Academic journal article Care Management Journals

June's Troubled Transition: Adjustment to Residential Care for Older Adults with Dementia

Academic journal article Care Management Journals

June's Troubled Transition: Adjustment to Residential Care for Older Adults with Dementia

Article excerpt

In research on dementia care and housing transitions, only rarely are residents themselves present as active informants. This is a costly omission, inasmuch as manifestations of dementia, perceptions of care settings, and residents' experience of such transitions are both complex and highly variable. In this article, drawn from a larger study of the social organization of care in residential care/assisted living (RC/AL), we develop a detailed, ethnographic narrative that combines first-person reflections by, and observational data on, a single resident-a focal case. The account suggests that for older adults with mild to moderate dementia, awareness of serious impairment among coresidents can be both distressing and stigmatizing. We further argue that assumptions about and attributions of dementia by staff members, compounded by immediate demands of caregiving, may create a self-fulfilling prophecy resulting in residents' resistance and withdrawal. The case also suggests that, to the extent this interactional dynamic is present, distinctive goals in RC/AL, such as enhanced self-determination among residents, are undermined.

Keywords: assisted living; housing transitions; identity; narrative gerontology; dementia care

The biomedical model of dementia suggests inevitable and inexorable decline resulting in a loss of self (Gubrium, 1986; Lyman, 1989). However, this model emphasizes the tragic end-point of dementia, rather than the process-often spanning years-in which the afflicted person actively attempts to maintain core roles and identities despite cognitive impairment. When we began our fieldwork, research on dementia was dominated by medical terms and concepts, and by concern about caregiver burden (Mace & Rabins, 1981; Zarit, Orr, & Zarit, 1983). Ethnographic research with older adults and their caregivers was rare, and many doubted whether the afflicted had self-awareness or a coherent story to tell. However, despite methodological and ethical challenges, recognition grew that it is essential for understanding the manifestation and treatment of such illnesses that we include impaired older adults as research informants (Beard, 2004; Cutchin, Chang, & Owen, 2005 ; Loue, 2004). In recent years this research has flowered: for example, Belgrave, Allen-Kelsey, Smith, and Flores (2004), Beard (2004), and Kitwood (1996) have mapped the cultural and experiential dimensions of dementing illness, and psychologists such as Miesen (1999), drawing on clinical practice, have shown how honoring and responding to utterances-however fragmentary-and forging emotional attachments with those affected can mediate and often buffer the anxiety and sadness that accompany dementias.

Furthermore, it is apparent that research on the onset and course of dementia is enhanced when explicit attention is paid to the socioenvironmental context of care. Researchers and clinicians alike accept the utility of Lawton's (e.g., 1980) path-breaking work, a major premise of which is that competence does not inhere in the person alone but, rather, is adaptive, shaped by the degree of fit between individual capabilities and proximate challenges and supports (both physical and social). This model is one of environmental press (Lawton, 1980; see also Olness and Loue, 2004; Schaie and Willis, 1999). In policy terms, this premise has been central to claims that residential care/assisted living (RC/AL) is an optimal setting for dementia care: As Morgan, Eckert, Piggee, and Frankowski (2006), Carder (2002), and Zimmerman, Sloane, and Eckert (2001) discuss, residential care promises to support a more flexible social model, in which residents' privacy, autonomy, dignity, and self-determination can be preserved for as long as health permits. Ideally, these conditions enhance identity support, which is central to quality of life for residents and their loved ones (Wellin & Jaffe, 2004). However, whether and how residents in fact perceive and exercise these benefits has only begun to be explored empirically. …

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