RUBINSTEIN, ROBERT L.
UNIVERSITY OF MARYLAND BALT CO CAMPUS
USA
Strategies for Managing Persons with Dementia in Assisted Living
NIH (NIA)
379,701.83
01/06/2016
1
Alzheimer's disease & other dementias
Acquired Cognitive Impairment... Aging... Alzheimer's Disease... Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD)... Behavioral and Social Science... Brain Disorders... Clinical Research... Clinical Research - Extramural... Dementia... Health Services... Neurodegenerative... Neurosciences
? DESCRIPTION (provided by applicant): Managing the behavior of residents with cognitive impairment in long-term care can be problematic. Generally, an array of techniques is used by care workers in assisted living to manage disruptive behavior. However, there is one element of managing residents with cognitive impairment that requires additional research and forms the basis of this proposed project. Previously, we have observed that deceit or lying to cognitively-impaired older residents by direct care workers and administrative staff is a common practice. We have observed that lying and deceit seem to occur for several reasons: (1) to facilitate the timely completion of activities or tasks; (2) to simplify the emotional burden on staff of dealing with frequent, repetitive, and sometimes unrealistic questions or disruptive behaviors by residents; and (3) in some instances as part of a general pattern of depersonalizing attitudes directed by staff toward residents. However, little is systematically known about the practices of deceit and lying; their uses, purposes and meanings; their patterns; their range of applications; their moral considerations including the moral burden on staff members by lying; how they come to be known as accepted and acceptable behaviors; their potentially depersonalizing character; and the implications for well-being of deceit and lying when some residents indeed know they are being lied to. The specific aim of this 24-month exploratory ethnographic research is to examine deceit and lying in one assisted living setting in Maryland. We believe that deceit and lying are critically important topics in health care, especially to those who are cognitively impaired. However, it is also quite possible that for some staff members lying may be morally reprehensible. It is possible that forms of deceit and lying may derive from particular cultural models of the cognitively-impaired person utilized by care staff and administrators. Some 15-18 months will be spent conducting ethnographic research and this will be followed by a period of data analysis and writing up (24-months total). Research will be undertaken by a team of experienced field ethnographers and data analysts. Several forms of field data will be collected including field notes based on participant observation (PO); formal ethnographic interviews; informal interviews and conversations; focal case studies; and team memos. Data will be team- coded and entered into a text-base for analysis using Atlas.ti, a software package for managing and analyzing qualitative data. Standard methods of qualitative data analysis will be used. During the data analysis period, staff members will meet frequently to discuss the data and assess the progress of papers that are being written.
PUBLIC HEALTH RELEVANCE: Managing the behavior of residents with cognitive impairment in long-term care can be problematic and may include lying and deceit by direct care staff and administrators towards residents. Little is systematically known about the critically important practices of deceit and lying towards cognitively-impaired residents in assisted living; their uses purposes and meanings; their patterns; their range of applications; their moral considerations including the moral burden on staff members by lying; how they come to be known as accepted and acceptable behaviors; their potentially depersonalizing character; and the implications for well- being of deceit and lying when some residents indeed know they are being lied to. The specific aim of this 24-month exploratory ethnographic research is to examine deceit and lying in one assisted living setting in Maryland; in this research 15-18 months will be spent conducting ethnographic inquiry followed by a period of data analysis and writing up (24-months total).