title: Knowledge, attitudes, and policy recommendations of healthcare professionals and expectations of family carers for dementia care in China
Creators: name: Zhao, Wenhong
Publisher: name: Griffith University
Year: 2021
Subjects: subject: Dementia
subject: dementia care
subject: Family Carers
subject: China

description: Background Dementia is a condition that is estimated to have affected over 50 million individuals globally in 2019. China has the most significant number of people with dementia worldwide, with the prevalence of dementia for people aged 65 and over at 5.6% in 2019. Although the Chinese government has made efforts to establish a three-tier long-term care system (i.e., home care, community care, and institutional care), the undeveloped care system in China cannot meet the rapidly increasing needs of people with dementia. Currently, the health care system in China is composed of three tiers: tier 1 (primary care services), tier 2 (secondary hospitals), and tier 3 (tertiary hospitals). Due to the minimal number of specialists and facilities to provide dementia examination and diagnosis at primary and secondary health services, a formal diagnosis and comprehensive treatment are primarily available in public tertiary hospitals in China, particularly in neurology, geriatric, and psychiatric departments. However, no cross-sectional studies have been conducted to explore dementia knowledge and attitudes of healthcare professionals working in these departments. Moreover, there are no national dementia plans in China, and there is very little evidence about policy recommendations regarding dementia care from the perspectives of healthcare professionals working with people with dementia in acute care settings in China. In China, the majority of people with dementia are taken care of by their family members. Family carers experience challenges due to the progressive nature of dementia, including difficulties in managing the behavioural and psychological symptoms of dementia (BPSD), and the decreased interaction with their relative with dementia. Previous research has investigated family carers’ burden, financial difficulties, and experiences of caring for a relative with dementia. However, little is known about family carers’ expectations of dementia care and their care delivery needs. Objectives This research aimed to explore dementia knowledge and attitudes towards dementia care of doctors and nurses working in acute care settings where people with dementia are cared for, to identify what doctors and nurses recommend regarding a national plan of dementia care, and to examine family carers’ expectations of what they perceive as quality care for their relative with dementia in Hebei Province, China. Methods A mixed methods approach was employed using two phases of a sequential explanatory design. The first phase was a quantitative survey using questionnaires, and the second was a qualitative phase using semi-structured interviews. Using a self-report questionnaire, the quantitative cross-sectional study was undertaken both in hard copy and online in 11 public tertiary hospitals across seven cities in Hebei Province, China between April, and December 2019. Participants of the questionnaires were doctors and nurses working in acute care settings where people with dementia were cared for (i.e., neurology, psychiatric, and geriatric departments). Convenience sampling was used. The instrument included demographic information, three open-ended questions, the Chinese version of the Alzheimer's Disease Knowledge Scale (ADKS), and the Chinese version of the Dementia Attitudes Scale (DAS). Data analysis was carried out using IBM SPSS Statistics for Windows, Version 25.0. Descriptive analyses were conducted for all variables. At the bivariate level, Spearman’s correlations or Pearson’s correlations were employed to determine continuous variables associated with ADKS and DAS. Variables identified as significant predictors of ADKS and DAS scores at the bivariate level were selected for the standard multiple regression models. Statistical significance was set at an alpha level of .05 (p &lt; .05). The qualitative study was comprised of two parts: (1) interviews with family carers of people with dementia in China regarding what they perceived as quality dementia care and what they expected of dementia care, and (2) interviews with doctors and nurses working with people with dementia in acute care settings in China about their recommendations for national dementia plans. Purposive maximum variation sampling was used to recruit participants at three public tertiary hospitals in Hebei Province, China. Healthcare professionals working in care settings where people with dementia are cared for (i.e., neurology, psychiatric, and geriatric departments) in public tertiary hospitals and those who had more than 6 months’ dementia care experience were included in the interviews. In addition, healthcare professionals from various backgrounds, such as different years of experience working with people with dementia, education levels, and professional grades were considered for recruitment to seek a variety of views. Primary family carers aged 18 or over, without cognitive impairment or communication difficulties were included. Family carers who were taking care of people with dementia at different stages were selected. In total, 21 family carers of people with dementia and 24 healthcare professionals were recruited. Thematic analysis was employed to analyse the qualitative data. A combination of inductive and deductive approaches were used for the qualitative data analysis. Results There were 603 respondents completing the quantitative questionnaire. The overall mean score for the ADKS was 20.7 (SD = 2.9) out of a maximum possible score of 30, demonstrating respondents’ limited knowledge of dementia. The overall mean score for DAS was 91.3 (SD = 15.9) out of a maximum possible score of 140. Standard multiple linear regression analysis revealed that the highest level of education, the experience of searching for dementia-related information, and willingness to receive dementia training or education were significant predictors of knowledge scores. The department, the experience of working with people with dementia, length of dementia care, interest in dementia care, and training type were significant predictors of attitude scores. Four themes were identified from the interviews with twenty-four healthcare professionals: community dementia care, hospital dementia care, nursing home dementia care, and social support for dementia care. Healthcare professionals were not well trained to manage dementia care. However, they had ideas about how the health care system in China could be improved, including the development of community daycare centres, specialised dementia care units in hospitals, and specialised nursing homes. Four themes were identified from the twenty-one family carers’ interviews: challenges of care, care as a duty involves a lack of knowledge, support for carers, and expectations of dementia care. The family carers reported that they received minimal dementia care support, and they held little hope of receiving support. However, most carers expressed their expectations, such as financial support from the government and respite care services from the community. Conclusions Healthcare professionals working in care settings where people with dementia are cared for in acute care settings in China have limited knowledge of dementia and tend to have a low level of positive attitude towards dementia care. To address these, education and training in dementia care should be integrated into undergraduate nursing and medical programmes and be provided for healthcare professionals after commencing employment. In addition, there is a need for the development of community services and specialised dementia care services to meet the increasing needs of people with dementia. Moreover,an integrated support network is needed, where policymakers and stakeholders work collaboratively and contribute to the formulation of effective dementia plans. Outline of the Thesis This thesis includes eight chapters. Chapter 1 outlines an introduction to the thesis, which provides an overview of the research background including an ageing population, prevalence, awareness, and diagnosis of dementia, dementia care in China, plans related to dementia care, and the significance of the study. Chapter 2 presents a published integrative literature review of healthcare professionals’ knowledge of dementia and their attitudes towards dementia care, and family carers’ perceptions of dementia care in mainland China, and an evidence update of the literature review. Chapter 3 describes the study methodology that outlines the theoretical framework, the research aim, research questions, research design, data collection and analysis, and ethical considerations. Chapters 4 to 6 present two published papers concerning healthcare professionals’ knowledge and attitudes towards dementia care, recommendations for a national dementia plan in China, and one submitted manuscript about family carers’ expectations of dementia care in China. Chapter 7 summarises the main findings and presents a critical discussion and integration of quantitative and qualitative findings in relation to dementia education and training needs, government policy, family dementia care, community dementia care, hospital dementia care, and long-term care. This chapter also links these findings to the conceptual framework and relevant literature and presents the strengths and limitations of the thesis. The final chapter provides conclusions and implications for clinical practice including improving dementia education and training and developing the social and health care system, the supporting system for people with dementia and their family carers, and healthcare education to promote the awareness and understanding of dementia and improve support and healthcare education for family carers.