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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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Cognición , Baile , Ejercicio Físico , Humanos , Baile/psicología , Ejercicio Físico/psicología , Calidad de Vida , Enfermedad de Parkinson/psicología , Enfermedad de Parkinson/terapia , Danzaterapia , Salud Mental , Depresión/terapia , Depresión/prevención & controlRESUMEN
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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Demencia , Calidad de Vida , Humanos , Australia , Estudios Transversales , Demencia/diagnóstico , Demencia/terapia , Personal de Salud/psicología , Investigación CualitativaRESUMEN
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.