The purpose of this study was to explore how Korean American caregivers view dementia caregiving and analyze the role of culture in their attitude toward caregiving. Demographic characteristics, stressor factors, social support factors, and cultural factors were examined in the model. Stressor factors were measured by care receivers' problem behaviors, duration of caregiving, and amount of caregiving. Social support factors were composed of the amount of social support and the quality of social support. Cultural factors included level of acculturation, years in the U.S., filial piety, and familism. The study compared a group of spouse caregivers with a group of children providing care in order to investigate the differences in their attitude toward caregiving. In addition, the interaction effect between social support and acculturation on dementia caregiver's attitude toward caregiving was examined. Eighty five Korean American dementia caregivers participated in the survey through a convenience sampling method. Among the Korean American dementia caregivers, child caregivers showed a more positive attitude toward caregiving then spouse caregivers. The effects of social support on caregivers' attitude toward caregiving did not vary with the level of acculturation. Hierarchical multiple regression analysis indicated that, among the study factors including stressor factors, social support factors, and cultural factors, only social support factors contributed significantly to Korean American dementia caregivers' positive attitude toward caregiving. Among the predictors of Korean American dementia caregivers' attitude toward caregivng, the amount of caregiving per day was the most significant variable, followed by the quality of social support and care receivers' problem behaviors. Higher levels of daily caregiving and higher quality of social support were positively related to positive attitude toward caregiving. A higher level of care receivers' problem behaviors was negatively related to positive attitude toward caregiving. Comparison of the beta coefficients from the spouse caregiver group and nonspouse caregiver group revealed that there was a discrepancy of predictors of Korean American caregivers' attitude toward caregiving between the two caregiving groups. The model had a better fit for immigrant spouse caregiver groups indicated by significantly different R² from spouse caregivers and non-spouse caregivers, 85% and 33%, respectively. The results of this study imply the importance of incorporating cultural diversity in social policy. Because of the salient findings in this study, inclusion of content on increasing and enhancing quality of social support is recommended for social work practice with Korean American dementia caregivers.

The main aim of this thesis was to explore the maintenance of personhood and self-image in dementia by way of facilitating collaborative communication between people with dementia and their caregivers/interaction partners. As such, the roles of the person with dementia and the interaction partner were examined in each study within the realms of the ‘Collaborative Personhood Model’. Findings of the first study highlighted strategies used by people with mild to severe dementia to maintain social interactions, to save-face and to maintain and project a sense of self-image in a reminiscence situation. The impact of introducing a family member as the interaction partner in a similar reminiscence-based situation using personal photographs was then explored. The findings of this study indicated that the personal nature of the photographs can create conflict between the person with dementia and her family member. Crucially, these studies illuminated the supportive role that the communication partner must adopt in order to successfully facilitate people with dementia to maximise their retained communication skills. Communication and sense of self was then examined in an individual with very severe dementia with some retained speech. The findings of this study illuminated the potential of imitation in communicating with people at this stage of the illness. These findings were then built upon by exploring the use of Intensive Interaction (II) in a person with very advanced dementia with no retained speech. Findings of this study indicated retained awareness of self and functional communication skills at very late stages of dementia. Finally, this study was expanded using a modified version of II (Adaptive Interaction) in a small group of individuals with very severe dementia with very little or no retained speech. These findings indicated an unprecedented desire and ability to communicate in people with such severe dementia. Taken as a whole, these studies highlighted the adaptive and collaborative role that the interaction partner must adopt in order to facilitate the maintenance of personhood and self-image in people with dementia. More specifically, the interaction partner must adjust to the communicative repertoire that is maintained at each stage of dementia and in each individual. The ‘Collaborative Personhood Model’ represents an attempt to explain how this might be achieved.

published_or_final_version / Social Work and Social Administration / Doctoral / Doctor of Philosophy

This is a sociological ethnography of nine people with dementia living in a private nursing home in central Scotland. It seeks to find an alternative way to view people in this situation, in a field that has been dominated by the medical modeL. By placing the people before the disease of dementia, they can be studied within the same framework as any people. For this study this framework is everyday life sociology with a focus on symbolic interactionism, ethnomethodology and dramaturgy. Additionally, by gaining the subjective perspective, we can get close to understanding meaning for these people. The ethnographic methods I use consist of participant observation and interviews. For analysis I employ NUDIST to structure the data and the thesis. The settng, Lavender Wing of Deer View Grange Nursing Home, provides context for the study. This is a culture of surveillance and routines, which can be restrictive, infantilizing and disabling for residents. Despite this culture research findings are of socially active participants. By examining relationships through an interactional framework three thematic areas developed concerned with emotions, interactions and classification. These thematic spheres demonstrate the emotional self, the interactional self and the generalized self of research informants. The emotional is concerned with the most inner and intimate self, often engaging in backstage intimacies and in thought. Significant others share with the interactional self, in frontstage performances, which are more ritualistic. The generalized self interacts with the generalized other, most often consisting of everyone in Lavender Wing and is concerned with classification and boundarydefinition. Within these spheres the described relationships are fluid and change according to the situation, and how participating actors define it. To engage in intimacies, rituals and form, and to shift between them requires social competence and active participation. People in this study demonstrate these. Despite restrictions they offer resistance to the environment and to dementia. They often make profound and metaphorical statements, to which this ethnography gives voice. Keywords Everyday life; interaction; nursing home culture; people with dementia; resistance; self and others; social competence; surveillance.

Hospitalizations are a major driver of Medicare spending and adverse outcomes for the 5.3 million elderly Americans with dementia. This is a growing problem given aging and longevity trends. Within the home health care setting, about 3.5 million mostly frail elderly Medicare beneficiaries receive care and 27% are hospitalized annually. Estimates of dementia prevalence range from 31 to 60%, yet little is known about the hospitalization of home health care patients with dementia. This study addresses knowledge gaps on the prevalence, characteristics, hospitalization rate and risk factors of these patients, and explores whether hospitalization risk factors are moderated by dementia. A systematic literature review on hospitalization risk factors in the home health care setting was completed and the findings informed the selection of variables and hypotheses for this study. This was a retrospective cohort study and the sample was patients admitted to one large non-profit home health care agency during 2014 (n=57,888). Data were from the Outcome and Assessment Information Set and other home health agency data captured at the start of care. The conceptual framework guiding the analysis was Andersen’s Behavioral Model of Health Services Use. Because more than half of those who would meet clinical criteria for dementia are undiagnosed, the operational definition of dementia for this study was a diagnosis of dementia or Alzheimer’s disease, or an indication of cognitive impairment in the start of care assessment. Multivariable logistic regression was used to identify characteristics of dementia patients and hospitalization risk factors, and to explore dementia as a moderator of hospitalization risk factors. Prevalence of dementia among the study sample was 41.6%. Consistent with prior studies on the general dementia population, older age, Black and Hispanic race/ethnicity, Medicaid eligibility, fall risk, congregate living, more comorbidities, behavioral symptoms, depression, assistance with activities of daily living, and communication disabilities were associated with dementia. However, contrary to prior studies, serious health status, higher need for assistance with activities of daily living, and higher use of health services were negatively associated with dementia. The hospitalization rate for patients with dementia (12.9%) was significantly higher than the rate for patients without dementia (10.7%). Hospitalization risk factors of dementia patients that were consistent with prior studies among home health patients included male gender, Black race, Medicaid eligibility, number of comorbidities, higher need for assistance with activities of daily living, cardiovascular conditions, dyspnea, cancer, diabetes, renal disease, skin ulcers and higher health services use. The moderator analysis found that dementia attenuated the effect of some hospitalization risk factors and had no effect on others. This study was a first step toward better understanding the characteristics and hospitalization risk factors of home health care patients with dementia. Findings from this research can inform practice, policy and future research on home health care patients with dementia.

Video Respite (VR) refers to a series of videotapes designed to engage cognitively impaired individuals so that caregivers can have opportunities for respite. Previous work has evaluated the impact of VR with family caregivers. This study assessed use of VR in special care units (SCUs) for persons with dementia. The foci of the study were 10 SCUs and the individual staff members caring for the residents. The findings suggest VR is more likely to be used in SCUs with relatively higher levels of organization and lower levels of conflict. In addition, resident agitation was found to be significantly lower after VR use. Implications for future evaluation of Video Respite in special care units are discussed. / Graduation date: 1995

The purpose of the present study was to examine the effect of environmental density on the behavior (Disruptive and Nondisruptive) of elderly residents with dementia living on a special care unit. A building project that led to relocation of residents from high density units to units that varied in density (low vs. high) provided a natural context for this study. Disruptive and Nondisruptive behavior are composite variables that together include the full range of behavioral responses. Both are composed of several subvariables. Data were collected using direct behavioral observation using the Environment-Behavior Interaction Code (Stewart & Hiscock, 1992b) and a hand-held computer. The first objective of the study was to examine behavior patterns in relation to density and privacy. This objective was addressed with a quasi-experimental design (Study 1), in which three hypotheses were tested. It was predicted that residents who moved from a high density unit to a low density unit would exhibit a greater reduction in rate of Disruptive behavior (Hypothesis 1) and a greater increase in rate of Nondisruptive behavior (Hypothesis 2), compared to residents in a constant high density condition. It was also predicted that use of Private Time (time spent alone in one's bedroom) would be greater on the low density unit, where residents had private rooms (Hypothesis 3). Results of Study 1 provided support for Hypotheses 1 and 2, in relation to comparisons with the External Comparison Group only. Within subjects analyses provided additional support for Hypothesis 1 (Disruptive behavior). Hypothesis 3 (Private Time) was also supported. The second objective of the study was to explore the perceptions of family and staff caregivers with regard to the effect of the environment on resident behavior. This study was addressed with a qualitative design (Study 2) using the grounded theory method. Participants in Study 2 described the needs of residents with dementia in relation to the physical and social environment, and the outcomes that occurred when these needs were met or not met. (Abstract shortened by UMI.)

This study aimed to model the process and its relevant variables in predicting the willingness in home care and actual institutionalization of older persons with dementia in a Hong Kong context. This was a secondary data analysis of a previous research study which collected 122 sample of Chinese caregivers and their older care recipients with clinical diagnosis of dementia, all of whom recruited from a local NGO. Participants were assessed on a battery of instruments that collected both caregivers and patients' characteristics, including demographic details, patients “physical states affected by dementia, caregivers” perceived burden. The period of study was 12 months, with follow up phone calls on state of care every 6 months. Only a very weak relation was shown between expressed intention to care and actual placement at 12M. Higher odds in intention for home care was significantly predicted by male gender in caregiver gender and lower caregiver burden (ZBI score); ZBI was a total mediator between patients' agitation (CMAI score) and willingness. Higher odds of actual institutionalization was related to the use of day care centre. Results called for a need to carefully distinguish the genuinely effective services in helping to delay nursing home placement; rather than assuming all to be useful. While caregivers training was not popular among current sample, current model showed the importance of caregivers' perceived burden in altering objective environmental stress' effect on caregiving outcomes. While more than half of the current sample was using day care centre, model suggested day care centre could have encouraged placement. More resources should be allocated in programmes that aimed to manage caregivers' stress and cognition. There should also be more promotions to heighten awareness and participation of such programmes amongst caregivers of HKG. / published_or_final_version / Social Work and Social Administration / Master / Master of Philosophy

This study involved 58 persons with dementia living in three rural Canadian long-term care (LTC) facilities. In an attempt to find the relationship between these person's possible pain and levels of agitation, data on five proxy indicators of pain were collected and correlated with scores from the Pittsburgh Agitation Scale (PAS). Results indicated that three of the resident pain measures were significantly correlated with PAS scores. In particular, the palliative consultant pain ratings and the DS-DAT were strongly correlated with total PAS scores, and the five PAS sub-factors. Importantly, the PAS sub-factor of resistance to care was strongly correlated with three of the pain variables. Major study implications include the need for increased use of palliative pain consultants in LTC, and the need for nursing staff to realize that when demented residents resist care, it may be a potential clue that the resident is experiencing untreated pain. / xv, 116 leaves ; 29 cm.

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