‘I Know Where this is Going and I Know it won’t Go Back’

Abstract

While it is generally agreed that any appraisal of quality of life should as far as possible rely on the individual’s own perspective, having people with dementia evaluate their own quality of life remains a much-debated issue. This article reports findings from a longitudinal study (ENABLE) designed to examine the impact of assistive technology on persons with dementia and their family caregivers. The study’s methodology sought to empower people with dementia by engaging them in the research process. Both quantitative and qualitative data on quality of life were collected from a sample of 92 persons with dementia before and after assistive technologies were introduced into their homes. This article presents preliminary baseline data on quality of life prior to when the home interventions (technologies) were introduced. Results demonstrate that people with dementia can competently participate in research on dementia and have more positive appraisals of their lives, roles and relationships than might be expected.

Keywords

assessment scales ill-being self-report technology well-being

Get full access to this article

View all access options for this article.

References

Bond, J. (1999). Quality of life for people with dementia: Approaches to the challenge of measurement . Ageing and Society, 19(5), 561-579 .

Brod, M. , Stewart, A. , Sands, L. , & Walton, P. (1999). Conceptualisation and measurement of quality of life in dementia: The Dementia Quality of Life instrument (DQoL) . Gerontologist, 39(1), 25-35 .

Cheston, R. , & Bender, M. (1999). Understanding dementia: The man with the worried eyes. London: Jessica Kingsley .

Clavarino, A. (1997). Dying from experience: A longitudinal study of the quality of life of patients with metastatic, incurable cancer. PhD Dissertation, Department of Anthropology and Sociology, University of Queensland, Brisbane, Australia.

Farquhar, M. (1994). Quality of life in older people. In R. Fitzpatrick (Ed.), Advance in medical sociology (pp. 139-158). Greenwich, CT: JAI Press .

Goldsmith, M. (1996). Hearing the voice of people with dementia:Opportunities and obstacles. London: Jessica Kingsley .

Greene, J.G. , Smith, R. , Gardiner, M. , & Timbury, G.C. (1982). Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: A factor analytic study . Age and Ageing, 11(2), 121-126 .

Keady, J. , Nolan, M. , & Gilliard, J. (1995). Listen to the voices of experience . Journal of Dementia Care, 3(3), 15-17 .

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press .

10.

Logsdon, R. , Givvons, L. , McCurry, S & Teri, L (1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports . Journal of Mental Health and Ageing, 5(1), 21-32 .

11.

Ostbye, T. , Tyas, S. , McDowell, I. , & Koval, J. (1997). Reported activities of daily living: Agreement between elderly subjects with and without dementia and their caregivers . Age and Ageing, 26(2), 99-106 .

12.

Thorgrimsen, L. , Selwood, A. , Spector, A. , Royan, L. , Madariaga Lopez, M. , Woods, R.T. , & Orrell, M. (2003). Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer’s Disease (QoL-AD) scale . Alzheimer’s Disease and Associated Disorders, 17(4), 201-208 .

13.

Walker, M. , Salek, S. , & Bayer, A. (1998). A review of quality of life in Alzheimer’s disease: Issues in assessing disease impact . Pharmacoeconomics, 14(5), 499-530 .