The literature on illness experience burgeoned in the past decades with prominent sociologists articulating the experiences of living with various chronic illnesses. Recently, this literature expanded to the topic of living with dementia and other cognitive impairments. This dissertation melds general literatures on illness experience, stress research, and the experience of dementia, and proposes the sociologically based Stress Process Model of Chronic Illness. Background variables, illness-related variables, role and intrapsychic strains related to the illness, and social support and religiosity mediators are considered as predictors of well-being and decision-making involvement. This model is broad in scope and potentially applicable to various chronic illnesses.
The proposed model was tested with data from 211 individuals with dementia (IWDs). Findings support this model as an appropriate conceptualization for considering how background-and-context, primary stressor, secondary strain, and mediator variables influence outcomes. The model predicting quality of life (QoL) indicates that individuals with higher QoL scores are White, have a spousal caregiver, have fewer months since their diagnosis, exhibit more memory problems, have fewer depressive symptoms, have fewer negative and more positive interactions with their caregiver, and place more importance on autonomy / self-identity. Results indicate that IWDs more involved in decision making are female, have more education, have a non-spousal caregiver, have fewer months since their diagnosis, have fewer depressive symptoms and ADL problems, and place more importance on autonomy/ self-identity. The model predicting depression indicates that individuals with more depressive symptomatology have more health conditions, more negative interactions with their caregiver, and feel that their caregiver does not agree with their daily care wishes.
This dissertation expands our knowledge about illness experience by proposing and testing a model that is applicable to populations with chronic illness. The research is sociological in scope as it expands and links illness experience and stress research. Linkages between model components serve as potential points of intervention to assist IWDs and their caregivers. Older adults are the most likely to suffer from chronic illnesses, and Aging and Disability Resource Centers (ADRCs) can use this model as a guide for determining resources for these individuals.