Anthony L Teano, Ashley Scott, Cassandra Gipson, Marilyn Albert, Corinne Pettigrew
Background: Social media may be a useful method for research centers to deliver health messages, increase their visibility in the local community, and recruit study participants. Sharing examples of social media-based community outreach and educational programs, and evaluating their outcomes in this setting, is important for understanding whether these efforts have a measurable impact.
Objective: The aim of this study is to describe one center's social media activities for community education on topics related to aging, memory loss, and Alzheimer disease and related dementias, and provide metrics related to recruitment into clinical research studies.
Methods: Several social media platforms were used, including Facebook, X (formerly Twitter), and YouTube. Objective assessments quantified monthly, based on each platform's native dashboard, included the number of followers, number of posts, post reach and engagement, post impressions, and video views. The number of participants volunteering for research during this period was additionally tracked using a secure database. Educational material posted to social media most frequently included content developed by center staff, content from partner organizations, and news articles or resources featuring center researchers. Multiple educational programs were developed, including social media series, web-based talks, Twitter chats, and webinars. In more recent years, Facebook content was occasionally boosted to increase visibility in the local geographical region.
Results: Up to 4 years of page metrics demonstrated continuing growth in reaching social media audiences, as indicated by increases over time in the numbers of likes or followers on Facebook and X/Twitter and views of YouTube videos (growth trajectories). While Facebook reach and X/Twitter impression rates were reasonable, Facebook engagement rates were more modest. Months that included boosted Facebook posts resulted in a greater change in page followers and page likes, and higher reach and engagement rates (all P≤.002). Recruitment of participants into center-affiliated research studies increased during this time frame, particularly in response to boosted Facebook posts.
Conclusions: These data demonstrate that social media activities can provide meaningful community educational opportunities focused on Alzheimer disease and related dementias and have a measurable impact on the recruitment of participants into research studies. Additionally, this study highlights the importance of tracking outreach program outcomes for evaluating return on investment.
{"title":"Social Media Programs for Outreach and Recruitment Supporting Aging and Alzheimer Disease and Related Dementias Research: Longitudinal Descriptive Study.","authors":"Anthony L Teano, Ashley Scott, Cassandra Gipson, Marilyn Albert, Corinne Pettigrew","doi":"10.2196/51520","DOIUrl":"10.2196/51520","url":null,"abstract":"<p><strong>Background: </strong>Social media may be a useful method for research centers to deliver health messages, increase their visibility in the local community, and recruit study participants. Sharing examples of social media-based community outreach and educational programs, and evaluating their outcomes in this setting, is important for understanding whether these efforts have a measurable impact.</p><p><strong>Objective: </strong>The aim of this study is to describe one center's social media activities for community education on topics related to aging, memory loss, and Alzheimer disease and related dementias, and provide metrics related to recruitment into clinical research studies.</p><p><strong>Methods: </strong>Several social media platforms were used, including Facebook, X (formerly Twitter), and YouTube. Objective assessments quantified monthly, based on each platform's native dashboard, included the number of followers, number of posts, post reach and engagement, post impressions, and video views. The number of participants volunteering for research during this period was additionally tracked using a secure database. Educational material posted to social media most frequently included content developed by center staff, content from partner organizations, and news articles or resources featuring center researchers. Multiple educational programs were developed, including social media series, web-based talks, Twitter chats, and webinars. In more recent years, Facebook content was occasionally boosted to increase visibility in the local geographical region.</p><p><strong>Results: </strong>Up to 4 years of page metrics demonstrated continuing growth in reaching social media audiences, as indicated by increases over time in the numbers of likes or followers on Facebook and X/Twitter and views of YouTube videos (growth trajectories). While Facebook reach and X/Twitter impression rates were reasonable, Facebook engagement rates were more modest. Months that included boosted Facebook posts resulted in a greater change in page followers and page likes, and higher reach and engagement rates (all P≤.002). Recruitment of participants into center-affiliated research studies increased during this time frame, particularly in response to boosted Facebook posts.</p><p><strong>Conclusions: </strong>These data demonstrate that social media activities can provide meaningful community educational opportunities focused on Alzheimer disease and related dementias and have a measurable impact on the recruitment of participants into research studies. Additionally, this study highlights the importance of tracking outreach program outcomes for evaluating return on investment.</p>","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e51520"},"PeriodicalIF":5.0,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11267090/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141564716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Xinyue Hu, Zenan Sun, Yi Nian, Yichen Wang, Yifang Dang, Fang Li, Jingna Feng, Evan Yu, Cui Tao
Background: Alzheimer disease and related dementias (ADRD) rank as the sixth leading cause of death in the United States, underlining the importance of accurate ADRD risk prediction. While recent advancements in ADRD risk prediction have primarily relied on imaging analysis, not all patients undergo medical imaging before an ADRD diagnosis. Merging machine learning with claims data can reveal additional risk factors and uncover interconnections among diverse medical codes.
Objective: The study aims to use graph neural networks (GNNs) with claim data for ADRD risk prediction. Addressing the lack of human-interpretable reasons behind these predictions, we introduce an innovative, self-explainable method to evaluate relationship importance and its influence on ADRD risk prediction.
Methods: We used a variationally regularized encoder-decoder GNN (variational GNN [VGNN]) integrated with our proposed relation importance method for estimating ADRD likelihood. This self-explainable method can provide a feature-important explanation in the context of ADRD risk prediction, leveraging relational information within a graph. Three scenarios with 1-year, 2-year, and 3-year prediction windows were created to assess the model's efficiency, respectively. Random forest (RF) and light gradient boost machine (LGBM) were used as baselines. By using this method, we further clarify the key relationships for ADRD risk prediction.
Results: In scenario 1, the VGNN model showed area under the receiver operating characteristic (AUROC) scores of 0.7272 and 0.7480 for the small subset and the matched cohort data set. It outperforms RF and LGBM by 10.6% and 9.1%, respectively, on average. In scenario 2, it achieved AUROC scores of 0.7125 and 0.7281, surpassing the other models by 10.5% and 8.9%, respectively. Similarly, in scenario 3, AUROC scores of 0.7001 and 0.7187 were obtained, exceeding 10.1% and 8.5% than the baseline models, respectively. These results clearly demonstrate the significant superiority of the graph-based approach over the tree-based models (RF and LGBM) in predicting ADRD. Furthermore, the integration of the VGNN model and our relation importance interpretation could provide valuable insight into paired factors that may contribute to or delay ADRD progression.
Conclusions: Using our innovative self-explainable method with claims data enhances ADRD risk prediction and provides insights into the impact of interconnected medical code relationships. This methodology not only enables ADRD risk modeling but also shows potential for other image analysis predictions using claims data.
{"title":"Self-Explainable Graph Neural Network for Alzheimer Disease and Related Dementias Risk Prediction: Algorithm Development and Validation Study.","authors":"Xinyue Hu, Zenan Sun, Yi Nian, Yichen Wang, Yifang Dang, Fang Li, Jingna Feng, Evan Yu, Cui Tao","doi":"10.2196/54748","DOIUrl":"10.2196/54748","url":null,"abstract":"<p><strong>Background: </strong>Alzheimer disease and related dementias (ADRD) rank as the sixth leading cause of death in the United States, underlining the importance of accurate ADRD risk prediction. While recent advancements in ADRD risk prediction have primarily relied on imaging analysis, not all patients undergo medical imaging before an ADRD diagnosis. Merging machine learning with claims data can reveal additional risk factors and uncover interconnections among diverse medical codes.</p><p><strong>Objective: </strong>The study aims to use graph neural networks (GNNs) with claim data for ADRD risk prediction. Addressing the lack of human-interpretable reasons behind these predictions, we introduce an innovative, self-explainable method to evaluate relationship importance and its influence on ADRD risk prediction.</p><p><strong>Methods: </strong>We used a variationally regularized encoder-decoder GNN (variational GNN [VGNN]) integrated with our proposed relation importance method for estimating ADRD likelihood. This self-explainable method can provide a feature-important explanation in the context of ADRD risk prediction, leveraging relational information within a graph. Three scenarios with 1-year, 2-year, and 3-year prediction windows were created to assess the model's efficiency, respectively. Random forest (RF) and light gradient boost machine (LGBM) were used as baselines. By using this method, we further clarify the key relationships for ADRD risk prediction.</p><p><strong>Results: </strong>In scenario 1, the VGNN model showed area under the receiver operating characteristic (AUROC) scores of 0.7272 and 0.7480 for the small subset and the matched cohort data set. It outperforms RF and LGBM by 10.6% and 9.1%, respectively, on average. In scenario 2, it achieved AUROC scores of 0.7125 and 0.7281, surpassing the other models by 10.5% and 8.9%, respectively. Similarly, in scenario 3, AUROC scores of 0.7001 and 0.7187 were obtained, exceeding 10.1% and 8.5% than the baseline models, respectively. These results clearly demonstrate the significant superiority of the graph-based approach over the tree-based models (RF and LGBM) in predicting ADRD. Furthermore, the integration of the VGNN model and our relation importance interpretation could provide valuable insight into paired factors that may contribute to or delay ADRD progression.</p><p><strong>Conclusions: </strong>Using our innovative self-explainable method with claims data enhances ADRD risk prediction and provides insights into the impact of interconnected medical code relationships. This methodology not only enables ADRD risk modeling but also shows potential for other image analysis predictions using claims data.</p>","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e54748"},"PeriodicalIF":5.0,"publicationDate":"2024-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11263893/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141559973","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ana Inés Ansaldo, Michèle Masson-Trottier, Barbara Delacourt, Jade Dubuc, Catherine Dubé
Background: Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout.
Objective: This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden.
Methods: In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs.
Results: Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65%; t15=2.430; P=.03; d=0.61 [medium effect size]).
Conclusions: COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions.
{"title":"Efficacy of COMPAs, an App Designed to Support Communication Between Persons Living With Dementia in Long-Term Care Settings and Their Caregivers: Mixed Methods Implementation Study.","authors":"Ana Inés Ansaldo, Michèle Masson-Trottier, Barbara Delacourt, Jade Dubuc, Catherine Dubé","doi":"10.2196/47565","DOIUrl":"10.2196/47565","url":null,"abstract":"<p><strong>Background: </strong>Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout.</p><p><strong>Objective: </strong>This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden.</p><p><strong>Methods: </strong>In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs.</p><p><strong>Results: </strong>Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65%; t<sub>15</sub>=2.430; P=.03; d=0.61 [medium effect size]).</p><p><strong>Conclusions: </strong>COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions.</p>","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e47565"},"PeriodicalIF":5.0,"publicationDate":"2024-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11258517/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499177","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p><strong>Background: </strong>Usability is a key indicator of the quality of technology products. In tandem with technological advancements, potential use by individuals with dementia is increasing. However, defining the usability of technology for individuals with dementia remains an ongoing challenge. The diverse and progressive nature of dementia adds complexity to the creation of universal usability criteria, highlighting the need for focused deliberations. Technological interventions offer potential benefits for people living with dementia and caregivers. Amid COVID-19, technology's role in health care access is growing, especially among older adults. Enabling the diverse population of people living with dementia to enjoy the benefits of technologies requires particular attention to their needs, desires, capabilities, and vulnerabilities to potential harm from technologies. Successful technological interventions for dementia require meticulous consideration of technology usability.</p><p><strong>Objective: </strong>This concept analysis aims to examine the usability of technology in the context of individuals living with dementia to establish a clear definition for usability within this specific demographic.</p><p><strong>Methods: </strong>The framework by Walker and Avant was used to guide this concept analysis. We conducted a literature review spanning 1984 to 2024, exploring technology usability for people with dementia through the PubMed, Web of Science, and Google Scholar databases using the keywords "technology usability" and "dementia." We also incorporated clinical definitions and integrated interview data from 29 dyads comprising individuals with mild Alzheimer dementia and their respective care partners, resulting in a total of 58 older adults. This approach aimed to offer a more comprehensive portrayal of the usability needs of individuals living with dementia, emphasizing practical application.</p><p><strong>Results: </strong>The evidence from the literature review unveiled that usability encompasses attributes such as acceptable learnability, efficiency, and satisfaction. The clinical perspective on dementia stages, subtypes, and symptoms underscores the importance of tailored technology usability assessment. Feedback from 29 dyads also emphasized the value of simplicity, clear navigation, age-sensitive design, personalized features, and audio support. Thus, design should prioritize personalized assistance for individuals living with dementia, moving away from standardized technological approaches. Synthesized from various sources, the defined usability attributes for individuals living with dementia not only encompass the general usability properties of effectiveness, efficiency, and satisfaction but also include other key factors: adaptability, personalization, intuitiveness, and simplicity, to ensure that technology is supportive and yields tangible benefits for this demographic.</p><p><strong>Conclusions: </strong>Usabilit
{"title":"Technology Usability for People Living With Dementia: Concept Analysis.","authors":"Shao-Yun Chien, Oleg Zaslavsky, Clara Berridge","doi":"10.2196/51987","DOIUrl":"10.2196/51987","url":null,"abstract":"<p><strong>Background: </strong>Usability is a key indicator of the quality of technology products. In tandem with technological advancements, potential use by individuals with dementia is increasing. However, defining the usability of technology for individuals with dementia remains an ongoing challenge. The diverse and progressive nature of dementia adds complexity to the creation of universal usability criteria, highlighting the need for focused deliberations. Technological interventions offer potential benefits for people living with dementia and caregivers. Amid COVID-19, technology's role in health care access is growing, especially among older adults. Enabling the diverse population of people living with dementia to enjoy the benefits of technologies requires particular attention to their needs, desires, capabilities, and vulnerabilities to potential harm from technologies. Successful technological interventions for dementia require meticulous consideration of technology usability.</p><p><strong>Objective: </strong>This concept analysis aims to examine the usability of technology in the context of individuals living with dementia to establish a clear definition for usability within this specific demographic.</p><p><strong>Methods: </strong>The framework by Walker and Avant was used to guide this concept analysis. We conducted a literature review spanning 1984 to 2024, exploring technology usability for people with dementia through the PubMed, Web of Science, and Google Scholar databases using the keywords \"technology usability\" and \"dementia.\" We also incorporated clinical definitions and integrated interview data from 29 dyads comprising individuals with mild Alzheimer dementia and their respective care partners, resulting in a total of 58 older adults. This approach aimed to offer a more comprehensive portrayal of the usability needs of individuals living with dementia, emphasizing practical application.</p><p><strong>Results: </strong>The evidence from the literature review unveiled that usability encompasses attributes such as acceptable learnability, efficiency, and satisfaction. The clinical perspective on dementia stages, subtypes, and symptoms underscores the importance of tailored technology usability assessment. Feedback from 29 dyads also emphasized the value of simplicity, clear navigation, age-sensitive design, personalized features, and audio support. Thus, design should prioritize personalized assistance for individuals living with dementia, moving away from standardized technological approaches. Synthesized from various sources, the defined usability attributes for individuals living with dementia not only encompass the general usability properties of effectiveness, efficiency, and satisfaction but also include other key factors: adaptability, personalization, intuitiveness, and simplicity, to ensure that technology is supportive and yields tangible benefits for this demographic.</p><p><strong>Conclusions: </strong>Usabilit","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e51987"},"PeriodicalIF":5.0,"publicationDate":"2024-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11255540/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141493814","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Leanne Greene, Miia Rahja, Kate Laver, Vun Vun Wong, Chris Leung, Maria Crotty
<p><strong>Background: </strong>Over the past decade, the adoption of virtual wards has surged. Virtual wards aim to prevent unnecessary hospital admissions, expedite home discharge, and enhance patient satisfaction, which are particularly beneficial for the older adult population who faces risks associated with hospitalization. Consequently, substantial investments are being made in virtual rehabilitation wards (VRWs), despite evidence of varying levels of success in their implementation. However, the facilitators and barriers experienced by virtual ward staff for the rapid implementation of these innovative care models remain poorly understood.</p><p><strong>Objective: </strong>This paper presents insights from hospital staff working on an Australian VRW in response to the growing demand for programs aimed at preventing hospital admissions. We explore staff's perspectives on the facilitators and barriers of the VRW, shedding light on service setup and delivery.</p><p><strong>Methods: </strong>Qualitative interviews were conducted with 21 VRW staff using the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework. The analysis of data was performed using framework analysis and the 7 domains of the NASSS framework.</p><p><strong>Results: </strong>The results were mapped onto the 7 domains of the NASSS framework. (1) Condition: Managing certain conditions, especially those involving comorbidities and sociocultural factors, can be challenging. (2) Technology: The VRW demonstrated suitability for technologically engaged patients without cognitive impairment, offering advantages in clinical decision-making through remote monitoring and video calls. However, interoperability issues and equipment malfunctions caused staff frustration, highlighting the importance of promptly addressing technical challenges. (3) Value proposition: The VRW empowered patients to choose their care location, extending access to care for rural communities and enabling home-based treatment for older adults. (4) Adopters and (5) organizations: Despite these benefits, the cultural shift from in-person to remote treatment introduced uncertainties in workflows, professional responsibilities, resource allocation, and intake processes. (6) Wider system and (7) embedding: As the service continues to develop to address gaps in hospital capacity, it is imperative to prioritize ongoing adaptation. This includes refining the process of smoothly transferring patients back to the hospital, addressing technical aspects, ensuring seamless continuity of care, and thoughtfully considering how the burden of care may shift to patients and their families.</p><p><strong>Conclusions: </strong>In this qualitative study exploring health care staff's experience of an innovative VRW, we identified several drivers and challenges to implementation and acceptability. The findings have implications for future services considering implementing VRWs for older adults in terms of servi
{"title":"Hospital Staff Perspectives on the Drivers and Challenges in Implementing a Virtual Rehabilitation Ward: Qualitative Study.","authors":"Leanne Greene, Miia Rahja, Kate Laver, Vun Vun Wong, Chris Leung, Maria Crotty","doi":"10.2196/54774","DOIUrl":"10.2196/54774","url":null,"abstract":"<p><strong>Background: </strong>Over the past decade, the adoption of virtual wards has surged. Virtual wards aim to prevent unnecessary hospital admissions, expedite home discharge, and enhance patient satisfaction, which are particularly beneficial for the older adult population who faces risks associated with hospitalization. Consequently, substantial investments are being made in virtual rehabilitation wards (VRWs), despite evidence of varying levels of success in their implementation. However, the facilitators and barriers experienced by virtual ward staff for the rapid implementation of these innovative care models remain poorly understood.</p><p><strong>Objective: </strong>This paper presents insights from hospital staff working on an Australian VRW in response to the growing demand for programs aimed at preventing hospital admissions. We explore staff's perspectives on the facilitators and barriers of the VRW, shedding light on service setup and delivery.</p><p><strong>Methods: </strong>Qualitative interviews were conducted with 21 VRW staff using the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework. The analysis of data was performed using framework analysis and the 7 domains of the NASSS framework.</p><p><strong>Results: </strong>The results were mapped onto the 7 domains of the NASSS framework. (1) Condition: Managing certain conditions, especially those involving comorbidities and sociocultural factors, can be challenging. (2) Technology: The VRW demonstrated suitability for technologically engaged patients without cognitive impairment, offering advantages in clinical decision-making through remote monitoring and video calls. However, interoperability issues and equipment malfunctions caused staff frustration, highlighting the importance of promptly addressing technical challenges. (3) Value proposition: The VRW empowered patients to choose their care location, extending access to care for rural communities and enabling home-based treatment for older adults. (4) Adopters and (5) organizations: Despite these benefits, the cultural shift from in-person to remote treatment introduced uncertainties in workflows, professional responsibilities, resource allocation, and intake processes. (6) Wider system and (7) embedding: As the service continues to develop to address gaps in hospital capacity, it is imperative to prioritize ongoing adaptation. This includes refining the process of smoothly transferring patients back to the hospital, addressing technical aspects, ensuring seamless continuity of care, and thoughtfully considering how the burden of care may shift to patients and their families.</p><p><strong>Conclusions: </strong>In this qualitative study exploring health care staff's experience of an innovative VRW, we identified several drivers and challenges to implementation and acceptability. The findings have implications for future services considering implementing VRWs for older adults in terms of servi","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e54774"},"PeriodicalIF":5.0,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11220728/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141477567","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Javad Razjouyan, Ariela R Orkaby, Molly J Horstman, Parag Goyal, Orna Intrator, Aanand D Naik
{"title":"The Frailty Trajectory's Additional Edge Over the Frailty Index: Retrospective Cohort Study of Veterans With Heart Failure.","authors":"Javad Razjouyan, Ariela R Orkaby, Molly J Horstman, Parag Goyal, Orna Intrator, Aanand D Naik","doi":"10.2196/56345","DOIUrl":"10.2196/56345","url":null,"abstract":"","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e56345"},"PeriodicalIF":5.0,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11220725/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141477568","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Emily W Paolillo, Kaitlin B Casaletto, Annie L Clark, Jack C Taylor, Hilary W Heuer, Amy B Wise, Sreya Dhanam, Mark Sanderson-Cimino, Rowan Saloner, Joel H Kramer, John Kornak, Walter Kremers, Leah Forsberg, Brian Appleby, Ece Bayram, Andrea Bozoki, Danielle Brushaber, R Ryan Darby, Gregory S Day, Bradford C Dickerson, Kimiko Domoto-Reilly, Fanny Elahi, Julie A Fields, Nupur Ghoshal, Neill Graff-Radford, Matthew G H Hall, Lawrence S Honig, Edward D Huey, Maria I Lapid, Irene Litvan, Ian R Mackenzie, Joseph C Masdeu, Mario F Mendez, Carly Mester, Toji Miyagawa, Georges Naasan, Belen Pascual, Peter Pressman, Eliana Marisa Ramos, Katherine P Rankin, Jessica Rexach, Julio C Rojas, Lawren VandeVrede, Bonnie Wong, Zbigniew K Wszolek, Bradley F Boeve, Howard J Rosen, Adam L Boxer, Adam M Staffaroni
<p><strong>Background: </strong>Frontotemporal lobar degeneration (FTLD) is a leading cause of dementia in individuals aged <65 years. Several challenges to conducting in-person evaluations in FTLD illustrate an urgent need to develop remote, accessible, and low-burden assessment techniques. Studies of unobtrusive monitoring of at-home computer use in older adults with mild cognitive impairment show that declining function is reflected in reduced computer use; however, associations with smartphone use are unknown.</p><p><strong>Objective: </strong>This study aims to characterize daily trajectories in smartphone battery use, a proxy for smartphone use, and examine relationships with clinical indicators of severity in FTLD.</p><p><strong>Methods: </strong>Participants were 231 adults (mean age 52.5, SD 14.9 years; n=94, 40.7% men; n=223, 96.5% non-Hispanic White) enrolled in the Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL study) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS study) Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Mobile App study, including 49 (21.2%) with mild neurobehavioral changes and no functional impairment (ie, prodromal FTLD), 43 (18.6%) with neurobehavioral changes and functional impairment (ie, symptomatic FTLD), and 139 (60.2%) clinically normal adults, of whom 55 (39.6%) harbored heterozygous pathogenic or likely pathogenic variants in an autosomal dominant FTLD gene. Participants completed the Clinical Dementia Rating plus National Alzheimer's Coordinating Center Frontotemporal Lobar Degeneration Behavior and Language Domains (CDR+NACC FTLD) scale, a neuropsychological battery; the Neuropsychiatric Inventory; and brain magnetic resonance imaging. The ALLFTD Mobile App was installed on participants' smartphones for remote, passive, and continuous monitoring of smartphone use. Battery percentage was collected every 15 minutes over an average of 28 (SD 4.2; range 14-30) days. To determine whether temporal patterns of battery percentage varied as a function of disease severity, linear mixed effects models examined linear, quadratic, and cubic effects of the time of day and their interactions with each measure of disease severity on battery percentage. Models covaried for age, sex, smartphone type, and estimated smartphone age.</p><p><strong>Results: </strong>The CDR+NACC FTLD global score interacted with time on battery percentage such that participants with prodromal or symptomatic FTLD demonstrated less change in battery percentage throughout the day (a proxy for less smartphone use) than clinically normal participants (P<.001 in both cases). Additional models showed that worse performance in all cognitive domains assessed (ie, executive functioning, memory, language, and visuospatial skills), more neuropsychiatric symptoms, and smaller brain volumes also associated with less battery use throughout the day (P<.001 in all cases).</p><p><strong>Conc
{"title":"Examining Associations Between Smartphone Use and Clinical Severity in Frontotemporal Dementia: Proof-of-Concept Study.","authors":"Emily W Paolillo, Kaitlin B Casaletto, Annie L Clark, Jack C Taylor, Hilary W Heuer, Amy B Wise, Sreya Dhanam, Mark Sanderson-Cimino, Rowan Saloner, Joel H Kramer, John Kornak, Walter Kremers, Leah Forsberg, Brian Appleby, Ece Bayram, Andrea Bozoki, Danielle Brushaber, R Ryan Darby, Gregory S Day, Bradford C Dickerson, Kimiko Domoto-Reilly, Fanny Elahi, Julie A Fields, Nupur Ghoshal, Neill Graff-Radford, Matthew G H Hall, Lawrence S Honig, Edward D Huey, Maria I Lapid, Irene Litvan, Ian R Mackenzie, Joseph C Masdeu, Mario F Mendez, Carly Mester, Toji Miyagawa, Georges Naasan, Belen Pascual, Peter Pressman, Eliana Marisa Ramos, Katherine P Rankin, Jessica Rexach, Julio C Rojas, Lawren VandeVrede, Bonnie Wong, Zbigniew K Wszolek, Bradley F Boeve, Howard J Rosen, Adam L Boxer, Adam M Staffaroni","doi":"10.2196/52831","DOIUrl":"10.2196/52831","url":null,"abstract":"<p><strong>Background: </strong>Frontotemporal lobar degeneration (FTLD) is a leading cause of dementia in individuals aged <65 years. Several challenges to conducting in-person evaluations in FTLD illustrate an urgent need to develop remote, accessible, and low-burden assessment techniques. Studies of unobtrusive monitoring of at-home computer use in older adults with mild cognitive impairment show that declining function is reflected in reduced computer use; however, associations with smartphone use are unknown.</p><p><strong>Objective: </strong>This study aims to characterize daily trajectories in smartphone battery use, a proxy for smartphone use, and examine relationships with clinical indicators of severity in FTLD.</p><p><strong>Methods: </strong>Participants were 231 adults (mean age 52.5, SD 14.9 years; n=94, 40.7% men; n=223, 96.5% non-Hispanic White) enrolled in the Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL study) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS study) Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Mobile App study, including 49 (21.2%) with mild neurobehavioral changes and no functional impairment (ie, prodromal FTLD), 43 (18.6%) with neurobehavioral changes and functional impairment (ie, symptomatic FTLD), and 139 (60.2%) clinically normal adults, of whom 55 (39.6%) harbored heterozygous pathogenic or likely pathogenic variants in an autosomal dominant FTLD gene. Participants completed the Clinical Dementia Rating plus National Alzheimer's Coordinating Center Frontotemporal Lobar Degeneration Behavior and Language Domains (CDR+NACC FTLD) scale, a neuropsychological battery; the Neuropsychiatric Inventory; and brain magnetic resonance imaging. The ALLFTD Mobile App was installed on participants' smartphones for remote, passive, and continuous monitoring of smartphone use. Battery percentage was collected every 15 minutes over an average of 28 (SD 4.2; range 14-30) days. To determine whether temporal patterns of battery percentage varied as a function of disease severity, linear mixed effects models examined linear, quadratic, and cubic effects of the time of day and their interactions with each measure of disease severity on battery percentage. Models covaried for age, sex, smartphone type, and estimated smartphone age.</p><p><strong>Results: </strong>The CDR+NACC FTLD global score interacted with time on battery percentage such that participants with prodromal or symptomatic FTLD demonstrated less change in battery percentage throughout the day (a proxy for less smartphone use) than clinically normal participants (P<.001 in both cases). Additional models showed that worse performance in all cognitive domains assessed (ie, executive functioning, memory, language, and visuospatial skills), more neuropsychiatric symptoms, and smaller brain volumes also associated with less battery use throughout the day (P<.001 in all cases).</p><p><strong>Conc","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e52831"},"PeriodicalIF":5.0,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11237775/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141451762","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Andrew C Pickett, Danny Valdez, Kelsey L Sinclair, Wesley J Kochell, Boone Fowler, Nicole E Werner
Background: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease-related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support.
Objective: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users.
Methods: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus.
Results: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person.
Conclusions: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.
{"title":"Social Media Discourse Related to Caregiving for Older Adults Living With Alzheimer Disease and Related Dementias: Computational and Qualitative Study.","authors":"Andrew C Pickett, Danny Valdez, Kelsey L Sinclair, Wesley J Kochell, Boone Fowler, Nicole E Werner","doi":"10.2196/59294","DOIUrl":"10.2196/59294","url":null,"abstract":"<p><strong>Background: </strong>In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease-related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support.</p><p><strong>Objective: </strong>We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users.</p><p><strong>Methods: </strong>We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus.</p><p><strong>Results: </strong>The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person.</p><p><strong>Conclusions: </strong>Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.</p>","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e59294"},"PeriodicalIF":5.0,"publicationDate":"2024-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11222768/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141421270","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lesley Steinman, Kelly Chadwick, Erica Chavez Santos, Sruthi Sravanam, Selisha Snowy Johnson, Elspeth Rensema, Caitlin Mayotte, Paige Denison, Kate Lorig
<p><strong>Background: </strong>Evidence-based programs (EBPs) for health promotion were developed to reach older adults where they live, work, pray, and play. When the COVID-19 pandemic placed a disproportionate burden on older adults living with chronic conditions and the community-based organizations that support them, these in-person programs shifted to remote delivery. While EBPs have demonstrated effectiveness when delivered in person, less is known about outcomes when delivered remotely.</p><p><strong>Objective: </strong>This study evaluated changes in remote EBP participants' health and well-being in a national mixed methods outcome evaluation in January 1, 2021, to March 31, 2022.</p><p><strong>Methods: </strong>We used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) for equity framework to guide the evaluation. We purposively sampled for diverse remote EBP delivery modes and delivery organizations, staff, and traditionally underserved older adults, including people of color and rural dwellers. We included 5 EBPs for self-management, falls prevention, and physical activity: videoconferencing (Chronic Disease Self-Management Program, Diabetes Self-Management Program, and EnhanceFitness), telephone plus mailed materials (Chronic Pain Self-Management Program), and enhanced self-directed mailed materials (Walk With Ease). Participant and provider data included validated surveys, in-depth interviews, and open-ended survey questions. We used descriptive statistics to characterize the sample and the magnitude of change and paired t tests (2-tailed) and the Fisher exact test to test for change in outcomes between enrollment and 6-month follow-up. Thematic analysis was used to identify similarities and differences in outcomes within and across programs. Joint display tables facilitated the integration of quantitative and qualitative findings.</p><p><strong>Results: </strong>A total of 586 older adults, 198 providers, and 37 organizations providing EBPs participated in the evaluation. Of the 586 older adults, 289 (49.3%) provided follow-up outcome data. The mean age of the EBP participants was 65.4 (SD 12.0) years. Of the 289 EBP participants, 241 (83.4%) were female, 108 (37.3%) were people of color, 113 (39.1%) lived alone, and 99 (34.3%) were experiencing financial hardship. In addition, the participants reported a mean of 2.5 (SD 1.7) chronic conditions. Overall, the remote EBP participants showed statistically significant improvements in health, energy, sleep quality, loneliness, depressive symptoms, and technology anxiety. Qualitatively, participants shared improvements in knowledge, attitudes, and skills for healthier living; reduced their social isolation and loneliness; and gained better access to programs. Three-fourths of the providers (149/198, 75.2%) felt that effectiveness was maintained when switching from in-person to remote delivery.</p><p><strong>Conclusions: </strong>The findings suggest that partici
{"title":"Remote Evidence-Based Programs for Health Promotion to Support Older Adults During the COVID-19 Pandemic and Beyond: Mixed Methods Outcome Evaluation.","authors":"Lesley Steinman, Kelly Chadwick, Erica Chavez Santos, Sruthi Sravanam, Selisha Snowy Johnson, Elspeth Rensema, Caitlin Mayotte, Paige Denison, Kate Lorig","doi":"10.2196/52069","DOIUrl":"10.2196/52069","url":null,"abstract":"<p><strong>Background: </strong>Evidence-based programs (EBPs) for health promotion were developed to reach older adults where they live, work, pray, and play. When the COVID-19 pandemic placed a disproportionate burden on older adults living with chronic conditions and the community-based organizations that support them, these in-person programs shifted to remote delivery. While EBPs have demonstrated effectiveness when delivered in person, less is known about outcomes when delivered remotely.</p><p><strong>Objective: </strong>This study evaluated changes in remote EBP participants' health and well-being in a national mixed methods outcome evaluation in January 1, 2021, to March 31, 2022.</p><p><strong>Methods: </strong>We used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) for equity framework to guide the evaluation. We purposively sampled for diverse remote EBP delivery modes and delivery organizations, staff, and traditionally underserved older adults, including people of color and rural dwellers. We included 5 EBPs for self-management, falls prevention, and physical activity: videoconferencing (Chronic Disease Self-Management Program, Diabetes Self-Management Program, and EnhanceFitness), telephone plus mailed materials (Chronic Pain Self-Management Program), and enhanced self-directed mailed materials (Walk With Ease). Participant and provider data included validated surveys, in-depth interviews, and open-ended survey questions. We used descriptive statistics to characterize the sample and the magnitude of change and paired t tests (2-tailed) and the Fisher exact test to test for change in outcomes between enrollment and 6-month follow-up. Thematic analysis was used to identify similarities and differences in outcomes within and across programs. Joint display tables facilitated the integration of quantitative and qualitative findings.</p><p><strong>Results: </strong>A total of 586 older adults, 198 providers, and 37 organizations providing EBPs participated in the evaluation. Of the 586 older adults, 289 (49.3%) provided follow-up outcome data. The mean age of the EBP participants was 65.4 (SD 12.0) years. Of the 289 EBP participants, 241 (83.4%) were female, 108 (37.3%) were people of color, 113 (39.1%) lived alone, and 99 (34.3%) were experiencing financial hardship. In addition, the participants reported a mean of 2.5 (SD 1.7) chronic conditions. Overall, the remote EBP participants showed statistically significant improvements in health, energy, sleep quality, loneliness, depressive symptoms, and technology anxiety. Qualitatively, participants shared improvements in knowledge, attitudes, and skills for healthier living; reduced their social isolation and loneliness; and gained better access to programs. Three-fourths of the providers (149/198, 75.2%) felt that effectiveness was maintained when switching from in-person to remote delivery.</p><p><strong>Conclusions: </strong>The findings suggest that partici","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e52069"},"PeriodicalIF":5.0,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11211707/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141311923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Emily Fisher, Shreenila Venkatesan, Pedro Benevides, Elodie Bertrand, Paula Schimidt Brum, Céline El Baou, Cleusa P Ferri, Jane Fossey, Maria Jelen, Jerson Laks, Lisa Liu, Daniel C Mograbi, Nirupama Natarajan, Renata Naylor, Despina Pantouli, Vaishnavi Ramanujam, Thara Rangaswamy, Raquel L Santos de Carvalho, Charlotte Stoner, Sridhar Vaitheswaran, Aimee Spector
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.
{"title":"Online Cognitive Stimulation Therapy for Dementia in Brazil and India: Acceptability, Feasibility, and Lessons for Implementation.","authors":"Emily Fisher, Shreenila Venkatesan, Pedro Benevides, Elodie Bertrand, Paula Schimidt Brum, Céline El Baou, Cleusa P Ferri, Jane Fossey, Maria Jelen, Jerson Laks, Lisa Liu, Daniel C Mograbi, Nirupama Natarajan, Renata Naylor, Despina Pantouli, Vaishnavi Ramanujam, Thara Rangaswamy, Raquel L Santos de Carvalho, Charlotte Stoner, Sridhar Vaitheswaran, Aimee Spector","doi":"10.2196/55557","DOIUrl":"10.2196/55557","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36245,"journal":{"name":"JMIR Aging","volume":"7 ","pages":"e55557"},"PeriodicalIF":5.0,"publicationDate":"2024-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11200045/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141307019","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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