Measuring perceived stigma in persons with progressive neurological disease: Alzheimer's dementia and Parkinson's disease

Dementia

Volumn 7, Issue 1, 2008, Pages 31-53

  Burgener, Sandy C ^a   Berger, Barbara ^b  

^a UNIVERSITY OF ILLINOIS AT URBANA CHAMPAIGN   (United States)

^b UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

Author keywords

Caregiver perceptions; Cognitive disorders; Elderly; Measurement; Self perceptions

Indexed keywords

EID: 38549181035     PISSN: 14713012     EISSN: 17412684     Source Type: Journal    
DOI: 10.1177/1471301207085366     Document Type: Article

References (58)

1. Ahlskog, J.E., & Muenter, M.D. (2001). Frequency of levodopa-related dyskinesias and motor fluctuations estimated from the cumulative literature. Movement Disorders, 16, 448-458.
2. American Psychiatric Association. (1997). Practice guideline for the treatment of patients with Alzheimer's disease and other dementias of late life. American Journal of Psychiatry, 154 (Supplement 5S), 1-39.
3. Benbow, S.M., & Reynolds, D. (2000). Challenging the stigma of Alzheimer's disease. Hospital Medicine, 61 (3), 174-177.
4. Bloom, B.S., de Pouvourville, N., & Straus, W.L. (2003). Cost of illness of Alzheimer's disease: How useful are current estimates? The Gerontologist, 43 (2), 158-164.
5. Burgener, S.C. (1999 a). Care decisions in irreversible dementia: Who speaks for the patient? Journal of Gerontological Nursing, 25 (8), 53-55.
6. Burgener, S.C. (1999 b). Predicting quality of life in caregivers of Alzheimer's patients: The role of support from and involvement with the religious community. Journal of Pastoral Care, 53 (4), 433-446.
7. Burgener, S.C., & Dickerson-Putman, J. (1999). Assessing the patient in the early stages of irreversible dementia: The relevance of patient perspectives. Journal of Gerontological Nursing, 25 (2), 33-41.
8. Burgener, S.C., & Twigg, P. (2002). Relationships among caregiver factors and quality of life in care recipients with irreversible dementia. Journal of Alzheimer's Disease and Related Disorders, 16 (2), 88-102.
9. Burgener, S.C., Twigg, P., & Popovich, A. (2005). Measuring psychological well being in cognitively impaired persons. Dementia: The International Journal of Social Research and Practice, 4 (4), 463-485.
10. Clare, L., Marková, I., Verhey, F., & Kenny, G. (2005). Awareness in dementia: A review of assessment methods and measures. Aging & Mental Health, 9 (5), 394-413.
11. Clare, L., & Wilson, B.A. (2006). Longitudinal assessment of awareness in early-stage Alzheimer's disease using comparable questionnaire-based and performance-based measures: A prospective one-year follow-up study. Aging & Mental Health, 10 (2), 156-165.
12. Clarke, J. (2005). Adverse factors and the mental health of older people: Implications for social policy and professional practice. Journal of Psychiatric and Mental Health Nursing, 12, 290-296.
13. Crisp, A.H., Gelder, M.G., Rix, S., Meltzer, H.I., & Rowlands, O.J. (2000). Stigmatisation of people with mental illnesses. British Journal of Psychiatry, 177, 4-7.
14. Cumming, J., & Cumming, E. (1965). On the stigma of mental illness. Community Mental Health Journal, 1, 135-143.
15. Dashiell, J., & Kirk, T. (1989). Alzheimer's disease: A current perspective. Caring, 8, 5-10.
16. Depla, M.F., de Graaf, R., van Weeghel, J., & Heeren, T.J. (2005). The role of stigma in the quality of life of older adults with severe mental illness. International Journal of Geriatric Psychiatry, 20, 146-153.
17. Evans, L., Funkenstein, H.H., Albert, M.S., Scherr, P.A., Cook, N.R., Chown, M.J., et al. (1989). Prevalence of Alzheimer's disease in a community population: Higher than previously reported. Journal of the American Medical Association, 262, 2552-2556.
18. Falk, G. (2001). Stigma: How we treat outsiders. Amherst, NY: Prometheus Books.
19. Fife, B.L., & Wright, E.R. (2000). The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health and Social Behavior, 41, 50-67.
20. 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.
21. Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
22. Harris, P.B., & Sterin, G.J. (1999). Insider's perspective: Defining and preserving the self in dementia. Journal of Mental Health and Aging, 5, 241-256.
23. Hebert, L.E., Scherr, P.A., Bienjas, J.L., Bennett, D.A., & Evans, D.A. (2003). Alzheimer disease in the US population: Prevalence estimates using the 2000 census. Archives of Neurology, 60 (8), 1119-1122.
24. Hoehn, M.M., & Yahr, M.D. (1967). Parkinsonism: Onset, progression and mortality. Neurology, 17, 427-442.
25. Holston, E.C. (2005). Stigmatization in Alzheimer's disease research on African American elders. Issues in Mental Health Nursing, 26, 1103-1127.
26. 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.
27. Hutchinson, S.A., & Wilson, H.S. (1998). The theory of unpleasant symptoms and Alzheimer's disease... including commentary by E.R. Lenz and A.G. Gift. Scholarly Inquiry in Nursing Practice, 12 (2), 143-162.
28. Iliffe, S., DeLepeieire, J., VanHout, H., Kenny, G., Lewis, A., Vernooij-Dassen, M., et al. (2005). Understanding obstacles to the recognition of and response to dementia in different European countries: A modified focus group approach using multinational, multi-disciplinary expert groups. Aging & Mental Health, 9 (1), 1-6.
29. Jolley, D.J., & Benbow, S.M. (2000). Stigma and Alzheimer's disease: Causes, consequences and a constructive approach. International Journal of Clinical Practice, 54 (2), 117-119.
30. Jones, E.E., Farina, A. Hastorf, A., Marksu, H., Mella, D., & Scott, R. (1984). Social stigma: The psychology of a marked relationship. New York: Freeman.
31. Karlsen, K.H., Tandberg, E., Arsland, D., & Larsen, J.P. (2000). Health related quality of life in Parkinson's disease: A prospective longitudinal study. Neurology, Neurosurgery, & Psychiatry, 69, 584-589.
32. Kitwood, T. (1997a). Dementia reconsidered. Bristol, PA: Open University Press.
33. Kitwood, T. (1997b). The experience of dementia. Aging and Mental Health, 1, 13-22.
34. Koller, W.C. (1992). How accurately can Parkinson's disease be diagnosed. Neurology, 42 (Supplement 1), 6-16.
35. Koller, W.C., & Montgomery, E.B. (1997). Issues in the early diagnosis of Parkinson's disease. Neurology, 49 (1), S10-S25.
36. Larson, E.B., Shadlen, M.-F., Wang, L., McCormick, W.C., Bowen, J.D., Teri, L., et al. (2004). Survival after initial diagnosis of Alzheimer disease. Annals of Internal Medicine, 140, 501-509.
37. Link, B.G., & Phelan, J.C. (2001, September). On stigma and its public health implications. Paper presented at the National Institutes of Health International Stigma Conference, Bethesda, MD.
38. Link, B.G., Cullen, F.T., Frank, J., & Wozniack, J.F. (1987). The social rejection of former mental patients: Understanding why labels matter. American Journal of Sociology, 92, 461-500.
39. Link, B.G., Struening, E., Cullen, F.T., Shrout, P.E., & Donrhenwend, B.P. (1989). A modified labeling theory approach to mental disorders: An empirical assessment. American Sociological Review, 54, 400-423.
40. Link, B.G., Struening.,E.L., Rahav, M., Phelan, J.C., & Nuttbrock, L. (1997). On stigma and its consequences: Evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. Journal of Health and Social Behavior, 38, 177-190.
41. Link, B.G. (1987). Understanding labeling effects in the area of mental disorders: An assessment of the effects of expectations of rejection. American Sociological Review, 52, 96-112.
42. Lyness, J.M., Noel, T.K., Cox, C., King, D.A., Conwell, Y., & Caine, E.D. (1997). Screening for depression in elderly primary care patients: A comparison of the Center for Epidemiologic Studies Depression Scale and the Geriatric Depression Scale. Archives of Internal Medicine, 157, 449-454.
43. MacQuarrie, C.R. (2005). Experiences in early stage Alzheimer's disease: Understanding the paradox of acceptance and denial. Aging & Mental Health, 9, 430-441.
44. Miles, M.S., Burchinal, D.H., Wasilewski, Y., & Christian, B. (1997). Personal, family, and health-related correlates of depressive symptoms in mothers with HIV. Journal of Family Psychology, 11, 23-34.
45. Olanow, C.W., Watts, R.L., & Koller, W.C. (2001). An algorithm for the management of Parkinson's disease (2001). Treatment guidelines. Neurology, 56 (11, Supplment 5), S1-S88.
46. Pahwa, R., Lyons, K., McGuire, D., Silverstein, P., Zwiebel, F., Robischon, M., et al. (1997). Comparison of standard carbidopa levodopa and sustained-release carbidopa-levodopa in Parkinson's disease: Pharmacokinetic and quality of life measures. Movement Disorders, 12, 677-681.
47. Pearlin, L., & Schooler, K. (1978). The structure of coping. Journal of Health and Social Behavior, 19, 2-21.
48. Pratt, R., Clare, L., & Kirchner, V. (2006). 'It's like a revolving door syndrome': Professional perspectives on models of access to services for people with early-stage dementia. Aging & Mental health, 10 (1), 55-62.
49. Reingold, A.L., & Krishnan, S. (2001, September). The study of potentially stigmatizing conditions: An epidemiologic perspective. Paper presented at the National Institutes of Health International Stigma Conference, Bethesda, MD.
50. Rosenberg, M. (1979). Conceiving the self. New York: Basic Books.
51. Rosser, R. (1988). A health index and output measure. In S.R. Walker & R.M. Rosser (Eds.), Quality of life: Assessment and application. Lancaster, PA: MT Press.
52. Sabat, S.R. (2002). Selfhood and Alzheimer's disease. In P.B. Harris (Ed.), The person with Alzheimer's Disease: Pathways to understanding the experience (pp. 88-111). Baltimore, MD: Johns Hopkins Press.
53. Scheife, R.T., Schumock, G.T., Burstein, A., Gottwald, M.D., & Luer, M.S. (2000). Impact of Parkinson's disease and its pharmacological treatment on quality of life and economic outcomes. American Journal of Health Systems Pharmacology, 57, 953-962.
54. Small, G.W., Rabins, P.V., Barry, P.P., Buckholtz, N.S., DeKosky, S.T., Ferris, S.H., et al. (1997). Diagnosis and treatment of Alzheimer disease and related disorders: Consensus statement of the American Association for Geriatric Psychiatry, the Alzheimer's Association, and the American Geriatrics Society. Journal of American Medical Association, 278, 1363-1371.
55. Sontag, S. (1978). Illness as metaphor. New York, NY: McGraw-Hill.
56. Vernooij-Dassen, M.J., Moniz-Cook, E.D., Woods, R.T., DeLepeieire, J., Leuschner, A., Zanetti, O., et al. (2005). Factors affecting timely recognition and diagnosis of dementia across Europe: From awareness to stigma. International Journal of Geriatric Psychiatry, 20 (4), 377-386.
57. Wahl, O.F. (1999). Telling is risky business. Piscataway, NJ: Rutgers University Press.
58. Wright, E.R., Gronfein, W.P., & Owens, T.J. (2000). Deinstitutionalization, social rejection, and the self-esteem of former mental patients. Journal of Health and Social Behavior, 41 (3), 68-90.