The purpose of this study was to gain an understanding of the endings of day care for people
with dementia. Staff members from a statewide random sample of dementia day care facilities
were asked to think back over their practices and describe especially satisfying and dissatisfying
experiences. The day care endings—either by death or by termination for
other reasons—were
governed by the uncertain limits of care. Dimensions of uncertainty included the capacities of
the family, client, and staff, the ethical dilemmas embedded in the care; and the working
relationship between staff and family. The staff experiences were shaped by Western ideologies
about the "good" of community care and the "bad" of institutional care. Findings suggest the
need for increased staff awareness of the uncertainty that dominates the endings of day care and
for better contextualization of the endings into each client's ongoing life story.
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References
1.
Adult day services: The un-nursing home. (1995, Spring). Respite Report (pp. 1-2). Winston-Salem, NC: Partners in Caregiving: The Dementia Services Program, Bowman Gray School of Medicine.
2.
Aronson, J. (1990). Women's perspectives on informal care of the elderly: Public ideology and personal experience of giving and receiving care. Ageing and Society, 10, 61-84.
3.
Beer, D. (1997). "There's a certain Slant of Light": The experience of discovery m qualitative interviewing. Occupational Therapy Journal of Research, 17, 110-129.
4.
Benner, P. (1991). The role of experience, narrative, and community in skilled ethical comportment. Advances in Nursing Science , 14(2), 1-21.
5.
Benner, P. (1994). Discovering challenges to ethical theory in experience-based narratives of nurses' everyday ethical comportment. In J. F. Monagle & D. C. Thomasma (Eds.), Health care ethics: Critical issues (pp. 401-411). Gaithersburg, MD: Aspen.
6.
Borell, L., Gustavsson, A., Sandman, P-O., & Kielhofner, G. (1994). Occupational programming in a day hospital for patients with dementia. Occupational Therapy Journal of Research, 14, 219-238.
7.
Bruner, J. (1986). Actual minds, possible worlds. Cambridge, MA: Harvard University Press.
8.
Bruner, J. (1990). Acts of meaning. Cambridge, MA: Harvard University Press.
9.
Cohen, C.A., Gold, D.P., Shulman, K.I., Wortley, J.T., McDonald, G., & Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: A prospective study. The Gerontologist , 33, 714-720.
10.
Colerick, E.J., & George, L.K. (1986). Predictors of institutionalization among caregivers of patients with Alzheimer's disease. Journal of the American Geriatrics Society, 34, 493-498.
11.
Collins, C., King, S., & Kokinakis, C. (1994). Community service issues before nursing home placement of persons with dementia. Western Journal of Nursing Research , 16(1), 40-56.
12.
Fisk, A.A., & Pannill, F.C. (1987). Assessment and care of the community-dwelling Alzheimer's disease patient. Journal of the Amencan Geriatrics Society, 35, 307-311.
13.
Gold, D.P., Reis, M.F., Markiewicz, D., & Andres, D. (1995). When home caregiving ends: A longitudinal study of outcomes for caregivers of relatives with dementia. Journal of the American Geriatrics Society, 43(1), 10-16.
14.
Good, B.J. (1994). Medicine, rationality, and experience. Cambridge, UK: Cambridge University Press.
15.
Graham, R.W. (1989) Adult day care: How families of the dementia patient respond. Journal of Gerontological Nursing, 15(3), 27-31
16.
Hasselkus, B.R. (1992a) The meaning of activity: Day care for persons with Alzheimer's disease. American Journal of Occupational Therapy, 46, 199-206.
17.
Hasselkus, B.R. (1992b). Staff helping behaviors: Alzheimer day care. American Journal of Alzheimer's Care and Related Disorders & Research , 7, 9-16.
18.
Hasselkus, B.R. (1994) Commentary: Occupational programming in a day hospital for patients with dementia. Occupational Therapy Journal of Research, 14, 239-243.
19.
Hasselkus, B.R., & Dickie, V.A. (1994). Doing occupational therapy: Dimensions of satisfaction and dissatisfaction. American Journal of Occupational Therapy , 48, 145-154.
20.
Holstein, J.A., & Gubnum, J.F. (1995). The active interview. Thousand Oaks, CASage.
21.
Kermode, F. (1967). The sense of an ending. New York: Oxford University Press.
22.
Lamerton, R. (1976). Care of the dying. Westport, CT: Technomic.
23.
Levy-Storms, L. (1996). The predictors of institutionalization in context. A crisis perspective. Association for Anthropology and Gerontology Newsletter, 17(2), 1-7.
24.
Lincoln, Y.S., & Guba, E.G. (1986). But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. In D. D. Williams (Ed.), Naturalistic evaluation: New directions for program evaluation. San Francisco: Jossey-Bass .
25.
Luborsky, M.R. (1993). The romance with personal meaning in gerontology: Cultural aspects of life themes. The Gerontologist, 33, 445-452.
26.
Lyman, K.A. (1989). Day care for persons with dementia: The impact of the physical environment on staff stress and quality of care. The Gerontologist, 29, 557-560.
27.
Lyman, K.A. (1993). Day in, day out with Alzheimer's. Philadelphia: Temple University Press.
28.
Mattingly, C. (1994). The concept of therapeutic "emplotment." Social Science & Medicine, 38, 811-822.
29.
McCue, J.D. (1995). The naturalness of dying. Journal of the American Medical Association,273, 1039-1043.
30.
Moody, H.R. (1992). Ethics in an aging society. Baltimore: Johns Hopkins University Press.
31.
Newman, S.J., Struyk, R., Wright, P., & Rice, M. (1990). Overwhelming odds: Caregiving and the risk of institutionalization. Journal of Gerontology: Social Sciences , 45, S173-S183.
32.
Panella, J.J., Lilliston, B.A., Brush, D., & McDowell, F.H. (1984). Day care for dementia patients: An analysis of a four-year program. Journal of the American Geriatrics Society, 32, 883-886.
33.
Polkinghorne, D.E. (1988). Narrative knowing and the human sciences. Albany: State Umversity of New York Press.
34.
Rabinowitz, E. (1986) Day care and Alzheimer's disease: A weekend program in New York City. Physical and Occupational Therapy in Geriatrics , 4(3), 95-103.
35.
Reifler, B.V. (1994, Summer). What I want if I get Alzheimer's disease . Respite Report (pp. 3, 7). Winston-Salem, NC: Partners in Caregiving: The Dementia Services Program, Bowman Gray School of Medicine.
36.
Ricoeur, P. (1984). Time and narrative. Chicago : University of Chicago Press.
37.
Riessman, C.K. (1990) Strategic uses of narrative in the presentation of self and illness: A research note. Social Science & Medicine, 30, 1195-1200.
38.
Sands, D., & Suzuki, T (1983) Adult day care for Alzheimer's patients and their families. The Gerontologist, 23, 21-23.
39.
Sankar, A. (1991). Dying at home. Baltimore: Johns Hopkins University Press.
40.
Van Manen, M. (1990) Researching lived experience. New York: State University of New York Press.
