Quality of life for people with dementia: Approaches to the challenge of measurement

Ageing and Society

Volumn 19, Issue 5, 1999, Pages 561-579

  Bond, John ^a  

^a NONE

Author keywords

Dementia; Measurement; Quality of life

Indexed keywords

MENTAL HEALTH; QUALITY OF LIFE;

EID: 0032786398     PISSN: 0144686X     EISSN: None     Source Type: Journal    
DOI: 10.1017/S0144686X99007473     Document Type: Article

References (84)

1. Albert, S. M., Del Castillo-Castaneda, C., Sano, M.,Jacobs, D. M., Marder, K., Bell, K. et al. 1996. Quality of life in patients with Alzheimer's disease as reported by patient proxies. Journal of American Geriatrics Society, 44, 1342-7.
2. Avis, N. E. and Smith, K. W. 1994. Conceptual and methodological issues in selecting and developing quality of life measures. In Fitzpatrick, R., (ed), Advances in Medical Sociology, JAI Press, Greenwich, Connecticut, 255-80.
3. Bergner, M., Bobbitt, R. A. and Carter, W. B. 1981. The sickness impact profile: development and final version of a health status measure. Medical Care, 19, 787-805.
4. Bond, J. 1992. The medicalization of dementia. Journal of Aging Studies, 6, 397-403.
5. Bond, J. and Carstairs, V. 1982. Services for the elderly: a survey of the characteristics and needs of a population of 5,000 old people. Scottish Health Service Studies No. 42. Scottish Home and Health Department, Edinburgh.
6. Bond, J. and Bond, S. 1987. Development in the provision and evaluation of long-term care for dependent old people. In Fielding, P. (ed), Research in the Nursing Care of Elderly People, Wiley, London, 47-85.
7. Bond, J., Brooks, P., Carstairs, V. and Giles, L, 1980. The reliability of a survey psychiatric assessment schedule for the elderly. British Journal of Psychiatry, 137, 148-62.
8. Bond, J., Bond, S., Donaldson, C., Gregson, B. and Atkinson, A. 1989a. Evaluation of an Innovation in the continuing care of very frail elderly people. Ageing and Society, 9, 347-81.
9. Bond, J., Gregson, B. A. and Atkinson, A. 1989b. Measurement of outcomes within a multicentred randomised controlled trial in the evaluation of the experimental NHS nursing homes. Age and Ageing, 19, 292-302.
10. Bond, J., Briggs, R. and Coleman, P. 1993. The study of ageing. In Bond, J., Coleman, P. and Peace, S. (eds), Ageing in Society, An Introduction to Social Gerontology, 2nd Ed, Sage, London.
11. Bond, J., Gregson, B. A., Smith, M., Rousseau, N., Lecouturier, J. and Rodgers, H. 1998. Outcomes following acute hospital care for stroke or hip fracture: how useful is an assessment of anxiety or depression for older people? International Journal of Geriatric Psychiatry 13.
12. Bowling, A. 1991. Measuring Health. A Review of Quality of Life Measurement Scales, Open University Press, Buckingham.
13. Bowling, A. 1995. What things are important in people's lives? A survey of the public's judgements to inform scales of health related quality of life. Social Science Medicine, 41, 1447-62.
14. Bowling, A. 1996. Health care rationing: the public's debate. British Medical Journal, 312, 670-4.
15. Brazier, J., Walters, S. J., Nicholl, J. P. and Kohler, B. 1996. Using the SF-36 and Euroqol on an elderly population. Qual Life Res, 5, 195-204.
16. Brown, G. W. and Harris, T. 1978. Social Origins of Depression. A Study of Psychiatric Disorder in Women, Tavistock Publications, London.
17. Brown, G. W. and Harris, T. O. 1989. Life Events and Illness, The Guildford Press, London.
18. Brunswick, E. 1956. Perception and the Representative Design of Psychological Experiments, University California Press, Berkeley.
19. Calman, K. C. 1984. Quality of life in cancer patients - an hypothesis. Journal of Medical Ethics, 10, 124-7.
20. Coen, R., O'Mahony, D., O'Boyle, C., Joyce, C. R. B., Hiltbrunner, B., Walsh, J. B. and Coakley, D. 1993. Measuring the quality of life of dementia patients using the schedule for the evaluation of individual quality of life. The Irish Journal of Psychology, 14, 154-63.
21. Corner, L. and Bond, J. 2000. Health and social care decision-making: do older people want to participate? Submitted for publication.
22. Cornwell, J. 1984. Hard-earned Lives: Accounts of Health and Illness from East London, Tavistock, London.
23. Cumming, E. and Henry, W. E. 1961. Growing Old: the Process of Disengagement, Basic Books, New York.
24. Davies, B. and Knapp, M. 1981. Old People's Homes and the Production of Welfare, Routledge and Kegan Paul, London.
25. Davis, K. L., Thal, L. J., Gamzu, E. R., Davis, C. S., Woolson, R. F., Gracon, S. I. et al. 1992. A double-blind, placebo-controlled multicenter study of tacrine for Alzheimer's disease. The New England Journal of Medicine, 327, 1253-1259.
26. Dean, R., Proudfoot, R. and Lindesay, J. 1993. The quality interactions schedule (QUIS): development, reliability and use in the evaluation of two domus units. Journal of Geriatric Psychiatry, 8, 819-26.
27. Drummond, M., Stoddard, G. L. and Torrance, G. W. 1987. Methods for the Economic Analysis of Health Care Programmes, Oxford University Press, Oxford.
28. Entwistle, V. A., Renfrew, M. J., Yearley, S., Forrester, J. and Lamont, T. 1998. Lay perspectives: advantages for health research. British Medical Journal, 316, 463-6.
29. Evans, J. G. 1991. Aging and rationing. British Medical Journal, 303, 869-70.
30. Farquhar, M. 1994. Quality of life in older people. In Fitzpatrick, R. (ed), Advances in Medical Sociology, JAI Press inc., Greenwich, Connecticut, 139-58.
31. Fitzpatrick, R., Fletcher, A., Gore, S., Jones, D., Spiegelhalter, D. and Cox, D. 1992. Quality of life measures in health care, I : applications and issues in assessment. British Medical Journal, 305, 1074-7.
32. Fletcher, A. E., Dickinson, E. J. and Philp, I. 1992a. Review: audit measures: quality of life instruments for everyday use with elderly patients. Age and Ageing 21, 142-50.
33. Fletcher, A. E., Jones, D., Fitzpatrick, R., Spiegelhalter, D. and Cox, D. 1992b. Quality of life measures in health care. II: design, analysis, and interpretation. British Medical Journal, 305, 1145-8.
34. Foucault, M. 1973. The Birth of the Clinic, Tavistock Publications, London.
35. Froberg, D. G. and Kane, R. L. 1989. Methodology for measuring health-state preferences-II: scaling methods. Journal of Clinical Epidemiology, 42, 459-71.
36. Gaebler, H. and Hemsley, D. 1991. The assessment and short-term manipulation of affect in the severely demented. Behavioural Psychotherapy 19, 145-56.
37. Gauthier, S., Bodick, N., Erzigkeit, E., Feldman, H., Geldmacher, D. S., Huff, J. et al. 1997. Activities of daily living as an outcome measure in clinical trials of dementia drugs. Alzheimer Disease and Associated Disorders, II, 6-7.
38. George, L. K. and Bearon, L. B. 1980. Quality of Life in Older Persons. Meaning and Measurement, Human Sciences Pre., New York.
39. Gubrium,J. F. 1986. Oldtimers and Alzheimer's : the Descriptive Organization of Senility, JAI Press Inc., London.
40. Gubrium, J. F. 1987. Structuring and destructuring the course of illness: the Alzheimer's disease experience. Sociology of Health and Illness, 9, 1-24.
41. Gubrium, J. F. and Lynott, R.J. 1985. Alzheimer's disease as biographical work. In Peterson, W. A. and Quadagno, J. (eds), Social Bonds in Later Life, Sage Publications, Beverley Hills, Cali, 349-67.
42. Harris, A. I., Cox, E. and Smith, C. R. W. 1971. Handicapped and Impaired in Great Britain. Part I, HMSO, London.
43. Havighurst, R. J. 1963. Successful ageing. In Williams, RH., Tibbits, C. and Donahue, W. (eds), Processes of Ageing. Atherton, New York, 299-320.
44. Hayes, V., Morris, J., Wolfe, C. D. A. and Morgan, M. 1995. The SF-36 health survey questionnaire: is it suitable for use with older adults? Age and Ageing, 24, 120-5.
45. Higginson, I.J., Jeffreys, P.M. and Hodgson, C. S. 1997. Outcome measures for routine use in dementia services : some practical considerations. Quality in Health Care, 6, 120-4.
46. Johnson, M. 1976. That was your life: a biographical approach to later life. In Munnichs, J. M. A. and Van Den Heuvel, W.J.A. (eds), Dependency and Interdependency in Old Age, Martinus Nijhoff, The Hague.
47. Jorm, A. F., Korten, A. E. and Henderson, A. S, 1987. The prevalence of dementia: a quantitative integration of the literature. Acta Psychiatr Scand, 76, 465-79.
48. Keady, J. 1997. Maintaining involvement: a meta concept to describe the dynamics of dementia. In Marshall, M. (ed), State of the Art in Dementia Care, Centre for Policy on Ageing, London, 25-31.
49. Kind, P., Gudex, C., Dolan, P. and Williams, A. 1994. Practical and methodological issues in the development of the EUROQOL: the York experience. In Fitzpatrick, R. (ed), Advances in Medical Sociology, JAI Press, Greenwich, Connecticut, 219-53.
50. Kitwood, T. 1997a. Dementia Reconsidered: the Person Comes First, Open University Press, Buckingham.
51. Kitwood, T. 1997b. Evaluating Dementia Care: the DCM Method, 7th edn. Bradford Dementia Group, Bradford.
52. Kitwood, T. and Bredin, K. 1992. Towards a theory of dementia care: personhood and well-being. Ageing and Society, 12, 269-87.
53. Kitwood, T. and Benson, S. 1995. The New Culture, of Dementia Care, Hawker Publications, London.
54. Komesaroff, P. 1997. Concepts and measurement of quality of life in health care. Bioethics, 11, 85-6.
55. Laslett, P. 1996. A Fresh Map of Life : the Emergence of the Third Age, 2nd edn. Weidenfeld and Nicolson, London.
56. Leplege, A. and Hunt, S. 1997. The problem of quality of life in medicine. Journal of the American Medical Association, 278, 47-50.
57. Lyons, R. A., Perry, H. M. and Littlepage, B. N. C. 1994. Evidence for the validity of the short-form 36 questionnaire (SF-36) in an elderly population. Age and Ageing, 23, 182-4.
58. MacDonald, A. J. D., Craig, T. K.J. and Warner, L. A. R. 1985. The development of a short observation method for the study of the activity and contacts of old people in residential settings. Psychological Medicine, 15, 167-72.
59. Mansell, J., Felce, D., Dekock, U. and Jenkins, J. 1982, Increasing purposeful activity of severely and profoundly mentally-handicapped adults. Behav Res Ther, 20, 593-604.
60. Maynard, A. 1993. Intergenerational solidarity in health care : principles and practice. In Hobman, D. (ed), Uniting Generations. Studies in Conflict and Co-operation, Age Concern England, London.
61. Melzer, D., Pearce, K., Cooper, B. and Brayne, C. 1999. Epidemiologically based needs assessment: Alzheimer's disease and other dementias. NHS Executive, London, In press.
62. Murphy, E. 1982. Social origins of depression in old age. British Journal of Psychiatry, 141, 135-42.
63. O'Boyle, C. A., McGee, H. and Joyce, C. R. B. 1994. Quality of life: assessing the individual. In Fitzpatrick, R., (ed), Advances in Medical Sociology. JAI Press, Greenwich, Connecticut, 159-80.
64. O'Mahony, P. G., Rodgers, H., Thomson, R. G., Dobson, R. and James, O. F. W. 1998. Is the SF-36 suitable for assessing health status of older stroke patients? Age and Ageing, 27, 19-22.
65. Oliver, M. 1986. Social policy and disability: some theoretical issues. Disability, Handicap and Society, 1, 5-18.
66. Oliver, M. 1990. The Politics of Disablement, Macmillan, Basingstoke.
67. Oliver, M. 1992. Changing the social relations of research production? Disability, Handicap and Society, 7, 101-14.
68. Oliver, M. 1996. A sociology of disability or a disablist sociology? In Barton, L. (ed), Disability and Society: Emerging Issues and Insights, Longman, London, 18-42.
69. Ormel, J., Lindenberg, S., Steverink, N. and Vonkorff, M. 1997. Quality of life and social production functions: a framework for understanding health effects. Social Science and Medicine, 1-13.
70. Ostbye, T., Tyas, S., McDowell, I. and Koval, J. 1997. Reported activities of daily living: agreement between elderly subjects with and without dementia and their caregivers. Age and Ageing, 26, 99-106.
71. Parker, S. G., Peet, S. M., Jagger, C., Farhan, M. and Castleden, C. M. 1998. Measuring health status in older patients. The SF-36 in practice. Age and Ageing, 27, 13-18.
72. Patrick, D. L. and Erickson, J. 1993. Assessing health-related quality of life for clinical decision-making. In Walker, S. R. and Rosser, R. M. (eds), Quality of Life Assessment: Key Issues for the 1990s, Kluwer Academic Press, London, 11-64.
73. Patrick, D. L., Starks, H. E., Cain, K. C., Uhlmann, R. F. and Pearlman, R. A. 1994. Preferences for health states worse than death. Medical Decision Making, 14, 9-18.
74. Perrin, T. 1997. The positive response schedule for severe dementia, Aging and Mental Health, 1, 184-91.
75. Post, S. 1995. The Moral Challenge of Alzheimer's Disease, The Johns Hopkins University Press, Baltimore and London.
76. Quinton, A. 1973. The Nature of Things, Routledge, London.
77. RIS MRC CFAS (Resource Implications Study of Medical Research Council Cognitive Function and Ageing Study) 1998. Mental and physical frailty in older people: the costs and benefits of informal care. Ageing and Society, 18, 317-354.
78. Rockwood, K. 1994. Setting goals in geriatric rehabilitation and measuring their attainment. Review of Clinical Gerontology, 4, 141-9.
79. Sugarman, L. 1986. Life-span Development : Concepts, Theories and Interventions, Methuen, London.
80. Ware, J. E., Jr. and Sherbourne, C. D. 1992. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473-83.
81. Whitehouse, P. J., Orgogozo, J.-M., Becker, R. E., Gauthier, S., Pontecorvo, M., Erzigkeit, H., Rogers, S. et al. 1997. Quality-of-life assessment in dementia drug development. Alzheimer Disease and Associated Disorders, 11, 56-60.
82. Willcocks, D., Peace, S. and Kellaher, L. 1987. Private Lives in Public Places: a Researchbased Critique of Residential Life in Local Authority Old People's Homes, Tavistock, London.
83. Willoughby, J. and Keating, N. 1991. Being in control: the process of caring for a relative with Alzheimer's disease. Qualit Health Res, 1, 27-50.
84. Wood, P. H. N. 1980. The International Classification of Impairments, Disabilities and Handicaps, World Health organisation, Geneva.