDundeeUK
  3. 3.School of Design, Duncan of Jordanstone College of Art and DesignUniversity of DundeeDundeeUK

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