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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: 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
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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Despite the positive relationship between anthocyanin-rich foods and cognitive health, a dietary deficit exists in older adults. Effective interventions require an understanding of people's dietary behaviors situated in social and cultural contexts. Therefore, the aim of this study was to explore older adults' perceptions about increasing their consumption of anthocyanin-rich foods for cognitive health. Following an educational session and the provision of a recipe and information book, an online survey and focus groups with Australian adults aged 65 years or older (n = 20) explored the barriers and enablers towards eating more anthocyanin-rich foods and potential strategies to achieve dietary change. An iterative, qualitative analysis identified the themes and classified the barriers, enablers and strategies onto the Social-Ecological model levels of influence (individual, interpersonal, community, society). Enabling factors included a desire to eat healthily, taste preference and familiarity of anthocyanin-rich foods (individual), social support (community), and the availability of some anthocyanin-rich foods (society). The barriers included budget, dietary preferences and motivation (individual), household influences (interpersonal), limited availability and access to some anthocyanin-rich foods (community) and the cost and the seasonal variability (society). The strategies included increasing individual-level knowledge, skills, and confidence in utilizing anthocyanin-rich foods, educational initiatives about the potential cognitive benefits, and advocating to increase access to anthocyanin-rich foods in the food supply. This study provides for the first time, insight into the various levels of influence impacting older adults' ability to consume an anthocyanin-rich diet for cognitive health. Future interventions should be tailored to reflect the barriers and enablers and to provide targeted education about anthocyanin-rich foods.
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Antocianinas , Dieta , Humanos , Idoso , Pesquisa Qualitativa , Austrália , CogniçãoRESUMO
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
INTRODUCTION: Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health District to explore how one culturally and linguistically diverse (CALD) community engages with school and HPV vaccination. METHODS: We adapted a participatory research method (the World Café) to engage one local CALD community-the Macedonian community (Our bi-cultural researcher and participants preferred the term 'Macedonia' rather than The Republic of North Macedonia as outlined in the 2018 Prespa agreement) in New South Wales (Australia)-to discuss HPV and school vaccination. Our qualitative analysis combined deductive codes taken from the Tailoring Immunization Programme framework, inductive codes guided by narrative inquiry (temporality, sociality and place) and previously known vaccination 'trust' frameworks. RESULTS: In late 2019, 31 local Macedonian community members were purposely recruited for two World Cafés (n = 15 mothers/grandmothers and n = 16 young adults). Our themes reveal a community narrative grounded in historical vaccine experiences, family views on vaccination and a general trust in schools. Participants collectively discussed how 'increasing knowledge' and 'tailoring health communications' could strengthen community vaccine decision-making. CONCLUSION: This study demonstrates how research partnerships and participatory methods can be applied in CALD community settings to research engagement with school and HPV vaccination. Our World Café dialogues highlight a positive narrative about vaccines, where community vaccination behaviours were built on multilayer trust relationships despite low vaccine knowledge. Our findings further knowledge around 'public trust' in school vaccination, highlighting the importance of existing (or missing) trust relationships when tailoring vaccine communication to local CALD communities. PATIENT OR PUBLIC CONTRIBUTION: Participants who took part in the World Cafes were all local Macedonian community parents or young adults who have been or will be exposed to the health services offered by school-based HPV vaccination. Thus, all the data collected came from their personal experiences with the school vaccination programme, or how they expect to participate in the programme. To ensure our study design was culturally appropriate and tailored to the Macedonian community, we engaged with the relevant local health stakeholders (the bi-cultural Multicultural Health Officer and Multicultural Health Service Manager Programme Director) to adapt and refine the World Café method for this context and setting. Our local health stakeholders also reviewed our preliminary findings, assisted with data interpretation and participated in manuscript editing.
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Infecções por Papillomavirus , Vacinas contra Papillomavirus , Adulto Jovem , Humanos , Austrália , Infecções por Papillomavirus/prevenção & controle , Papillomavirus Humano , Etnicidade , Grupos Minoritários , VacinaçãoRESUMO
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
BACKGROUND: With the increasing incidences of dementia in aging societies, attention should be paid to the social context in which people with dementia live. One of its aspects is language transmitting beliefs, perceptions, and behavioral patterns. An analysis of understanding the diagnostic label of dementia may reveal the role of semantics in the process of social cognition of this disease. OBJECTIVE: The overall aim of this study was to investigate the understanding of the word dementia (otepienie) in the Polish language. METHODS: Frame semantics approach was applied. The structure of semantic information was uncovered with the concept of frame utilizing The National Corpus of Polish (the biggest corpus of contemporary Polish language of 1,500 million words). Additional data was collected from Polish speaking adults in Poland. RESULTS: The analyses allowed to identify the otepienie frame for Polish and verify how its elements are filled in by the general population, indicating the selectivity of colloquial knowledge about dementia. Dementia deviates from the prototypical disease. Need to care for the person with dementia outweighs treatment options. The cognitive symptoms and characteristics of the subject are salient. The perceptions of people with dementia embedded in semantics of the diagnostic label might create a basis for prejudicial attitudes among lay part of the society. CONCLUSION: Findings give foundation to further studies on relationship between semantics and social cognition of dementia which has a real impact on the social and clinical situation of people with dementia and may facilitate formulation of tailored messages aimed at building dementia-friendly society.
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Demência , Semântica , Humanos , Polônia/epidemiologia , Idioma , Envelhecimento , Demência/diagnóstico , Demência/epidemiologiaRESUMO
Globally, there is an urgent need for solutions that can support our aging populations to live well and reduce the associated economic, social and health burdens. Implementing smart technologies within homes and communities may assist people to live well and 'age in place'. To date, there has been little consultation with older Australians addressing either the perceived benefits, or the potential social and ethical challenges associated with smart technology use. To address this, we conducted five World Cafés in two Australian states, aiming to capture citizen knowledge about the possibilities and challenges of smart technologies. The participants (n = 84) were aged 55 years and over, English-speaking, and living independently. Grounding our analysis in values-based social science and biomedical ethical principles, we identified the themes reflecting the participants' understanding, resistance, and acceptance of smart technologies, and the ethical principles, including beneficence, non-maleficence, autonomy, privacy, confidentiality, and justice. Similar to other studies, many of the participants demonstrated cautious and conditional acceptance of smart technologies, while identifying concerns about social isolation, breaches of privacy and confidentiality, surveillance, and stigmatization. Attention to understanding and incorporating the values of older citizens will be important for the acceptance and effectiveness of smart technologies for supporting independent and full lives for older citizens.
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Serviços de Assistência Domiciliar , Idoso , Envelhecimento , Austrália , Humanos , Privacidade , TecnologiaRESUMO
Research methods are not just for data collection, but can also be engaged in to promote more immediate benefits for participants and to create social change. This paper reports on how journey mapping was used with staff and family members of people with dementia in a residential aged care facility in regional NSW, Australia. The study was conducted in the context of a care transition, where residents, including people with dementia moved from an existing site to another new facility. Care transitions are frequent yet difficult for people with dementia to negotiate, so it was important to predict their nature and understand what might make the move easier. We used an innovative visual method known as 'journey mapping' to engage 45 staff and 18 family members to inform supports for 30 people with dementia, who had been identified as needing additional support during the planned transition. The journey mapping process was useful for fostering the caring imagination and encouraging active and creative planning around change for the people with dementia. It also highlighted the entrenched inequalities in the aged care sector, where poorly paid staff wanted to enact broad ranging supports but felt unsupported to do so. In other words, to improving and re-imagining transitional care for people with dementia requires structural and systemic change rather than just localised re-imaginings. [245].
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Demência , Casas de Saúde , Idoso , Demência/terapia , Família , Humanos , Imaginação , Transferência de PacientesRESUMO
BACKGROUND: It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs. AIM: This study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care-related quality of life. METHOD: We used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed. RESULTS: We started with the standard ASCOT questionnaire to assess the care-related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met. CONCLUSION: There is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long-term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person-centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users. PATIENT OR PUBLIC CONTRIBUTION: Service users with dementia were involved in the design of the 'Easy Read' questionnaire used in the study.
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Demência , Pessoas com Deficiência , Serviços de Assistência Domiciliar , Idoso , Demência/terapia , Humanos , Assistência de Longa Duração , Qualidade de Vida/psicologiaRESUMO
This study used a qualitative, cross-sectional design to address a gap in understanding the perspectives and practices of care planners and case managers in supporting consumer- directed care (CDC) for community dwelling people living with dementia. Semi-structured telephone interviews were conducted with a convenience sample of n = 16 planners and managers from seven providers of the Australian home care packages (HCP) program in NSW (Australia). All interviewees described the aspirations of supporting choice within CDC as synergistic with their values and with person-centred care. Some described new flexibilities within the more open-ended planning conversations enabled by CDC. However, most acknowledged their capacity to enable choice for clients with dementia was limited by the capped care budgets, as well as the skills and time needed to support choice and decision- making. Organisational practice changes associated with the shift to a market-based system were also perceived as limiting the capacity to support choices. Reducing centralised systems, increasing individual budgets and improving staff capacity to support decision-making by people with dementia may help to improve this situation. However, results suggest a deeper need to re-evaluate whether the CDC model is the most appropriate for supporting the rising numbers of people with dementia to age well in place.
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Demência , Serviços de Assistência Domiciliar , Idoso , Austrália , Estudos Transversais , Demência/terapia , Humanos , Vida IndependenteRESUMO
BACKGROUND: Under-coding of dementia during hospitalisation results in an inability to identify all patients with dementia using hospital administrative data. Clinical coding can be viewed as a proxy for management; therefore, under-coding indicates dementia was not considered in the patient's management. While under-coding of dementia is well established, there is sparse evidence on whether dementia is coded in subsequent hospitalisations among patients with a known diagnosis. OBJECTIVE: (a) To describe patterns of dementia coding over 5 years after a first-coded (i.e. index) admission for dementia; (b) to identify factors associated with clinical coding of dementia; and (c) to identify patient subgroups at risk of not being coded to inform future interventions to improve hospital identification and management of dementia. METHOD: Retrospective study of longitudinal hospital data from 1 July 2006 to 30 June 2015 for 7919 patients hospitalised during the 5 years' post-index admission for dementia in a regional local health district of New South Wales, Australia. RESULTS: Dementia was coded in 63.9% of admissions in the 12 months following index admission for dementia; this decreased to 53.7% after 5 years. Patients were 20% more likely to have dementia actively managed when it co-occurred with delirium. Under-coding varied across conditions, with dementia more likely to be coded in admissions for falls and pneumonitis, and less likely for heart failure, pneumonia and urinary tract infection (UTI). CONCLUSION: The frequency with which dementia was not coded highlights opportunities to improve identification and management of dementia through dementia-specific care, enhanced clinical protocols, and interventions focused around heart failure, pneumonia and UTI admissions.
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Demência , Hospitalização , Austrália/epidemiologia , Demência/epidemiologia , Demência/terapia , Hospitais , Humanos , Estudos RetrospectivosRESUMO
Universities can promote social impact by developing a dementia literate workforce. The Dementia Enabling University Strategy utilised a knowledge translation framework in an Australian university to inspire and support academics to engage students and consider how their skills and knowledge could contribute to the creation of more supportive environments for people with dementia. Dementia Enabling University Strategy ran across eight disciplines: law, media, social sciences, public health, engineering, business, marketing and psychology and was successful in engaging university academics and students. However, a longer term strategy is needed to embed 'dementia' as core business to the university impact agenda.
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Demência , Universidades , Austrália , Humanos , Estudantes , Pesquisa Translacional BiomédicaRESUMO
'Rethink Respite' was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014-15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self-efficacy were also assessed. A co-designed multi-component community-based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one-on-one in-home coaching program. At program completion, a follow-up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to 'Rethink Respite' media, information and education during the intervention period. Eighteen of the 44 also self-selected to receive the active tailored coaching support. At follow-up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub-group analyses found those who also self-selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self-efficacy (p < .05). Intention to use respite, and levels of personal gain from caring in this sub-group also increased (p < .05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self-select to the respite coaching), experienced negative changes over time to their respite beliefs and 'role captivity'. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design.
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Cuidadores , Demência , Austrália , Estudos de Coortes , Demência/terapia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Projetos Piloto , Estudos Prospectivos , Cuidados IntermitentesRESUMO
This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.
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Atitude do Pessoal de Saúde , Demência/psicologia , Direitos Humanos , Qualidade da Assistência à Saúde/normas , Austrália , Cuidadores , Grupos Focais , Pessoal de Saúde/psicologia , Humanos , Entrevistas como Assunto , AdvogadosRESUMO
OBJECTIVE: To describe patterns of hospitalisation in the years preceding the first (index) admission coded with dementia. METHODS: Retrospective longitudinal analysis of hospitalisation preceding an index admission for dementia for 7919 patients and a matched cohort in a regional local health district of New South Wales, Australia, from 1 July 2006 to 31 December 2016. RESULTS: The dementia cohort experienced a sharp increase in frequency of hospitalisation, particularly in the year pre-index, and primarily for falls and urinary tract infections. They also demonstrated more episodes for nervous and musculoskeletal illnesses and injuries than controls and visited emergency department more frequently with neurological illnesses and injuries. CONCLUSION: Findings highlight opportunities for earlier diagnosis of dementia in hospital, through more targeted screening and follow-up of suspected cases with comprehensive geriatric assessment prior to discharge. This may result in a definitive diagnosis on discharge, allowing for better coordination of ongoing management to prevent unnecessary readmissions.
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Demência , Hospitalização , Idoso , Austrália/epidemiologia , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia , Hospitais , Humanos , New South Wales/epidemiologia , Estudos RetrospectivosRESUMO
OBJECTIVES: Bowel screening is an effective way to promote early detection of bowel cancer. Culturally and linguistically diverse (CALD) people face considerable barriers to screening. This qualitative study explored perceptions towards, and usability of, Australia's national bowel screening kit with members of two migrant communities. METHODS: Thirty-three people (aged 50-79 years) from Serbian and Macedonian communities in the Illawarra region in New South Wales, Australia, participated in one of five interactive focus group sessions. Sessions used innovative 'customer journey' techniques to understand participants' experience of each step of the faecal occult blood test process. Participants discussed knowledge of bowel cancer and attitudes to screening, and participated in a collective mock use of a test kit. Sessions were audio recorded, transcribed and thematically analysed by two researchers in collaboration with bicultural health workers. RESULTS: Multiple factors contributed to low readiness and capacity to use the kit, including limited promotion of the program in community languages, complicated and poorly sequenced kit instructions, and confusion around the order and labelling of kit components. Participants suggested several ways to improve kits to improve uptake by CALD communities. CONCLUSION: Simplified and targeted promotion of bowel screening programs in community languages, and improved kit design, may support participation of CALD populations in screening programs.