This article describes how researchers, practitioners and technicians in West Sweden worked together with older people with early stage dementia and their family members to develop a user-friendly technology-based information, education and support service, based on the generic ACTION participatory design model. Ways of working in partnership with older people with early stage dementia and their family members are explored, and key lessons learned are highlighted. The overriding message is that elders with early stage dementia can be actively involved throughout the entire research and development process. Essential prerequisites are time and ongoing support by skilled practitioners and family members. Preliminary findings reveal that older people with early stage dementia can learn and benefit from user-friendly technology, especially when used together with others in a similar situation.
Acton, G., Mayhew, P., Hopkins, B., & Yauk, S. (1999). Communicating with individuals with dementia: The impaired person's perspective. Journal of Gerontological Nursing, 25(2), 6—13.
2.
Adams, T., & Page, S. (2000). New pharmacological treatments for Alzheimer's disease: Implications for dementia care nursing. Journal of Advanced Nursing, 31(5), 1183—1188.
3.
Atkinson, R. (1998). The life story interview. Sage University Papers Series on Qualitative Research Methods, 44, Thousand Oaks, CA: SAGE.
4.
Bengtsson, I. (2005). The ACTION life story programme. Unpublished bachelor thesis, Department of Computer Science, Chalmers Technical University, Gothenburg.
5.
Bird, M., & Parslow, R. (2001). Future direction. Consultancy Report to the Alzheimer's Association of Australia, http://www.alzheimers.org.au
6.
Bjørneby, S., Topo, P., Cahill, S., Begley, E., Jones K., Hagen I., et al. (2004). Ethical considerations in the ENABLE project . Dementia, 3(3), 297—312.
7.
Brown, J., Nolan, M., & Davies, S. (2003). Who's the expert? Redefining lay and professional relationships. In M. Nolan, S. Davies, & G. Grant (Eds.), Working with older people and their families (pp. 19—37). Buckingham: Open University Press.
8.
Clare, L. (1999). Memory rehabilitation in early dementia. Journal of Dementia Care, 7(6), 33—38.
9.
Clare, L., & Cox, S. (2003). Improving service approaches and outcomes for people with complex needs through consultation and involvement. Disability & Society, 18(7), 935—953.
10.
Clare, L. Wilson, B.A., Carter, G., & Hodges , J.R. (2003). Cognitive rehabilitation as a component of early intervention in Alzheimer's disease: A single case study. Aging & Mental Health, 7, 15—21.
11.
Clare, L., Wilson, B.A., Carter, G., Roth, I., & Hodges, J.R. (2002). Relearning face name associations in early Alzheimer's disease. Neuropsych, 16, 538—547.
12.
Damsby, G. and Magnusson, E. (1998). Lexia 3.0 i undervisningen — Hur fungerar det? (Lexia 3.0 in teaching — how does it work?). (In Swedish), Läs- och SkrivKonsult, Lund.
13.
Davies, S. (2003). Creating community: The basis for caring partnerships in nursing homes. In M. Nolan, U. Lundh, G. Grant & J. Keady (Eds.), Partnerships in family care: Understanding the caregiving career (pp. 218—237). Maidenhead: Open University Press.
14.
Doughty, K., & Williams, G. (2001). Practical solutions for the integration of community alarms, assistive technologies and telecare. Quality in Ageing: Policy, Practice and Research, 2(1), 31—47.
15.
Feeney Mahoney, D., Tarlow, B., & Jones, R. (2003). Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the REACH for TLC interventions study. The Gerontologist, 43(4), 556—567.
16.
Flatley-Brennan, P., Moore, S., & Symth, K. (1995). The effects of a special computer network on caregivers of persons with Alzheimer's Disease. Nursing Research,44(3), 166—172, 208—216.
17.
Goldsilver, P.M., & Gruneir, M.R. (2001). Early stage dementia group: An innovative model of support for individuals in the early stages of dementia. American Journal of Alzheimer's Disease, 13, 189—196.
18.
Goodman, C.C., & Pynoos, J. (1990). A model telephone information and support program for caregivers of Alzheimer's patients. The Gerontologist , 30(3), 399—405.
19.
Hagen, I., Holthe, T., Duff, P., Cahill, S., & Gilliard, J. (2002). A systematic assessment of assistive technology . Journal of Dementia Care, Jan/Feb, 26—28.
20.
Holthe, T., Hagen, I., & Bjørneby, S. (1999). What day is it today? Using an automatic calendar . Journal of Dementia Care, July/Aug, 26—27.
21.
Keady, J. (2004). Early diagnosis and support for people with dementia: Current developments and future challenges in dementia care research and practice . Seminar Presentation, University College of Borås & Mark municipality, Skene, 7 June 2004.
22.
Keady, J., & Nolan, M. (2003). The dynamics of dementia: Working together, working separately or working alone? In M. Nolan, U. Lundh, G. Grant, & J. Keady (Eds.), Partnerships in family care: Understanding the caregiving career (pp. 14—32). Maidenhead: Open University.
23.
LaBarge, E., & Trtanj, F. (1995). A support group for people in the early stages of dementia of the Alzheimer type. Journal of Applied Gerontology , 14(3), 289—301.
24.
Lindsey-Davies, L. (1998). Telephone-based interventions with dementia family caregivers: A feasibility study. Journal of Family Nursing , 4(3), 255—270.
25.
Magnusson, L. (2002). ACTION 2000—2002 Final Report (Swedish ACTION Project) Ministry of Social Affairs, unpublished document (in Swedish).
26.
Magnusson, L. (2005). Designing a responsive support service for family carers of frail older people using information and communication technology , doctoral thesis, Göteborg studies in Educational Sciences231, Acta Universitatis Gothoburgensis , Gothenburg.
27.
Magnusson, L., & Hanson, E. (2003). Ethical issues arising from a research, technology and development project to support frail older people and their family carers at home. Health and Social Care in the Community, 11(5), 431—439.
28.
Magnusson, L., Hanson, E., Brito, L., Berthold, H., Chambers, M., & Daly, T. (2002). Supporting family carers through the use of information technology — the EU project ACTION. International Journal of Nursing Studies, 39(4), 369—381.
29.
Magnusson, L., Hanson, E., & Nolan, M. (2005). The impact of information and communication technology on family carers of older people and professionals in Sweden. Ageing and Society, 25(5), 693—714.
30.
Magnusson, L., Hanson, E., & Savolinen, L. (2006). ACTION- Person-centred care and support via IT. From an EU project to a mainstream support service for older people with chronic illness and their carers. Final unpublished report to ITHS2, The Knowledge Foundation & Vårdal Foundation, Stockholm. (available from the first author, lennart.magnusson@hb.se).
31.
Menne, H.L., Kinney, J.M. & Morhardt, D.J. (2002). `Trying to continue to do as much as they can do' Theoretical insights regarding continuity and meaning making in the face of dementia. Dementia, 1(3), 367—382.
32.
Mills, M. (1998). Narrative identity and dementia. Aldershot: Ashgate Publishing.
33.
Milne, A., Woolford, H., Mason, J., & Hatzidimitradou, E. (2000). The early diagnosis of dementia by GPs: An exploratory study of attitudes. Aging and Mental Health, 4(4), 292—300.
34.
Moniz-Cook, E., Agar, S., Gibson, G., Win, T., & Wang, M. (1998). A preliminary study of the effects of early intervention with people with dementia and their families in a memory clinic. Aging & Mental Health, 2, 199—211.
35.
NBHWS (National Board of Health & Welfare Sweden) (2004). Family carer support in the future, will family members be willing and able to help out their elder relatives in the future? (In Swedish, English summary available.) Stockholm: NBHWS.
36.
Newell, A., & Gregor, P. (2002). Design for older and disabled people — where do we go from here?Universal Access in the Information Society,2(1), 3—7.
37.
Nielsen, J. (1994). Usability engineering. Boston, MA: AP Professional.
38.
Nolan, M.R., Ryan, T., Enderby, P., & Reid, D. (2002). Towards a more inclusive vision of dementia care practice and research. Dementia, 1(2), 193—211.
39.
Olafsdottir, M., Skoog, I. & Marcusson, J. (2000). Detection of dementia in primary care: The Linköping study. Dementia and Geriatric Cognitive Disorders,11, 223—229.
40.
Orpwood, R., Bjørnbeby, S., Hagen, I., Mäki, O., Faulkner, R., & Topo, P. (2004). User involvement in dementia product development . Dementia, 3(3), 263—280.
41.
Phinney, A. (1998) Living with dementia from the patient's perspective . Journal of Gerontological Nursing, 24(6), 8—15.
42.
Reisberg, B., & Burns, A. (1997). Diagnosis of Alzheimer's disease. International Psychogeriatrics, 9, 5—7.
43.
Russell, E., & Morgan, Jr. ( 2005). Technology greets the age wave. Gerontologist , 45(5), 704—710.
44.
Schreiber, M. (1999). Potential of an interactive computer-based training in the rehabilitation of dementia: An initial study. Neuropsychological Rehabilitation,9(2), 155—167.
45.
Seymour, J., & Ingleton, C. (1999). Ethical issues in qualitative research at the end of life. International Journal of Palliative Care Nursing , 5(2), 65—73.
46.
Sou (2003). På väg mot en god demensvård. (On the journey towards good dementia care.) (In Swedish, English summary available.)Official government publication, Fritzes Offentliga Publikationer, Stockholm.
47.
Whitten, P., Mair, F., Haycox, A., May, C., Williams, T., & Hellmich, S. (2002). Systematic review of cost effectiveness of studies of telemedicine interventions. British Medical Journal, 324, 1434—1437.
48.
Wilkinson, H. (2002). Including people with dementia in research: Methods and motivations. In H. Wilkinson (Ed.), The perspectives of people with dementia, research methods and motivation (pp. 9—24). London: Jessica Kingsley.
49.
Woolham, J., & Frisby, B. (2002). How technology can help people feel safe at home . Journal of Dementia Care, March/April, 27—29.
50.
Yale, R. (1995). Developing support groups for individuals with early-stage Alzheimer's disease: Planning, implementation and evaluation. Baltimore, MA: Health Professions Press.
51.
Zarit, S.H., Femia, E.E., Watson, J., Rice-Oeschger, L., & Kakos, B. (2004). Memory Club: A group intervention for people with early-stage dementia and their care partners. The Gerontologist, Practice Concepts, 44(2), 262—269.
