Measuring psychological well-being in cognitively impaired persons

Abstract

An objective measure of psychological well-being (a previously understudied outcome for persons with dementia) was developed and tested as part of a longitudinal study (n= 96 participant pairs; n= 73 pairs remaining at 18 months). The reliability and validity of the Psychological Well-being in Cognitively Impaired Persons (PWB-CIP) scale was examined as a measure of one dimension of quality of life (QoL) as persons progress in the disease. The original 16-item PWB-CIP Likert-type scale required only five to 10 minutes to complete and was reduced to 11 items following factor analysis. Cronbach's alpha for the total scale was .79 at baseline and .82 at 18 months. Two subscales were identified: positive affect/interaction and negative affect/interaction. One item ('involved in a single activity for > five minutes') loaded on a different subscale at baseline (early disease stages) compared to 18 months (reflecting disease progression). The internal consistency of the two subscales remained acceptable across the two measurement intervals. Controlling for mental status, the PWB-CIP's construct validity was supported through significant relationships with depression, personal characteristics (personality), and the behavioral competence QoL dimensions at baseline and at 18 months. Because both rural (55%) and urban populations were sampled and the PWB-CIP was used across care settings, the findings support the PWB-CIP as a psychometrically sound measure of psychological well-being for diverse populations of persons with dementia.

Keywords

dementia disease progression objective rating scale psychometric testing quality of life

Get full access to this article

View all access options for this article.

References

Albert, S.M. , Castillo-Castanada, C. , Jacobs, D.M. , Sano, M. , Bell, K. , Merchant, C. , et al. (1999). Proxy-reported quality of life in Alzheimer's patients: Comparison of clinical and population-based samples. In S.M. Albert & R.G. Logsdon (Eds.), Assessing quality of life in Alzheimer's disease(pp. 69–80). New York: Springer Publishing Co.

Alexopoulos, G.S. , Abrams, R.C. , Young, R.C. , & Shamoian, C.A. (1988). Cornell scale for depression in dementia . Biological Psychiatry, 23, 271–284 .

Baum, C. , Edwards, D.F. , & Morrow-Howell, N. (1993). Identification and measurement of productive behaviors in senile dementia of the Alzheimer type . The Gerontologist, 33, 403–408 .

Brod, M. , Stewart, A. , Sands, L. , & Walton, P. (1999). Conceptualization of quality of life in dementia: The Dementia Quality of Life Instrument (DQoL) . The Gerontologist, 39, 25–35 .

Brod, M. , Stewart, A.L. , & Sands, L. (2000). Conceptualization of quality of life in dementia. In S.M. Albert and R.G. Logsdon (Eds.), Assessing quality of life in Alzheimer's disease(pp. 3–16). New York: Springer .

Burgener, S.C. , & Twigg, P. (2002). Relationships among caregiver factors and quality of life in care recipients with irreversible dementia . Alzheimer Disease and Related Disorders, 16(2), 88–102 .

Colling, K.B. (1999). Passive behaviors in dementia . Journal of Gerontological Nursing, 25(9), 27–32 .

Cotrell, V. , & Schulz, R. (1993). The perspective of the patient with Alzheimer's disease: A neglected dimension of dementia research . The Gerontologist, 33(2), 205–211 .

Draper, B. (1999). The diagnosis and treatment of depression in dementia . Psychiatric Services, 50, 1151–1153 .

10.

Droes, R.M. , Breebaart, E. , Ettema, T.P. , vanTilburg, W. , & Mellenbergh, G.J. (2000). Effect of integrated family support versus day care only on behavior and mood of patients with dementia . International Psychogeriatrics, 12, 99–115 .

11.

Duncan, B.A. , & Siegal, A.P. (1998). Early diagnosis and management of Alzheimer's disease . Journal of Clinical Psychiatry, 59(Suppl. 9), 15–21 .

12.

Ferrans, C.E. (1996). Development of a conceptual model of quality of life . Scholarly Inquiry for Nursing Practice: An International Journal, 10, 293–304 .

13.

Folstein, M.F. , Folstein, S. , & McHugh, P.R. (1975). Mini-mental state: A practical method for grading the cognitive status of patients for the clinician . Journal of Psychiatric Research, 12, 189–198 .

14.

Hughes, C. , Berg, L. , Danziger, W. , Coben, L. , & Martin, R. (1982). A new clinical scale for the staging of dementia . British Journal of Psychiatry, 140, 566–572 .

15.

Hurley, A.C. , Volicer, L. , Camberg, L. , Ashley, J. , Woods, P. , Odenheimer, G. , et al. (1999). Measurement of observed agitation in patients with dementia of the Alzheimer type . Journal of Mental Health & Aging, 5(2), 117–133 .

16.

Jennings, B. (2000). A life greater than the sum of its sensations: Ethics, dementia, and the quality of life. In S.M. Albert & R.G. Logsdon (Eds.), Assessing Quality of Life in Alzheimer's Disease(pp. 165–178). New York: Springer .

17.

Kane, R.A. , & Kane, R.L. (1984). Assessing the elderly. Lexington, MA: Lexington Books .

18.

Kitwood, T. (1997). Dementia reconsidered. Bristol, PA: Open University Press .

19.

Kitwood, T. , & Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being . Aging and Society, 12, 269–287 .

20.

Lawton, M.P. (1983). The dimensions of well being . Experimental Aging Research, 9, 65–72 .

21.

Lawton, M.P. (1994). Quality of life in Alzheimer disease . Alzheimer Disease and Associated Disorders, 8(Supplement 6), 138–150 .

22.

Lawton, M.P. (1997). Assessing quality of life in Alzheimer disease research . Alzheimer Disease and Associated Disorders, 11(Supplement 6), 91–99 .

23.

Lawton, M.P. , Moss, M. , Kleban, M.H. , Glicksman, A. , & Rovine, M. (1991). A two-factor model of caregiving appraisal and psychological well-being . Journal of Gerontology, 46(4), P181–P189 .

24.

Linn, B.S. , Linn, M.W. , & Gurel, L. (1968). Cumulative Illness Rating Scale . Journal of the American Geriatrics Society, 16, 622–626

25.

Logsdon, R.G. , & Albert, S.M. (1999). Assessing quality of life in Alzheimer's disease: Conceptual and methodological issues . Journal of Mental Health and Aging, 5(1), 3–6 .

26.

Logsdon, R.G. , Gibbons, L.E. , McCurry, S.M. , & Teri, L. (1999). Quality of life in Alzheimer's disease: Patient and caregiver reports . Journal of Mental Health and Aging, 5(1), 21–32 .

27.

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 .

28.

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, 40–50 .

29.

Migliorelli, R. , Teson, A. , Sabe, L. , Petracchi, M. , Leiguarda, R. , & Starkstein, S.E. (1995). Prevalence and correlates of dysthymia and major depression among patients with Alzheimer's disease . American Journal of Psychiatry, 152, 37–44 .

30.

Nunnally, J. (1978). Psychometric theory(2nd ed). New York: McGraw Hill .

31.

Perrin, T. (1997). The positive response schedule for severe dementia . Aging & Mental Health, 1(2), 184–191 .

32.

Rabins, P.V. , Kasper, J.D. , Kleinman, L. , Black, B.S. , & Patrick, D.L. (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 .

33.

Rabins, P.V. , Lyketsos, C.G. , & Steele, C. (1999). Practical dementia care. New York: Oxford University Press .

34.

Ready, R.E. , & Ott, B.R. (2003). Quality of life measures for dementia . Health and Quality of Life Outcomes, 1, 1–9 . Retrieved 12 January 2004 from www.hqlo.com/content/1/1/11.

35.

Tangalos, E.C. , & Agronin, M. (2002). New approaches to treatment of dementia: Optimizing resident function and caregiver efficiency . American Medical Directors Association Symposia, 3(4), H7–H11 .

36.

Teri, L. , & Logsdon, R.G. (1991). Identifying pleasant activities for Alzheimer's disease patients: The Pleasant Events Schedule-AD . The Gerontologist, 31, 124–127 .

37.

Uhlmann, R.F. , Larson, E.B. , & Buchner, D.M. (1987). Correlations of Mini-Mental and Modified Dementia Rating Scale to measures of transitional health status in dementia . Journals of Gerontology, 42(1), 33–36 .

38.

US Preventive Services Task Force . (2003). Screening for dementia: Recommendations and rationale . Annals of Internal Medicine, 138(11), 1–60 .

39.

Van Haitsma, K.S., Lawton, M.P., & Klapper, J. (1996). The role of personality features in dementia. Unpublished manuscript, Philadelphia Geriatric Center.

40.

Visser, P.J. , Verhey, F. , Ponds, R. , Kester, A. , & Jolles, J. (2000). Distinction between preclinical Alzheimer's disease and depression . Journal of the American Geriatrics Society, 48, 479–484 .

41.

Volicer, L. , Hurley, A. , & Camberg, L. (1999). A model of psychological well-being in advanced dementia . Journal of Mental Health and Aging, 5(1), 83–93 .

42.

Warnecke, R.B. , Ferrans, C.E. , Johnson, T.P. , Chapa-Resendez, G. , O'Rourke, D.P. , Chavez, N. , et al. (1996). Measuring quality of life in culturally diverse populations . Journal of the National Cancer Institute Monographs, 20, 29–38 .

43.

Whitehouse, P.V. (1999). Quality of life in Alzheimer's disease: Future directions . Journal of Mental Health and Aging, 5(1), 107–111 .

44.

Whitehouse, P.J. , & Rabins, P.V. (1992). Quality of life and dementia . Alzheimer Disease and Associated Disorders, 6(3), 135–137 .