Social representations of barriers to care early in the careers of caregivers of persons with Alzheimer's disease

Research on Aging

Volumn 30, Issue 3, 2008, Pages 334-357

  Carpentier, Normand ^a   Ducharme, Francine ^a   Kergoat, Marie Jeanne ^a   Bergman, Howard ^b  

^a CENTRE DE RECHERCHE   (Canada)

^b MCGILL UNIVERSITY   (Canada)

Author keywords

Alzheimer's disease; Barriers to care; Social representations; Theoretical and methodological considerations

Indexed keywords

EID: 41649088059     PISSN: 01640275     EISSN: 15527573     Source Type: Journal    
DOI: 10.1177/0164027507312113     Document Type: Article

References (72)

1. Abric, Jean-Claude. 1994. " Les Représentations Sociales: Aspects Théoriques " Pp. 11-36 in Pratiques Sociales et Représentations, edited by J.-C. Abric. Paris: Presses Universitaires de France.
2. - -, ed. 1996. Exclusion Sociale, Insertion et Prévention. Saint-Agne, France: Editions Ers.
3. - -. 2003. " L'Analyse Structurale des Représentations Sociales " Pp. 375-92 in Les Méthodes des Sciences Humaines, edited by S. Moscovici and F. Buschini. Paris: Presses Universitaires de France.
4. Adams, Kathryn B. 2006. " The Transition to Caregiving: The Experience of Family Members Embarking on the Dementia Caregiving Career." Journal of Gerontological Social Work 47 (3 / 4). 3-29.
5. Adams, Kathryn B. and Sara Sanders. 2004. " Alzheimer's Caregiver Differences in Experience of Loss, Grief Reactions and Depressive Symptoms Across Stage of Disease: A Mixed-Method Analysis." Dementia 3 (2). 195-210.
6. Allen, Susan. 1994. " Gender Differences in Spousal Caregiving and Unmet Need for Care." Journal of Gerontology: Social Sciences 49 (4). S187-95.
7. American Psychiatric Association. 1994. Diagnostic and Statistical Manual of Mental Disorders, 4 th ed. Washington, DC: American Psychiatric Association.
8. Bazeley, Pat and Lyn Richards. 2000. The NVivo Qualitative Project Book. London: Sage Ltd.
9. Beisecker, Analee, Linda J. Wright, Susan K. Chrisman, and Janet Ashworth. 1996. " Family Caregiver Perceptions of Benefits and Barriers to the Use of Adult Day Care for Individuals With Alzheimer's Disease." Research on Aging 18: 430-50.
10. Berkman, Lisa F. and Thomas Glass. 2000. " Social Integration, Social Networks, Social Support, and Health " Pp. 137-73 in Social Epidemiology, edited by Lisa F. Berkman and Ichiro Kawachi. New York: Oxford University Press.
11. Boise, Linda, Davia L. Morgan, Jeffrey Kaye, and Richard Camicioli. 1999. " Delays in the Diagnosis of Dementia: Perspectives of Family Caregivers." American Journal of Alzheimer's Disease 14 (1). 20-26.
12. Brodaty, Henry and Dusan Hadzi-Pavlovic. 1990. " Psychosocial Effects on Carers of Living With Persons With Dementia." Australian and New Zealand Journal of Psychiatry 24: 351-61.
13. Brodaty, Henry, Cathy Thomson, Claire Thompson, and Michael Fine. 2005. " Why Caregivers of People With Dementia and Memory Loss Don't Use Services." International Journal of Geriatric Psychiatry 20: 537-46.
14. Buschini, Fabrice and Nikos Kalampalikis. 2002. " Les Logiques Naturelles et les Représentations Sociales " Pp. 187-205 in Les Représentations Sociales: Balisage du Domaine d'études, edited by Catherine Garnier and Willem Doise. Montreal, Canada: éditions Nouvelles.
15. Carpentier, Normand and Francine Ducharme. 2003. " Care-Giver Network Transformation: The Need for an Integrated Perspective." Ageing and Society 23 (4). 507-25.
16. - -. 2005. " Support Network Transformations in the First Stages of the Caregiver's Career." Qualitative Health Research 15 (3). 289-311.
17. - -. 2007. " Social Network Data Validity: The Example of the Social Network of Caregivers of Older Persons With Alzheimer-Type Dementia." Canadian Journal on Aging/La Revue Canadienne du Vieillissement 26 (Suppl. 1). 103-16.
18. Caserta, Michael S., Dale A. Lund, Scott D. Wright, and David E. Redburn. 1987. " Caregivers of Dementia Patients: Use of Community Services." The Gerontologist 27: 209-13.
19. Clare, Linda. 2002. " Developing Awareness About Awareness in Early-Stage Dementia, the Role of Psychosocial Factors." Dementia 1 (3). 295-312.
20. Clark, Chris, Denise Chaston, and Gordon Grant. 2003. " Early Interventions in Dementia: Carer-Led Evaluations " Pp. 33-49 in Partnerships in Family Care: Understanding the Caregiving Career, edited by Mike Nolan, Ulla Lundh, Gordon Grant, and John Keady. Maidenhead, UK: Open University Press.
21. Connell, Cathleen M. and Mary P. Gallant. 1996. " Spouse Caregiver's Attitudes Toward Obtaining a Diagnosis of a Dementing Illness." Journal of the American Geriatric Society 44: 1003-1009.
22. Coudin, Genevieve. 2004. " La Réticence des Aidants Familiaux Recourir aux Services Gérontologiques: Une Approche Psychosociale." Psychologie & NeuroPsychiatrie du Vieillissement 2 (4). 285-96.
23. Daatland, Svein Olav and Katharina Herlofson. 2003. " 'Lost Solidarity' or 'Changed Solidarity': A Comparative European View of Normative Family Solidarity." Ageing & Society 23 (5). 537-60.
24. Durkheim, Emile. 1898. " Représentations Individuelles et Représentations Collectives " Revue de Métaphysique et de Morale 6: 273-302.
25. Elejabarrieta, Fran. 1992. " Social Positioning: A Way to Link Social Identity and Social Representations." Social Science Information 33 (2). 241-53.
26. Farr, Robert M. 1998. " From Collective to Social Representations: Aller et Retour." Culture & Psychology 4 (3). 275-96.
27. Gaugler, Joseph E., Sarah B. Wackerbarth, Marta Mendiondo, Frederick A. Schmitt, and Charles D. Smith. 2003. " The Characteristics of Dementia Caregiving Onset." American Journal of Alzheimer's Disease 18 (2). 97-104.
28. Gaugler, Joseph E., Steven H. Zarit, and Leonard I. Pearlin. 2003. " The Onset of Dementia Caregiving and Its Longitudinal Implications." Psychology and Aging 18 (2). 171-80.
29. Goffman, Erving. 1959. The Presentation of Self in Everyday Life. New York: Doubleday Anchor.
30. - -. 1974. Frame Analysis: An Essay on the Organization of Experience. New York: Harper & Row.
31. Goldsilver, Pamela M. and Marilyn R. B. Gruneir. 2001. " Early Stage Dementia Group: An Innovative Model of Support for Individuals in the Early Stages of Dementia." American Journal of Alzheimer's Disease and Others Dementias 16 (2). 109-14.
32. Hasselkus, Betty R. 1988. " Meaning in Family Caregiving: Perspectives on Caregiver/ Professional Relationships " The Gerontologist 28 (5). 686-91.
33. Hermans, Hubert J. M. 2003. " Clinical Diagnosis as a Multiplicity of Self-Positions: Challenging Social Representations Theory " Culture & Psychology 9 (4). 407-14.
34. Herzlich, Claudine. 1973. Health and Illness: A Social Psychological Analysis. London: Academic Press.
35. Hinton, Ladson W., Kenneth Fox, and Sue Levkoff. 1999. " Introduction: Exploring the Relationships Among Aging, Ethnicity, and Family Dementia Caregiving " Culture, Medicine and Psychiatry 23: 403-13.
36. Howarth, Caroline, Juliet Foster, and Nike Dorrer. 2004. " Exploring the Potential of the Theory of Social Representations in Community-Based Health Research-and Vice Versa ?" Journal of Health Psychology 9 (2). 229-43.
37. Janevic, Mary R. and Cathleen M. Connell. 2001. " Racial, Ethnic, and Cultural Differences in the Dementia Caregiving Experience: Recent Findings." The Gerontologist 41 (3). 334-47.
38. Jodelet, Denise. 1989. Folies et Représentations Sociales. Paris: Presses Universitaires de France.
39. - -. 1996. " Représentation Sociale de la Maladie Mentale et Insertion des Malades Mentaux " Pp. 97-111 in Exclusion Sociale, Insertion et Prévention, edited by Jean-Claude Abric. Saint-Agne, France: Editions Ers.
40. Kasper, Judith D. 2000. " Health-Care Utilization and Barriers to Health Care " Pp. 323-38 in Handbook of Social Studies in Health and Medicine, edited by Gary L. Albrecht, Ray Fitzpatrick, and Suzan C. Scrimshaw. London: Sage Ltd.
41. Keady, John and Mike Nolan. 2003. " The Dynamics of Dementia: Working Together, Working Separately, or Working Alone? " Pp. 15-32 in Partnerships in Family Care, edited by Mike Nolan, Ulla Lundh, Gordon Grant, and John Keady. Maidenhead, UK: Open University Press.
42. King, Sharon, Clare Collins, and Michelle Liken. 1995. " Values and the Use of Community Services." Qualitative Health Research 5 (3). 332-47.
43. Kuhn, Daniel R. and Carlos F. Mendes de Leon. 2001. " Evaluating an Educational Intervention With Relatives of Persons in the Early Stages of Alzheimer's Disease." Research on Social Work Practice 11 (5). 531-48.
44. MacRae, Hazel. 1999. " Managing Courtesy Stigma: The Case of Alzheimer's Disease." Sociology of Health and Illness 21 (1). 54-70.
45. Mahoney, Diane F., Jane Cloutterbuck, Susan Neary, and Lin Zhan. 2005. " African American, Chinese, and Latino Family Caregivers' Impressions of the Onset and Diagnosis of Dementia: Cross-Cultural Similarities and Differences." The Gerontologist 45 (6). 783-92.
46. Millman, Michael, ed. 1993. Access to Health Care in America. Washington, DC: National Academy Press.
47. Morgan, Craig, Rosemarie Mallett, Gerard Hutchinson, and Julian Leff. 2004. " Negative Pathways to Psychiatric Care and Ethnicity: The Bridge Between Social Science and Psychiatry." Social Science & Medicine 58: 739-52.
48. Morgan, David L. 2002. " Seeking Diagnosis for a Cognitively Impaired Family Member: Evidence From Focus Groups " Pp. 213-31 in Qualitative Gerontology: A Contemporary Perspective, edited by G. D. Rowles and N. E. Schoenberg. New York: Springer.
49. Morgan, Debra G., Karen M. Semchuk, Norma J. Stewart, and Carl D'arcy. 2002. " Rural Families Caring for a Relative With Dementia: Barriers to Use of Formal Services." Social Science & Medicine 55: 1129-42.
50. Morse, Janice M. 2004. " Constructing Qualitatively Derived Theory: Concept Construction and Concept Typologies " Qualitative Health Research 14 (10). 1387-95.
51. Moscovici, Serge. 1961. La Psychanalyse, Son Image, Son Public. Paris: Presses Universitaires de France.
52. - -. 1973. " Introduction." In Health and Illness: A Social Psychological Analysis, edited by C. Herzlich. London: Academic Press.
53. Murray, Michael. 2002. " Connecting Narrative and Social Representation Theory in Health Research." Social Science Information 41 (4). 653-73.
54. Navon, Liora and Nurit Weinblatt. 1996. " The Show Must Go On-Behind the Scenes of Elderly Spousal Caregiving." Journal of Aging Studies 10 (4). 329-42.
55. Neufeld, Anne and Margaret J. Harrison. 2000. " Family Caregiving: Issues in Gaining Access to Support " Pp. 247-73 in Chronic Conditions and Caregiving in Canada: Social Support Strategies, edited by M. J. Stewart. Toronto, Canada: University of Toronto Press.
56. Neufeld, Anne, Margaret J. Harrison, Miriam J. Stewart, Karen D. Hughes, and Denise Spitzer. 2002. " Immigrant Women: Making Connections to Community Resources for Support in Family Caregiving." Qualitative Health Research 12 (6). 751-68.
57. Nick, Susan and Margaret Douglas. 1991. " Alzheimer's Families: Decisions for Caring." Journal of Home Health Care Practice 3 (4). 65-71.
58. O'Connor, Deborah L. 1995. " Supporting Spousal Caregivers: Exploring the Meaning of Service Use." Families in Society 76 (5). 296-305.
59. Parales Quenza, Carlos J. 2005. " On the Structural Approach to Social Representations." Theory & Psychology 15 (1). 77-100.
60. Patton, Michael Q. 1990. Qualitative Evaluation and Research Methods, 2 nd ed. Newbury Park, CA: Sage.
61. Pedlar, David J. and David E. Biegel. 1999. " The Impact of Family Caregiver Attitudes on the Use of Community Services for Dementia Care." Journal of Applied Gerontology 18 (2). 201-21.
62. Pescosolido, Bernice A. 1992. " Beyond Rational Choice: The Social Dynamics of How People Seek Help." American Journal of Sociology 97 (4). 1096-1138.
63. Pratt, Rebekah, Linda Clare, and Vincent Kirchner. 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.
64. Shah, Ajit and James Lindesay. 1994. " Cross-Cultural Issues in the Assessment of Cognitive Impairment." Pp. 217-31 in Dementia, edited by Alistair Burns and Raymond Levy. London: Chapman & Hall.
65. Silverstein, Merril, Vern L. Bergtson, and Eugene Litwak. 2003. " Theoretical Approaches to Problems of Families, Aging, and Social Support in the Context of Modernization " Pp. 181-98 in The Need for Theory: Critical Approaches to Social Gerontology, edited by Simon Biggs, Ariela Lowenstein, and Jon Hendricks. Amityville, NY: Baywood.
66. Stoltz, Peter, Ania Willman, and Giggi Udén. 2006. " The Meaning of Support as Narrated by Family Carers Who Care for a Senior Relative at Home." Qualitative Health Research 16 (5). 594-610.
67. Uehara, Edwina S. 2001. " Understanding the Dynamics of Illness and Help-Seeking: Event-Structure Analysis and a Cambodian-American Narrative of 'Spirit Invasion.' " Social Science & Medicine 52 (4). 519-36.
68. van der Poel, Mart G. M. 1993. " Delineating Personal Support Networks " Social Networks 15: 49-70.
69. Wackerbarth, Sarah. 1999. " Modeling a Dynamic Decision Process: Supporting the Decisions of Caregivers of Family Members With Dementia." Qualitative Health Research 9 (3). 294-314.
70. Wackerbarth, Sarah B. and Mitzi M. S. Johnson. 2002. " The Carrot and the Stick: Benefits and Barriers in Getting a Diagnosis." Alzheimer Disease and Associated Disorders 16 (4). 213-20.
71. Wagner, Wolfgang, Gerard Duveen, Robert Farr, Sandra Jovchelovitch, Fabio Lorenzi-Cioldi, Ivana Markov, and Diana Rose. 1999. " Theory and Method of Social Representations." Asian Journal of Social Psychology 2 (1). 95-125.
72. Wirtz, Veronika, Alan Cribb, and Nick Barber. 2006. " Patient-Doctor Decision-Making About Treatment Within the Consultation: A Critical Analysis of Models." Social Science & Medicine 62 (1). 116-24.