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OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.
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BACKGROUND: Physical activity is known to improve psychological and cognitive outcomes. Learning dance sequences may challenge cognition, partnered or group dance may benefit social interactions, and the artistic aspect may improve psychological wellbeing. Dance is an equally effective form of physical activity compared with other structured physical activities to improve physical health, but it is unclear how effective dance could be for psychological and cognitive outcome measures. OBJECTIVE: To systematically review the literature on the effectiveness of structured dance interventions, compared with structured exercise programmes, on psychological and cognitive outcomes across the lifespan. METHODS: Eight databases were searched from earliest records to July 2022. Studies investigating a dance intervention lasting ≥ 4 weeks, including psychological and/or cognitive health outcomes, and having a structured exercise comparison group were included. Screening and data extraction were performed by two independent reviewers at all stages. All reviewer disagreements were resolved by the primary author. Where appropriate, meta-analysis was performed, or an effect size estimate generated. RESULTS: Of 21,737 records identified, 27 studies met the inclusion criteria. Total sample size of included studies was 1392 (944 females, 418 males, 30 unreported). Dance was equally as effective as other physical activity interventions in improving quality of life for people with Parkinson's disease [mean difference 3.09; 95% confidence interval (CI) - 2.13 to 8.30; p = 0.25], reducing anxiety (standardised mean difference 2.26; 95% CI - 2.37 to 6.90; p = 0.34), and improving depressive symptoms (standardised mean difference 0.78; 95% CI - 0.92 to 2.48; p = 0.37). Preliminary evidence found dance to be superior to other physical activity interventions to improve motivation, aspects of memory, and social cognition and to reduce distress. Preliminary evidence found dance to be inferior to other physical activity interventions to improve stress, self-efficacy and language fluency. CONCLUSION: Undertaking structured dance of any genre is generally equally and occasionally more effective than other types of structured exercise for improving a range of psychological and cognitive outcomes. TRIAL REGISTRATION: PROSPERO: CRD42018099637.
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Cognição , Dança , Exercício Físico , Humanos , Dança/psicologia , Exercício Físico/psicologia , Qualidade de Vida , Doença de Parkinson/psicologia , Doença de Parkinson/terapia , Dançaterapia , Saúde Mental , Depressão/terapia , Depressão/prevenção & controleRESUMO
INTRODUCTION: Providing integrated and evidence-based support to individuals and families following a diagnosis of dementia is essential in order to optimise their quality of life and assist them to live well. Memory clinics provide multidisciplinary services specialising in the assessment and post-diagnostic treatment of people with dementia. This study sought to identify current practices, barriers and facilitators to provision of postdiagnostic support and to obtain health professionals' opinion of ideal post-diagnostic support to be offered in Australian memory clinics. METHODOLOGY: This was a cross-sectional qualitative exploratory study. Data was collected from health professionals familiar with the process of diagnosis and post-diagnostic support through two expert panel meetings (n = 22). In addition, 5 focus groups (n = 22) were conducted including health professionals who are employed in Australian memory clinics. Data was collected between October 2020 and November 2021. Reflexive thematic analysis was undertaken. RESULTS: Seven themes and three subthemes were identified under the three topics: Current Practices, Barriers and Facilitators, and Desirable Support. Themes relating to Current Practices were: Tailored Communication and feedback about diagnosis; Prescription of medications and follow-up; and Referrals to health and community services. Themes relating to Barriers and Facilitators were: The structure of the current system; Lack of funding; Lack of resources; Call for government investment. Themes relating to Desirable support were: A key/single point of support; Cognitive interventions; and Counselling and education. CONCLUSION: Post-diagnostic support in Australian memory clinics focused primarily on ensuring people understood their diagnosis, information about postdiagnostic support was provided, and dementia medications were prescribed. There were notable differences in practices in metropolitan compared to regional areas. A key concern was the need for increased funding, particularly to support the establishment of a single point of contact to facilitate continuity of care.
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Demência , Qualidade de Vida , Humanos , Austrália , Estudos Transversais , Demência/diagnóstico , Demência/terapia , Pessoal de Saúde/psicologia , Pesquisa QualitativaRESUMO
BACKGROUND: Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. METHODS: Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people with dementia and carers (secondary audience). The campaign ran between October 2021 and June 2022, with 3-months follow-up. The RE-AIM framework was used for process evaluation. Measurements included surveys and interviews, a log of activities (e.g. webinars, social media posts) and engagements (e.g. attendees, reactions to posts), and Google Analytics. RESULTS: There were 29,053 interactions with campaign activities. More than three-quarters of professionals (n = 63/81) thought webinars were very or extremely helpful. Professionals and people with dementia and carers reported that the website provided appropriate content, an approachable tone, and was easy to use. Following campaign engagement, professionals planned to (n = 77/80) or had modified (n = 29/44) how they communicated the diagnosis and/or provided post-diagnostic information and referrals. Qualitative data suggested that the campaign may have led to benefits for some people with dementia and carers. CONCLUSIONS: Forward with Dementia was successful in terms of reach, appropriateness, adoption and maintenance for professionals, however flow-through impacts on people with dementia are not clear. Targeted campaigns can potentially change health professionals' communication and support around chronic diseases such as dementia.
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Demência , Comunicação em Saúde , Humanos , Austrália , Cuidadores , Apoio Social , Demência/diagnósticoRESUMO
There is a growing demand for interpreter-mediated cognitive assessments for dementia. However, most interpreters lack specialist knowledge of dementia and cognitive assessment tools. This can negatively affect the way instructions and responses are conveyed between clinicians and patients, undermining clinicians' ability to accurately assess for cognitive impairment. This article reports on the co-design of an online dementia training package, MINDSET, which aims to address this gap. Two iterative online co-design workshops were conducted in October and November 2021, using a World Café approach. Sixteen clinicians, interpreters, and multilingual family carers of a person with dementia participated. Based on these workshops, training and assessment materials were developed and tested with 12 interpreters from April to June 2022. The training package comprises online modules: 1) Knowledge of Dementia and Australia's Aged Care System, 2) Briefings and Introductions, 3) Interpreting Skills, 4) Interpreting Ethics, and 5) Cross-cultural Communication. The codesign process highlighted divergent perspectives between clinicians and interpreters on an interpreter's role during a cognitive assessment, but it also facilitated negotiation and consensus building, which enriched the training content. The training is now developed and will be evaluated in a randomized control trial and subsequent implementation study.
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Demência , Multilinguismo , Humanos , Idoso , Tradução , Barreiras de Comunicação , CogniçãoRESUMO
INTRODUCTION: Psychosocial dementia interventions may be less effective when used with populations for whom they were not initially intended. Cultural adaptation of interventions aims to increase effectiveness of interventions by enhancing cultural relevance. Use of theoretical frameworks may promote more systematic cultural adaptation. The aim of this review was to provide a comprehensive synthesis of published cultural adaptation frameworks for psychosocial interventions to understand important elements of cultural adaptation and guide framework selection. METHOD: Five scientific databases, grey literature and reference lists were searched to January 2023 to identify cultural adaptation frameworks for psychosocial interventions. Papers were included that presented cultural adaptation frameworks for psychosocial interventions. Data were mapped to the framework for reporting adaptations and modifications to evidence-based interventions, then analysed using thematic synthesis. RESULTS: Twelve cultural adaptation frameworks met inclusion criteria. They were mostly developed in the United States and for adaptation of psychological interventions. The main elements of cultural adaptation for psychosocial interventions were modifying intervention content, changing context (where, by whom an intervention is delivered) and consideration of fidelity to the original intervention. Most frameworks suggested that key intervention components must be retained to ensure fidelity, however guidance was not provided on how to identify or retain these key components. Engagement (ways to reach and involve recipients) and cultural competence of therapists were found to be important elements for cultural adaptation. CONCLUSIONS: Comprehensive frameworks are available to guide cultural adaptation of psychosocial dementia interventions. More work is required to articulate how to ensure fidelity during adaptation, including how to identify and retain key intervention components.
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Demência , Humanos , Demência/terapia , Competência CulturalRESUMO
Objectives: Australia's ongoing aged care reforms have re-focused service provisions from a provider-driven policy approach to a consumer-directed care focus and redirected residential care subsidies. This study aimed (i) to identify the experiences and perceptions of people involved in the governance of residential care facilities about their management of changes due to new accreditation requirements and funding mechanisms, and (ii) to describe their strategic responses to aged care reform changes. Methods: A qualitative description design used interviews exploring perspectives of Board Chairs, Board Directors, and Chief Executive Officers of two NSW-based residential care organizations. Thematic analysis was conducted of interview transcripts. Results: Four key themes emerged from the data: (1) Business strategies and challenges under reform conditions including the need for business diversification and new approaches, (2) costs incurred by the reforms such as compliance with accreditation requirements, (3) workforce demands: for example maintaining staffing levels and training needs, and (4) expectations about maintaining quality of care. Discussion: Changes were necessary in business models for facilities to remain sustainable, meet staffing needs, and continue to provide services in a complex, changing fiscal environment. These included generating revenue streams other than government subsidies, better clarity about government support and establishing partnerships.
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OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.
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Cuidadores , Demência , Humanos , Demência/diagnóstico , Estudos Transversais , Países Baixos , Reino UnidoRESUMO
PURPOSE: This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population. METHODS: The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis. RESULTS: Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design. CONCLUSIONS: The interplay between a website's content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population.
People with cognitive impairment can provide useful feedback on design and accessibility of websites, and their input should be obtained when developing digital applications for this group.This paper provides practical suggestions for website design features to improve function, legibility and navigation of websites for older people and people living with dementia.
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BACKGROUND: The number of people with dementia in multicultural Australia is rapidly increasing. Despite its culturally diverse population, there is limited research about how people from ethnic minority groups understand and approach help-seeking and support for dementia. The aim of this study is to understand the perceptions of dementia symptoms, help-seeking and support in the Australian Arabic-speaking community. METHODS: This study used a cross-sectional qualitative research design. Individual, semi-structured interviews using projective stimulus techniques were used. Participants were three Arabic-speaking people aged over 70 who were experiencing cognitive changes or dementia symptoms, six carers, and five health or social care practitioners experienced in working with Arab-Australians. Phone or video chat interviews were conducted in either Arabic or English. Interviews were audiotaped, translated when needed, transcribed verbatim and inductive thematic analysis was undertaken. FINDINGS: Seven themes were identified. Participants described dementia as relating to symptoms of confusion and memory loss. Carers and older people believe that when older people are experiencing these cognitive symptoms, they must be cared for primarily by ensuring their happiness and comfort. Barriers to help-seeking and support included a lack of help-seeking due to cultural norms of family orientated care, families are unsure of where to seek help and fear of community judgement. Two ways to facilitate help-seeking and support were to build trust through culturally appropriate support and to educate the community. CONCLUSION: Family, trust and community were identified as central pillars of the Australian-Arabic-speaking community. There is a need to increase dementia literacy in this community particularly around help-seeking and decreasing stigma. Education should be promoted by trusted community members and religious leaders. As the first point of professional contact, general practitioners need to be upskilled to support Arabic-speaking Australians around dementia.
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Demência , Etnicidade , Idoso , Idoso de 80 Anos ou mais , Humanos , Austrália/epidemiologia , Estudos Transversais , Grupos MinoritáriosRESUMO
PURPOSE OF REVIEW: There is increasing recognition of a service gap immediately after diagnosis for people with dementia and carers. This narrative review of models of post-diagnostic support focuses on recent developments and offers suggestions for future development. We present the current evidence for these models and consider the service components they provide against the recommendations of clinical guidelines and principles underpinning ideal post-diagnostic support. RECENT FINDINGS: Models of post-diagnostic support include a short-term support worker, ongoing support worker, centre-based support, primary care management, and specialist dementia clinics. Of these, specialist dementia clinics that include ongoing support workers provide most components of an ideal and timely post-diagnostic support framework, but may be more costly to implement universally. The greatest research evidence is for the benefits of long-term support models, specifically case management, though this does not necessarily include medical care or nonpharmacological interventions. There is sparce evidence for the benefits of short-term support worker models such as dementia advisers for people with dementia and carers. SUMMARY: Further development is needed to create whole-system models of dementia support which meet the needs of people with dementia and their carers, are timely, accessible and equitable, and can be implemented universally.
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Demência , Humanos , Demência/diagnóstico , Demência/terapia , CuidadoresRESUMO
OBJECTIVES: Since 2012, Australia has been undertaking major aged care reforms, moving from a previously service provider-focussed approach to a more consumer-oriented policy direction. There is limited research examining consumer perspectives of residential care in the reform environment particularly with respect to both clients and their families. This study explores the lived experiences of clients and families in residential aged care facilities amid the reform implementation process. METHODS: Using a qualitative descriptive research methodology, individual interviews were conducted with clients and family members (n = 10) about their expectations and experiences of residential care. Participants were drawn from two not-for-profit aged care providers. RESULTS: Two broad themes emerged: (i) entering residential aged care and related issues, with subthemes including reasons for entering, decision-making processes, choice of provider/facility and impact of entering care facilities; and (ii) expectations and experiences of care delivery, with subthemes including issues of staffing, service provision, communication and awareness of living in or through the reform environment. The discrepancy between the experiences of care delivered and expectations of initial and changing care needs being met was a major concern. CONCLUSIONS: This study presents a snapshot of the expectations and experiences of both the client and the family cohorts in residential care under the reform conditions. Adequately addressing the relational and interpersonal elements of care delivery is critical in fulfilling the reforms' consumer-oriented objectives.
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Atenção à Saúde , Instituição de Longa Permanência para Idosos , Idoso , Humanos , Família , Comunicação , AustráliaRESUMO
BACKGROUND: Prior to implementing new programmes or practices, it is essential to understand the context, barriers and enablers to support successful use. The tailored activity programme (TAP) is an evidence-based intervention provided by occupational therapists to support community-dwelling people living with dementia and their carers. The programme was developed in the United States, and although it is not currently available for routine use in Australia, its implementation would address the needs of many Australians with dementia and their carers. AIM: The aim of the study is to understand the perspectives of occupational therapists and their managers regarding barriers and enablers to the delivery and implementation of the TAP in Queensland, Australia. METHODS: A qualitative descriptive methodology was employed. Semistructured interviews were undertaken with occupational therapists (n = 18) who work with community-dwelling people with dementia and their carers, and their managers (n = 10). Participants were recruited from a range of organisations across Queensland, and they were asked about potential barriers and enablers to implementing TAP. Interviews were recorded and transcribed verbatim. Data were mapped using framework analysis whilst remaining open to other themes. FINDINGS: Themes were identified, and facilitating factors included the close alignment of TAP with occupational therapists' scope of practice; their acceptance of, and optimism about the programme and its perceived benefits including improved client outcomes; and an opportunity for occupational therapists to further develop their skills. Managerial support and carers' readiness and willingness to participate were also identified as important factors for success, whereas barriers were cost to clients and the capacity of the occupational therapy workforce to provide TAP. CONCLUSION: Occupational therapists and their managers expressed enthusiasm for TAP and awareness of its likely benefits, while also identifying barriers that will need to be addressed if implementation of the programme is to be successful in Australia.
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Demência , Terapia Ocupacional , Humanos , Austrália , Terapeutas Ocupacionais , Terapia Ocupacional/métodos , Queensland , Pesquisa QualitativaRESUMO
OBJECTIVES: Residents living with dementia in residential aged care facilities (RACFs) have reduced access to, and opportunities for, participation in meaningful activities. This leads to increased social isolation and disengagement. Intergenerational programs aim to overcome these issues. Allied health students piloted a live-intergenerational program (LIP), living onsite at a residential aged care facility (RACF) while volunteering for 30 h a month. The purpose of this study was to explore the impact and practicalities for implementing a LIP in an Australian RACF. METHODS: This qualitative descriptive pilot study was undertaken to explore the diverse perspectives of various stakeholders. Qualitative data were collected during group discussions directed by the nominal group technique with live-in-students. Interviews were conducted with staff members, relatives, facility management and volunteers. All qualitative data were analysed thematically. RESULTS: Two overarching themes emerged. The first, community of care, indicated how care partners and the care context, organisational support and being a live-in-student supported the sustainability of the program. Live-in-students' accessibility promoted opportunities for occupational and social engagement of residents when staff was less available. The second, a collective based on belonging and shared doing, highlighted the program's potential impact and uncovered the development of a collective based on shared belonging. CONCLUSION: The LIP highlighted the potential for new dimensions to person-centred care. The pilot study demonstrated intergenerational contact within aged residential care supported the evolvement of a collective and promoted a social approach for ageing well. Further research is needed to identify the long-term impact of the LIP and explore the feasibility of expanding the program.
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Demência , Instituição de Longa Permanência para Idosos , Idoso , Humanos , Projetos Piloto , Austrália , Isolamento Social , Demência/terapiaRESUMO
OBJECTIVE: To review studies reporting on the effectiveness of psychiatry service delivery for older people and people with dementia in hospital and residential aged care. METHODS: A systematic search of four databases was conducted to obtain peer-reviewed literature reporting original research published since June 2004 evaluating a psychiatry service for older people (aged 60 years and over) or people with dementia in inpatient or residential aged care settings. RESULTS: From the 38 included studies, there was consistent low-to-moderate quality evidence supporting the effectiveness of inpatient older persons' mental health wards (n = 14) on neuropsychiatric symptoms, mood, anxiety and quality of life. Inpatient consultation/liaison old age psychiatry services (n = 9) were not associated with improved depression, quality of life or mortality in high-quality randomised studies. However, low-quality evidence demonstrated improved patient satisfaction with care and reduced carer stress. The highest quality studies demonstrated no effect of psychiatric in-reach services to residential aged care (n = 9) on neuropsychiatric symptoms but a significant reduction in depressive symptoms among people with dementia. There was low-quality evidence that long-stay intermediate care wards (n = 6) were associated with reduced risk for dangerous behavioural incidents and reduced costs compared to residential aged care facilities. There was no effect of these units on neuropsychiatric symptoms or carer stress. CONCLUSIONS AND IMPLICATIONS: The scarcity of high-quality studies examining the effectiveness of old age psychiatry services leaves providers and policy-makers to rely on low-quality evidence when designing services. Future research should consider carefully which outcomes to include, given that staff skill and confidence, length of stay, recommendation uptake, patient- and family-reported experiences, and negative outcomes (i.e. injuries, property damage) are as important as clinical outcomes.
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Demência , Serviços de Saúde Mental , Idoso , Idoso de 80 Anos ou mais , Humanos , Pessoa de Meia-Idade , Demência/terapia , Hospitais , Saúde Mental , Qualidade de VidaRESUMO
OBJECTIVES: This study aimed to conduct a feasibility pilot of the Dementia Lifestyle Coach program; an individual coaching and counselling program for people recently diagnosed with dementia, to help them to adjust to the diagnosis and live well. METHODS: A randomised controlled pilot trial (n = 11) with wait-list control group was undertaken over 12 months. Intervention group participants received immediate personalised counselling from a registered psychologist and monthly support (face-to-face or by telephone) from a trained peer mentor living with dementia. The wait-listed control group commenced treatment 6 months after baseline. RESULTS: Recruitment and delivery of the Dementia Lifestyle Coach program was highly feasible. The program was acceptable, with nine of the 11 participants describing benefits including informational and emotional support, improving their outlook and mood, and family relationships. The planned program was adapted to participants' individual needs. CONCLUSIONS: This small pilot showed that it is feasible to recruit for and deliver a counselling and peer mentoring program for people recently diagnosed with dementia. A larger hybrid implementation randomised control trial should be conducted to evaluate efficacy and effectiveness.
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Demência , Estilo de Vida , Humanos , Projetos Piloto , Desenvolvimento de Programas , Demência/diagnóstico , Demência/terapiaRESUMO
Background: With the number of people with dementia dramatically increasing over time and dementia becoming a major health concern worldwide, scales have been developed to assess the stigma socially attached to this neurodegenerative disorder. There are, however, almost no available methods and assessment constructs for person-centered translation of dementia public stigma scales. Objective: To develop such a method and such an assessment construct by translating the Dementia Public Stigma Scale (DPSS) into standard written Chinese. Methods: We translated the DPSS following three major steps: (1) literal translation and mistranslation identification; (2) panel discussions of items with problematic translations; and (3) the final checking of the translated scale. Informed by the translation and adaptation process, we then developed a method for person-centered translation of dementia public stigma scales. Based on this method and our panel discussions, we finally proposed a tripartite assessment construct for quality evaluation of the translation of dementia public stigma scales. Results: Forward and backward translation did not work sufficiently in dementia public stigma scale translation. Mistranslations were induced by three major causes, including confusion caused by multiple Chinese meanings of the immediate Chinese direct translation, the lack of immediate Chinese direct translation because of varying positive/negative emotions attached to multiple translations, and the lack of culture-specific idioms in Chinese. Based on these factors, we proposed a tripartite dementia translation assessment construct. Following this assessment tool, we determined the best Chinese version that could further be tested for its psychometric properties among the public. Conclusion: A method and an assessment construct for person-centered translation of dementia public stigma scales were developed. Such a method and such an assessment construct could be followed in the translation of dementia public stigma scales and the translation evaluation of such scales.
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Demência , Traduções , Humanos , Reprodutibilidade dos Testes , Psicometria , Estigma SocialRESUMO
Introduction: The number of Australian residents with dementia is projected to double by 2058, with 28% currently being migrants from non-Anglophone countries. There will be growing demand for professional interpreters for cognitive assessments and dementia-related health consultations in the future. Interpreting cognitive assessments can be challenging for interpreters; inaccurate interpreting can influence assessment outcomes. The Improving Interpreting for Dementia Assessments (MINDSET) project will upskill interpreters through an online training course in dementia and cognitive assessments. The training has been co-designed with key stakeholders from the interpreting sector, dementia-related services, and family caregivers, and has been user-tested with 12 interpreters. The training aims to improve the quality of interpreter-mediated communication during cognitive assessments, and thereby improve the accuracy and acceptability of cognitive assessments with older people who have limited English proficiency. Methods: We are conducting a single-blinded randomized controlled trial to evaluate the effectiveness of the training. We aim to enroll 150 interpreters, and allocate them to equal parallel groups. The intervention group will receive access to the MINDSET training, which comprises 4 hours of resources covering five domains: dementia knowledge, cross-cultural communication, briefings and debriefings, interpreting skills, and interpreting ethics. The control group will be assigned to a wait list, and will receive access to the training after the trial. Participants will be assessed according to the five domains, via the Dementia Knowledge and Assessment Scale, multiple-choice questions, video-simulated assessments, and ethical scenarios. Assessments will occur at baseline (prior to the intervention group completing the training), 3 months after enrollment, and 6 months after enrollment. Results: The trial is ongoing. Recruitment began in June 2022. Discussion: This is the first time a training resource for interpreters in dementia has been trialed. If successful it may represent a technologically innovative way to offer training to both trainee and practicing interpreters. Highlights: Interpreters are crucial in facilitating cognitive assessments for allophone speakers.Interpreters would benefit from training to improve assessment accuracy.Our study has co-designed specialized dementia training for interpreters.This is a protocol to evaluate the training's efficacy in a randomized controlled trial.
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OBJECTIVE: While Trauma-informed care (TIC) has the potential to improve the quality of aged and dementia care, the challenge remains in translating the principles of TIC into practice. This study aimed to characterise what trauma-informed aged care looks like in practice, by learning from an aged care service acknowledged as delivering trauma-informed aged care effectively. METHOD: We conducted an appreciative inquiry study within a residential aged care service catering for veterans and others with trauma histories. Observation of care behaviours, interviews with staff and residents, and organisational policy mapping were used to identify elements that maximised care safety and accessibility for trauma survivors. Data were analysed and triangulated using a framework analysis approach. RESULTS: The aged care provider embedded the principles of TIC into its staff training (i) to promote understanding of how trauma may affect experiences in care, and (ii) to adapt care when appropriate to promote safety. The service promoted a calm atmosphere where residents could make choices and felt safe. Uniforms and signage provided consistency, clarity, and transparency for residents. Staff behaviours demonstrated respect, fostered trust, and anticipated needs without unnecessarily imposing care. Staff consistently offered choices, used residents' names, sought permission before providing care, and offered reassurance. Staff reported high morale with a commitment to delivering high quality care, and feedback to management. Effective communication promoted information sharing and trust among staff. CONCLUSION: Trauma-informed practice was facilitated through organisational policy, a dignified environment, and thoughtful staff behaviour creating safety, choice, and control for residents.
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Qualidade da Assistência à Saúde , Idoso , HumanosRESUMO
BACKGROUND: Memory clinics (MCs) play a key role in accurate and timely diagnoses and treatment of dementia and mild cognitive impairment. However, within Australia, there are little data available on current practices in MCs, which hinder international comparisons for best practice, harmonisation efforts and national coordination. Here, we aimed to characterise current service profiles of Australian MCs. METHODS: The 'Australian Dementia Network Survey of Expert Opinion on Best Practice and the Current Clinical Landscape' was conducted between August-September 2020 as part of a larger-scale Delphi process deployed to develop national MC guidelines. In this study, we report on the subset of questions pertaining to current practice including wait-times and post-diagnostic care. RESULTS: Responses were received from 100 health professionals representing 60 separate clinics (45 public, 11 private, and 4 university/research clinics). The majority of participants were from clinics in metropolitan areas (79%) and in general were from high socioeconomic areas. While wait-times varied, only 28.3% of clinics were able to offer an appointment within 1-2 weeks for urgent referrals, with significantly more private clinics (58.3%) compared to public clinics (19.5%) being able to do so. Wait-times were less than 8 weeks for 34.5% of non-urgent referrals. Only 20.0 and 30.9% of clinics provided cognitive interventions or post-diagnostic support respectively, with 7.3% offering home-based reablement programs, and only 12.7% offering access to group-based education. Metropolitan clinics utilised neuropsychological assessments for a broader range of cases and were more likely to offer clinical trials and access to research opportunities. CONCLUSIONS: In comparison to similar countries with comprehensive government-funded public healthcare systems (i.e., United Kingdom, Ireland and Canada), wait-times for Australian MCs are long, and post-diagnostic support or evidence-based strategies targeting cognition are not common practice. The timely and important results of this study highlight a need for Australian MCs to adopt a more holistic service of multidisciplinary assessment and post-diagnostic support, as well as the need for the number of Australian MCs to be increased to match the rising number of dementia cases.