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INTRODUCTION: Recent studies suggest that medical cannabis laws may contribute to a relative reduction in health insurance costs within the individual health insurance markets at the state level. We investigated the effects of adopting a medical cannabis law on the cost of employer-sponsored health insurance in the United States. METHODS: We analyzed state-level data from the Medical Expenditure Panel Survey-Insurance Component (MEPS-IC) Private Sector spanning from 2003 to 2022. The outcomes included log-transformed average total premium costs per employee for single, employee-plus-one, and family coverage plans. We utilized the Sun and Abraham (J Econometr 225(2):175-199, 2021) difference-in-difference (DiD) method, looking at the overall DiD and event-study DiD. Models were adjusted for various state-level demographics and dichotomous policy variables, including whether a state later adopted recreational cannabis, as well as time and unit fixed effects and population weights. RESULTS: For states that adopted a medical cannabis law, there was a significant decrease in the log average total premium per employee for single (-0.034, standard error [SE] 0.009 (-$238)) and employee-plus-one (-0.025, SE 0.009 (-$348)) coverage plans per year considering the first 10 years of policy change compared with states without such laws. Looking at the last 5 years of policy change, we saw increases in effect size and statistical significance. In-time placebo testing suggested model robustness. Under a hypothetical scenario where all 50 states adopted medical cannabis in 2022, we estimated that employers and employees could collectively save billions on healthcare coverage, potentially reducing healthcare expenditure's contribution to GDP by 0.65% in 2022. CONCLUSION: Adoption of a medical cannabis law may contribute to decreases in healthcare costs. This phenomenon is likely a secondary effect and suggests positive externalities outside of medical cannabis patients.
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Introduction: Existing research on medical cannabis patients has often overlooked those younger than 21. This study aimed to detail the frequency and rate of pediatric medical cannabis patients in the US using a large patient database. Methods: Utilizing Leafwell Patient Database data from 2019 to mid-2023, we described demographics and qualifying conditions, employing descriptive statistics and χ2 tests to discern differences between minors (0-17 years) and young adults (18-20 years). We calculated rates per 100,000 population by state. Results: Analyzing 13,855 patients, 5.7% were minors and 94.3% were young adults. Anxiety emerged as the primary self-reported condition for both groups, yet differences were seen for other conditions. Differences were observed by race/ethnicity, health insurance status, residency in adult-use states, and number of reported conditions. Notably, both groups reported a similar average number of conditions. Conclusion: This study underscores demographic distinctions between minor-aged medical cannabis patients and young adults. There is a need for comprehensive clinical research addressing efficacy, safety, and tailored guidelines specific for pediatric medical cannabis patients. Such insights are pivotal for healthcare providers and policymakers in navigating medical cannabis treatment protocols.
This paper describes the demographics and medical conditions of medical cannabis patients under the age of 21 in the United States based on data from the Leafwell Patient Database spanning 2019 to mid-2023. We found that there is a significant number of medical cannabis users aged 20 or younger, with variations in demographics and conditions between minors (under 18) and young adults (18-20). The findings indicate that minor patients are predominantly white, non-Hispanic, residing in non-adult-use states, and report a lower number of conditions per patient compared to young adults. Anxiety, chronic pain, and PTSD are among the most commonly self-reported conditions for both age groups. There is need for additional clinical studies to understand the role of medical cannabis in addressing symptoms and improving the quality of life for conditions such as chronic pain, anxiety, and PTSD in the pediatric population. The study is limited by its reliance on self-reported data but represents the largest cohort of pediatric medical cannabis users in the world. Further investigation by academics and clinical scientists ought to inform the appropriate integration of medical cannabis in young patients.
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BACKGROUND AND OBJECTIVES: Cognitive stimulation therapy (CST) is an evidence-based group intervention for people with dementia, with benefits for cognition and quality of life when delivered face-to-face. Many people are unable to attend face-to-face groups for reasons including health and transport issues. This study aimed to assess the feasibility and acceptability of online or "virtual" CST (vCST). RESEARCH DESIGN AND METHODS: Single-blind, randomized controlled feasibility design with qualitative interviews. Forty-six people with mild-to-moderate dementia were randomly allocated to attend either 14 sessions of twice-weekly vCST (nâ =â 24) or treatment as usual (TAU, defined as usual care; nâ =â 22) over 7 weeks. Cognition, quality of life, and depression were assessed pre- and posttreatment. Qualitative interviews (nâ =â 16) with participants and carers were analyzed using thematic analysis. RESULTS: High levels of attendance, adherence, fidelity to the manual, and completion of outcomes were recorded. Recruitment appeared feasible although randomization may not have been acceptable to some. There were no statistical differences noted between vCST and TAU in any of the outcomes evaluated, although both quantitative and qualitative data indicated acceptability, with qualitative reports of improved outcomes including cognition. DISCUSSION AND IMPLICATIONS: vCST appeared feasible to deliver but did not result in any changes in outcomes, as expected from an underpowered feasibility trial. CST is the main psychosocial intervention delivered for dementia in UK memory services and globally, with many services moving towards virtual CST delivery. Therefore, a fully powered RCT of the effectiveness of vCST is feasible and justified.
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Terapia Cognitivo-Comportamental , Demência , Estudos de Viabilidade , Qualidade de Vida , Humanos , Demência/terapia , Demência/psicologia , Feminino , Masculino , Idoso , Terapia Cognitivo-Comportamental/métodos , Método Simples-Cego , Idoso de 80 Anos ou mais , Cognição , Psicoterapia de Grupo/métodos , Pessoa de Meia-Idade , Resultado do Tratamento , Depressão/terapia , Pesquisa QualitativaRESUMO
BACKGROUND: Cognitive stimulation therapy (CST) is an evidence-based, group psychosocial intervention for people with dementia, and it has a positive impact on cognition and quality of life. CST has been culturally adapted for use globally. It was developed as a face-to-face intervention but has recently been adapted for online delivery. OBJECTIVE: In this study, we aimed to explore the feasibility and acceptability of online or virtual CST (vCST) delivery in India and Brazil, emphasizing barriers and facilitators to implementation. METHODS: A single-group, multisite, mixed methods, feasibility study was conducted, with nested qualitative interviews. Primary feasibility outcomes were recruitment rate, attendance, attrition, acceptability, and outcome measure completion. Exploratory pre- and postintervention measures, including cognition and quality of life, were assessed. Qualitative interviews were conducted with people with dementia, family caregivers, and group and organizational leaders following intervention delivery, and the data were analyzed using the Consolidated Framework for Implementation Research. RESULTS: A total of 17 vCST group sessions with 59 participants were conducted for 7 weeks, with 53% (31/59) of participants attending all 14 sessions. Attrition rate was 7% (4/59), and outcome measure completion rate at follow-up was 68% (40/59). Interviews took place with 36 stakeholders. vCST was acceptable to participants and group leaders and enabled vital access to services during pandemic restrictions. While online services broadened geographic access, challenges emerged concerning inadequate computer literacy, poor technology access, and establishing interpersonal connections online. Exploratory, uncontrolled analyses indicated positive trends in quality of life but negative trends in cognition and activities of daily living, but these results were not statistically significant. CONCLUSIONS: vCST demonstrated feasibility and acceptability, serving as a crucial resource during the pandemic but raised challenges related to technology access, computer literacy, and long-term implementation. The study highlights the potential of vCST while emphasizing ongoing development and solutions to address implementation challenges.
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Terapia Cognitivo-Comportamental , Demência , Estudos de Viabilidade , Qualidade de Vida , Humanos , Demência/terapia , Índia/epidemiologia , Brasil/epidemiologia , Feminino , Masculino , Idoso , Terapia Cognitivo-Comportamental/métodos , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso de 80 Anos ou mais , Cuidadores/psicologiaRESUMO
Objectives: This study aimed to understand the care needs, care arrangements and burden of care for people with dementia in Northern Tanzania. Methods: This was a cross-sectional, observational study. People with dementia and their carers (n = 53) were recruited from an outpatient clinic, and data on carer burden and independence in activities of daily living were collected. Associations with carer burden and characteristics were explored through non-parametric tests and regression analyses. Results: Thirty-six carers were female (68%). Levels of impairment in instrumental activities of daily living were high, with a median score of 38 out of 44 on the Identification and Intervention for Dementia in Elderly Africans - Instrumental Activities of Daily Living (IDEA-IADL). Carer burden was moderate with a median Zarit Burden Interview (ZBI) score of 46 out of 88. Being a female carer was associated with higher carer burden (odds ratio 3.68, 95% CI 1.04-12.99). Discussion: Carer burden was found to be higher than in previous studies based in low-and-middle income countries. Further research is needed to explore this difference, and to identify interventions to support care needs and reduce carer burden.
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Atividades Cotidianas , Cuidadores , Demência , Humanos , Feminino , Estudos Transversais , Masculino , Demência/enfermagem , Demência/psicologia , Cuidadores/psicologia , Idoso , Tanzânia , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Adulto , Necessidades e Demandas de Serviços de SaúdeRESUMO
The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) is a nutrition assistance program in the U.S. WIC served 2.5 million eligible Hispanic women, infants, and children under the age of five in 2021, which is WIC's largest racial/ethnic group. However, limited research has been conducted to understand Hispanic WIC participants' perceptions of WIC breastfeeding recommendations and their breastfeeding decisions. For this qualitative study, we interviewed 18 of these pregnant and postpartum WIC participants on their experiences and decision-making processes related to breastfeeding. Hispanic cultures and home country norms were identified as prominent influences on breastfeeding decisions, along with perceptions of WIC's breastfeeding support. These results can help the WIC program to refine its breastfeeding education to better meet the needs of Hispanic participants.
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Aleitamento Materno , Assistência Alimentar , Hispânico ou Latino , Pesquisa Qualitativa , Humanos , Hispânico ou Latino/psicologia , Aleitamento Materno/psicologia , Aleitamento Materno/etnologia , Feminino , Adulto , Lactente , Conhecimentos, Atitudes e Prática em Saúde , Tomada de Decisões , Estados Unidos , Gravidez , Adulto Jovem , Pré-Escolar , Recém-NascidoRESUMO
PURPOSE: Chronic radiation cystitis (CRC) develops after radiation therapy and can present with symptoms like urinary frequency, urgency, pelvic pain, and nocturia. We have previously reported that amniotic bladder therapy (ABT) provides symptomatic improvement in refractory CRC patients for up to 3 months. Herein, we evaluated the durability of ABT up to 6 months. MATERIALS AND METHODS: CRC patients recalcitrant to previous treatments received ABT comprised of intra-detrusor injections of 100 mg micronized AM diluted in 10 mL 0.9% preservative-free sodium chloride. Clinical evaluation and questionnaires (Interstitial Cystitis Symptom Index (ICSI), Interstitial Cystitis Problem Index (ICPI), Bladder Pain/Interstitial Cystitis Symptom Score (BPIC-SS), Overactive Bladder (OAB) Assessment Tool, SF-12 Health Survey) were repeated at pre-op and 2, 4, 8, 12, 16, 20, 24, and 36 weeks post-injection. RESULTS: Five consecutive patients with a mean age of 64.4 ± 20.1 years with a median CRC duration of 10 years were included and followed for 6 months. After ABT, the lower urinary tract symptoms improved as early as 2 weeks and were maintained up to 20 weeks. BPIC significantly improved from 36.6 ± 1.1 at baseline to 12.6 ± 1.5 at 16 weeks and 13.8 ± 2.9 at 20 weeks. At 24 and 36 weeks, the improvement was maintained in four (80%) of the five patients (BPIC = 13.8 ± 1.0). Uroflow assessment showed voiding volume improved two-fold in four of the five patients at 24 weeks compared to baseline. CONCLUSION: Our data suggest that a significant number of CRC patients may have durable benefit after ABT. Despite this, some of them can show symptoms rebound at 24 weeks.
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Cistite , Lesões por Radiação , Humanos , Lesões por Radiação/etiologia , Lesões por Radiação/terapia , Feminino , Pessoa de Meia-Idade , Cistite/etiologia , Cistite/terapia , Doença Crônica , Fatores de Tempo , Masculino , Idoso , Resultado do Tratamento , Uretra , Bexiga Urinária/efeitos da radiaçãoRESUMO
BACKGROUND AND PURPOSE: The homelessness crisis continues to escalate nationwide, yet many healthcare providers are not adequately prepared to provide care for unhoused patients. An interprofessional Street Medicine elective was developed to address identified knowledge gaps in the unhoused population healthcare needs. EDUCATIONAL ACTIVITY AND SETTING: The course comprised didactic and clinical elements focused on empathetic communication, resource utilization, and medical management for unhoused patients. Course learning outcomes were evaluated via thematic analysis of students' post-course reflective essays. Additionally, students completed a voluntary survey to evaluate course effectiveness in preparing students for healthcare in the unhoused population and to identify areas for course improvement. FINDINGS: Thirty students completed the course (17 osteopathic medical, five pharmacy, eight joint physician assistant/public health). All enrolled students submitted mandatory post-course reflections and 57% completed the voluntary survey. Thematic analysis of reflections indicated that the course content challenged biases toward unhoused populations, equipped students with new perspectives on the unique healthcare needs for unhoused patients, and provided interprofessional approaches to address these needs. Voluntary survey results demonstrated students' preparedness to provide effective care for local unhoused patients without bias or stigma. Most students reported they were likely to incorporate the knowledge/skills acquired from the course in their future clinical practice and were satisfied with the course content and organization. SUMMARY: The Street Medicine elective provided a structured interprofessional curricular opportunity on specialized care for unhoused individuals. This course can be adapted by other healthcare professional programs to empower students to address the growing homelessness crisis.
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Currículo , Farmácia , Humanos , Relações Interprofissionais , Pessoal de Saúde/educação , AprendizagemRESUMO
OBJECTIVES: There is a lack of investment in psychosocial treatments for people with dementia in Brazil. Cognitive Stimulation Therapy (CST) is a group-based intervention that has shown to have benefits on activities of daily living and mood for people with dementia in Brazil. This study aims to explore the experiences and perceived changes following CST groups. METHODS: Individual interviews were conducted with the participants of the group (n = 12) and their caregivers (n = 11). Framework analysis was used to inspect the data. RESULTS: Two main themes have emerged: 'Personal benefits of being part of the group', containing two subthemes: 'Benefits for caregivers' and 'Benefits for person with dementia' and 'Day-to-day changes', containing seven subthemes; 'Memory', Sociability', 'Language', 'Mood', 'Orientation', 'Everyday activities' and 'Behavioural and psychological symptoms'. CONCLUSION: Results suggest that CST groups led to perceived personal benefits for the people with dementia and caregivers and that there are perceived changes for the participants of the groups.
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Cuidadores , Demência , Humanos , Cuidadores/psicologia , Qualidade de Vida , Atividades Cotidianas , Brasil , Cognição/fisiologia , Demência/terapia , Demência/psicologiaRESUMO
The direct conversion of human skin fibroblasts to neurons has a low efficiency and unclear mechanism. Here, we show that the knockdown of PTBP2 significantly enhanced the transdifferentiation induced by ASCL1, MIR9/9∗-124, and p53 shRNA (AMp) to generate mostly GABAergic neurons. Longitudinal RNA sequencing analyses identified the continuous induction of many RNA splicing regulators. Among these, the knockdown of RBFOX3 (NeuN), significantly abrogated the transdifferentiation. Overexpression of RBFOX3 significantly enhanced the conversion induced by AMp; the enhancement was occluded by PTBP2 knockdown. We found that PTBP2 attenuation significantly favored neuron-specific alternative splicing (AS) of many genes involved in synaptic transmission, signal transduction, and axon formation. RBFOX3 knockdown significantly reversed the effect, while RBFOX3 overexpression occluded the enhancement. The study reveals the critical role of neuron-specific AS in the direct conversion of human skin fibroblasts to neurons by showing that PTBP2 attenuation enhances this mechanism in concert with RBFOX3.
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Processamento Alternativo , Neurônios , Humanos , Processamento Alternativo/genética , Neurônios/metabolismo , Splicing de RNA , Axônios/metabolismo , Fibroblastos/metabolismo , Proteínas do Tecido Nervoso/genética , Proteínas do Tecido Nervoso/metabolismo , Proteína de Ligação a Regiões Ricas em Polipirimidinas/genética , Proteína de Ligação a Regiões Ricas em Polipirimidinas/metabolismoRESUMO
Introduction: Tanzania is a low-income country with an increasing prevalence of dementia, which provides challenges for the existing healthcare system. People with dementia often don't receive a formal diagnosis, and with a lack of formal healthcare, are often predominantly supported by family relatives. There are very few published data relating to lived experiences of people with dementia in Tanzania. This study aimed to understand people with dementia, and their caregivers' experiences of living with dementia in Tanzania and the perceived needs of people with dementia.Methods: Qualitative, semi-structured interviews were conducted with 14 people with dementia and 12 caregivers in Moshi, Tanzania. Interviews were audio-recorded, translated, transcribed and analysed using a Framework Analysis approach.Results: Three sub-themes were identified within data describing the experience of 'Living with Dementia in Tanzania': 'Deteriorations in Health', 'Challenges to living with Dementia in Tanzanian Culture', and 'Lack of Support': people with dementia faced challenges due to social isolation, stigmatisation, and lack of caregiver knowledge on how best to provide support. Collectively, these impacted on both the physical and mental health of people with dementia. Misconceptions about dementia aetiology related to age, stresses of daily life and other co-morbidities. People with dementia were motivated to access treatment, exhibiting pluralistic health-seeking behaviours. There was an overall preference for non-pharmacological interventions over medication, with high levels of trust in medical professional opinions.Conclusions: Living with dementia in Tanzania is influenced by both cultural and religious factors. More work is needed to target supplementary healthcare (with efforts to promote accessibility), support for caregivers and public health education about dementia to overcome existent misconceptions and stigma.
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Cuidadores , Demência , Humanos , Cuidadores/psicologia , Demência/psicologia , Tanzânia , Saúde Mental , Pesquisa QualitativaRESUMO
OBJECTIVES: Many family carers of a person with dementia experience pre-death grief. We aimed to identify strategies that help carers manage pre-death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. METHODS: Mixed methods observational study using structured and semi-structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit-Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief-COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio-recorded additional interviews with a sub-sample of 16 participants. RESULTS: Correlations indicated that emotion-oriented coping was associated with lower grief (R = -0.341), and dysfunctional coping with higher grief (R = 0.435), with a small association with problem-focused strategies (R = -0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief-COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion-focused strategies, but we did not identify a theme relating to problem-focused strategies. CONCLUSION: Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre-death grief, yet current services appear under-resourced to meet growing demand. (ClinicalTrials.gov ID: NCT03332979).
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Adaptação Psicológica , Cuidadores , Demência , Pesar , Feminino , Humanos , Masculino , Cuidadores/psicologia , Demência/psicologia , Demência/terapia , Emoções , Inquéritos e QuestionáriosRESUMO
Access to psychosocial interventions for people with dementia, such as Cognitive Stimulation Therapy (CST), has been restricted during the COVID-19 pandemic. Some services have shifted to provision via videoconferencing, but the prevalence of this is unknown. This audit aimed to understand provision of virtual CST (vCST) within National Health Service (NHS) memory clinics throughout the UK and Channel Islands and investigate plans for ongoing CST provision. A cross-sectional survey was circulated to NHS memory clinics, which included closed and open-ended questions to generate quantitative and qualitative data. Thirty-three memory clinics responded to the survey. During the pandemic, 55% of respondents offered vCST, whereas 45% offered no CST. Of those offering vCST, 80% plan to continue with a hybrid model of separate face-to-face and vCST groups, whilst 20% intend to deliver face-to-face CST only. Reported positive aspects of vCST were participant and staff enjoyment, perceived improved digital confidence in participants, and improved accessibility for those who cannot attend face-to-face groups. Negative aspects related to digital poverty, limited digital literacy, support needed from carers, the impact of sensory impairment on engagement, and staff time commitment. Virtual CST has been a feasible alternative to face-to-face services during the pandemic but should not completely replace in-person groups. A hybrid approach would increase accessibility for all. Future research should explore efficacy of vCST and seek to understand patterns of exclusion from such digital interventions. Supplementary Information: The online version contains supplementary material available at 10.1007/s41347-023-00306-5.
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Nearly half of newborns in the United States are enrolled in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). Promoting breastfeeding is a programmatic priority, although formula vouchers are provided for those who do not exclusively breastfeed. Previous literature suggests that participant perception of WIC's breastfeeding recommendations is a significant factor predicting breastfeeding initiation, duration, and exclusivity outcomes. However, little is known about how participants' perceptions of WIC's breastfeeding recommendations are formed. To address this knowledge gap, we conducted a qualitative pilot study in Nevada, interviewing 10 postpartum WIC mothers and 12 WIC staff who had interacted with participants regarding infant feeding. Results showed participants and staff reported various perceptions of what WIC recommends, the factors that contribute to these perceptions, and how these perceptions affect breastfeeding practices. Respondents also described that WIC has a negative legacy as the "free formula program," and that environmental factors, such as the recent formula recall, have had an impact on participants' infant feeding practices. More effective public campaigns and programmatic strategies are needed to target participants' prenatal self-efficacy and to communicate the availability of skilled lactation support in the early postpartum period to improve participants' perceptions of WIC's position on breastfeeding.
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Promoção da Saúde , Assistência Pública , Criança , Gravidez , Lactente , Humanos , Recém-Nascido , Feminino , Estados Unidos , Projetos Piloto , Promoção da Saúde/métodos , Fórmulas Infantis , Aleitamento Materno , PercepçãoRESUMO
This study aimed to systematically review and meta-analyse the prevalence of sleep disturbances in people with dementia and examine demographic predictors and whether overall prevalence has changed over time. We searched Embase, MEDLINE and PsycINFO for studies reporting the prevalence of sleep disturbances in people with dementia living at home. We meta-analysed the data and calculated the pooled prevalence of sleep disturbances in people with dementia overall and in dementia subtypes. We used meta-regressions to investigate the effects of study characteristics, publication dates and participant demographics. Eleven studies fulfilled the inclusion criteria. The pooled prevalence of any symptoms of sleep disturbance was 26 % (95 % confidence intervals, CI: 23-30 %; n = 2719) and of clinically significant sleep disturbance 19 % (13-25 %; n = 2753). The pooled prevalence of sleep disturbance symptoms was significantly lower among people with Alzheimer's disease (24 %; 16-33 %, n = 310) than Lewy body dementia (49 %; 37-61 %, n = 65). Meta-regression analysis did not find that publication year, participant's age, sex and study quality predicted prevalence. Sleep disturbances are common among people with dementia living in the community, especially in Lewy body dementia. There was no change in prevalence according to publication dates, suggesting treatment has not improved over time.
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Demência , Transtornos do Sono-Vigília , Humanos , Doença de Alzheimer/epidemiologia , Doença por Corpos de Lewy/epidemiologia , Prevalência , Transtornos do Sono-Vigília/epidemiologia , Demência/epidemiologia , Masculino , Feminino , Vida IndependenteRESUMO
Alternative RNA splicing increases transcript diversity in different cell types and under varying conditions. It is executed with the help of RNA splicing regulators (RSRs), which are operationally defined as RNA-binding proteins (RBPs) that regulate alternative splicing, but not directly catalyzing the chemical reactions of splicing. By systematically searching for RBPs and manually identifying those that regulate splicing, we curated 305 RSRs in the human genome. Surprisingly, most of the RSRs are involved in neurogenesis. Among these RSRs, we focus on nine families (PTBP, NOVA, RBFOX, ELAVL, CELF, DBHS, MSI, PCBP, and MBNL) that play essential roles in the neurogenic pathway. A better understanding of their functions will provide novel insights into the role of splicing in brain development, health, and disease. This comprehensive review serves as a stepping-stone to explore the diverse and complex set of RSRs as fundamental regulators of neural development. This article is categorized under: RNA-Based Catalysis > RNA Catalysis in Splicing and Translation RNA Interactions with Proteins and Other Molecules > Protein-RNA Interactions: Functional Implications RNA Processing > Splicing Regulation/Alternative Splicing.
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Processamento Alternativo , Splicing de RNA , Humanos , Splicing de RNA/genética , Processamento Alternativo/genética , Proteínas de Ligação a RNA/genética , Proteínas de Ligação a RNA/metabolismo , Neurogênese/genética , RNA/metabolismoRESUMO
BACKGROUND: Dementia is a life limiting disease following a progressive trajectory. As carers often become key decision makers, their knowledge of dementia will have health implications for the person living with dementia as well as carer's psychological wellbeing. AIM: To explore how sociodemographic factors, health literacy and dementia experience influence family carers knowledge about dementia. METHOD: In this cross-sectional, mixed methods study, we interviewed 150 family carers and assessed their dementia knowledge using the Dementia Knowledge Assessment Scale (DKAS). Linear regression analyses were used to examine whether health literacy, previous experiences of dementia, support group attendance and sociodemographic characteristics predicted knowledge. Sixteen carers also completed qualitative interviews which explored unmet information needs. Transcripts and field notes were thematically analysed. RESULTS: Most participants were partners (47%) or adult children (48%) and cared for someone with severe (32%) or moderate (43%) dementia. Mean DKAS scores were 34.8/50 (SD = 7.0, range = 17-48) reflecting 8/25 incorrect answers. Backwards elimination regression found greater dementia knowledge was associated with greater health literacy for appraising information (coef 3.48, 95% CI (1.38, 5.58); p = 0.001) and more years of education (coef 0.39, 95% CI (0.12, 0.65); p = 0.004). Although not significant, knowledge was slightly lower in those who attended a support group, and a trend was found between ability to understand health information and knowledge. Only 39% accurately identified dementia as life shortening, indicating notable gaps in knowledge. Four qualitative themes were identified; arm yourself with information, ability to steer through information, other experience of dementia can be helpful and the importance of relationships with health care professionals. CONCLUSIONS: In an information age, vast amounts of information are available, but this can bring difficulties. Carers with more years of education and higher health literacy knew more about dementia. Professionals should consider how carers with lower health literacy can be supported through provision of timely, relevant information.
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Demência , Letramento em Saúde , Adulto , Humanos , Cuidadores/psicologia , Estudos Transversais , Demência/psicologia , Filhos AdultosRESUMO
BACKGROUND: When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. METHODS: This was a mixed methods cross-sectional study. Family carers of people with dementia (n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample (n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. RESULTS: We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers' feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer. CONCLUSIONS: While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative's death.
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Luto , Demência , Assistência Terminal , Cuidadores/psicologia , Estudos Transversais , Demência/psicologia , Feminino , Humanos , Masculino , Pesquisa QualitativaRESUMO
PURPOSE: This feasibility and pilot study aimed to develop and field-test a 14-session virtual Cognitive Stimulation Therapy (vCST) programme for people living with dementia, developed as a result of services moving online during the COVID-19 pandemic. METHODS: The vCST protocol was developed using the existing group CST manual, through stakeholder consultation with people living with dementia, caregivers, CST group facilitators and dementia service managers. This protocol was then field-tested with 10 groups of people living with dementia in the Brazil, China (Hong Kong), India, Ireland and the UK, and feedback on the protocol was gathered from 14 facilitators. RESULTS: Field testing in five countries indicated acceptability to group facilitators and participants. Feedback from these groups was used to refine the developed protocol. The final vCST protocol is proposed, including session materials for delivery of CST over videoconferencing and a framework for offering CST virtually in global settings. CONCLUSION: vCST is a feasible online intervention for many people living with dementia. We recommend that it is offered to those unable to access traditional in-person CST for health reasons, lack of transport or COVID-19 restrictions. Further research is needed to explore if participant outcomes are comparable to in-person CST groups.