Quality of Life Research

, Volume 21, Issue 8, pp 1379–1389 | Cite as

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

  • Betty S. Black
  • Deirdre Johnston
  • Ann Morrison
  • Peter V. Rabins
  • Constantine G. Lyketsos
  • Quincy M. Samus
Article

Abstract

Purpose

To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development.

Methods

Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease-Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD’ QOL.

Results

Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression.

Conclusions

Correlates of QOL in community-residing PWD depend on who rates the PWD’s QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.

Keywords

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

Abbreviations

ADLs

Activities of daily living

ADRQL

Alzheimer Disease-Related Quality of Life

CAS

Caregiver Activity Survey

CSDD

Cornell Scale for Depression in Dementia

DCNA

Dementia Care Needs Assessment

DSM-IV-TR

Diagnostic and Statistical Manual Fourth Edition Text Revision

GDS

Geriatric Depression Scale

IADLs

Instrumental activities of daily living

IQCODE

Informant Questionnaire for Cognitive Disorders in the Elderly

MCI

Mild cognitive impairment

MIND at Home

Maximizing Independence at Home

MMSE

Mini Mental State Examination

NOS

Not otherwise specified

NPI-Q

Neuropsychiatric Inventory-Questionnaire

NPS

Neuropsychiatric symptoms

PGDRS

Psychogeriatric Dependency Rating Scale

PWD

Persons with dementia

QOL

Quality of life

QOL-AD

Quality of Life-Alzheimer Disease

QOL-AD_CR

Quality of Life-Alzheimer Disease_Caregiver-Rated

QOL-AD_SR

Quality of Life-Alzheimer Disease_Self-Rated

SF-12

Short Form 12 Items

TICS

Telephone Interview for Cognitive Status

ZBI

Zarit Burden Inventory

References

  1. 1.
    Wimo, A., & Prince, M. (2010). Alzheimer’s Disease International World Alzheimer Report: The global economic impact. England: London.Google Scholar
  2. 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.PubMedCrossRefGoogle Scholar
  3. 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.CrossRefGoogle Scholar
  4. 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.PubMedGoogle Scholar
  5. 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 late-stage dementia. Dementia and Geriatric Cognitive Disorders, 19(2–3), 82–85.PubMedCrossRefGoogle Scholar
  6. 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.PubMedCrossRefGoogle Scholar
  7. 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.CrossRefGoogle Scholar
  8. 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.CrossRefGoogle Scholar
  9. 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.PubMedGoogle Scholar
  10. 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.Google Scholar
  11. 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.Google Scholar
  12. 12.
    Rabins, P. V., Lyketsos, C. G., & Steele, C. D. (2006). Practical dementia care (2nd ed.). New York: Oxford University Press.Google Scholar
  13. 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.PubMedCrossRefGoogle Scholar
  14. 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.PubMedCrossRefGoogle Scholar
  15. 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.Google Scholar
  16. 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.PubMedGoogle Scholar
  17. 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.PubMedCrossRefGoogle Scholar
  18. 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.PubMedGoogle Scholar
  19. 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.PubMedGoogle Scholar
  20. 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.CrossRefGoogle Scholar
  21. 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.PubMedCrossRefGoogle Scholar
  22. 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.PubMedCrossRefGoogle Scholar
  23. 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.PubMedCrossRefGoogle Scholar
  24. 24.
    Brandt, J., Spencer, M., & Folstein, M. (1988). The Telephone Interview for Cognitive Status. Neuropsychiatry, Neuropsychology and Behavioral Neurology, 1(2), 111–117.Google Scholar
  25. 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.PubMedCrossRefGoogle Scholar
  26. 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.PubMedCrossRefGoogle Scholar
  27. 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.Google Scholar
  28. 28.
    Jorm, A. (2004). The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): A review. International Psychogeriatrics, 16(3), 275–293.PubMedCrossRefGoogle Scholar
  29. 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.PubMedCrossRefGoogle Scholar
  30. 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.PubMedCrossRefGoogle Scholar
  31. 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.PubMedCrossRefGoogle Scholar
  32. 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.PubMedCrossRefGoogle Scholar
  33. 33.
    American Psychiatric Association. (2000). Diagnostic criteria from DSM-IV-TR. Arlington, VA: American Psychiatric Association.Google Scholar
  34. 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.Google Scholar
  35. 35.
    Rabins, P., Kasper, J., Kleinman, L., Black, B., & Patrick, D. (2000). Concepts and methods in the development of the ADRQL: 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.Google Scholar
  36. 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.PubMedCrossRefGoogle Scholar
  37. 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.PubMedCrossRefGoogle Scholar
  38. 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.Google Scholar
  39. 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 caregivers of persons with Alzheimer’s disease. International Journal of Geriatric Psychiatry, 12(10), 978–988.PubMedCrossRefGoogle Scholar
  40. 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.PubMedCrossRefGoogle Scholar
  41. 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.PubMedCrossRefGoogle Scholar
  42. 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.PubMedCrossRefGoogle Scholar
  43. 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.PubMedCrossRefGoogle Scholar
  44. 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.PubMedCrossRefGoogle Scholar
  45. 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.CrossRefGoogle Scholar
  46. 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.PubMedCrossRefGoogle Scholar
  47. 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.Google Scholar
  48. 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.Google Scholar
  49. 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.PubMedCrossRefGoogle Scholar
  50. 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.PubMedCrossRefGoogle Scholar
  51. 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.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Betty S. Black
    • 1
  • Deirdre Johnston
    • 1
  • Ann Morrison
    • 2
  • Peter V. Rabins
    • 1
  • Constantine G. Lyketsos
    • 3
  • Quincy M. Samus
    • 4
  1. 1.Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreUSA
  2. 2.Dementia Care Consultation, LLCArnoldUSA
  3. 3.Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreUSA
  4. 4.Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreUSA

Personalised recommendations