The need for a specialized clinical regimen for patients with dementia who require palliative care has only recently been recognized. Structured approaches to palliative care are not well developed. The recognition and treatment of pain is an important part of this management risk. However, pain is consistently underdiagnosed and undertreated in this population. A factor contributing to this has been a lack of appropriate tools to help recognize and document pain. This study sought to develop and validate an easy-to-use pain scale for use in residential aged care homes. The tool was developed with residents with end- or late-stage dementia who were unable to articulate their needs, identified by the registered nurses who knew them. Results showed that following pain-relief intervention the average pain score recorded using the scale fell by more than half. A paired Student's t-test showed the reduction to be highly significant (P<0.001). Validity and internal reliability, assessed by calculating Gamma and Cronbach's alpha, were found to be satisfactory. Qualitative evidence gathered from users of the scale indicated that it was considered a useful clinical device that could be completed within one minute. Further analysis of the use of the scale in clinical settings, testing of inter-rater reliability and examination of the limitations found in this study will commence early in 2004.

Aims. To examine socially, culturally and politically constructed factors affecting family caregiver practice in dementia care, and to identify possible changes in a country with undeveloped dementia services. Background. In China and many other low-and middle-income countries, social transformations are weakening the family care model, which has an impact on the population with dementia. Exploring the challenges that caregivers face may help the international healthcare community to improve dementia services. Design. A double hermeneutic approach informed by Giddens' Structuration Theory was used. Methods. In-depth semi-structured interviews with 23 family caregivers of people with dementia were conducted in 2012. The interviews were audiotaped, transcribed and analysed. Findings. Analyses revealed three consequences of socially constructed factors in dementia care, which constrained caregiver practice. First, caregivers were unable to manage behavioural and psychological symptoms of dementia. Untreated aggressive behaviours caused harm to the person with dementia and endangered the caregiver and the public. Second, the burden on the primary caregiver was evident and caregivers received limited support. Third, there was little coordination between primary and specialist care services for people with dementia. On critical reflection of potential changes that could improve dementia services, caregivers suggested that community nurses have a leading role in coordinating dementia services and supporting caregivers. Conclusion. Relying on family caregivers to care for people with dementia without the prevision of dementia services by the public healthcare system generates negative health outcomes for both care recipients and caregivers. The nursing workforce should be developed to support dementia services.

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BackgroundBoth Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries.MethodsGiddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey.ResultsIn total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China.ConclusionsDementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like China. In Australia, dementia services need to have more components of preventing or reducing caregivers’ subjective burden. As subjective burden is mediated by culture, caregiver support mechanisms should consider caregivers’ needs associated with their cultural values.

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