Family caregiver challenges in dementia care in a country with undeveloped dementia services

Author version made available in accordance with Publisher's copyright policy. This is the accepted version of the following article: Wang J., Xiao L.D., He G.-P. & De Bellis A. (2014) Family caregiver challenges in dementia care in a country with undeveloped dementia services. Journal of Advanced Nursing 70(6), 1369–1380. , which has been published in final form at [doi: 10.1111/jan.12299]. In addition, authors may also transmit, print and share copies with colleagues, provided that there is no systematic distribution of the submitted version, e.g. posting on a listserve, network or automated delivery.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

The Experience of Paid Family-Care Workers of People with Dementia in South Korea

© 2018 Korean Society of Nursing Science, Published by Elsevier Korea LLC. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).Purpose: The South Korean government introduced the universal long-term care insurance program in 2008 that created a new employment category of “paid family-care worker” to assist the elderly with chronic illnesses including dementia. The aim of this study was to understand the lived experience of paid family-care workers of people with dementia in South Korea. Methods: The study was a qualitative research design underpinned by interpretive description principles involving eight paid family-care workers. The participants were recruited by attaching the advertisement flyer in a notice board of an educational facility for paid family-care workers. Results: Paid family-care workers struggled to manage the behavioral and psychological symptoms of their care recipients. Their workloads created physical, emotional, social, and financial burdens. However, the care-giving activities were encouraged through their sense of responsibility, filial piety, and personal religious beliefs. Financial subsidies from the government and help received from others were also identified as encouragements. The education course provided to them assisted them to improve their dementia-care capabilities. Conclusion: Understanding paid family-care workers' lived experience in dementia care in South Korea assists with the identification of their educational needs and level of support they require to improve dementia care in the home care environment. A number of suggestions are made to increase paid familycare workers' knowledge, clinical skills, and job satisfaction to reduce their burdens and work-related incidents, such as challenging behaviors from those being cared for

Factors contributing to caregiver burden in dementia in a country without formal caregiver support

This items is under embargo for 12 months from the date of publication according to Publisher's copyright policy. This is an Accepted Manuscript of an article published by Taylor & Francis in Aging & Mental Health on 31 Mar 2014, available online: http://wwww.tandfonline.com/10.1080/13607863.2014.899976Objectives: To investigate caregiver burden in dementia and explore factors associated with different types of burden in a country without formal caregiver support using a province in China as a case.Method: Cross-sectional questionnaire survey was used to collect data. One hundred and fifty-two family caregivers of people with dementia in community settings were recruited from 2012 to 2013 using convenience sampling. Objective burden was measured by caregiving hours and dementia-related financial burden. Subjective burden was measured and analysed using the Caregiver Burden Inventory and the Neuropsychiatric Inventory-Questionnaire. Multivariate regression models were employed to analyse factors associated with each type of subjective burden.Results: Five types of subjective burden were measured by the Caregiver Burden Inventory, namely, physical burden, emotional burden, time-dependence burden, developmental burden, and social burden. Caregiver distress, as a subjective burden, was measured by the Neuropsychiatric Inventory-Questionnaire and reported by relating to the severity of care recipients’ behavioural and psychological symptoms of dementia. This caregiver cohort showed a high level of physical, time-dependence, and developmental burdens, but a low level of emotional and social burdens. Factors contributing to each type of subjective burden measured by the Caregiver Burden Inventory differed from each other.Conclusion: The high level of objective and subjective burdens identified in this study suggests that government-funded formal caregiver support should be established and services should be designed to target different types of burdens and factors contributing to these burdens

Family caregiver challenges in dementia care in Australia and China: a critical perspective

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Background: Both 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. Methods: Giddens’ 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. Results: In 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. Conclusions: Dementia 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 mediate

Cross–cultural care program for aged care staff : workbook for staff

This publication is licensed under a Creative Commons Attribution 4.0 International (CC BY 4.0) license .Cultural and linguistic diversity between residents and staff is significant in residential aged care homes in Australia. Residents are from over 170 countries with 31% born overseas and 20% born in a non-English speaking country (AIHW, 2016). Staff who care for residents are also from culturally and linguistically diverse backgrounds. It is estimated that 32% of staff were born overseas and 26% were born in a non-English speaking country (Mavromaras et al., 2017). The majority of overseas-born residents come from Europe while the majority of overseas-born staff come from Asian and African regions (Mavromaras et al., 2017, AIHW, 2016). This diversity generates many opportunities for aged care organisations to address equitable and culturally appropriate care for residents. However, the diversity can also be a challenge to achieving high-quality care for residents and to staff cohesion. The program is developed from a 2-year action research project entitled ‘Developing the multicultural workforce to improve the quality of care for residents’. The project is funded by the Australian Government Department of Health under the ‘Service Improvement and Healthy Ageing Grants’ in 2015. During the project life, the project team worked with residents and staff in four participating residential aged care homes to implement and evaluate the program. The details of the research project are presented in the project final report (Xiao et al., 2017). The program has been adapted into an online self-learning program using the Massive Open Online Course (MOOC) and is free to access. Instruction for accessing the online program is attached as Appendix 1: Instructions for accessing the online Cross-cultural Care Program for Aged Care Staff

Multicultural workforce development model and resources in aged care

This publication is licensed under a Creative Commons Attribution 4.0 International (CC BY 4.0) license. Full-text embargoed for 24 months until 31 Dec 2019

Developing the multicultural workforce to improve the quality of care for residents: Final report

This publication is licensed under a Creative Commons Attribution 4.0 International (CC BY 4.0) license. This report is made available following 24 month embargo from date of publication (November 2017).Cultural and linguistic diversity between residents and staff is significant in residential aged care homes in Australia. The diversity generates many opportunities for aged care organisations to address equitable and culturally appropriate care for residents. However, diversity can also be a challenge to achieving high-quality care for residents and to staff cohesion. This final report describes the project: ‘Developing the multicultural workforce to improve the quality of care for residents’. This project was funded by the Australian Government Department of Health under the ‘Service Improvement and Healthy Ageing Grants’ in 2015. Flinders University, AnglicareSA Inc. and Resthaven Inc. formed the consortium to undertake the project led by Flinders University. Participating sites from these organisations included four residential aged care homes (RACHs). The aim of the project was to work with stakeholders to develop, implement and evaluate a multicultural workforce development model (MCWD), an education program and resources to support the implementation of the model. A Critical Action Research approach was applied to achieve the aims and objectives described above. The project was completed in two phases over a 2-year period. In phase one (12 months), the project team undertook a study of residents and staff experiences in cross-cultural care services in the four participating sites. Findings from the literature review and the study informed the development of the MCWD model and resources to support the implementation of the model. In phase two (12 months), a site champion in each participating site was appointed by their organisation to implement the MCWD model, cross-cultural care toolkit, cross-cultural care self-reflection toolkit and cross-cultural care program for aged care staff. The implementation of the Multicultural Workforce Development (MCWD) Model and resources using the site champion model was associated with improved resident satisfaction with cross-cultural care services, staff perceptions of cultural competence, and experiences in cross-cultural interactions with residents and co-workers. There is a need to embed and sustain the MCWD model in residential aged care homes using the site champion model

Cross-cultural care program for aged care staff : facilitator manual

This publication is licensed under a Creative Commons Attribution 4.0 International (CC BY 4.0) license .Cultural and linguistic diversity between residents and staff is significant in residential aged care homes in Australia. Residents are from over 170 countries with 31% born overseas and 20% born in a non-English speaking country (AIHW, 2016). Staff who care for residents are also from culturally and linguistically diverse backgrounds. It is estimated that 32% of staff were born overseas and 26% were born in a non-English speaking country (Mavromaras et al., 2017). The majority of overseas-born residents come from Europe while the majority of overseas-born staff come from south Asian and African regions (Mavromaras et al., 2017, AIHW, 2016). This diversity generates many opportunities for aged care organisations to address equitable and culturally appropriate care for residents. However, the diversity can also be a challenge to achieving high-quality care for residents and to staff cohesion. The program is developed from a 2-year action research project entitled ‘Developing the multicultural workforce to improve the quality of care for residents’. The project is funded by the Australian Government Department of Health under the ‘Service Improvement and Healthy Ageing Grants’ in 2015. During the project life, the project team worked with residents and staff in four participating residential aged care homes to implement and evaluate the program. The details of the research project are presented in the project final report (Xiao et al., 2017). The program has been adapted into an online self-learning program using the Massive Open Online Course (MOOC) and is free to access. Instructions for accessing the online program are attached as Appendix 1: Instructions for accessing the online Cross-cultural Care Program for Aged Care Staff