Advocating voice: Organisational, historical and social milieux of the Alzheimer's disease movement

Sociology of Health and Illness

Volumn 26, Issue 6, 2004, Pages 797-819

  Beard, Renée L ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

Advocacy; Alzheimer's disease; Social movements

Indexed keywords

ALZHEIMER DISEASE; AMNESIA; ARTICLE; DIAGNOSTIC TEST; DIAGNOSTIC VALUE; DISEASE COURSE; HEALTH CARE AVAILABILITY; HEALTH CARE ORGANIZATION; HEALTH CARE POLICY; HEALTH SERVICE; HISTORY OF MEDICINE; HUMAN; INTERVIEW; QUALITATIVE ANALYSIS; SOCIAL ASPECT;

ALZHEIMER DISEASE; BIOMEDICAL RESEARCH; CONSUMER ADVOCACY; FEMALE; FOCUS GROUPS; HEALTH POLICY; HISTORY, 20TH CENTURY; HUMANS; MALE; ORGANIZATIONAL OBJECTIVES; SOCIAL CHANGE; SOCIETIES;

EID: 6444241523     PISSN: 01419889     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.0141-9889.2004.00419.x     Document Type: Article

References (56)

1. Alzheimer's Association (2004) About Us: Overview. Retrieved 31/01/2004 from (A) http://www.alz.org/AboutUs/overview.htm
2. Alzheimer's Association (2004) About Us: Timeline. Retrieved 31/01/2004 from (B) http://www.alz.org/AboutAD/Treatment/Standard.htm
3. Alzheimer's Association (2004) About Us: History. Retrieved 31/01/2004 from (C) http://www.alz.org/AboutUs/History/overview.htm
4. Aneshensel, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H. and Whitlatch, C.J. (1995) Profiles in Caregiving: the Unexpected Career. New York: Academic Press.
5. Beach, T.G. (1987) The history of Alzheimer's disease: three debates, Journal of the History of Medicine and Allied Sciences, 42, 327-49.
6. Beard, R.L. (2004) In their voices: identity preservation and experiences of Alzheimer's disease, Journal of Ageing Studies, 18, 4.
7. Beard, R.L. and Estes, C.L. (2002) Medicalization of Aging. Macmillan Encyclopedia of Aging. New York: Macmillan Press.
8. Billis, D. and Glennerster, H. (1998) Human services and the voluntary sector: towards a theory of comparative advantage, Journal of Social Policy, 27, 1, 79-98.
9. Bond, J. (1992) The medicalization of dementia, Journal of Ageing Studies, 6, 397-403.
10. Booth, T. and Booth, W. (1999) Parents together: action research and advocacy support for patients with learning difficulties, Health and Social Care in the Community, 7, 6, 464-74.
11. Braudy Harris, P. (2002) The Person with Alzheimer's Disease: Pathways To Understanding the Experience. Baltimore, MD: Johns Hopkins University Press.
12. Canguilhem, G. (1991) On the Normal and the Pathological. New York: Zone Books.
13. Cheston, R. and Bender, M. (1999) Understanding Dementia: the Man with the Worried Eyes. London: Jessica Kingsley Publishers.
14. Cohen, D. (1991) The subjective experience of Alzheimer's disease: the anatomy of an illness as perceived by patients and families, American Journal of Alzheimer's Care and Related Disease and Research, 6-11 May/June.
15. Corbin, J.M. and Strauss, A. (1998) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 2nd Edition, New York: Sage Publications.
16. Cottrell, V. and Schulz, R. (1993) The perspective of the patient with Alzheimer's disease: a neglected dimension of dementia research, The Gerontologist, 32, 205-11.
17. Cutler, N. (1986) Public response: The national politics of Alzheimer's disease. In Gilhooly, M., Zarit, S. and Birrens, J. (eds) The Dementias: Policy and Management. NJ: Prentice Hall.
18. Davis, R. (1989) My Journey into Alzheimer's Disease. Illinois: Tyndale House Publishers.
19. DeBaggio, T. (2002) Losing my Mind: an Intimate Look at Life with Alzheimer's. New York: The Free Press.
20. Dyer, J. (1996) In a Tangled Wood. Dallas: Southern Methodist University Press.
21. Epstein, S. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.
22. Fox, P.F. (1989) From senility to Alzheimer's disease: the rise of the Alzheimer's disease movement, The Millbank Quarterly, 67, 1, 58-102.
23. Fox, P.F. and Muller, M.R. (2001) Disease-based Social Movements and Health Policy Reform: Alzheimer Disease and Acquired Immune Deficiency Syndrome. University of California, San Francisco: Institute for Health and Aging.
24. Friel-McGowin, D.F. (1993) Living in the Labyrinth: a Personal Journey through the Maze of Alzheimer's. New York: Dell Publishing.
25. Glaser, B.G. and Strauss, A.L. (1966) Awareness of Dying. London: Weidenfeld and Nicholson.
26. Glaser, B. and Strauss, A. (1967) Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine de Gruyter.
27. Goldsmith, M. (1996) Hearing the Voice of People with Dementia: Opportunities and Obstacles. London: Jessica Kingsley Publishers.
28. Golomb, J., Kluger, A., Garrard, P. and Ferris, S. (2001) Clinican's Manual on Mild Cognitive Impairment. London: Science Press.
29. Gordon, S., Benner, P. and Noddings, N. (1996) Caregiving: Readings in Knowledge, Practice, Ethics, and Politics. Philadelphia: University of Pennsylvania Press.
30. Gubrium, J. (1986) Oldtimers and Alzheimer's: the Descriptive Organization of Senility. Greenwich, CT: JAI Press.
31. Gubrium, J. (1987) Structuring and destructuring the course of illness: the Alzheimer's disease experience, Sociology of Health and Illness, 9, 1-24.
32. Hedgecoe, A.M. (2003) Expansion and uncertainty: cystic fibrosis, classification and genetics, Sociology of Health and Illness, 25, 1, 50-70.
33. Henderson, C. (1998) Partial View: an Alzheimer's Journal. Dallas: Southern Methodist University Press.
34. Herskovits, E. (1995) Struggling over subjectivity: debates about the 'Self' and Alzheimer's disease, Medical Anthropology Quarterly, 9, 2, 146-64.
35. Kastenbaum, R.J. (1969) Psychological death. In Pearson, L. (ed.) Death and Dying, OH: Case Western Reserve University Press.
36. Kitwood, T. and Bredin, K. (1992) Towards a theory of dementia care: personhood and well-being, Ageing & Society, 12, 269-87.
37. Klawiter, M. (1999) Racing for the cure, walking women, and toxic touring: mapping cultures of action within the Bay Area terrain of breast cancer, Social Problems, 46, 1, 104-26.
38. Kramer, L. (1989) Reports from the Holocaust. New York: St. Martin's Press.
39. Lawton, M.P., Moss, M., Kleban, M., Glicksman, A. and Rovine, M. (1991) A two-factor model of caregiving appraisal and psychological well-being, Journal of Gerontology: Psychological Sciences, 46, 81-9.
40. McAllister, M.D. and Powers, R. (1994) Approaches to the treatment of dementing illness. In Emery, V.O. and Oxman, T.E. (eds) Dementia: Presentations, Differential Diagnosis, and Nosology. Baltimore, MD: The Johns Hopkins University Press.
41. Mattson, M.P. (1998) Experimental models of Alzheimer's disease, Science and Medicine, March/April, 16-25.
42. Ming, C. and Fernandez, H. (2001) Alzheimer movement re-examined 25 years later: Is it a 'disease' or a senile condition in medical nature? Frontiers in Bioscience, 6, e30-40.
43. Noonan, A.E. and Tennstedt, S. (1997) Meaning in caregiving and its contribution to caregiver well-being, The Gerontologist, 37, 6, 785-94.
44. Post, S.G. (1995) The Moral Challenge of Alzheimer's Disease. Baltimore, MD: Johns Hopkins Press.
45. Robertson, A. (1990) The politics of Alzheimer's disease: a case study in apocalyptic demography, International Journal of Health Services, 20, 3, 429-42.
46. Rose, L. (1996) Show me the way to go home. San Francisco, CA: Elder Books.
47. Rucht, D. (1996) The impact of national contexts on social movement structures: a cross-movement and cross-national comparison. In McAdam, D. McCarthy, J. and Zald, M. (eds) Comparative Perspectives on Social Movements. New York: Cambridge University Press.
48. Sabat, S.R. (2001) The Experience of Alzheimer's Disease: Life Through a Tangled Veil. Oxford: Blackwell Publishers Ltd.
49. Sabat, S.R. and Harre, R. (1992) The construction and deconstruction of self in Alzheimer's disease, Ageing & Society, 12, 443-61.
50. Schutz, A. (1967) The Phenomenology of the Social World. Illinois: Northwestern University Press.
51. Stockdale, A. (1999) Waiting for the cure: mapping the social relations of human gene therapy research, Sociology of Health and Illness, 21, 5, 579-96.
52. Strauss, A. and Corbin, J. (1990) Basics of Qualitative Research: Grounded Theory Procedures and Techniques. London: Sage Publications.
53. Sudnow, D. (1967) Passing On: the Social Organization of Dying. Englewood Cliffs, NJ: Prentice Hall Inc.
54. Sweeting, H. and Gilhooly, M. (1997) Dementia and the phenomenon of social death, Sociology of Health and Illness, 19, 1, 93-117.
55. Wilkinson, H. (ed.) (2002) The Perspectives of People with Dementia: Research Methods and Motivations. London: Jessica Kingsley Publishers.
56. Zarit, S., Stephens, M., Townsend, A. and Greene, R. (1998) Stress reduction for family caregivers: effects of adult day care use, Journal of Gerontology: Social Sciences, 53B, 5, s267-77.