Salience of self-identity roles in persons with dementia: differences in perceptions among elderly persons, family members and caregivers.

In this study, we explored perceptions of the salience of self-identity in persons suffering from dementia as perceived by the participants themselves, by family, and by staff caregivers. Four types of role-identity were explored: professional, family role, hobbies/leisure activities, and personal attributes. Participants were 104 persons with dementia, 48 of whom attended six adult day care centers while 56 resided in two nursing homes in the Washington, DC metropolitan area. Participants, relatives, and staff members were interviewed to obtain information about past and present self-identity roles of participants and attitudes toward these roles. Findings demonstrate that the importance of role identities decreases over time and with the progression of dementia. The family role was found to be the most important and salient role identity according to all the informant groups. The professional role was the one that showed the steepest decline in importance from past to present. Gender differences were detected for the importance of professional role identity. Participants rated their roles in the past as less important and those in the present as more important compared to family members. Family members reported greater decline in the importance of role identities for those participants with greater cognitive impairment. Participants with moderate cognitive impairment reported greater decline in the importance of role identities than did the participants with severe cognitive impairment. Understanding the past and present self-identities of persons with diminished cognitive abilities is crucial in the effort to provide individualized care and enhance participant experiences.

[1]  Rom Harré,et al.  The Construction and Deconstruction of Self in Alzheimer's Disease , 1992, Ageing and Society.

[2]  S. Folstein,et al.  "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. , 1975, Journal of psychiatric research.

[3]  Preserving Selves , 1998 .

[4]  Ruobing Li,et al.  Personhood in a World of Forgetfulness: An Ethnography of the Self-Process Among Alzheimer's Patients , 2002 .

[5]  Diana Friel McGowin Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's , 1992 .

[6]  P. Saunders "My Brain s On Strike" , 1998 .

[7]  A. Basting,et al.  Looking back from loss: views of the self in Alzheimer's disease , 2003 .

[8]  Jiska Cohen-Mansfield,et al.  Utilization of self-identity roles for designing interventions for persons with dementia. , 2006, The journals of gerontology. Series B, Psychological sciences and social sciences.

[9]  C. Williams,et al.  Persistence of self in advanced Alzheimer's disease. , 1999, Image--the journal of nursing scholarship.

[10]  Aviad E. Raz,et al.  The Mask of Dementia: Images of ‘Demented Residents’ in a Nursing Ward , 1996, Ageing and Society.

[11]  B. Hanson Voyage of Discovery , 2005, Science.

[12]  M. Strauss,et al.  Personality changes in Alzheimer's disease. , 1992, Archives of neurology.

[13]  A. Kolanowski,et al.  Life-span perspective of personality in dementia. , 1996, Image--the journal of nursing scholarship.

[14]  Ann M. Kolanowski,et al.  Emotional Well-Being in a Person with Dementia , 2002, Western journal of nursing research.

[15]  I. Hyman,et al.  Narrative intentions: Listening to life stories in Alzheimer's Disease , 1998 .

[16]  J. Cohen-Mansfield,et al.  Self-identity in older persons suffering from dementia: preliminary results. , 2000, Social science & medicine.

[17]  L. Clare Managing threats to self: awareness in early stage Alzheimer's disease. , 2003, Social science & medicine.

[18]  R. Schulz,et al.  The perspective of the patient with Alzheimer's disease: a neglected dimension of dementia research. , 1993, The Gerontologist.

[19]  R. Dworkin Autonomy and the demented self. , 1986, The Milbank quarterly.

[20]  G. Gutman,et al.  The discourse of self in dementia , 1998, Ageing and Society.