Browsing by Author "Corazzini, Kirsten N"

Problem: Dementia has become a global public health priority. A total of 47 million people worldwide lives with dementia, and nearly 60% of whom live in low-and middle-income countries (LMIC). The fastest growth of population living with dementia takes place in China. In addition, the number will be greater if we take persons with mild cognitive impairment (MCI) into account. The estimated prevalence of MCI and dementia among older adults in China is between 13% and 20%. My population of study are persons with cognitive impairment (PWCI) and their informal care partners, including those living with MCI or mild dementia. It is estimated that over 80% of the population with cognitive impairment in China are living in the community and receiving care from their informal caregivers.

There is a severe lack of residential dementia care service and dementia management support at community level in China. The lack of supportive resources and quality services in China posed severe challenges to PWCI and their informal care partners. The complexity of PWCI and their care partners’ changing experience of living with cognitive impairment is interpreted in the dynamic nature of their spousal relationship and relationship with others, patterns of communication, daily activities and care during the extended period of cognitive decline. The purpose of my dissertation is to describe the cultural relevance of person-centered dementia care in home and community-based setting and provide empirical evidence for understanding the changing experience of living with cognitive impairment through the dyadic experiences of PWCI and their spousal care partners.

Methods: We used semi-structured open-ended interviews (Ashton, 2014) to explore the experiences and perceptions of PWCI and their care partner’s, regarding living with cognitive impairment, working with each other, communicating with each other and taking care of each other. We then applied the person-centered dementia care framework, and Nolan’s senses framework to the analysis of the interviews to understand their experiences and perceptions. We conducted a longitudinal qualitative study of a subset of 6 dyads of PWCI and their care partners over three years with three data collection time points (2015 to 2017). We employed the approach of prospective QLS in this study to capture the complexities of relationships, experiences, and the impact on health policy.

Findings: Person-centered care processes are a means of establishing and nurturing the healthy relationships between PWCI and their care partners. Our findings suggest that PWCI and their spouses experience the six senses through the person-centeredness in their daily interactions with each other. It also indicated successes and challenges to being person-centered early in the disease and identified their unmet needs as well as barriers and facilitators to improve their well-being. PWCI and their care partners used strategies to adapt to the changes and cope with challenges. The dyads experienced a lack of sense of continuity of their relationships, communication patterns, and daily life and activities. PWCI and their care partners have a lack of access to clinical expertise and quality care services in the home and community-based settings and formal LTC settings. It is acknowledged that PWCI deserves opportunities to be engaged in meaningful social relationships with others. It is crucial to help PWCI and their care partners choose a more positive attitude and nurturing the belief that there is a significant meaning in the journey of living with cognitive impairment. A lack of knowledge of the disease, treatment, and caregiving can potentially negatively affect PWCI and their care partners’ coping and overall well-being throughout the process of living with cognitive impairment. Our findings also provided many examples of when care partners respected PWCI’s choices, regarding caregiving as assisting and guiding PWCI to help themselves instead of telling them what to do, resulting in a profound positive impact on the well-being of PWCI and their care partners and most importantly, on their spousal relationships.

Problem: The demand for residential care facilities is high and still increasing in China. However, the quality of care in these facilities is concerning due to lack of quality control and regulations and insufficient funding. To achieve high-quality care in these facilities, knowledge is needed about residents’ care needs and current efforts to address residents’ care needs in these facilities. Studies from other countries have reported the high prevalence of functional limitations and pain among residents in residential care facilities. This suggested that residents’ care needs relating to functional limitations and pain are potentially substantial in residential care facilities. Therefore, this dissertation aimed to: (1) synthesize existing literature on residents’ care needs and current care, and (2) describe residents’ care needs related to functional limitations and pain.

Methods: Chapter 2 describes a systematic literature review that synthesized evidence on resident characteristics and care needs and staff characteristics and care, and defines areas where research is needed. Chapter 3 describes a qualitative exploratory study that described residents’ challenges with daily life in Chinese residential care facilities. Chapter 4 describes a mixed-method, observational study that explored residents’ descriptions of challenges with pain and functional limitations.

Results: The systematic review revealed that frontline workers received little systematic training for resident care. Chinese residential care facilities had few qualification standards for staff preparation for their roles in these facilities. Also, chronic conditions were prevalent among residents in Chinese residential care facilities. The two observational studies provided three major findings: (1) residents reported significant care needs with functional limitations and pain; (2) residents adopted a substantial number of self-management strategies to address these care needs; (3) residents faced significant barriers when adopting these self-management strategies, including inaccessibility of health care, unsupportive facility policies and administrators, and lacking staff care.

Summary: Knowledge from this dissertation enhances understanding of residents’ care needs with physical limitations and pain in Chinese residential care facilities. This knowledge informs changes to achieve high-quality care in these facilities. This dissertation provides important implications for practice and policy, including: (1) building a resident assessment system with valid tools to comprehensively capture residents’ care needs with functional limitations and pain; (2) incorporating into staff training programs knowledge and skills about how to manage functional limitations and pain;( 3) developing facility policies to support residents’ self-management and frontline workers’ strategies; (4) integrating health care into residential care facilities; (5) modifying physical environment to be resident-centered.