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INTRODUCTION: Hearing, vision, and cognitive impairment commonly co-occur in older people. However, the rate of recognition and appropriate management of combined hearing and vision impairment in people with dementia impairment is low. The aim of this work was to codevelop internationally relevant, multidisciplinary practice recommendations for professionals involved in the diagnosis, care, and management of older people with these concurrent conditions. METHODS: We applied consensus methods with professional and lay expert stakeholders, using an adapted version of the World Health Organization Handbook for Guideline Development. The development involved 4 phases and included: (1) collating existing evidence, (2) filling the gaps in evidence, (3) prioritising evidence, and (4) refining the final list of recommendations. Each phase encompassed various methodologies including a review of existing guidelines within the 3 clinical domains, systematic reviews, qualitative studies, a clinical professional consortium, surveys, and consensus meetings with interdisciplinary domain experts. RESULTS: The task force evaluated an initial list of 26 recommendations, ranking them in the order of priority. A consensus was reached on 15 recommendations, which are classified into 6 domains of "awareness and knowledge," "recognition and detection," "evaluation," "management," "support," and "services and policies." Pragmatic options for implementation for each domain were then developed. CONCLUSION: This is the first set of international, interdisciplinary practice recommendations that will guide the development of multidisciplinary services and policy to improve the lives of people with dementia and hearing and vision impairment.
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Disfunção Cognitiva , Demência , Idoso , Disfunção Cognitiva/diagnóstico , Demência/complicações , Demência/diagnóstico , Demência/terapia , Audição , Humanos , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: The use of assistive technology and telecare (ATT) has been promoted to manage risks associated with independent living in people with dementia but with little evidence for effectiveness. METHODS: Participants were randomly assigned to receive an ATT assessment followed by installation of all appropriate ATT devices or limited control of appropriate ATT. The primary outcomes were time to institutionalisation and cost-effectiveness. Key secondary outcomes were number of incidents involving risks to safety, burden and stress in family caregivers and quality of life. RESULTS: Participants were assigned to receive full ATT (248 participants) or the limited control (247 participants). After adjusting for baseline imbalance of activities of daily living score, HR for median pre-institutionalisation survival was 0.84; 95% CI, 0.63 to 1.12; P = 0.20. There were no significant differences between arms in health and social care (mean -£909; 95% CI, -£5,336 to £3,345, P = 0.678) and societal costs (mean -£3,545; 95% CI, -£13,914 to £6,581, P = 0.499). ATT group members had reduced participant-rated quality-adjusted life years (QALYs) at 104 weeks (mean - 0.105; 95% CI, -0.204 to -0.007, P = 0.037) but did not differ in QALYs derived from proxy-reported EQ-5D. DISCUSSION: Fidelity of the intervention was low in terms of matching ATT assessment, recommendations and installation. This, however, reflects current practice within adult social care in England. CONCLUSIONS: Time living independently outside a care home was not significantly longer in participants who received full ATT and ATT was not cost-effective. Participants with full ATT attained fewer QALYs based on participant-reported EQ-5D than controls at 104 weeks.
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Demência , Tecnologia Assistiva , Atividades Cotidianas , Análise Custo-Benefício , Demência/diagnóstico , Demência/terapia , Inglaterra , Humanos , Vida Independente , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de VidaRESUMO
OBJECTIVES: Hearing, vision, and cognitive impairment commonly co-occur in older adults. Improving sensory function may positively impact outcomes in people with dementia (PwD). We developed a "sensory intervention" (SI) to support hearing and vision in PwD. Here, we report the findings of an international open-label field trial, and nested case series, to explore the impact of the SI on dementia-related outcomes. METHODS: This was a home-based trial conducted in France, England, and Cyprus. Participants were people with mild-to-moderate dementia and hearing and/or vision impairment (n = 19) and their study partners (unpaid carers; n = 19). The "basic" SI included a hearing and vision assessment and provision of glasses and/or hearing aids. A subsample received the "extended" SI with additional weekly visits from a sensory support therapist (SST). Exploratory analyses of dementia-related, health utility and resource utilisation outcomes were performed. RESULTS: Quality of life (QoL) and sensory functional ability improved. Change in QoL exceeded the threshold for a minimum clinically important difference. There was a modest improvement (in absolute terms) post intervention in behavioural disturbance, self-efficacy, and relationship satisfaction. Study partner time assisting instrumental activities of daily living (iADL) and supervision decreased by about 22 and 38 hours per month, respectively, although time for personal ADL support increased. Qualitative data supported effectiveness of the intervention: PwD were more socially engaged, less isolated, less dependent on study partners, and had improved functional ability and communication. CONCLUSIONS: These findings support the need for a definitive randomised controlled trial (RCT) to evaluate the effectiveness of the intervention.
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Disfunção Cognitiva/complicações , Demência/complicações , Transtornos da Audição/etiologia , Transtornos da Audição/terapia , Perda Auditiva/reabilitação , Perda Auditiva/terapia , Qualidade de Vida/psicologia , Transtornos da Visão/etiologia , Transtornos da Visão/terapia , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Terapia Cognitivo-Comportamental , Demência/psicologia , Inglaterra , Feminino , França , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Hearing loss is highly prevalent in dementia; however, people with dementia are less likely to use hearing aids consistently than people with intact cognition are. This qualitative study is the first of its kind to explore factors that influence hearing aid use from the perspective of community-living people with mild to moderate dementia and their care partners. Eleven UK-based dyads from the European SENSE-Cog Randomized Controlled Trial of a sensory intervention for people with dementia completed semi-structured interviews based on the Theoretical Domains Framework (TDF). Our findings suggest that the TDF domains environmental context and resources, behavioral regulation, reinforcement, and social influences are of greatest relevance to hearing aid use in dementia. Within these domains, we identified a range of factors that may influence the target behavior of hearing aid use. The findings suggest that adoption of multifaceted, flexible intervention approaches may support hearing aid use in dementia.
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Demência , Auxiliares de Audição , Perda Auditiva , Pesquisa Qualitativa , Humanos , Auxiliares de Audição/psicologia , Demência/terapia , Demência/psicologia , Feminino , Masculino , Idoso , Perda Auditiva/reabilitação , Perda Auditiva/psicologia , Idoso de 80 Anos ou mais , Reino Unido , Cuidadores/psicologia , Entrevistas como Assunto , Pessoa de Meia-IdadeRESUMO
OBJECTIVES: To identify correlates of hearing aid use in people with dementia and age-related hearing loss. METHODS: Bivariate and multivariate logistic regression analyses of predictor variables from 239 participants with dementia and hearing loss in the European SENSE-Cog Randomized Controlled Trial (Cyprus, England, France, Greece, and Ireland). RESULTS: In multivariate analysis, four variables were significantly associated with hearing aid use: greater self-perceived hearing difficulties (OR 2.61 [CI 1.04-6.55]), lower hearing acuity (OR .39 [CI .2-.56]), higher cognitive ability (OR 1.19 [CI 1.08-1.31]), and country of residence. Participants in England had significantly increased odds of use compared to Cyprus (OR .36 [CI .14-.96]), France (OR .12 [CI .04-.34]) or Ireland (OR .05 [CI .01-.56]) but not Greece (OR 1.13 [CI .42-3.00]). CONCLUSIONS: Adapting interventions to account for cognitive ability, country of residence, self-perceived hearing difficulties, and hearing acuity may support hearing aid use in people with dementia.
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Parents' emotion coaching beliefs, a validated construct in majority White samples emphasizing the value of expressing and teaching about emotion, generally predict positive outcomes among White children. However, a racially and culturally sensitive emotion socialization model suggests a need for further understanding of this construct and potential differential outcomes among different racial groups. This study investigated three-way interactions among parental emotion coaching beliefs, toddlers' baseline respiratory sinus arrhythmia (RSA), and child race (Black or White), in predicting preschoolers' behavioral problem tendencies 1 year later. Participants included 204 children (140 White and 64 Black) and their families, recruited from low-income, rural areas. When children were 2, child baseline RSA was collected, and both parents answered questionnaires concerning their emotion coaching beliefs. When children were 3, mothers answered questions about child behavioral problem tendencies. Path analyses revealed a three-way interaction among paternal emotion coaching beliefs, child baseline RSA, and race, in predicting child internalizing tendencies 1 year later. In particular, among Black children, paternal emotion coaching beliefs showed a double-edged effect. It predicted lower internalizing tendencies when child baseline RSA was low, but higher internalizing tendencies when child baseline RSA was high. These associations were not found among White children. Maternal emotion coaching beliefs predicted lower internalizing tendencies regardless of child race and RSA. Findings were discussed in the context of an expanded emotion socialization model, with significant implications for furthering conceptualization and clinical practices. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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Emoções , Tutoria , Comportamento Problema , Feminino , Humanos , Mães , Pais , Socialização , População Branca , Negro ou Afro-AmericanoRESUMO
OBJECTIVE: To conduct a systematic review to determine whether clinical findings can be used to rule in or to rule out streptococcal pharyngitis in children. STUDY DESIGN: Two authors independently searched MEDLINE and EMBASE. We included articles if they contained data on the accuracy of symptoms or signs of streptococcal pharyngitis, individually or combined into prediction rules, in children 3-18 years of age. RESULTS: Thirty-eight articles with data on individual symptoms and signs and 15 articles with data on prediction rules met all inclusion criteria. In children with sore throat, the presence of a scarlatiniform rash (likelihood ratio [LR], 3.91; 95% CI, 2.00-7.62), palatal petechiae (LR, 2.69; CI, 1.92-3.77), pharyngeal exudates (LR, 1.85; CI, 1.58-2.16), vomiting (LR, 1.79; CI, 1.58-2.16), and tender cervical nodes (LR, 1.72; CI, 1.54-1.93) were moderately useful in identifying those with streptococcal pharyngitis. Nevertheless, no individual symptoms or signs were effective in ruling in or ruling out streptococcal pharyngitis. CONCLUSIONS: Symptoms and signs, either individually or combined into prediction rules, cannot be used to definitively diagnose or rule out streptococcal pharyngitis.
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Faringite/microbiologia , Exame Físico , Infecções Estreptocócicas/diagnóstico , Streptococcus pyogenes , Adolescente , Criança , Pré-Escolar , Técnicas de Apoio para a Decisão , Humanos , Faringite/diagnóstico , Sensibilidade e EspecificidadeRESUMO
This study examined the interplay between maternal depressive symptoms and emotion coaching in predicting preschoolers' emotion regulation skills. Participants included 126 preschoolers and their mothers, assessed at two time points, when children were 3 (T1) and 4 (T2). Mothers' coaching of sadness and anger was observationally assessed in a laboratory task at T1 under two categories, high and low elaborative styles of emotion coaching. Mothers also reported their depressive symptoms at T1. Children's emotion regulation was observed in laboratory tasks eliciting sadness and anger at T1 and T2. Path analyses revealed three-way interactions among maternal depressive symptoms, low elaborative emotion coaching, and high elaborative emotion coaching in predicting preschoolers' emotion regulation in both sadness- and anger-eliciting tasks 1 year later. Maternal low elaborative emotion coaching of sadness reduced children's focus on distress in the sadness-eliciting task only when mothers showed high depressive symptoms and used little high elaborative emotion coaching. In contrast, maternal low elaborative emotion coaching of sadness and anger predicted maladaptive child emotion regulation in both sadness- and anger-eliciting tasks, respectively, when mothers were depressed or used greater high elaborative emotion coaching. Findings highlight the importance of considering different types of maternal emotion coaching language styles in the context of maternal depression and have implications for intervention efforts. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
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Regulação Emocional , Tutoria , Criança , Depressão/psicologia , Emoções/fisiologia , Feminino , Humanos , Relações Mãe-Filho/psicologia , Mães/psicologiaRESUMO
OBJECTIVES: To report the effectiveness of, and barriers and facilitators to, hearing rehabilitation for care home residents with dementia. DESIGN: Systematic review. SETTING AND PARTICIPANTS: Care home residents with dementia and hearing loss. METHODS: No restrictions on publication date or language were set and gray literature was considered. Eligible studies were critically appraised and presented via a narrative review. RESULTS: Sixteen studies, most of low to moderate quality, were identified. Hearing rehabilitation, including hearing devices, communication techniques, and visual aids (eg, flashcards), was reported to improve residents' communication and quality of life and reduce agitation, with improvements in staff knowledge of hearing loss and job satisfaction. Residents' symptoms of dementia presented barriers, for example, losing or not tolerating hearing aids. Low staff prioritization of hearing loss due to time pressures and lack of hearing-related training for staff were further barriers, particularly for residents who required assistance with hearing devices. Adopting a person-centered approach based on residents' capabilities and preferences and involving family members facilitated hearing device use. CONCLUSIONS AND IMPLICATIONS: Residents with dementia can benefit from hearing rehabilitation. Identifying and implementing efficient, individualized hearing rehabilitation is necessary for those with complex cognitive needs. Increased funding and support for the social care sector is required to address systemic issues that pose barriers to hearing rehabilitation, including time pressures, lack of training for staff and access to audiology services for residents.
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Demência , Perda Auditiva , Demência/psicologia , Família , Audição , Humanos , Qualidade de Vida/psicologiaRESUMO
OBJECTIVES: To investigate factors that influence hearing aid use according to the Theoretical Domains Framework (TDF). The TDF is a behavioral science framework that aids understanding of factors that influence behavior. DESIGN: Systematic review. SETTING AND PARTICIPANTS: People living in the community with dementia and age-related hearing loss who have air conduction hearing aids. METHODS: Systematic literature review following PRISMA guidelines. We searched for studies in 9 databases, including Ovid MEDLINE, Scopus, and OpenGrey. We undertook an interpretive data synthesis by mapping findings onto the TDF. We assessed confidence in the findings according to the GRADE-CERQual approach. RESULTS: Twelve studies (6 quantitative, 3 qualitative, and 3 mixed methods) were included in the review. The majority of these were rated low-moderate quality. We identified 27 component constructs (facilitators, barriers, or noncorrelates of hearing aid use) nested within the 14 domains of the TDF framework. Our GRADE-CERQual confidence rating was high for 5 findings. These suggest that hearing aid use for people living in the community with dementia and hearing loss is influenced by (1) degree of hearing aid handling proficiency, (2) positive experiential consequences, (3) degree of hearing aid comfort or fit, (4) person-environment interactions, and (5) social reinforcement. CONCLUSIONS AND IMPLICATIONS: Hearing aid interventions should adopt a multifaceted approach that optimizes the capabilities of people with dementia to handle and use hearing aids; addresses or capitalizes on their motivation; and ensures their primary support network is supportive and encouraging of hearing aid use. The findings also emphasize the need for further high-quality research that investigates optimal hearing aid use, influencing factors, and interventions that support hearing aid use.
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Demência , Auxiliares de Audição , Perda Auditiva , Humanos , Qualidade de VidaRESUMO
The current study examined temporal associations between child emotion and maternal regulatory strategies in mother-child dyads. One hundred and 30 mothers and their 5-year-old children (46.1% boys) completed a challenging puzzle task, which was videotaped. Child positive and negative emotion as well as mothers' regulatory strategies including problem solving, providing approval, and comforting, were coded on a second-by-second basis from the videos. Multilevel modeling analyses were conducted to examine how maternal behaviors at a given time predicted the within-dyad variations of child positive and negative emotion 2 seconds later, controlling for the child's own prior emotion, as well as child emotion predicting subsequent maternal behaviors 2 seconds later, controlling for mothers' prior behaviors. In all models, child sex and negative emotionality as well as maternal depressive symptoms were included as between-dyad predictors, whereas maternal race and education were included as covariates. Results suggested that maternal approval and problem solving predicted within-dyad variation in subsequent child positive emotion. Both child positive and negative emotion was predictive of the within-dyad variation in mothers' subsequent use of strategies. Maternal depressive symptoms moderated the relations between prior and subsequent strategy uses for all three maternal behaviors. Our findings indicated that child emotion regulates, and is regulated by, maternal regulatory strategies. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
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Emoções , Relações Mãe-Filho , Masculino , Feminino , Humanos , Pré-Escolar , Relações Mãe-Filho/psicologia , Emoções/fisiologia , Mães/psicologia , Comportamento MaternoRESUMO
Background: There are few evidence-based non-pharmacological interventions adapted for people with dementia (PwD) in lower- and middle-income countries (LMIC). Thus, there is value in culturally adapting existing interventions from other settings. One such intervention for PwD involves hearing rehabilitation, which may improve dementia-related outcomes. Objective: To culturally adapt and evaluate the feasibility and acceptability of a multi-faceted hearing support intervention to enhance quality of life in PwD for a LMIC setting, Pakistan. Design: This was a study in three phases: (1) training and capacity building to deliver the study, including Patient and Public Involvement (PPI); (2) cultural adaptation of the intervention; and (3) delivery of a single-group feasibility study with a pre-test post-test design. Setting: Home-based intervention, in two cities of Pakistan. Participants: Adults aged ≥ 60 with mild-moderate dementia and uncorrected or partially corrected hearing impairment, and their study partners (n = 14). Intervention: An adapted hearing support intervention (HSI) comprising a full assessment of hearing function, fitting of hearing aids, and home-based support from a "hearing support practitioner." Outcomes: Ratings of the feasibility of the study procedures, and acceptability/tolerability of the adapted intervention were ascertained through questionnaires, participant diaries, therapist logbooks and semi-structured interviews. A signal of effectiveness of the intervention was also explored using a battery of dementia-related outcome measures. Results: Following cultural adaptation and capacity building for study conduct and delivery, we successfully implemented all intervention components in most participants, which were well-received and enacted by participant dyads. Acceptability (i.e., understanding, motivation, sense of achievement) and tolerability (i.e., effort, fatigue) ratings and safety of the intervention were within a priori target ranges. Recruitment and retention targets required improvement, due to the COVID-19 pandemic outbreak, as well as the lack of a clear clinical diagnostic pathway for dementia in both sites. Areas for future modification were clearly identified, including: the assessment/delivery logistics circuit; procedures for arranging visits; communication among referring clinicians and the study team. Conclusion: This is the first study in a LMIC of sensory enhancement to improve dementia outcomes. Positive feasibility, acceptability and tolerability findings suggest that a full-scale effectiveness trial, with certain modifications is warranted.
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BACKGROUND: Assistive technology and telecare have been promoted to manage the risks associated with independent living for people with dementia, but there is limited evidence of their effectiveness. OBJECTIVES: This trial aimed to establish whether or not assistive technology and telecare assessments and interventions extend the time that people with dementia can continue to live independently at home and whether or not they are cost-effective. Caregiver burden, the quality of life of caregivers and of people with dementia and whether or not assistive technology and telecare reduce safety risks were also investigated. DESIGN: This was a pragmatic, randomised controlled trial. Blinding was not undertaken as it was not feasible to do so. All consenting participants were included in an intention-to-treat analysis. SETTING: This trial was set in 12 councils in England with adult social services responsibilities. PARTICIPANTS: Participants were people with dementia living in the community who had an identified need that might benefit from assistive technology and telecare. INTERVENTIONS: Participants were randomly assigned to receive either assistive technology and telecare recommended by a health or social care professional to meet their assessed needs (a full assistive technology and telecare package) or a pendant alarm, non-monitored smoke and carbon monoxide detectors and a key safe (a basic assistive technology and telecare package). MAIN OUTCOME MEASURES: The primary outcomes were time to admission to care and cost-effectiveness. Secondary outcomes assessed caregivers using the 10-item Center for Epidemiological Studies Depression Scale, the State-Trait Anxiety Inventory 6-item scale and the Zarit Burden Interview. RESULTS: Of 495 participants, 248 were randomised to receive full assistive technology and telecare and 247 received the limited control. Comparing the assistive technology and telecare group with the control group, the hazard ratio for institutionalisation was 0.76 (95% confidence interval 0.58 to 1.01; p = 0.054). After adjusting for an imbalance in the baseline activities of daily living score between trial arms, the hazard ratio was 0.84 (95% confidence interval 0.63 to 1.12; p = 0.20). At 104 weeks, there were no significant differences between groups in health and social care resource use costs (intervention group - control group difference: mean -£909, 95% confidence interval -£5336 to £3345) or in societal costs (intervention group - control group difference: mean -£3545; 95% confidence interval -£13,914 to £6581). At 104 weeks, based on quality-adjusted life-years derived from the participant-rated EuroQol-5 Dimensions questionnaire, the intervention group had 0.105 (95% confidence interval -0.204 to -0.007) fewer quality-adjusted life-years than the control group. The number of quality-adjusted life-years derived from the proxy-rated EuroQol-5 Dimensions questionnaire did not differ between groups. Caregiver outcomes did not differ between groups over 24 weeks. LIMITATIONS: Compliance with the assigned trial arm was variable, as was the quality of assistive technology and telecare needs assessments. Attrition from assessments led to data loss additional to that attributable to care home admission and censoring events. CONCLUSIONS: A full package of assistive technology and telecare did not increase the length of time that participants with dementia remained in the community, and nor did it decrease caregiver burden, depression or anxiety, relative to a basic package of assistive technology and telecare. Use of the full assistive technology and telecare package did not increase participants' health and social care or societal costs. Quality-adjusted life-years based on participants' EuroQol-5 Dimensions questionnaire responses were reduced in the intervention group compared with the control group; groups did not differ in the number of quality-adjusted life-years based on the proxy-rated EuroQol-5 Dimensions questionnaire. FUTURE WORK: Future work could examine whether or not improved assessment that is more personalised to an individual is beneficial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN86537017. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 19. See the NIHR Journals Library website for further project information.
Many people with dementia living at home are recommended assistive technology and telecare to help them remain living safely and independently in the community. These devices are meant to assist and support activities such as taking medication or cooking, or to raise an alert when there is an issue, such as a fire; however, there is currently little evidence to support such claims. This trial investigated whether or not assistive technology and telecare could delay people moving into residential care and keep them any safer than alternatives, and whether or not they were cost-effective. We recruited 495 people with dementia and their unpaid caregivers, who were randomly assigned to receive either a package of assistive technology and telecare recommended by a health or social care professional or alternative support involving only basic assistive technology and telecare. We monitored the residential status, the use of health-care services and the health and well-being of participants with dementia and their caregivers over a 2-year period. Researchers also spent time with participants to see how they were living with the technology. The trial found no difference in the time that people with dementia with full assistive technology and telecare remained at home, nor any reduction in the number of safety incidents, compared with the participants who received basic assistive technology and telecare only. Full assistive technology and telecare did not increase health and social care costs. It did not improve the well-being of people with dementia or that of their caregivers. People with dementia who had full assistive technology and telecare rated their quality of life poorer than those with basic assistive technology and telecare did, but their caregivers rated their quality of life as about the same as caregivers of people with basic assistive technology and telecare. The technology sometimes averted crises but also disrupted people's everyday lives. These results suggest that assistive technology and telecare for people with dementia provided in real-world conditions may not be as beneficial as previously claimed. The way that assistive technology and telecare services are organised bears further investigation to see how these services could be improved.
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Demência , Tecnologia Assistiva , Atividades Cotidianas , Adulto , Humanos , Vida Independente , Qualidade de VidaRESUMO
The socialization of emotion in preschool-aged children is an important developmental task, which is associated with a number of socioemotional outcomes. This study examined the contribution of both fathers' and mothers' emotion coaching to their 3- to 4-year-old children's emotion socialization. Two time points of data were collected for 69 families. We employed a time sampling observational method to capture the emotion socialization process in the naturalistic home environment. Fathers' and mothers' emotion coaching and expression, as well as children's emotion expression, were assessed at home using an audio recording device. Children's emotion expressions were also captured during an emotion eliciting task in a lab setting 1 year later. Regression analyses revealed that children of more positively expressive fathers also showed more positive emotion expression concurrently. Paternal emotion coaching, but not maternal emotion coaching, was predictive of children's increased positive expression in the lab 1 year later. This study provides evidence for unique contributions of fathers, above and beyond mothers, to the emotion socialization outcomes of their children. (PsycINFO Database Record (c) 2020 APA, all rights reserved).
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Emoções , Relações Pai-Filho , Poder Familiar , Socialização , Adulto , Pré-Escolar , Feminino , Seguimentos , Humanos , Masculino , Relações Mãe-FilhoRESUMO
BACKGROUND: Optimising hearing and vision function may be important in improving a range of outcomes for people living with dementia (PwD) and their companions. The SENSE-Cog cross-national randomised controlled trial (RCT) is evaluating the effectiveness of a sensory intervention (SI) to improve quality of life for PwD with concurrent hearing and/or vision impairment, in five European countries. To ascertain how or why the intervention will, or will not, achieve its outcomes, we have designed a process evaluation to explore potential discrepancies between expected and observed outcomes. This will also help us to understand how context may influence the outcomes. Here we describe the protocol for this process evaluation, which is embedded within the RCT. METHODS/DESIGN: We will use a mixed methods approach with a theoretical framework derived from the UK Medical Research Council's' guidance on process evaluations. It will include the following: (1) evaluating how key aspects of the intervention will be delivered, which will be important to scale the intervention in real world populations; (2) characterising the contextual issues, which may shape the delivery and the impact of the intervention in different countries; and (3) investigating possible causal mechanisms through analyses of potential moderators and mediators. To avoid bias, we will analyse the process data before the analysis of the main effectiveness outcomes. DISCUSSION: This evaluation will provide insight into how the complex SENSE-Cog SI will be tailored, enacted and received across the different European contexts, all of which have unique health and social care economies. The findings will provide insight into the causal mechanisms effecting change, and will determine whether we should implement the intervention, if effective, on a wider scale for PwD and concurrent sensory impairment. TRIAL REGISTRATION: ISRCTN, ISRCTN17056211. Registered on 19 February 2018.
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Demência/complicações , Transtornos da Audição/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Transtornos da Visão/terapia , Demência/fisiopatologia , Demência/psicologia , Humanos , Qualidade de VidaRESUMO
In July 2019, Belo Horizonte hosted an international workshop for 27 junior researchers, whose participants were from Brazil and the United Kingdom. This three-day meeting organized by the Universidade Federal de Minas Gerais and the University of East Anglia addressed challenges in cognitive impairment and dementia, with particular interest in public perceptions, diagnosis and care management. The purpose of this report is to highlight the outcomes of the above-mentioned workshop regarding the topic of public perceptions (part I). Discussions focused on differences and similarities between countries, as well as on identifying main issues that required collaborative and creative solutions. After these group discussions, four core themes emerged: I) cognitive impairment; II) dementia - beyond Alzheimer's disease; III) prevention; and IV) stigma. National and international initiatives to deal with public misperceptions about cognitive impairment and dementia were discussed.
Em julho de 2019, Belo Horizonte sediou um workshop internacional cujos participantes foram 27 pesquisadores do Brasil e do Reino Unido. Essa reunião de três dias, organizada pela Universidade Federal de Minas Gerais e pela Universidade de East Anglia, abordou os desafios no comprometimento cognitivo e na demência, com interesse particular nas percepções do público, diagnóstico e gerenciamento de cuidados. O objetivo deste relatório foi destacar os resultados do workshop sobre o tópico percepções do público (parte I). O enfoque das discussões foi nas semelhanças e diferenças entre os países, bem como na identificação dos principais problemas que necessitam soluções criativas e colaborativas. Após essas discussões em grupo, quatro temas principais foram elencados: I) comprometimento cognitivo; II) demência - além da doença de Alzheimer; III) prevenção; e IV) estigma. Foram discutidas iniciativas nacionais e internacionais para lidar com as percepções alteradas do público sobre comprometimento cognitivo e demência.
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INTRODUCTION: Assistive technology and telecare (ATT) may alleviate psychological burden in informal caregivers of people with dementia. This study assessed the impact of ATT on informal caregivers' burden and psychological well-being. METHODS: Individuals with dementia and their informal caregivers were recruited to a randomized-controlled trial assessing effectiveness of ATT. Caregivers were allocated to two groups according to their cared-for person's randomization to a full or basic package of ATT and were assessed on caregiver burden, state anxiety, and depression. Caregivers' data from three assessments over 6 months of the trial were analyzed. RESULTS: No significant between- or within-group differences at any time point on caregivers' burden, anxiety, and depression levels were found. DISCUSSION: Full ATT for people with dementia did not impact caregivers' psychological outcomes compared to basic ATT. The length of follow up was restricted to 6 months.
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Dementia caregiving is thought to have a negative impact on health and wellbeing. This critical review of qualitative literature explored the lived experience of familial dementia caregivers from an occupational therapy perspective. The method was informed by systematic review and qualitative research methodologies and was structured within the occupational dimensions framework of doing-being-becoming-belonging. A comprehensive search of major databases was undertaken which identified 484 studies on the topic; 14 met the inclusion criteria and were included in the review. Ten themes emerged within the doing-being-becoming-belonging framework from the analysis of the studies. The occupational participation of caregivers is conveyed within the 'doing' domain. Ways in which caregiving impacts upon opportunities for self-nurture are presented within the 'being' domain. The 'becoming' domain elucidates ways in which caregivers redefine themselves, their values and their priorities through their caregiving role. The 'belonging' domain depicts ways in which caregivers' connections with their care recipient and others are shaped over time. Practice implications for health and social care practitioners who work with familial dementia caregivers are presented in light of the findings.
Assuntos
Cuidadores/psicologia , Demência/psicologia , Terapia Ocupacional , Adaptação Psicológica , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: Hearing and vision impairments are highly prevalent in people with dementia and may have a negative impact on quality of life and other dementia-related outcomes. Intervening to optimise sensory impairment and support sensory function may be a means of improving dementia-related outcomes. The SENSE-Cog trial will test whether a home-based multi-part sensory intervention is effective in improving quality of life and other key outcomes in people with dementia and hearing or vision problems (or both) and their companions. METHODS: This is an European, multi-centre, observer-blind, pragmatic, randomised controlled trial. Three hundred fifty four people with dementia and hearing or vision impairment (or both) and their companions will be randomly assigned to receive either "care as usual" or a multi-component sensory intervention including assessment and correction of hearing or vision impairments (or both), home-based (maximum 10 visits over 18 weeks), therapist-delivered sensory support (that is, adherence to devices; improving the sensory environment (that is, lighting), communication training, and sign-posting to other support agencies). Change from baseline to intervention end (18 weeks) and post-intervention (36 weeks) will be compared between the two arms in the following outcomes: quality of life (primary endpoint), sensory and cognitive functional ability, relationships, mental well-being, health resource utilisation and cost-effectiveness. DISCUSSION: This is one of two articles outlining the SENSE-Cog trial. Here, we describe the protocol for the effectiveness of the SENSE-Cog intervention. A parallel and complementary process evaluation will be described elsewhere. If the SENSE-Cog trial demonstrates that the sensory intervention improves outcomes in dementia, we will make a toolkit of training materials, resources and information available to health and social care providers to implement the intervention in routine practice. This will be a significant contribution to the therapeutic management of people with dementia and sensory impairment. TRIAL REGISTRATION: ISRCTN (Trial ID: ISRCTN17056211 ) on 19 February 2018.
Assuntos
Demência/psicologia , Transtornos da Audição/terapia , Ensaios Clínicos Pragmáticos como Assunto , Qualidade de Vida , Transtornos da Visão/terapia , Idoso , Idoso de 80 Anos ou mais , Análise Custo-Benefício , Humanos , Consentimento Livre e Esclarecido , Estudos Multicêntricos como Assunto , Avaliação de Resultados em Cuidados de Saúde , Seleção de Pacientes , Tamanho da AmostraRESUMO
OBJECTIVES: People with dementia (PwD) frequently experience hearing and vision impairment that is underrecognized and undertreated, resulting in reduced quality of life. Managing these impairments may be an important strategy to improve outcomes in PwD. Our objective was to field-trial a multifaceted sensory intervention (SI) to enhance hearing and vision in PwD. DESIGN: An international single-arm open-label feasibility, acceptability, and tolerability study. SETTING: Home-based setting in the United Kingdom, France, and Cyprus. PARTICIPANTS: Adults aged 60 years and older with mild-to-moderate dementia and uncorrected or suboptimally corrected hearing and/or vision impairment, and their study partners (n = 19 dyads). INTERVENTION: A sensory intervention (SI), comprising assessment of hearing and vision, fitting of corrective devices (glasses, hearing aids), and home-based support from a sensory support therapist for device adherence and maintenance, communication training, referral to support services, environmental sensory modification, and optimization of social inclusion. MEASUREMENTS: Ratings of study procedure feasibility, and intervention acceptability/tolerability, ascertained through questionnaires, participant diaries, therapist logbooks, and semistructured interviews. RESULTS: We successfully delivered all intervention components, and these were received and enacted as intended in all those who completed the intervention. No serious adverse events were reported. Acceptability (ie, understanding, motivation, sense of achievement) and tolerability (ie, effort, fatigue) ratings of the intervention were within a priori target ranges. We met recruitment and retention (93.8%) targets in two of the three sites. Participants completed more than 95% of diary entries, representing minimal missing data. Delays in the logistics circuit for the assessment and delivery of hearing aids and glasses were identified, requiring modification. The need for minor modifications to some outcome measures and the inclusion criteria were identified. CONCLUSION: This is the first study combining home-based hearing and vision remediation in PwD. The positive feasibility, acceptability, and tolerability findings suggest that a full-scale efficacy trial, with certain modifications, is achievable.