Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures

Quality of Life Research

Volumn 21, Issue 8, 2012, Pages 1379-1389

  Black, Betty S ^a   Johnston, Deirdre ^a   Morrison, Ann ^b   Rabins, Peter V ^a   Lyketsos, Constantine G ^a   Samus, Quincy M ^a  

^a JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b Dementia Care Consultation LLC   (United States)

Author keywords

Caregivers; Community based participatory research; Dementia; Health services needs and demands; Quality of life

Indexed keywords

ADAPTIVE BEHAVIOR; AGED; ARTICLE; CAREGIVER; CONTROLLED CLINICAL TRIAL; CONTROLLED STUDY; DAILY LIFE ACTIVITY; DEMENTIA; DEMOGRAPHY; FEMALE; HEALTH CARE DELIVERY; HEALTH SERVICE; HUMAN; MALE; MENTAL STRESS; PARTICIPATORY RESEARCH; PHASE 2 CLINICAL TRIAL; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIAL; SELF REPORT; STATISTICAL MODEL;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; AGED, 80 AND OVER; CAREGIVERS; COMMUNITY-BASED PARTICIPATORY RESEARCH; DEMENTIA; FEMALE; HEALTH SERVICES ACCESSIBILITY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; LINEAR MODELS; MALE; PSYCHOMETRICS; QUALITY OF LIFE; RESIDENCE CHARACTERISTICS; SELF REPORT; STRESS, PSYCHOLOGICAL;

EID: 84867069685     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-011-0044-z     Document Type: Article

References (51)

1. Wimo, A., & Prince, M. (2010). Alzheimer's Disease International World Alzheimer Report: The global economic impact. England: London.
2. Takeda, A., Loveman, E., Clegg, A., Kirby, J., Picot, J., Payne, E., et al. (2006). A systematic review of the clinical effectiveness of donepezil, rivastigmine and galantamine on cognition, quality of life and adverse events in Alzheimer's disease. International Journal of Geriatric Psychiatry, 21(1), 17-28.
3. Callahan, C. M., Boustani, M. A., Unverzagt, F. W., Austrom, M. G., Damush, T. M., Perkins, A. J., et al. (2006). Effectiveness of collaborative care for older adults with Alzheimer disease in primary care. The Journal of the American Medical Association, 295(18), 2148-2157.
4. Vickrey, B. G., Mittman, B. S., Connor, K. I., Pearson, M. L., Della Penna, R. D., Ganiat, T. G., et al. (2006). The effect of a disease management intervention on quality and outcomes of dementia care. Annals of Internal Medicine, 145, 713-726.
5. Martin-Cook, K., Hynan, L. S., Rice-Koch, K., Svetlikk, D. A., & Weiner, M. F. (2005). Responsiveness of the quality of life in late-stage dementia scale to psychotropic drug treatment in latestage dementia. Dementia and Geriatric Cognitive Disorders, 19(2-3), 82-85.
6. Dooley, N., & Hinojosa, J. (2004). Improving quality of life for persons with Alzheimer's disease and their family caregivers: Brief occupational therapy intervention. American Journal of Occupational Therapy, 58(5), 561-569.
7. Graff, M., Vernooij-Dassen, M., Thijssen, M., Dekker, J., Hoefnagels, W., & Olderikkert, M. (2007). Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial. Journals of Gerontology: Series A, Biological Sciences and Medical Sciences, 62(9), 1002-1009.
8. Gitlin, L. N., Winder, L., Dennis, M. P., Hodgson, N., & Hauck, W. W. (2010). A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers. The Journal of the American Medical Association, 304(9), 983-991.
9. Rabins, P. V., & Kasper, J. D. (1997). Measuring quality of life in dementia: Conceptual and practical issues. Alzheimer Disease and Associated Disorders, 11(6), 100-104.
10. Patrick, D. L., & Erickson, P. (1993). Concepts of health-related quality of life. In D. L. Patrick & P. Erickson (Eds.), Health status and health policy (pp. 76-112). New York: Oxford University Press.
11. Black, B. S., & Rabins, P. V. (2010). Quality of life in dementia: Conceptual and practical issues. In D. Ames, A. Burns, & J. O'Brien (Eds.), Dementia (4th ed., pp. 293-304). London, England: Hodder Arnold.
12. Rabins, P. V., Lyketsos, C. G., & Steele, C. D. (2006). Practical dementia care (2nd ed.). New York: Oxford University Press.
13. Logsdon, R.G., & Teri, L. (1997). The pleasant events schedule-AD: Psychometric properties and relationship to depression and cognition in Alzheimer's disease patients. The Gerontologist, 37, 40-45.
14. Brod, M., Stewart, A. L., Sands, L., & Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: The Dementia Quality of Life Instrument (DQoL). The Gerontologist, 39(1), 25-35.
15. Logsdon, R., Gibbons, L., & McCurry, S. (2000). Quality of life in Alzheimer's disease patients. In S. Albert & R. Logsdon (Eds.), Assessing quality of life in Alzheimer's disease. New York: Springer Publishing Company.
16. James, B., Xie, S., & Karlawish, J. (2005). How do patients with Alzheimer disease rate their overall quality of life? American Journal of Geriatric Psychiatry, 13, 484-490.
17. Banerjee, S., Samsi, K., Petrie, C. D., Alvir, J., Treglia, M., Schwam, E. M., et al. (2009). What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. International Journal of Geriatric Psychiatry, 24, 15-24.
18. Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510-519.
19. Snow, A., Dani, R., Souchek, J., Sullivan, G., Ashton, C., & Kunik, M. (2005). Comorbid psychosocial symptoms and quality of life in patients with dementia. American Journal of Geriatric Psychiatry, 13, 393-401.
20. Banerjee, S., Smith, S., Lamping, D., Harwood, R., Foley, B., Smith, P., et al. (2006). Quality of life in dementia: More than just cognition. An analysis of associations with quality of life in dementia. Journal of Neurology, Neurosurgery and Psychiatry, 77, 146-148.
21. Karlawish, J., Zbrozek, A., Kinosian, B., Gregory, A., Ferguson, A., Low, D., et al. (2008). Caregivers' assessments of preference-based quality of life in Alzheimer's disease. Alzheimers Dement, 4(3), 203-211.
22. Conde-Sala, J. L., Garre-Olmo, J., Turro-Garriga, O., Lopez-Pousa, S., & Vilalta-Franch, J. (2009). Factors related to perceived quality of life in patients with Alzheimer's disease: The patient's perception compared with that of caregivers. International Journal of Geriatric Psychiatry, 24, 585-594.
23. Mougias, A. A., Politis, A., Lyketsos, C. G., & Mavreas, V. G. (2011). Quality of life in dementia patients in Athens, Greece: Predictive factors and the role of caregiver-related factors. International Psychogeriatrics, 23(3), 395-403.
24. Brandt, J., Spencer, M., & Folstein, M. (1988). The Telephone Interview for Cognitive Status. Neuropsychiatry, Neuropsychology and Behavioral Neurology, 1(2), 111-117.
25. Jorm, A., & Jacomb, P. (1989). The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): Socio-demographic correlates, reliability, validity and some norms. Psychological Medicine, 19, 1015-1022.
26. Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). Mini mental state: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.
27. Ferrucci, L., Del Lungo, I., Guralnick, J., Bandinelli, S., Benvenuti, E., Salani, B., et al. (1998). Is the Telephone Interview for Cognitive Status a valid alternative in persons who cannot be evaluated by the Mini Mental State Examination? Aging (Milano), 10(4), 332-338.
28. Jorm, A. (2004). The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): A review. International Psychogeriatrics, 16(3), 275-293.
29. Lawton, M. P., & Brody, E. M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 9, 179-186.
30. Wilkinson, I. M., & Graham-White, J. (1980). Psychogeriatric Dependency Rating Scales (PGDRS): A method of assessment for use by nurses. British Journal of Psychiatry, 137, 558-565.
31. Cummings, J. L., Mega, M., Gray, K., Rosenburg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The Neuropsychiatric Inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308-2314.
32. Alexopoulos, G. A., Abrams, R. C., Young, R. C., & Shamoian, C. A. (1988). Cornell Scale for Depression in Dementia. Biological Psychiatry, 23, 271-284.
33. American Psychiatric Association. (2000). Diagnostic criteria from DSM-IV-TR. Arlington, VA: American Psychiatric Association.
34. Black, B., Johnston, D., Handel, S., Morrison, A., Robbins, B., Rye, R., et al. (2008). Manual for the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). MD: Baltimore.
35. Rabins, P., Kasper, J., Kleinman, L., Black, B., & Patrick, D. (2000). Concepts and methods in the development of the AD-RQL: An instrument for assessing health-related quality of life in persons with Alzheimer's disease. In A. Albert & R. Logsdon (Eds.), Assessing quality of life in Alzheimer's disease (pp. 51-68). New York: Springer.
36. Kasper, J. D., Black, B. S., Shore, A. D., & Rabins, P. V. (2009). Evaluation of the validity and reliability of the Alzheimer Disease-related Quality of Life instrument. Alzheimer Disease and Associated Disorders, 23(3), 275-284.
37. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649-655.
38. Sheikh, J. I., & Yesavage, J. A. (1986). Geriatric Depression Scale (GDS): Recent evidence and development of a shorter version. Clinical Gerontologist, 5(1/2), 165-173.
39. Davis, K. L., Marin, D. B., Kane, R., Patrick, D., Peskind, E. R., Raskind, M. A., et al. (1997). The Caregiver Activity Survey (CAS): Development and validation of a new measure for care-givers of persons with Alzheimer's disease. International Journal of Geriatric Psychiatry, 12(10), 978-988.
40. Ware, J. E., Kosinski, M., & Keller, S. D. (1996). A 12-item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220-233.
41. Trigg, R., Watts, S., Jones, R., & Tod, A. (2011). Predictors of quality of life ratings from persons with dementia: The role of insight. International Journal of Geriatric Psychiatry, 26, 83-91.
42. Huang, H.-L., Chang, M. Y., Tang, J. S.-H., Chiu, Y.-C., & Weng, L.-C. (2008). Determinants of the discrepancy in patient-and caregiver-rated quality of life for persons with dementia. Journal of Clinical Nursing, 18, 3107-3117.
43. Smith, S., Murray, J., Banerjee, S., Foley, B., Cook, J., Lamping, D., et al. (2005). What constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers. International Journal of Geriatric Psychiatry, 20(9), 889-895.
44. Mohamed, S., Rosenheck, R., Lyketsos, C., & Schneider, L. (2010). Caregiver burden in Alzheimer disease: Cross-sectional and longitudinal patient correlates. American Journal of Geriatric Psychiatry, 18(10), 917-927.
45. Samus, Q., Rosenblatt, A., Onyike, C., Steele, C., Baker, A., Harper, M., et al. (2006). Correlates of caregiver-rated quality of life in assisted living: The Maryland Assisted Living study. Journals of Gerontology: Series B, Psychological Sciences and Social Sciences, 61(5), P311-P314.
46. Hurt, C., Bhattacharyya, S., Burns, A., Camus, V., Liperoti, R., Marriott, A., et al. (2008). Patient and caregiver perspectives of quality of life in dementia. Dementia and Geriatric Cognitive Disorders, 26, 138-146.
47. Livingston, G., & Cooper, C. (2010). Non-pharmacological therapies to manage behavioural and psychological symptoms of dementia: What works and what doesn't. In D. Ames, A. Burns, & J. O'Brien (Eds.), Dementia (4th ed., pp. 214-220). London, England: Hodder Arnold.
48. Burke, A., & Tariot, P. N. (2010). Drug treatments for the behavioural and psychiatric symptoms of dementia. In D. Ames, A. Burns, & J. O'Brien (Eds.), Dementia (pp. 231-252). London, England: Hodder Arnold.
49. Edelman, P., Fulton, B. R., Kuhn, D., & Chang, C.-H. (2005). A comparison of three methods of measuring dementia-specific quality of life: Perspectives of residents, staff, and observers. The Gerontologist, 45(1), 27-36.
50. Cordner, Z., Blass, D. M., Rabins, P. V., & Black, B. S. (2010). Quality of life in nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 58(12), 2394-2400.
51. Orrell, M., Hancock, G., Hoe, J., Woods, B., Livingston, G., & Challis, D. (2007). A cluster randomised controlled trial to reduce the unmet needs of people with dementia living in residential care. International Journal of Geriatric Psychiatry, 22, 1127-1134.