Measures to assess the quality of life for people with advanced dementia: Issues in measurement and conceptualisation

Quality in Ageing and Older Adults

Volumn 5, Issue 4, 2004, Pages 29-39

  Thompson, Lauren ^a   Kingston, Paul ^a  

^a STAFFORDSHIRE UNIVERSITY   (United Kingdom)

Author keywords

Alzheimer's disease; Dementia; Measurement instruments; Older people; Quality of life; Subjective accounts

Indexed keywords

EID: 79952779592     PISSN: 14717794     EISSN: None     Source Type: Journal    
DOI: 10.1108/14717794200400022     Document Type: Review

References (38)

1. Albert SM, Castillo-Castaneda CD, Sano M, Jacobs DM, Marder K, Bell K, Bylsma F, Lafleche G, Brandt J, Albert M & Stern Y (1996) Quality of life in patients with Alzheimer's disease as reported by patient proxies. Journal of the American Geriatrics Society 44 1342-1347.
2. Alzheimer's Society (2004) Policy Positions. Available from the Alzheimer's Society Website: http://www.alzheimers.org.uk/News-and-Campaigns/ Policy-Watch/demography.htm
3. Audit Commission (2000) Forget Me Not. Mental health services for older people. London: Audit Commission.
4. Barnett E (1993) Observing Care in Detail - The DCM Method (July Newsletter). London: Alzheimer's Disease Society.
5. Beavis D, Simpson S & Graham I (2002) A literature review of dementia care mapping: methodological considerations and efficacy. Journal of Psychiatric and Mental Health Nursing 9 725-736.
6. Black BS, Rabins PV & Kapser SD (2002) ADRQL User's Manual. Baltimore, MD: Division of Geriatric Psychiatry and Neuropsychiatry, Department of Behavioural Sciences, John Hopkins School of Medicine.
7. Blau TH (1977) Quality of life, social indicators, and criteria for change. Professional Psychology: Research and Practice November 464-473.
8. Bradford Dementia Group (1997) Evaluating Dementia Care: the DCM method (7th Edition). Bradford: University of Bradford.
9. Brooker D, Foster A, Banner M, Payne M & Jackson L (1998) The efficacy of DCM as an audit tool: report of a 3-yr British evaluation. Aging and Mental Health 2 60-70.
10. Burgener S & Twigg P (2002) Relationships among caregiver factors and quality of life in care recipients with irreversible dementia. Alzheimer Disease and Associated Disorders 16 88-102.
11. Burgener S, Twigg P & Thorlton J (2002) Measuring Psychological Well-being in Cognitively Impaired Persons. Paper presented at the Gerontological Society of America, Boston, USA.
12. Burgio L & Leon J (1997) Using patient and proxy reports as outcome measures in Alzheimer disease research. Alzheimer Disease and Associated Disorders 11 179-180.
13. De Haan R, Aaronson N, Limburg M, Hewer RL & van Crevel H (1993) Measuring quality of life in stroke. Stroke 24 320-327.
14. Elam JT, Graney MJ, Beaver T, el Derwi D, Applegate WB & Miller ST (1991) Comparison of subjective ratings of function with observed functional ability of frail older persons. American Journal of Public Health 81 1127-1130.
15. Folstein MF, Folstein SE & McHugh PR (1975) 'Mini-Mental State' A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatry 12 189-198.
16. Fossey J, Lee L & Ballard C (2002) Dementia Care Mapping as a research tool for measuring Quality of Life in care setting: Psychometric properties. International Journal of Geriatric Psychiatry 17 1064-1070.
17. Gonzalez-Salvador T, Lyketsos CG, Baker A, Hovanec L, Roques C, Brandt J & Steele C (2000) Quality of life in dementia patients in long-termcare. International Journal of Geriatric Psychiatry 15 181-189.
18. Kitwood T & Bredin K (1992) A new approach to the evaluation of dementia care. Journal of Advances in Health and Nursing Care 1 (5) 41-60.
19. Knopman D (2003) Alzheimer's Disease: Clinical Picture. In: N Qizilbash, LS Schneider, H Chui, P Tariot, H Brodaty, J Kaye & T Erkinjuntti (Eds) Evidence-based Dementia Practice (pp. 237). Oxford: Blackwell Science.
20. Lawton MP (1983) The dimensions of well-being. Experimental Aging Research 9 65-72.
21. Lawton MP (1991) A multidimensional view of quality of life in frail elders. In: JE Birren & JE Lubben, JC Rowe & GE Deutchman (Eds) The Concept and Management of Quality of Life in the Frail Elderly (pp. 4-27). New York: Academic Press.
22. Lawton MP (1997) Assessing quality of life in Alzheimer disease research. Alzheimer Disease and Associated Disorders 11 91-99.
23. Lawton MP, van Haitsma K & Klapper J (1996) Observed affect in nursing home residents with Alzheimer's disease. Journals of Gerontology Series B: Psychological Sciences and Social Sciences 51 3-14.
24. Lishman WA (1998) Senile Dementias, pre-senile dementias and pseudodementias. Organic Psychiatry (3rd edition). London: Blackwell Science.
25. Logsdon RG, Gibbons LE, McCurry SM & Teri L (2002) Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine 64 510-519.
26. Logsdon RG, Gibbons LE, McCurry SM & Teri L (1999) Quality of life in Alzheimer's disease: patient and caregiver reports. Journal of Mental Health and Aging 5 21-32.
27. Logsdon RG & Teri L (1997) The Pleasant Events Schedule - AD: Psychometric properties of long and short forms and an investigation of its association to depression and cognition in Alzheimer's disease patients. The Gerontologist 37 40-45.
28. McSweeney AJ & Creer TL (1995) Health related quality of life assessment in medical care. Diseasea-Month 41 11-71.
29. Nelson LM, Longstreath WTJ, Koepsell TD & van Belle G (1990) Proxy respondents in epidemiological research. Epidemiologic Reviews 12 71-86.
30. Novella JL, Jochum C, Jolly D, Morrone I, Ankri F, Bureau F & Blanchard F (2001) Agreement between patients' and proxies' reports of quality of life in Alzheimer's disease. Quality of Life Research 10 443-452.
31. 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 & Ageing 26 99-106.
32. Rabins P (1999) Developing scales to measure effective therapeutic interventions in quality of life in Alzheimer's disease. Alzheimer Insights Online - An International Educational Newsletter 5 (4).
33. Rabins PV (2000) Measuring quality of life in persons with dementia. International Psychogeriatrics 12 47-49.
34. Rabins PV, Kapser JD, Kleinman L, Black BS & Patrick DL (1999) Concepts and methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer's Disease. Journal of Mental Health and Aging 5 33-48.
35. Teri L & Logsdon RG (1991) Identifying pleasant activities for Alzheimer's disease patients: The Pleasant Events Schedule - AD. The Gerontologist 31 124-127.
36. Walker MD, Salek SS & Bayer AJ (1998) A review of quality of life in Alzheimer's Disease. Part 1: issues in assessing disease impact. Pharmacoeconomics 14 (5) 499-530.
37. Weiner MF, Martin-Cook K, Svetlik DA, Saine K, Foster B & Fontaine CS (2000) The Quality of Life in Late-Stage Dementia (QUAL-ID) Scale. Journal of the American Medical Directors Association 1 114-116.
38. World Health Organisation (WHO) (1993) The ICD-10 Classification of Mental and Behavioural Disorders. Geneva: WHO.