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Coping with dementia requires an integrated approach encompassing personal, health, research, and community domains. Here we describe "Walking the Talk for Dementia," an immersive initiative aimed at empowering people with dementia, enhancing dementia understanding, and inspiring collaborations. This initiative involved 300 participants from 25 nationalities, including people with dementia, care partners, clinicians, policymakers, researchers, and advocates for a 4-day, 40 km walk through the Camino de Santiago de Compostela, Spain. A 2-day symposium after the journey provided novel transdisciplinary and horizontal structures, deconstructing traditional hierarchies. The innovation of this initiative lies in its ability to merge a physical experience with knowledge exchange for diversifying individuals' understanding of dementia. It showcases the transformative potential of an immersive, embodied, and multi-experiential approach to address the complexities of dementia collaboratively. The initiative offers a scalable model to enhance understanding, decrease stigma, and promote more comprehensive and empathetic dementia care and research.
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Demência , Estigma Social , Humanos , Espanha , Demência/terapiaRESUMO
BACKGROUND: While the majority of patients with Alzheimer's disease resides in low and middle-income countries, little is known of their preparedness for emerging disease-modifying treatments. We analyze the preparedness of Brazil, one of the most populous middle-income countries, from a capacity and institutional preparedness perspective. METHODS: Desk research and 12 interviews for background and capacity data. Markov model to estimate wait times for access to treatment. FINDINGS: Brazil has no national dementia strategy or established pathway for evaluation of cognitive concerns, and dementia is typically diagnosed late if at all. While members of private health plans have ready access to elective specialty care, wait times in the public sector are long. Assuming potentially treatment-eligible patients are referred from primary to specialty care based on a brief cognitive exam and a blood test for the Alzheimer's pathology, available capacity will not be sufficient to match the projected demand. The biggest obstacle is availability of dementia specialist visits, and the effect of population growth and ageing means that the wait list for specialist appointment will continue to grow from around 400,000 in 2022 to over 2.2 million in 2040. We do not project substantial wait times for confirmatory biomarker testing and treatment delivery but note that this is a consequence of patients waiting for their specialist appointments. These queues will result in estimated persistent wait times for treatment of around two years on average with substantial differences between the public and private sectors, as capacity growth is insufficient to keep up with increasing demand. DISCUSSION: Our findings suggest that Brazil is ill-prepared to provide timely access to an Alzheimer's treatment with predicted wait times of about two years, largely because of a limited number of dementia specialists.
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Doença de Alzheimer , Humanos , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/terapia , Brasil , Agendamento de Consultas , EnvelhecimentoRESUMO
This study aimed to understand stigma in relation to people living with dementia in Sao Paulo, Brazil. Critical Narrative Inquiry methodology was used. Semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Inductive and deductive techniques were used. The latter was informed by Link and Phelan's (2001) sociological theory of stigma. Dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their caring experiences, rather than to cause harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding 'obedience', and restricting their freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred care for carers in Brazil.
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BACKGROUND AND OBJECTIVES: Despite the rapid increase in the number of people living with dementia in Brazil, dementia care is limited. This study describes how people living with dementia and their carers access care, treatment, and support, and identifies what characteristics are likely to enable or prevent access. RESEARCH DESIGN AND METHODS: We created 10 vignettes to illustrate fictitious but realistic scenarios involving people living with dementia in Brazil. The vignettes explore a combination of socioeconomic and demographic variables. They were completed using an in-depth desk review of the dementia care landscape in Brazil; a Strengths, Opportunities, Weaknesses, and Threats (SWOT) analysis of the desk review; and expert knowledge. The analysis focused on identifying common sources of service provision, barriers of access to care and support, and specific issues experienced by some population groups. FINDINGS: Access to a dementia diagnosis, care, and support for people living with dementia in Brazil is limited. Demographic and socio-economic circumstances play a role in determining the type of services to which a person might have access. Poor knowledge about dementia, lack of capacity in the health system, and lack of formal long-term care support are among the identified barriers to accessing timely diagnosis, care, and support in the country. DISCUSSION AND IMPLICATIONS: Understanding the barriers and facilitators of access to diagnosis, treatment, and support for people with dementia and families with different demographic and socioeconomic characteristics is crucial for designing dementia policies that are context-specific and responsive to the care needs of different socioeconomic groups in Brazil.
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STRiDE was an ambitious four-year project in seven countries aiming to build capacity around generating and using research to support the development of policies to improve quality of life of people with dementia and their carers. The project's innovative approach combined rigorous academic research and hands-on civil society advocacy. This paper explores the project's unique strategy for policy change and compiles case-studies from several of the STRiDE countries. Finally, we share lessons learned and next steps to keep momentum for policy change going in each of these countries - and beyond.
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INTRODUCTION: Stigma and discrimination among healthcare workers can hinder diagnosis and the provision of appropriate care in dementia. This study is aimed at developing, delivering and evaluating the feasibility of a group antistigma intervention to improve knowledge, attitudes and behaviours in relation to people living with dementia among community health workers (CHWs). METHODS AND ANALYSIS: This will be a randomised controlled feasibility trial conducted with 150 CHWs from 14 primary care units (PCUs) in São Paulo, Brazil. PCUs will be randomly allocated (1:1) in two parallel groups-experimental group or control group. Participants from PCUs allocated to the experimental group will receive a 3-day group intervention involving audio-visual and printed materials as well as elements of social contact. The control group will keep their usual routine. Knowledge, attitude and intended behaviour stigma-based outcomes will be assessed at baseline and at follow-up (30 days after intervention) to both groups, with additional questions on feasibility for the experimental group at follow-up. Around 10-15 participants will take part in follow-up semistructured interviews to further explore feasibility. Quantitative analyses will follow an 'intention to treat' approach. Qualitative data will be analysed using content analysis. ETHICS AND DISSEMINATION: This study was approved by the National Commission for Ethics in Research in Brazil (n. 5.510.113). Every participant will sign a consent form. Results will be disseminated through academic journals and events related to dementia. The intervention materials will be made available online.
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A boa postura está envolvida com o bem estar do indivíduo. Fatores como fraqueza muscular e posturas incorretas ocasionam desequilíbrios musculares, podendo levar às disfunções posturais. O Isostretching é uma técnica que supre a necessidade de um tratamento global, essencial nesses casos. Neste trabalho, o Isostretching foi aplicado em um paciente do sexo feminino com hipercifose torácica. Ao final do tratamento observou-se, através da avaliação radiológica e fotográfica, redução da angulação cifótica e melhora das retrações das cadeias musculares, demonstrando a eficácia dessa técnica na referida disfunção postural. O trabalho objetivou analisar os efeitos do método Isostretching na hipercifose torácica postural, através do exame físico, avaliação fotográfica e radiológica.
The good posture is involved with the individual well-being. Factors as muscular weakness and incorrect postures cause muscular unbalances and may also cause postural dysfunctions. Isostretching is a technique that supplies the need of a global treatment, essential in those cases. In this work the Isostretching was applied in one female patient with thoracic hyperkyphosis. At the end of the treatment it was observed, through radiologic and photographic evaluation, reduction in the kyphotic angulation and improvement in muscular chains retraction, showing the effectiveness of that technique in the referred postural dysfunction. The aim of this work was to analyze the effects of the Isostreching method in the postural thoracic hyperkyphosis through physical examination, radiologic and photographic evaluation.