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1.
Am J Med Genet C Semin Med Genet ; 196(1): e32081, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38197535

RESUMO

The National Institutes of Health (NIH) has a long-standing history of support for research in Down syndrome (DS). In response to a 2018 congressional directive for a trans-NIH initiative to address medical issues in DS, NIH launched the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). Reflecting the three INCLUDE components of basic science research, cohort development, and clinical trials, the Project has published funding opportunities to address conditions such as immune disorders and Alzheimer's disease. Due to a steady expansion in dedicated funding over its first 5 years, INCLUDE has invested $258 M in over 250 new research projects. INCLUDE also supports training initiatives to expand the number and diversity of investigators studying DS. NIH has funded an INCLUDE Data Coordinating Center that is collecting de-identified clinical information and multi-omics data from research participants for broad data sharing and secondary analyses. Through the DS-Connect® registry, INCLUDE investigators can access recruitment support. The INCLUDE Research Plan articulates research goals for the program, with an emphasis on diversity of research participants and investigators. Finally, a new Cohort Development Program is poised to increase the impact of the INCLUDE Project by recruiting a large DS cohort across the lifespan.


Assuntos
Doença de Alzheimer , Pesquisa Biomédica , Síndrome de Down , Estados Unidos/epidemiologia , Humanos , Longevidade , National Institutes of Health (U.S.)
2.
BMC Geriatr ; 23(1): 254, 2023 04 28.
Artigo em Inglês | MEDLINE | ID: mdl-37106334

RESUMO

BACKGROUND: There is still a need for more information about the different trajectories of responsive behaviours that people living with dementia present in long-term care homes (LTC). OBJECTIVE: This study identified subgroups of individuals with similar trajectories of responsive behaviours related to dementia in LTC and evaluated the role of demographic variables, depressive symptomatology, social engagement, cognitive functioning, and activities of daily living (ADL) on class membership. METHODS: Growth mixture models were run using data from the Continuing Care Reporting System. RESULTS: Results suggest that change in responsive behaviours is best represented by seven classes of trajectories. The largest class was composed of individuals who presented the lowest frequency of behaviours upon entry in LTC that increased at a slow linear rate. The other classes were composed of individuals who presented different frequencies of behaviours upon entry in LTC and varying rates of change (e.g., individuals who presented a low frequency of behaviours upon entry in LTC that increased at a linear rate followed by a decrease in the later months, individuals who presented a high frequency of responsive behaviours upon entry in LTC and that remained stable). Cognitive functioning, social engagement, depressive symptomatology, and ADL were markers of class membership. CONCLUSIONS: These findings can help identify individuals at increased risk of presenting a high frequency of responsive behaviours and highlight interventions that could decrease behaviours in LTC.


Assuntos
Demência , Assistência de Longa Duração , Humanos , Atividades Cotidianas , Cognição , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia
3.
Front Public Health ; 10: 997981, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36339159

RESUMO

Policies supporting caregivers ("caregiver policies") are limited in the extent to which they meet the needs of those who care for others. Where policies do exist, they focus on relieving the burdens associated with caring or the needs of the person they care for, rather than consider the holistic needs of the caregiver that would enable them to flourish. We argue that the established approach to caregiver policies reflects a policy failure, requiring a reassessment of current practice related to caregiver support. Often, caregiver policies target the care recipient rather than the caregiver's needs. Through a consultative exercise, we identified five areas of need that existing caregiver policies touch upon. Yet current approaches remain piecemeal and inadequate in a global context. Caregiver policies should not just relieve burden to the extent that caregivers can continue in the role, but they should support caregivers to flourish, and future work may benefit from drawing on related frameworks from positive psychology, such as the PERMA™ model; this is important for both policymakers and researchers.


Assuntos
Cuidadores , Políticas , Humanos , Cuidadores/psicologia
4.
AJPM Focus ; 1(2): 100033, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37791240

RESUMO

Introduction: Few healthy eating, school-based interventions have been rigorously evaluated in American Indian communities. Gardening and healthy eating are priorities in the Navajo Nation. Collaborations between researchers and local partners supported the design and implementation of this project. Design: The Yéego! Healthy Eating and Gardening Study was a group-randomized controlled trial to evaluate a school-based healthy eating and gardening intervention in 6 schools in the Navajo Nation. Schools were randomized 1:2 to intervention or comparison. Setting/participants: The Shiprock and Tsaile/Chinle areas in the Navajo Nation were selected. Elementary schools were screened for eligibility. All students in third and fourth grades were invited to participate in the assessments. Intervention: Delivered during 1 school year in the intervention schools, the intervention included a culturally relevant nutrition and gardening curriculum and a school garden. Main outcome measures: Student self-efficacy for eating fruits and vegetables, student self-efficacy for gardening, and student healthy foods score from a modified Alternative Healthy Eating Index were assessed in third and fourth graders at the beginning and end of a school year affected by the COVID-19 pandemic. Primary analyses used repeated measures linear mixed models accounting for students nested within schools to estimate the intervention effect and 95% CIs. Results: Students in the intervention schools had self-efficacy scores for eating fruits and vegetables that were 0.22 points greater (95% CI=0.04, 0.41) than those in the comparison schools, although the student healthy foods score increased in the intervention schools by 2.0 (95% CI=0.4, 3.6); the differential change was modest at 1.7 (95% CI=-0.3, 3.7). The self-efficacy to grow fruits and vegetables in the school garden increased among those in the intervention schools (OR=1.92; 95% CI=1.02, 3.63) but not significantly more than it increased in the comparison schools (OR=1.29; 95% CI=0.60, 2.81). Conclusions: The intervention was efficacious in improving self-efficacy for eating fruits and vegetables among third- and fourth-grade students over a school year. The findings warrant further evaluation of the intervention in larger-group randomized trials with schools in Navajo communities. Trial registration: This study is registered at clinicaltrials.gov NCT03778021.

5.
Arts Health ; 14(3): 295-308, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-34152259

RESUMO

INTRODUCTION: Traditional methods of research have frequently failed to accommodate the communication difficulties experienced by a significant proportion of residents living in long-term care. In dementia research, specifically, there is cause for more collaborative, creative ways of working. METHODS: The Linking Lives Through Care study is a performance-based narrative inquiry that will take place in a long-term care setting and will bring together all three members of the care triad - residents who are living with dementia, family members and personal support workers - to explore relational care from multiple positions and perspectives. DISCUSSION: In this article, we discuss the design choices and creative measures taken to ensure a more inclusive research environment, specifically for those participants who are cognitively frail and/or may find it difficult to express their views using just words.


Assuntos
Demência , Humanos , Demência/terapia , Assistência de Longa Duração , Família , Comunicação , Narração
6.
Biomedicines ; 9(8)2021 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-34440140

RESUMO

The FDA's approval of peptide drugs such as Ziconotide or Exendin for pain relief and diabetes treatment, respectively, enhanced the interest to explore novel conotoxins from Conus species venom. In general, conotoxins can be used in pathologies where voltage-gated channels, membrane receptors, or ligands alter normal physiological functions, as in metabolic diseases such as Type 2 diabetes. In this study, the synthetic cal14.2b (s-cal14.2b) from the unusual Californiconus californicus demonstrated bioactivity on NIT-1 insulinoma cell lines stimulating insulin secretion detecting by high performance liquid chromatography (HPLC). Accordingly, s-cal14.2b increased the CaV1.2/1.3 channel-current by 35 ± 4% with a recovery τ of 10.3 ± 4 s in primary cell culture of rat pancreatic ß-cells. The in vivo results indicated a similar effect of insulin secretion on mice in the glucose tolerance curve model by reducing the glucose from 500 mg/dL to 106 mg/dL in 60 min, compared to the negative control of 325 mg/dL at the same time. The PET-SCAN with radiolabeling 99mTc-s-cal14.2b demonstrated biodistribution and accumulation in rat pancreas with complete depuration in 24 h. These findings show the potential therapeutic use of s-cal14.2b in endocrinal pathologies such as early stages of Type 2 Diabetes where the pancreas's capability to produce insulin is still effective.

7.
MMWR Morb Mortal Wkly Rep ; 69(33): 1139-1143, 2020 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-32817597

RESUMO

Preventing coronavirus disease 2019 (COVID-19) in correctional and detention facilities* can be challenging because of population-dense housing, varied access to hygiene facilities and supplies, and limited space for isolation and quarantine (1). Incarcerated and detained populations have a high prevalence of chronic diseases, increasing their risk for severe COVID-19-associated illness and making early detection critical (2,3). Correctional and detention facilities are not closed systems; SARS-CoV-2, the virus that causes COVID-19, can be transmitted to and from the surrounding community through staff member and visitor movements as well as entry, transfer, and release of incarcerated and detained persons (1). To better understand SARS-CoV-2 prevalence in these settings, CDC requested data from 15 jurisdictions describing results of mass testing events among incarcerated and detained persons and cases identified through earlier symptom-based testing. Six jurisdictions reported SARS-CoV-2 prevalence of 0%-86.8% (median = 29.3%) from mass testing events in 16 adult facilities. Before mass testing, 15 of the 16 facilities had identified at least one COVID-19 case among incarcerated or detained persons using symptom-based testing, and mass testing increased the total number of known cases from 642 to 8,239. Case surveillance from symptom-based testing has likely underestimated SARS-CoV-2 prevalence in correctional and detention facilities. Broad-based testing can provide a more accurate assessment of prevalence and generate data to help control transmission (4).


Assuntos
Técnicas de Laboratório Clínico/estatística & dados numéricos , Infecções por Coronavirus/epidemiologia , Surtos de Doenças/prevenção & controle , Programas de Rastreamento , Pneumonia Viral/epidemiologia , Prisões , COVID-19 , Teste para COVID-19 , Infecções por Coronavirus/diagnóstico , Infecções por Coronavirus/prevenção & controle , Habitação/estatística & dados numéricos , Humanos , Pandemias/prevenção & controle , Pneumonia Viral/prevenção & controle , Prevalência , Estados Unidos/epidemiologia
8.
Age Ageing ; 49(5): 692-695, 2020 08 24.
Artigo em Inglês | MEDLINE | ID: mdl-32377666

RESUMO

The goal of this commentary is to highlight the ageism that has emerged during the COVID-19 pandemic. Over 20 international researchers in the field of ageing have contributed to this document. This commentary discusses how older people are misrepresented and undervalued in the current public discourse surrounding the pandemic. It points to issues in documenting the deaths of older adults, the lack of preparation for such a crisis in long-term care homes, how some 'protective' policies can be considered patronising and how the initial perception of the public was that the virus was really an older adult problem. This commentary also calls attention to important intergenerational solidarity that has occurred during this crisis to ensure support and social-inclusion of older adults, even at a distance. Our hope is that with this commentary we can contribute to the discourse on older adults during this pandemic and diminish the ageist attitudes that have circulated.


Assuntos
Etarismo , Envelhecimento , Infecções por Coronavirus , Relação entre Gerações , Pandemias , Pneumonia Viral , Instituições Residenciais/normas , Idoso , Etarismo/prevenção & controle , Etarismo/psicologia , Etarismo/tendências , Envelhecimento/ética , Envelhecimento/psicologia , Betacoronavirus , COVID-19 , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/psicologia , Humanos , Determinação de Necessidades de Cuidados de Saúde , Pneumonia Viral/epidemiologia , Pneumonia Viral/psicologia , Opinião Pública , SARS-CoV-2 , Percepção Social
9.
Am J Health Promot ; 34(6): 681-685, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31986899

RESUMO

PURPOSE: Develop and evaluate a mammography intervention that provides hope about cancer prevention and treatment. DESIGN: Pilot randomized controlled trial. SETTING: Two communities on the Navajo Nation. PARTICIPANTS: Navajo women and support persons. INTERVENTION: Both groups received standard care: one home visit discussing mammography pros/cons and barriers. The treatment group received an intervention based on Navajo language via an additional home visit with health education materials (written and oral) in English and Navajo, including a Navajo Cancer Glossary with a new descriptive phrase for cancer. ANALYSIS: Between control and intervention conditions, we compared baseline sociodemographics; changes from baseline to 3 months on mammography completion and breast cancer literacy scores. MEASURES: (1) intervention feasibility; (2) self- and clinic-reported mammography screening completion; (3) breast cancer literacy. RESULTS: A total of 25 participants were randomly assigned (13 treatment, 12 control), with 7 support persons in each arm. Mean age was 53 years, 90% had a high school degree or higher, 86% spoke Navajo and English. At 3 months, 44% had a clinically verified mammogram. Mammography completion was 57% among those with a support person and 27% among those without (P = .14). Intervention women reported more breast cancer beliefs consistent with mammography (P = .015). CONCLUSIONS: Increases in breast cancer beliefs consistent with mammography show promise. Findings highlight a need to tailor education materials to Navajo culture/language and focus on enhancing support.


Assuntos
Indígena Americano ou Nativo do Alasca , Neoplasias da Mama , Detecção Precoce de Câncer , Letramento em Saúde , Neoplasias da Mama/diagnóstico por imagem , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Idioma , Mamografia , Programas de Rastreamento , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Projetos Piloto
10.
Can Geriatr J ; 22(1): 13-22, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31501679

RESUMO

BACKGROUND: The trajectory of dementia through time is characterized by common transitions which are difficult for persons with dementia (PWDs) and their families and friends. Our study sought to identify determinants for the quality of transition outcomes. METHOD: A 24-month, prospective, longitudinal design identified specific transitions as they occurred in 108 person-with-dementia/caregiver dyads, and assessed the perceived transition quality from the perspective of the caregiver and what we denote as the 'summative' transition quality outcome variable (as explained in the Data Processing section under Methods). RESULTS: Among caregivers and during the authors' deliberations of the summative transition quality outcomes, good transition quality was associated with the PWD's baseline Disability Assessment for Dementia (OR 1.04, 95% CI 1.02-1.06 per increase in percent score based on summative assessments), and with the PWD's higher baseline quality of life scores (OR 1.11, 95% CI 1.05-1.18 per increase in unit of score in QOL-AD based on summative assessments). Caregiver-perceived better outcome quality was associated with lower caregiver burden, (OR 0.97, 95% CI 0.95-0.99 per unit CBI score increase). CONCLUSION: Identifying determinants of successful transitions is feasible and may be translated into practical guidance for use in clinical encounters. Those with worse prior quality of life or worse performance in activities of daily living appear to require specific support during transitions, as do those whose caregivers report higher levels of burden.

11.
Kidney Int ; 94(6): 1205-1216, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30466566

RESUMO

An epidemic of chronic kidney disease (CKD) of unknown etiology, known as Mesoamerican Nephropathy (MeN), has been ongoing in Latin America for at least two decades. MeN primarily affects young adults without traditional CKD risk factors, and agricultural workers are disproportionately afflicted. We previously identified an acute phase of MeN that involves acute kidney injury (AKI) with tubulointerstitial nephritis and systemic inflammation. Because clinical disease progression in MeN is not yet understood, we sought to determine clinical predictors for progression from acute MeN to CKD. Through ongoing surveillance in Nicaragua, local physicians reported cases of acute MeN and CKD among agricultural workers. We analyzed clinical data collected during the acute MeN encounter to identify factors associated with progression to CKD. From February 2015 to May 2017, 586 agricultural workers (median age 27.8 years, 90% male) presented with acute MeN. The majority had a normal baseline creatinine, and leukocyturia (98.8%) and peripheral leukocytosis (80.7%) were common. Ultimately, 49 (8.4%) progressed to CKD, the majority of those within 6 months. CKD was attributed to MeN in all cases, and none had diabetes or hypertension. The strongest predictors of CKD progression were anemia and paresthesias at presentation, while leukocytosis was associated with renal recovery. Clinical markers of acute MeN may help clinicians identify patients at high risk for rapid progression to CKD, which in turn can inform early clinical management. Future studies should seek to determine the underlying etiology of disease and identify optimal interventions to interrupt the pathophysiologic process of MeN.


Assuntos
Injúria Renal Aguda/patologia , Nefrite Intersticial/patologia , Insuficiência Renal Crônica/diagnóstico , Injúria Renal Aguda/sangue , Adulto , Biomarcadores/análise , Progressão da Doença , Feminino , Taxa de Filtração Glomerular , Humanos , Incidência , Masculino , Nicarágua/epidemiologia , Prognóstico , Estudos Prospectivos , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/patologia , Medição de Risco/métodos , Fatores de Risco , Adulto Jovem
12.
Mar Drugs ; 16(4)2018 Mar 31.
Artigo em Inglês | MEDLINE | ID: mdl-29614715

RESUMO

Variable new antigen receptor domain (vNAR) antibodies are novel, naturally occurring antibodies that can be isolated from naïve, immune or synthetic shark libraries. These molecules are very interesting to the biotechnology and pharmaceutical industries because of their unique characteristics related to size and tissue penetrability. There have been some approved anti-angiogenic therapies for ophthalmic conditions, not related to vNAR. This includes biologics and chimeric proteins that neutralize vascular endothelial growth factor (VEGF)165, which are injected intravitreal, causing discomfort and increasing the possibility of infection. In this paper, we present a vNAR antibody against human recombinant VEGF165 (rhVEGF165) that was isolated from an immunized Heterodontus francisci shark. A vNAR called V13, neutralizes VEGF165 cytokine starting at 75 µg/mL in an in vitro assay based on co-culture of normal human dermal fibroblasts (NHDFs) and green fluorescence protein (GFP)-labeled human umbilical vein endothelial cells (HUVECs) cells. In the oxygen-induced retinopathy model in C57BL/6:Hsd mice, we demonstrate an endothelial cell count decrease. Further, we demonstrate the intraocular penetration after topical administration of 0.1 µg/mL of vNAR V13 by its detection in aqueous humor in New Zealand rabbits with healthy eyes after 3 h of application. These findings demonstrate the potential of topical application of vNAR V13 as a possible new drug candidate for vascular eye diseases.


Assuntos
Produtos Biológicos/farmacocinética , Doenças Retinianas/tratamento farmacológico , Tubarões , Anticorpos de Domínio Único/farmacologia , Fator A de Crescimento do Endotélio Vascular/antagonistas & inibidores , Administração Tópica , Animais , Produtos Biológicos/imunologia , Produtos Biológicos/isolamento & purificação , Produtos Biológicos/uso terapêutico , Células Cultivadas , Técnicas de Cocultura , Modelos Animais de Doenças , Olho/irrigação sanguínea , Olho/metabolismo , Fibroblastos , Células Endoteliais da Veia Umbilical Humana , Humanos , Masculino , Camundongos , Camundongos Endogâmicos C57BL , Soluções Oftálmicas/farmacocinética , Soluções Oftálmicas/uso terapêutico , Oxigênio/toxicidade , Coelhos , Proteínas Recombinantes/metabolismo , Doenças Retinianas/induzido quimicamente , Doenças Retinianas/patologia , Anticorpos de Domínio Único/imunologia , Anticorpos de Domínio Único/isolamento & purificação , Anticorpos de Domínio Único/uso terapêutico , Fator A de Crescimento do Endotélio Vascular/imunologia , Fator A de Crescimento do Endotélio Vascular/metabolismo
13.
Am J Trop Med Hyg ; 97(4): 1247-1256, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28722618

RESUMO

Mesoamerican nephropathy (MeN), an epidemic of unexplained kidney disease in Central America, affects mostly young, healthy individuals. Its etiology is a mystery that requires urgent investigation. Largely described as a chronic kidney disease (CKD), no acute clinical scenario has been characterized. An understanding of the early disease process could elucidate an etiology and guide treatment and prevention efforts. We sought to document the earliest clinical signs in patients with suspected MeN in a high-risk population in Nicaragua. Physicians at a local hospital identified suspect cases and documented clinical/laboratory data, demographics, and medical histories. Over a 1-year period, physicians identified 255 mostly young (median 29 years), male (89.5%) patients with elevated creatinine or reduced creatinine clearance. Mean serum creatinine (2.0 ± 0.6 mg/dL) revealed a 2-fold increase from baseline, and half had stage 2 or 3 acute kidney injury. Leukocyturia (98.4%), leukocytosis (81.4%), and neutrophilia (86.2%) predominated. Nausea (59.4%), back pain (57.9%), fever (54.6%), vomiting (50.4%), headache (47.3%), and muscle weakness (45.0%) were common. A typical case of acute MeN presented with elevated (or increased ≥ 0.3 mg/dL or ≥ 1.5-fold from baseline) creatinine, no hypertension or diabetes, leukocyturia, and at least two of fever, nausea or vomiting, back pain, muscle weakness, headache, or leukocytosis and/or neutrophilia. Rapid progression (median 90 days) to CKD was recorded in 8.5% of patients. This evidence can serve as the basis of a sensitive and urgently needed case definition for disease surveillance of early-stage, acute MeN.


Assuntos
Injúria Renal Aguda/epidemiologia , Injúria Renal Aguda/patologia , Adolescente , Adulto , Idoso , Feminino , Humanos , Inflamação/patologia , Masculino , Pessoa de Meia-Idade , Nicarágua/epidemiologia , População Rural , Adulto Jovem
14.
J Transcult Nurs ; 28(3): 278-285, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-26879319

RESUMO

PURPOSE: The authors designed a community-based participatory research study to develop and test a family-based behavioral intervention to improve cancer literacy and promote mammography among Navajo women. METHOD: Using data from focus groups and discussions with a community advisory committee, they adapted an existing questionnaire to assess cancer knowledge, barriers to mammography, and cancer beliefs for use among Navajo women. Questions measuring health literacy, numeracy, self-efficacy, cancer communication, and family support were also adapted. RESULTS: The resulting questionnaire was found to have good content validity, and to be culturally and linguistically appropriate for use among Navajo women. CONCLUSIONS: It is important to consider culture and not just language when adapting existing measures for use with AI/AN (American Indian/Alaskan Native) populations. English-language versions of existing literacy measures may not be culturally appropriate for AI/AN populations, which could lead to a lack of semantic, technical, idiomatic, and conceptual equivalence, resulting in misinterpretation of study outcomes.


Assuntos
Neoplasias da Mama/psicologia , Assistência à Saúde Culturalmente Competente/métodos , Letramento em Saúde/normas , Índios Norte-Americanos/psicologia , Mamografia/estatística & dados numéricos , Idoso , Neoplasias da Mama/mortalidade , Pesquisa Participativa Baseada na Comunidade , Assistência à Saúde Culturalmente Competente/normas , Detecção Precoce de Câncer/tendências , Feminino , Grupos Focais , Letramento em Saúde/tendências , Humanos , Índios Norte-Americanos/etnologia , Mamografia/psicologia , Pessoa de Meia-Idade , Inquéritos e Questionários , Estados Unidos/etnologia
15.
BMC Health Serv Res ; 16: 184, 2016 05 17.
Artigo em Inglês | MEDLINE | ID: mdl-27184962

RESUMO

BACKGROUND: Dementia is common, particularly among older adults, and is one of the major causes of dependency later in life. We sought to provide an overview and comparison of key services related to dementia care as the disease progresses in three large Canadian healthcare centres. METHODS: We identified family physicians, geriatric specialists, and dementia case managers from three major population centres in Canada with universal healthcare coverage. Using a standardized longitudinal dementia case vignette, participants were interviewed on services they would provide at each stage of the disease. We used principles of content analysis to generate codes and identify themes; appropriate time frames from the vignette fitting the necessary provision of services were derived from the Canadian consensus statement and determined in consultation with clinical experts. Proportions of participants that identified dementia-related care services were analyzed at each time point of the vignette using chi-square tests. RESULTS: Thirty-four healthcare providers from Calgary (Alberta), Edmonton (Alberta), and Ottawa (Ontario) participated. Review of our data identified seven overarching themes of dementia-related care services. Services provided in the community setting include future planning and related services, educational and social support services, and home care and respite services. Although all providers consistently identified educational and social support services (e.g. the Alzheimer Society) within the appropriate time frame, the provision of other services was variable. The proportion of providers reporting potential access of future planning services was significantly different across the three sites (Calgary, 91.7 %; Edmonton; 58.3 %; and Ottawa, 30.0 %), p = 0.012. Also, the proportion of providers that identified day program services were significantly different across the three sites (Calgary, 100.0 %; Edmonton, 91.7 %; and Ottawa, 60.0 %), p = 0.023 according to a chi-square test. CONCLUSIONS: We found important types of variability in service delivery among different regions in Canada for a typical patient with dementia and their family caregiver. Health systems can be calibrated by aligning services from different settings to appropriate time points in the vignette, which illustrates the dynamic course of service delivery and opportunities for improvement throughout the disease trajectory.


Assuntos
Atenção à Saúde/normas , Demência/terapia , Adulto , Alberta , Cuidadores , Hospital Dia/normas , Feminino , Educação em Saúde/normas , Pessoal de Saúde , Serviços de Assistência Domiciliar/normas , Humanos , Masculino , Ontário , Médicos de Família , Encaminhamento e Consulta , Cuidados Intermitentes/normas , Apoio Social , Serviço Social
16.
Psychol Aging ; 30(3): 712-26, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26052887

RESUMO

The current study examines the longitudinal relationship between dementia-related challenging behaviors (e.g., vocal disruption, physical aggression, repetitive behaviors, and restlessness) and cognitive functioning in the long-term care (LTC) context. A multivariate latent growth curve model within the structural equation modeling (SEM) framework was applied to data collected from 16,804 older adults upon admission to LTC and every 3 months for a period of 2.5 years. Increases in challenging behaviors were characterized by a significant positive linear and negative quadratic trend (i.e., a subtle leveling off at later assessment times), whereas increases in cognitive impairment were characterized by a positive linear trend. On average, individuals who were more cognitively impaired upon entry into LTC and who exhibited a steeper increase in cognitive impairment also exhibited more challenging behaviors at entry into LTC and a steeper increase in challenging behaviors, respectively. At the within-person level, individuals demonstrating an increase in cognitive impairment at a specific occasion were also more likely to demonstrate an increase in challenging behaviors at that same occasion; however, the magnitude of these effects was very small, suggesting limited practical implications. This study provides novel empirical evidence about the coevolution of cognitive impairment and challenging behaviors, going beyond prior research that has been either cross-sectional in nature, examined longitudinal change in only 1 variable, or simply looked at linear trends without attempting to explore the possibility of nonlinear change. Most importantly, this longitudinal examination of persons with dementia living in LTC has implications for how challenging behaviors can be better managed and for how new strategies can be implemented to prevent challenging behaviors.


Assuntos
Transtornos Cognitivos/psicologia , Cognição , Demência/psicologia , Assistência de Longa Duração , Comportamento Problema/psicologia , Idoso , Idoso de 80 Anos ou mais , Agressão , Transtornos Cognitivos/complicações , Estudos Transversais , Demência/complicações , Feminino , Humanos , Masculino
17.
Gerontologist ; 54(6): 964-75, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24142913

RESUMO

PURPOSE OF THE STUDY: As the prevalence of dementia increases, the pressure to make early diagnoses also increases. Although patients must be able to identify the symptoms to access appropriate services, they may not be equally accessible to all citizens in a multicultural society. Health care professionals and patients may lack a common "first language." This study explores the experience of francophone persons with dementia (PWD) and their caregivers during the peri-diagnostic period. DESIGN AND METHODS: Individual interviews were undertaken to elicit information regarding symptoms, the role of the family and friends, and the access to formal services. Seven PWD and their caregivers who spoke French as their primary language but who lived in a primarily English-speaking region completed the interviews. RESULTS AND IMPLICATIONS: No single symptom seemed sufficient to alert participants that dementia might be present. Participants communicated that there was a dire need to inform the public about the signs of dementia; they spoke of the role of the family physician and the importance of having a long-standing relationship with a health professional. For some, having similar personal characteristics, such as language and culture, might accentuate the strength of the relationship and facilitate the process of diagnosis.


Assuntos
Características Culturais , Demência/diagnóstico , Necessidades e Demandas de Serviços de Saúde , Idioma , Grupos Minoritários/psicologia , Idoso , Cuidadores , Comunicação , Demência/etnologia , Demência/psicologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Acesso aos Serviços de Saúde , Humanos , Entrevistas como Assunto , Masculino , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Pesquisa Qualitativa
18.
Dementia (London) ; 12(6): 769-89, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24337639

RESUMO

Urban centers are increasingly ethnically diverse. However, some visible minorities are less likely than their majority counterparts to seek and receive services and treatment for dementia. This study explored experiences of South Asian Canadians, Canada's largest visible minority group, prior to dementia diagnosis. Six persons with dementia and eight of their family carers described their early perceptions of dementia-related changes, actions taken, including help seeking and diagnosis, and affective responses. Early signs were attributed to aging or personality. Even after cognitive enhancers were prescribed, some respondents continued to believe that the dementia symptoms were 'normal'. Family carers' affective responses may be related to their attributions. Before seeking medical attention, family carers modified physical or social environments because of symptoms. Help seeking was delayed up to four years, even with significant dementia symptoms. Recognition of a health problem was influenced by safety concerns, emergence of new symptoms following trauma, and treatment for other health problems. For some, relatives living outside the home or outside Canada were instrumental in recognizing a problem and convincing family carers and persons with dementia to seek medical attention. The pathway to diagnosis might be easier with outreach to help South Asian immigrants differentiate between normal aging and dementia. Symptom recognition by physicians treating other acute conditions was a portal to dementia services for others. Screening and referral in acute care could result in earlier diagnosis and treatment.


Assuntos
Povo Asiático/psicologia , Cuidadores/psicologia , Demência , Família/psicologia , Serviços de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Afeto , Idoso , Idoso de 80 Anos ou mais , Ásia/etnologia , Atitude Frente a Saúde , Demência/diagnóstico , Demência/psicologia , Feminino , Humanos , Masculino , Ontário , Pesquisa Qualitativa , Estudos Retrospectivos
19.
Am J Alzheimers Dis Other Demen ; 28(8): 723-33, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24005852

RESUMO

With the aging of the population and the projected increase of dementia in the coming years, it is crucial that we understand the needs of people with dementia (PWD) in order to provide appropriate care. The aim of this study is to determine, using the best evidence possible, the care needs of PWD living in long-term care (LTC). A total of 68 studies, published between January 2000 and September 2010, were identified from six databases. From the selected studies, 19 needs of PWD were identified. The existing evidence suggests that psychosocial needs such as the need to engage in daily individualized activities and care must not be ignored in LTC. This review aims to provide a clearer picture of the needs of this growing patient population.


Assuntos
Demência/enfermagem , Necessidades e Demandas de Serviços de Saúde , Determinação de Necessidades de Cuidados de Saúde , Qualidade de Vida , Apoio Social , Doença de Alzheimer/enfermagem , Doença de Alzheimer/psicologia , Moradias Assistidas , Demência/psicologia , Humanos , Assistência de Longa Duração/psicologia , Assistência de Longa Duração/estatística & dados numéricos , Casas de Saúde
20.
Int Psychogeriatr ; 24(5): 753-65, 2012 May.
Artigo em Inglês | MEDLINE | ID: mdl-22265186

RESUMO

BACKGROUND: Disruptive behaviors are frequent and often the first predictor of institutionalization. The goal of this multi-center study was to explore the perceptions of family and staff members on the potential contribution of environmental factors that influence disruptive behaviors and quality of life of residents with dementia living in long-term care homes. METHODS: Data were collected using 15 nominal focus groups with 45 family and 59 staff members from eight care units. Groups discussed and created lists of factors that could either reduce disruptive behaviors and facilitate quality of life or encourage disruptive behaviors and impede the quality of life of residents. Then each participant individually selected the nine most important facilitators and obstacles. Themes were identified from the lists of data and operational categories and definitions were developed for independent coding by four researchers. RESULTS: Participants from both family and staff nominal focus groups highlighted facility, staffing, and resident factors to consider when creating optimal environments. Human environments were perceived to be more important than physical environments and flexibility was judged to be essential. Noise was identified as one of the most important factors influencing behavior and quality of life of residents. CONCLUSION: Specialized physical design features can be useful for maintaining quality of life and reducing disruptive behaviors, but they are not sufficient. Although they can ease some of the anxieties and set the stage for social interactions, individuals who make up the human environment are just as important in promoting well-being among residents.


Assuntos
Demência/psicologia , Família/psicologia , Casas de Saúde , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Demência/terapia , Meio Ambiente , Feminino , Grupos Focais , Pessoal de Saúde/psicologia , Humanos , Assistência de Longa Duração/organização & administração , Assistência de Longa Duração/normas , Masculino , Casas de Saúde/normas , Percepção , Qualidade de Vida , Meio Social , Recursos Humanos
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