This is a competing supplemental application (revision) for the currently-supported research grant entitled, """"""""Autonomy in Assisted Living: A Cultural Analysis"""""""" (1R01 AG032442). The parent grant is examining issues of autonomy in 6 assisted living (AL) settings in Maryland. The ALs in which we are currently conducting research are generic settings. Some ALs, called dementia care units (DCUs), provide specialized dementia care. Three of the six AL sites in which we are working have DCUs, but these units were purposefully excluded from our current work. It has become apparent to us, since entering the field and engaging in more intensive discussion with our AL partners, that DCUs are part of the larger story of autonomy in AL. In order to best understand issues of autonomy in AL, we must extend our work to these DCUs. The DCU becomes home for those whose behaviors may be deemed as inappropriate or """"""""too autonomous"""""""" for generic AL as well as for those who are significantly medically and cognitively impaired. Key questions concern how the local construction of autonomy leads to the decision to place an AL resident in a DCU and how autonomy is experienced in such settings. We are proposing an 18-month expansion study to conduct participant observation and ethnographic interviews in the three DCUs, to correspond in time to the final 18 months of the parent project.
The specific aims of the parent grant are as follows: 1.To examine the meaning and contexts for autonomy as these are worked out in six distinctive assisted living settings [that are not dementia care units];2. To better understand th on-the-ground process of negotiating autonomy in these settings;3. To examine in detail, and based on prior research, resident autonomy in relation to the six emergent themes of autonomy that provide the conceptual framework for this research. We add to this the following specific aim for the new supplement: S1.To extend the specific aims of the parent grant sequentially into three dementia care units (DCUs), over 18 months, using the same framework and methodology as the parent project. The proposed supplement would be undertaken using methods of participant observation, ethnographic interviewing, and focal case studies. Data collection would involve some staff from the parent project, but would also employ one new full-time and one new part-time ethnographic field worker. Data collection procedures would follow those in use in the parent project. Data analysis would be folded into the ongoing team data analysis plan involving team memos, ethnographic field notes, transcriptions of ethnographic interviews, development of a text base, team coding, a variety of validity checks, and several types and levels of data analysis (detailed below).
Researchers have demonstrated that older adults'sense of autonomy - expressed as independence, choice or control - is integral to their health and well-being. This study examines how autonomy, a core American value, is defined, experienced, produced, maintained or thwarted in dementia care units (DCUs), a type of assisted living setting. The proposed research will help inform policy and practice on how DCUs can provide an environment resulting in a better quality of life for the increasing number of adults living wit dementia and moving into long-term care.
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