Pub Date : 2024-04-01Epub Date: 2023-06-05DOI: 10.1177/14713012231181627
Nicolas Farina, Jayeeta Rajagopalan, Suvarna Alladi, Aliaa Ibnidris, Cleusa P Ferri, Martin Knapp, Adelina Comas-Herrera
Introduction: Numerous studies have previously estimated the dementia prevalence in India. However, as these estimates use different methodologies and sampling strategies, generating definitive prevalence estimates can be difficult.
Methods: A Delphi process involving eight clinical and academic experts provided prevalence estimates of dementia within India, split by sex and age. The experts were also asked to estimate the number of people potentially living at different stages of the condition. A priori criteria were used to ascertain the point in which consensus was achieved.
Results: Our consensus estimates generated a dementia prevalence of 2.8% (95% CI = 1.9 to 3.6) for those aged 60 years and above in India. Consensus was achieved across age and sex prevalence estimates, with the exception of one (females aged 60-64). Our experts estimated that 42.9% of people living with dementia in India had a mild severity.
Conclusions: The findings indicate that there could be approximately 3.9 million people living with dementia in India, of which 1.7 million could be living with dementia of mild severity. Such estimates can better help researchers and policy makers to estimate the true cost and impact of dementia in India and can inform resource allocation decisions.
{"title":"Estimating the number of people living with dementia at different stages of the condition in India: A Delphi process.","authors":"Nicolas Farina, Jayeeta Rajagopalan, Suvarna Alladi, Aliaa Ibnidris, Cleusa P Ferri, Martin Knapp, Adelina Comas-Herrera","doi":"10.1177/14713012231181627","DOIUrl":"10.1177/14713012231181627","url":null,"abstract":"<p><strong>Introduction: </strong>Numerous studies have previously estimated the dementia prevalence in India. However, as these estimates use different methodologies and sampling strategies, generating definitive prevalence estimates can be difficult.</p><p><strong>Methods: </strong>A Delphi process involving eight clinical and academic experts provided prevalence estimates of dementia within India, split by sex and age. The experts were also asked to estimate the number of people potentially living at different stages of the condition. A priori criteria were used to ascertain the point in which consensus was achieved.</p><p><strong>Results: </strong>Our consensus estimates generated a dementia prevalence of 2.8% (95% CI = 1.9 to 3.6) for those aged 60 years and above in India. Consensus was achieved across age and sex prevalence estimates, with the exception of one (females aged 60-64). Our experts estimated that 42.9% of people living with dementia in India had a mild severity.</p><p><strong>Conclusions: </strong>The findings indicate that there could be approximately 3.9 million people living with dementia in India, of which 1.7 million could be living with dementia of mild severity. Such estimates can better help researchers and policy makers to estimate the true cost and impact of dementia in India and can inform resource allocation decisions.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"438-451"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11041066/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9627443","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}
Background: The Dementia Severity Rating Scale (DSRS) is an informant report, dementia staging tool that is quick to administer and has previous been shown to differentiate between people with dementia and healthy controls. However, it is not clear how accurate the tool is screening against diagnostic criteria in middle-income settings.
Methods: Embedded within the STRiDE programme, older adults (aged ≥65 years) and their informants were randomly recruited from four sites across Indonesia and South Africa. All informants were asked to complete DSRS. We report the tool's psychometric properties and accuracy against the 10/66 short diagnostic algorithm.
Results: Between September and December 2021, data was collected from 2110 older adults in Indonesia and 408 in South Africa. Overall, the DSRS scores significantly differed between those with and without dementia, as identified on the 10/66 short algorithm (p < .05). The difference between groups remained significant after controlling for key factors related to older adult and informant demographics. A score >2 on the DSRS had the greatest agreement with the 10/66 short algorithm and had excellent discriminative properties in both Indonesia (Area Under Curve (AUC) = .75, 95% CIs = .72-.77) and South Africa (AUC = .82, 95% CIs = .76-.88).
Conclusions: The DSRS has potential as a screening tool for dementia in middle-income countries, with high sensitivity and specificity against a standardized diagnostic algorithm.
{"title":"The dementia severity rating scale: A potential community screening tool for dementia in low- and middle-income countries.","authors":"Yuda Turana, Nicolas Farina, Imelda Theresia, Fasihah Irfani Fitri, Ika Suswanti, Roxanne Jacobs, Marguerite Schneider, Tara Puspitarini Sani, Adelina Comas-Herrera, Emiliano Albanese, Ishtar Govia, Cleusa P Ferri, Martin Knapp, Sube Banerjee","doi":"10.1177/14713012231186837","DOIUrl":"10.1177/14713012231186837","url":null,"abstract":"<p><strong>Background: </strong>The Dementia Severity Rating Scale (DSRS) is an informant report, dementia staging tool that is quick to administer and has previous been shown to differentiate between people with dementia and healthy controls. However, it is not clear how accurate the tool is screening against diagnostic criteria in middle-income settings.</p><p><strong>Methods: </strong>Embedded within the STRiDE programme, older adults (aged ≥65 years) and their informants were randomly recruited from four sites across Indonesia and South Africa. All informants were asked to complete DSRS. We report the tool's psychometric properties and accuracy against the 10/66 short diagnostic algorithm.</p><p><strong>Results: </strong>Between September and December 2021, data was collected from 2110 older adults in Indonesia and 408 in South Africa. Overall, the DSRS scores significantly differed between those with and without dementia, as identified on the 10/66 short algorithm (<i>p</i> < .05). The difference between groups remained significant after controlling for key factors related to older adult and informant demographics. A score >2 on the DSRS had the greatest agreement with the 10/66 short algorithm and had excellent discriminative properties in both Indonesia (Area Under Curve (AUC) = .75, 95% CIs = .72-.77) and South Africa (AUC = .82, 95% CIs = .76-.88).</p><p><strong>Conclusions: </strong>The DSRS has potential as a screening tool for dementia in middle-income countries, with high sensitivity and specificity against a standardized diagnostic algorithm.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"476-492"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11041075/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813587","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}
Pub Date : 2024-04-01Epub Date: 2023-05-16DOI: 10.1177/14713012231176305
Fabiana Araújo Figueiredo Da Mata, Déborah Oliveira, Elaine Mateus, Ana Carolina Arruda Franzon, Carolina Godoy, Maximilian Salcher-Konrad, Chiara De-Poli, Adelina Comas-Herrera, Cleusa P Ferri, Klara Lorenz-Dant
Background and objectives: Despite the rapid increase in the number of people living with dementia in Brazil, dementia care is limited. This study describes how people living with dementia and their carers access care, treatment, and support, and identifies what characteristics are likely to enable or prevent access.
Research design and methods: We created 10 vignettes to illustrate fictitious but realistic scenarios involving people living with dementia in Brazil. The vignettes explore a combination of socioeconomic and demographic variables. They were completed using an in-depth desk review of the dementia care landscape in Brazil; a Strengths, Opportunities, Weaknesses, and Threats (SWOT) analysis of the desk review; and expert knowledge. The analysis focused on identifying common sources of service provision, barriers of access to care and support, and specific issues experienced by some population groups.
Findings: Access to a dementia diagnosis, care, and support for people living with dementia in Brazil is limited. Demographic and socio-economic circumstances play a role in determining the type of services to which a person might have access. Poor knowledge about dementia, lack of capacity in the health system, and lack of formal long-term care support are among the identified barriers to accessing timely diagnosis, care, and support in the country.
Discussion and implications: Understanding the barriers and facilitators of access to diagnosis, treatment, and support for people with dementia and families with different demographic and socioeconomic characteristics is crucial for designing dementia policies that are context-specific and responsive to the care needs of different socioeconomic groups in Brazil.
{"title":"Accessing Dementia Care in Brazil: An Analysis of Case Vignettes.","authors":"Fabiana Araújo Figueiredo Da Mata, Déborah Oliveira, Elaine Mateus, Ana Carolina Arruda Franzon, Carolina Godoy, Maximilian Salcher-Konrad, Chiara De-Poli, Adelina Comas-Herrera, Cleusa P Ferri, Klara Lorenz-Dant","doi":"10.1177/14713012231176305","DOIUrl":"10.1177/14713012231176305","url":null,"abstract":"<p><strong>Background and objectives: </strong>Despite the rapid increase in the number of people living with dementia in Brazil, dementia care is limited. This study describes how people living with dementia and their carers access care, treatment, and support, and identifies what characteristics are likely to enable or prevent access.</p><p><strong>Research design and methods: </strong>We created 10 vignettes to illustrate fictitious but realistic scenarios involving people living with dementia in Brazil. The vignettes explore a combination of socioeconomic and demographic variables. They were completed using an in-depth desk review of the dementia care landscape in Brazil; a Strengths, Opportunities, Weaknesses, and Threats (SWOT) analysis of the desk review; and expert knowledge. The analysis focused on identifying common sources of service provision, barriers of access to care and support, and specific issues experienced by some population groups.</p><p><strong>Findings: </strong>Access to a dementia diagnosis, care, and support for people living with dementia in Brazil is limited. Demographic and socio-economic circumstances play a role in determining the type of services to which a person might have access. Poor knowledge about dementia, lack of capacity in the health system, and lack of formal long-term care support are among the identified barriers to accessing timely diagnosis, care, and support in the country.</p><p><strong>Discussion and implications: </strong>Understanding the barriers and facilitators of access to diagnosis, treatment, and support for people with dementia and families with different demographic and socioeconomic characteristics is crucial for designing dementia policies that are context-specific and responsive to the care needs of different socioeconomic groups in Brazil.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"378-397"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9823923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-01Epub Date: 2023-07-28DOI: 10.1177/14713012231193141
Martin Knapp, Gloria Wong
Economics and dementia are interconnected in many ways. There is, for example, accumulating evidence of the ways in which dementia impacts on the economic status of individuals and families, on health and social care system budgets, and on national economies. An individual's economic status can affect their risk of dementia and their ability to respond to it. Governments and other strategic decision-makers are aware of the (growing, indeed urgent) need to take action - whether that is prevention, treatment or care - but also very aware of the limited resources available to them and to the general population. Research evidence can potentially inform the difficult decisions that government and others need to take. We briefly summarise some economic evaluation studies in the dementia area as a basis for identifying the main challenges of moving from evidence to better policy and practice. We then discuss some possible responses (from a range of stakeholders) to these challenges, and how the STRiDE study has sought to contribute to this fast-moving field.
{"title":"Economics and dementia: Challenges and responses.","authors":"Martin Knapp, Gloria Wong","doi":"10.1177/14713012231193141","DOIUrl":"10.1177/14713012231193141","url":null,"abstract":"<p><p>Economics and dementia are interconnected in many ways. There is, for example, accumulating evidence of the ways in which dementia impacts on the economic status of individuals and families, on health and social care system budgets, and on national economies. An individual's economic status can affect their risk of dementia and their ability to respond to it. Governments and other strategic decision-makers are aware of the (growing, indeed urgent) need to take action - whether that is prevention, treatment or care - but also very aware of the limited resources available to them and to the general population. Research evidence can potentially inform the difficult decisions that government and others need to take. We briefly summarise some economic evaluation studies in the dementia area as a basis for identifying the main challenges of moving from evidence to better policy and practice. We then discuss some possible responses (from a range of stakeholders) to these challenges, and how the STRiDE study has sought to contribute to this fast-moving field.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"512-522"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10264308","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-01Epub Date: 2023-06-19DOI: 10.1177/14713012231183358
Roxanne Jacobs, Marguerite Schneider, Nicolas Farina, Petra du Toit, Sumaiyah Docrat, Adelina Comas-Herrera, Martin Knapp
There is a need in South Africa to understand the status of available care and support to strengthen responses to dementia. This study provides a situational analysis of the current provisions of health, care and support for older persons, people living with dementia and their families in South Africa. It is a first step towards describing the landscape of needs and services available, and provides an evidence base to inform priority-setting for strengthening responses to dementia in South Africa. This situational analysis was conducted in three phases: (1) a desk review guided by a comprehensive topic guide which includes the WHO's Global Dementia Observatory indicators; (2) multi-sectoral stakeholder interviews to verify the secondary sources used in the desk review, and to identify gaps and opportunities in policy and service provisions; and (3) a SWOT-analysis examining the strengths, weaknesses, opportunities and threats in current care and support provisions in South Africa. Our findings highlight the gaps and opportunities with current service provision and show how structural factors create barriers to diagnosis, support, and care. There is an urgent need for intersectoral policy responses to support and strengthen current health, social care, and long-term support systems so that people living with dementia and their families can live and age well. This paper forms part of a larger study on strengthening responses to dementia (The STRIDE project).
{"title":"Dementia in South Africa: A Situational Analysis.","authors":"Roxanne Jacobs, Marguerite Schneider, Nicolas Farina, Petra du Toit, Sumaiyah Docrat, Adelina Comas-Herrera, Martin Knapp","doi":"10.1177/14713012231183358","DOIUrl":"10.1177/14713012231183358","url":null,"abstract":"<p><p>There is a need in South Africa to understand the status of available care and support to strengthen responses to dementia. This study provides a situational analysis of the current provisions of health, care and support for older persons, people living with dementia and their families in South Africa. It is a first step towards describing the landscape of needs and services available, and provides an evidence base to inform priority-setting for strengthening responses to dementia in South Africa. This situational analysis was conducted in three phases: (1) a desk review guided by a comprehensive topic guide which includes the WHO's Global Dementia Observatory indicators; (2) multi-sectoral stakeholder interviews to verify the secondary sources used in the desk review, and to identify gaps and opportunities in policy and service provisions; and (3) a SWOT-analysis examining the strengths, weaknesses, opportunities and threats in current care and support provisions in South Africa. Our findings highlight the gaps and opportunities with current service provision and show how structural factors create barriers to diagnosis, support, and care. There is an urgent need for intersectoral policy responses to support and strengthen current health, social care, and long-term support systems so that people living with dementia and their families can live and age well. This paper forms part of a larger study on strengthening responses to dementia (The STRIDE project).</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"452-475"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11041067/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9654961","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}
Pub Date : 2024-04-01Epub Date: 2023-05-03DOI: 10.1177/14713012231173012
Adrian Martinez-Ruiz, Susan Yates, Gary Cheung, Sarah Cullum, Makarena Dudley, Rita Krishnamurthi, Fuafiva Fa'alau, Ngaire Kerse, Mary Roberts, Seini Taufa, Claudia Rivera Rodriguez
Introduction: Recent estimations have projected a threefold increase in dementia prevalence in Aotearoa New Zealand (NZ) by 2050, particularly in Maori and Pacific peoples. However, to date, there are no national data on dementia prevalence, and overseas data are used to estimate the NZ dementia statistics. The aim of this feasibility study was to prepare the groundwork for the first full-scale NZ dementia prevalence study that is representative of Māori, European, Pacific and Asian peoples living in NZ.
Methods: The main feasibility issues were: (i) Sampling to ensure adequate community representation from the included ethnic groups, (ii) Preparing a workforce to conduct the fieldwork and developing quality control, (iii) Raising awareness of the study in the communities (iv) Maximizing recruitment by door-knocking, (v) Retaining those we have recruited to the study and (vi) Acceptability of study recruitment and assessment using adapted versions of the 10/66 dementia protocol in different ethnic groups living in South Auckland.
Results: We found that a probability sampling strategy using NZ Census data was reasonably accurate and all ethnic groups were sampled effectively. We demonstrated that we were able to train up a multi-ethnic workforce consisting of lay interviewers who were able to administer the 10/66 dementia protocol in community settings. The response rate (224/297, 75.5%) at the door-knocking stage was good but attrition at subsequent stages was high and only 75/297 (25.2%) received the full interview.
Conclusions: Our study showed that it would be feasible to conduct a population-based dementia prevalence study using the 10/66 dementia protocol in Māori, European and Asian communities living in NZ, utilizing a qualified, skilled research team representative of the families participating in the study. The study has demonstrated that for recruitment and interviewing in Pacific communities a different but culturally appropriate approach is required.
{"title":"Living with Dementia in Aotearoa (LiDiA): A Feasibility Study for a Dementia Prevalence Study in Māori and Non-Māori Living in New Zealand.","authors":"Adrian Martinez-Ruiz, Susan Yates, Gary Cheung, Sarah Cullum, Makarena Dudley, Rita Krishnamurthi, Fuafiva Fa'alau, Ngaire Kerse, Mary Roberts, Seini Taufa, Claudia Rivera Rodriguez","doi":"10.1177/14713012231173012","DOIUrl":"10.1177/14713012231173012","url":null,"abstract":"<p><strong>Introduction: </strong>Recent estimations have projected a threefold increase in dementia prevalence in Aotearoa New Zealand (NZ) by 2050, particularly in Maori and Pacific peoples. However, to date, there are no national data on dementia prevalence, and overseas data are used to estimate the NZ dementia statistics. The aim of this feasibility study was to prepare the groundwork for the first full-scale NZ dementia prevalence study that is representative of Māori, European, Pacific and Asian peoples living in NZ.</p><p><strong>Methods: </strong>The main feasibility issues were: (i) Sampling to ensure adequate community representation from the included ethnic groups, (ii) Preparing a workforce to conduct the fieldwork and developing quality control, (iii) Raising awareness of the study in the communities (iv) Maximizing recruitment by door-knocking, (v) Retaining those we have recruited to the study and (vi) Acceptability of study recruitment and assessment using adapted versions of the 10/66 dementia protocol in different ethnic groups living in South Auckland.</p><p><strong>Results: </strong>We found that a probability sampling strategy using NZ Census data was reasonably accurate and all ethnic groups were sampled effectively. We demonstrated that we were able to train up a multi-ethnic workforce consisting of lay interviewers who were able to administer the 10/66 dementia protocol in community settings. The response rate (224/297, 75.5%) at the door-knocking stage was good but attrition at subsequent stages was high and only 75/297 (25.2%) received the full interview.</p><p><strong>Conclusions: </strong>Our study showed that it would be feasible to conduct a population-based dementia prevalence study using the 10/66 dementia protocol in Māori, European and Asian communities living in NZ, utilizing a qualified, skilled research team representative of the families participating in the study. The study has demonstrated that for recruitment and interviewing in Pacific communities a different but culturally appropriate approach is required.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"343-365"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11041074/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9774287","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}
Pub Date : 2024-02-01Epub Date: 2023-12-15DOI: 10.1177/14713012231220759
Maria J Marques, Manuel Gonçalves-Pereira, Marjolein de Vugt, Frans Verhey, Bob Woods
Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches.Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis.Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., 'communication') may even improve after initial decline. 'Closeness' was consistently altered over time, from carers' perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that 'mixed feelings' (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services' assistance, seemed to facilitate positive (re)appraisals of the relationship.Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.
{"title":"The quality of family relationships in dementia: Mixed methods to unravel mixed feelings.","authors":"Maria J Marques, Manuel Gonçalves-Pereira, Marjolein de Vugt, Frans Verhey, Bob Woods","doi":"10.1177/14713012231220759","DOIUrl":"10.1177/14713012231220759","url":null,"abstract":"<p><p><b>Objective:</b> Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches.<b>Methods:</b> A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis.<b>Results:</b> Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., 'communication') may even improve after initial decline. 'Closeness' was consistently altered over time, from carers' perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that 'mixed feelings' (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services' assistance, seemed to facilitate positive (re)appraisals of the relationship.<b>Conclusions:</b> A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"210-233"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10807244/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813593","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}
Pub Date : 2024-02-01Epub Date: 2023-12-06DOI: 10.1177/14713012231221025
Jing-Yi Lu, Ya-Hui Lee, Yi-Fen Wang
Objective: This study aimed to examine the dilemmas encountered and the countermeasures adopted by case managers, who care for individuals with dementia. The study also aimed to identify the types of support and assistance case managers require.Methods: In this qualitative study, the researchers conducted semi-structured interviews with 10 case managers, six from integrated dementia care centers and four from community-based dementia care centers in Taiwan.Results: The results are as follows: (1) Case managers providing services for individuals with dementia primarily encountered two major dilemmas, including cognitive differences (such as a lack of understanding of dementia, differences in ideas about dementia care, and distrust of the professionalism of case managers) with family members and their own insufficient professional capabilities, which made it difficult to reach a consensus on caregiving with family members and address the diverse conditions of individuals with dementia. (2) In response to these dilemmas, case managers adopted various approaches to enhance families' understanding of dementia and facilitate reaching a consensus on care. They also improved their professional capabilities through team discussions and resource networking. (3) The support and assistance required by case managers are continuous learning, the enhancement of their professional competencies, organizational support, and workload management.Conclusion: The findings of this study contribute to an understanding of the dilemmas faced by case managers in Taiwan's centers for integrated dementia care and community-based dementia care centers during policies implementation, as well as the strategies they adopted and the assistance they required. These results can also offer recommendations for policies, professional training, dementia services, and resources to reduce the disparity between policy and practice.
{"title":"Dilemmas and support strategies in dementia care: Experiences of case managers in Taiwan.","authors":"Jing-Yi Lu, Ya-Hui Lee, Yi-Fen Wang","doi":"10.1177/14713012231221025","DOIUrl":"10.1177/14713012231221025","url":null,"abstract":"<p><p><b>Objective:</b> This study aimed to examine the dilemmas encountered and the countermeasures adopted by case managers, who care for individuals with dementia. The study also aimed to identify the types of support and assistance case managers require.<b>Methods:</b> In this qualitative study, the researchers conducted semi-structured interviews with 10 case managers, six from integrated dementia care centers and four from community-based dementia care centers in Taiwan.<b>Results:</b> The results are as follows: (1) Case managers providing services for individuals with dementia primarily encountered two major dilemmas, including cognitive differences (such as a lack of understanding of dementia, differences in ideas about dementia care, and distrust of the professionalism of case managers) with family members and their own insufficient professional capabilities, which made it difficult to reach a consensus on caregiving with family members and address the diverse conditions of individuals with dementia. (2) In response to these dilemmas, case managers adopted various approaches to enhance families' understanding of dementia and facilitate reaching a consensus on care. They also improved their professional capabilities through team discussions and resource networking. (3) The support and assistance required by case managers are continuous learning, the enhancement of their professional competencies, organizational support, and workload management.<b>Conclusion:</b> The findings of this study contribute to an understanding of the dilemmas faced by case managers in Taiwan's centers for integrated dementia care and community-based dementia care centers during policies implementation, as well as the strategies they adopted and the assistance they required. These results can also offer recommendations for policies, professional training, dementia services, and resources to reduce the disparity between policy and practice.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"234-250"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138500365","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-02-01Epub Date: 2023-12-17DOI: 10.1177/14713012231222309
Jessica Budgett, Andrew Sommerlad, Nuriye Kupeli, Sedigheh Zabihi, Anna Olsen, Claudia Cooper
Background: Individualised goal-setting outcome measures can be a useful way of reflecting people living with dementia and family carers' differing priorities regarding quality-of-life domains in the highly heterogeneous symptomatology of the disease. Evaluating goal-setting measures is challenging, and there is limited evidence for their psychometric properties.
Aim: (1) To describe what goal-setting outcomes have been used in this population; (2) To evaluate their validity, reliability, and feasibility in RCTs.
Method: We systematically reviewed studies that utilised goal-setting outcome measures for people living dementia or their family carers. We adapted a risk of bias and quality rating system based on the COSMIN guidelines to evaluate the measurement properties of outcomes when used within RCTs.
Results: Thirty studies meeting inclusion criteria used four different goal-setting outcome measures: Goal Attainment Scaling (GAS), Bangor Goal Setting Interview (BGSI), Canadian Occupational Performance Measure (COPM) and Individually Prioritized Problems Assessment (IPPA); other papers have reported study-specific goal-setting attainment systems. Only GAS has been used as an outcome over periods greater than 9 months (up to a year). Within RCTs there was moderate quality evidence for sufficient content validity and construct validity for GAS, COPM and the BGSI. Reliability was only assessed in one RCT (using BGSI); in which two raters reviewed interview transcripts to rate goals with excellent inter-rater reliability. Feasibility was reported as good across the measures with a low level of missing data.
Conclusion: We found moderate quality evidence for good content and construct validity and feasibility of GAS, BGSI and COPM. While more evidence of reliability of these measures is needed, we recommend that future trials consider using individualised goal setting measures, to report the effect of interventions on outcomes that are most meaningful to people living with dementia and their families.
{"title":"Setting individualised goals for people living with dementia and their family carers: A systematic review of goal-setting outcome measures and their psychometric properties.","authors":"Jessica Budgett, Andrew Sommerlad, Nuriye Kupeli, Sedigheh Zabihi, Anna Olsen, Claudia Cooper","doi":"10.1177/14713012231222309","DOIUrl":"10.1177/14713012231222309","url":null,"abstract":"<p><strong>Background: </strong>Individualised goal-setting outcome measures can be a useful way of reflecting people living with dementia and family carers' differing priorities regarding quality-of-life domains in the highly heterogeneous symptomatology of the disease. Evaluating goal-setting measures is challenging, and there is limited evidence for their psychometric properties.</p><p><strong>Aim: </strong>(1) To describe what goal-setting outcomes have been used in this population; (2) To evaluate their validity, reliability, and feasibility in RCTs.</p><p><strong>Method: </strong>We systematically reviewed studies that utilised goal-setting outcome measures for people living dementia or their family carers. We adapted a risk of bias and quality rating system based on the COSMIN guidelines to evaluate the measurement properties of outcomes when used within RCTs.</p><p><strong>Results: </strong>Thirty studies meeting inclusion criteria used four different goal-setting outcome measures: Goal Attainment Scaling (GAS), Bangor Goal Setting Interview (BGSI), Canadian Occupational Performance Measure (COPM) and Individually Prioritized Problems Assessment (IPPA); other papers have reported study-specific goal-setting attainment systems. Only GAS has been used as an outcome over periods greater than 9 months (up to a year). Within RCTs there was moderate quality evidence for sufficient content validity and construct validity for GAS, COPM and the BGSI. Reliability was only assessed in one RCT (using BGSI); in which two raters reviewed interview transcripts to rate goals with excellent inter-rater reliability. Feasibility was reported as good across the measures with a low level of missing data.</p><p><strong>Conclusion: </strong>We found moderate quality evidence for good content and construct validity and feasibility of GAS, BGSI and COPM. While more evidence of reliability of these measures is needed, we recommend that future trials consider using individualised goal setting measures, to report the effect of interventions on outcomes that are most meaningful to people living with dementia and their families.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"312-340"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10807246/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813585","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}
Pub Date : 2024-02-01Epub Date: 2023-12-13DOI: 10.1177/14713012231220231
Hoi Man Chan, Ken Hok Man Ho, Rebecca Cho Kwan Pang, Helen Yue Lai Chan
Psychoeducation with an active participation component is effective in facilitating family caregivers of people living with dementia to learn about the disease and gain relevant caregiving skills. However, research into the best strategies to promote active participation has received little attention, and the factors hindering active participation are also unknown. Therefore, the nine-stage framework of the Joanna Briggs Institute methodology for scoping reviews was adopted to map and identify information about the active participation of family caregivers of people living with dementia in psychoeducation. The search criteria focused on identifying primary research studies and grey literature relevant to psychoeducation with active participation that had the family caregivers of community dwelling people living with dementia as the target population. Two reviewers independently screened and selected items from the literature. Content analysis was conducted to thematically synthesise strategies mentioned in 29 articles published from 2011 and 2021. Content analysis revealed six strategies that promoted active participation: (1) the involvement of interventionist and qualifications; (2) the teaching and learning methods used to conduct psychoeducation with active participation; (3) tailoring the contents and formats to the experiences, preferences, and resources of the caregivers; (4) collaborating with caregivers; (5) facilitating sharing and support between peers; and (6) providing experiential learning opportunities. Two factors hindering active caregiver participation were negative caregiver emotions and cultural taboos. This review offers ideas for evidence-based practices that can be used by health and social care providers when planning psychoeducation with active participation for the family caregivers of people living with dementia.
{"title":"Strategies and factors to enhance active participation of family caregivers of people with dementia in psychoeducation: A scoping review.","authors":"Hoi Man Chan, Ken Hok Man Ho, Rebecca Cho Kwan Pang, Helen Yue Lai Chan","doi":"10.1177/14713012231220231","DOIUrl":"10.1177/14713012231220231","url":null,"abstract":"<p><p>Psychoeducation with an active participation component is effective in facilitating family caregivers of people living with dementia to learn about the disease and gain relevant caregiving skills. However, research into the best strategies to promote active participation has received little attention, and the factors hindering active participation are also unknown. Therefore, the nine-stage framework of the Joanna Briggs Institute methodology for scoping reviews was adopted to map and identify information about the active participation of family caregivers of people living with dementia in psychoeducation. The search criteria focused on identifying primary research studies and grey literature relevant to psychoeducation with active participation that had the family caregivers of community dwelling people living with dementia as the target population. Two reviewers independently screened and selected items from the literature. Content analysis was conducted to thematically synthesise strategies mentioned in 29 articles published from 2011 and 2021. Content analysis revealed six strategies that promoted active participation: (1) the involvement of interventionist and qualifications; (2) the teaching and learning methods used to conduct psychoeducation with active participation; (3) tailoring the contents and formats to the experiences, preferences, and resources of the caregivers; (4) collaborating with caregivers; (5) facilitating sharing and support between peers; and (6) providing experiential learning opportunities. Two factors hindering active caregiver participation were negative caregiver emotions and cultural taboos. This review offers ideas for evidence-based practices that can be used by health and social care providers when planning psychoeducation with active participation for the family caregivers of people living with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"272-291"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813586","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}