In 2012, semi-structured in-depth interviews were conducted with 23 family caregivers of people with dementia. Untreated aggressive behaviors harmed the person with dementia and endangered the carer and the public. Third, there was little coordination between primary and specialist care services for people with dementia.
Two-thirds of people with dementia live in low- and middle-income countries, including China, which have underdeveloped dementia service systems and underreported caregiver challenges. Government-funded dementia services must be seen as a viable solution to support the rapid increase in people with dementia. About two-thirds of people with dementia live in low- and middle-income countries (LMIC) (Alzheimer's Disease International 2009).
People with dementia are increasingly dependent on family carers to provide daily care and to maintain their dignity (Sousa et al. 2010, Chien & Lee 2011). The need for care for people with dementia can be further aggravated by co-morbidities and complications.
THE STUDY
Social structures and human actions (or agencies) are not separated as 'a dualism', but are 'a duality'; they are inseparable and shape each other (Giddens 1984, p.25). The figure summarizes the relationship of 'duality' by means of human reflex circuits based on the understanding of the theory and is modified from the previous work of one of the authors (XY). This study used a dual hermeneutic approach, based on the work of Giddens, to address the stated aims.
A 'double hermeneutic' is described by Giddens (Giddens 1984, p.374) as 'the intersection of two frames of meaning as a logically necessary part of the social sciences, the meaningful social world as constituted by laypeople and the metalanguages invented by social sciences. scientists'. Double hermeneutics is viewed as a critical hermeneutic, a form of critical methodology used to critique structural domination and illustrate ways to reform social structures. Twenty-three primary family caregivers with at least one year of experience were recruited from February to August 2012.
These caregivers were recruited through geriatric clinics in the three major university teaching hospitals in China. Nurses working in the geriatric clinics helped distribute recruitment letters to potential participants. Caregivers who met the selection criteria and were willing to participate in the interview were asked to provide their data.
Before the interview, medical records and diagnosis certificates for people with dementia were reviewed. All participants were given a description of the study and their role and expectations as a participant. Data analysis and interpretation was based on Giddens' four levels of understanding of how social structures enable and inhibit human action (Giddens 1984, p.327). These were modified into three levels to fit the context of this study and included: 1) identification of the caregiver's awareness of conditions affecting their performance; 2) to analyze unintended consequences and unrecognized social structures; and 3) identifying social structures that could improve caregiver performance in dementia care.
Three methods were used to achieve trustworthiness in the study: (1) Participants were invited to review and edit their transcripts, and 16 participants completed the transcript check; (2) Chinese transcripts were translated into English, and the translations were verified by two bilinguals; and (3) Codes and themes were checked within the research team.
FINDINGS
Most caregivers took people with dementia to doctors who prescribed antipsychotics to treat aggressive behavior. In this study, nurses were not involved in caregiver education or care coordination regarding behavioral and psychological symptoms of dementia management in a community center. Most people with dementia lived in "empty nests" and relied primarily on their spouses to care for them.
Furthermore, a significant physical burden was associated with caring for people with dementia who were completely dependent on carers, especially when the carer was also older. In cases like this, or in the case of older couples who do not have children to help, maintaining basic hygiene and protecting the dignity of the people with dementia would not. Because of this lack of trust in the health professionals at the Community Care Centre, most older people with chronic conditions, including dementia, bypassed the Community Care Center and sought medical treatment from specialists in large hospitals.
In this study, only 1 of the 23 people with dementia took medication specifically for dementia. Due to reduced mobility and cognition in people with dementia and difficulties in getting an appointment with specialists in larger hospitals, most carers expressed a preference for using the local health service. Most spouses and people with dementia were isolated at home and had limited contact with others.
They sought interactions with others for the health and well-being of both people with dementia and themselves. The community center should establish a rehabilitation center so that we can take people with dementia for rehabilitation activities and psychological counseling [P11]. Most carers had few opportunities to socialize with other carers and share their experiences of caring for people with dementia.
The ways in which we can meet carers' expectations are discussed in the next section.
DISCUSSION
Most carers in the study learned about dementia care through their own experience and were very keen to learn more, motivated by the challenges they faced. The prevalence of behavioral and psychological symptoms of dementia is estimated to be higher in LMIC due to the underdevelopment of aged care facilities. Behavioral and psychological symptoms of dementia can be treated through effective intervention by dementia specialists, general practitioners and geriatric nurses in collaboration with relatives (Brodaty et al. 2003, Callahan et al. 2006, Johnson et al. 2012).
The untreated behavioral and psychological symptoms of dementia identified in this study reveal two structural problems in carers' practice that require policy intervention: the absence of government-funded behavior management services (a key resource) and the lack of coordination between primary and specialist care. services (there are no rules governing coordinated care. This study found that financial burden is a major concern for caregivers, preventing them from seeking treatment for behavioral and psychological symptoms of dementia. We also found a lack of resources in the primary care setting, as evidenced by carers visiting a community care center when seeking medical help for people with dementia.
Addressing this issue requires government investment in the workforce and equipment in community care centers to meet caregiver demands on locally available dementia care services. In this study, caregivers showed a clear knowledge gap regarding the causes and triggers of behavioral and psychological symptoms of dementia, and displayed false beliefs. The findings are consistent with previous studies reporting a high level of under-preparedness of family caregivers in countries where dementia education programs are available but not easily accessible or not relevant (Brodaty et al. 2003, Ducharme et al. 2011, Gallagher-Thompson et al. 2012).
Poor health literacy is associated with poor health and nonadherence to medical treatment (U.S. Department of Health and Human Services 2009, Lee et al. 2010). A body of evidence shows that nurse-led carer education is a crucial component of non-pharmacological intervention for behavioral and psychological symptoms of dementia, through which carers learn to identify behavioral triggers and manage them in collaboration with health professionals (Johnson et al. 2012, Wolfs et al . 2012). These clinics are designed to provide early diagnosis, caregiver education, dementia care and timely intervention for behavioral and psychological symptoms of dementia and to prevent dementia-associated psychiatric crises (Greening et al. 2009, Lee et al. 2010).
Failure to intervene in the poor health conditions of people with dementia can maintain or worsen existing health inequalities in a society determined by social status (World Health Organization 2008, World Bank 2009).
CONCLUSION
Therefore, the findings of the current study represent only one of many critical perspectives on how underdeveloped dementia policies and services affect family caregiver practices. The researchers acknowledge that there may be other interpretations of the problem under study, suggesting that further research is needed in this area. Decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia.
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