Dementia (London, England)最新文献

{"title":"Meaningful co-production to bring meaningful change: Developing the Allied Health Professionals Dementia Framework for Wales together.","authors":"Laura Braithwaite Stuart, Natalie Elliott, Rebecca Hanmer, Andrew Woodhead","doi":"10.1177/14713012241236116","DOIUrl":"10.1177/14713012241236116","url":null,"abstract":"<p><p>In line with increasing participatory approaches to service and research design, there is a growing appreciation of the need to understand the lived experience of people accessing care and support, including people living with dementia, their carers and supporters. This article describes the process and value of co-production, used alongside principles of appreciative inquiry and evidence-informed practice, as an approach to developing a strategic workforce framework, aimed at increasing access to Allied Health Professionals (AHPs) for people living with dementia and their carers. Engaging in the co-production approach throughout the project lifecycle resulted in positive outcomes as reported by people with lived experience and professionals who were involved, as well as a published national framework that is rooted in the first-hand experiences of people living with dementia, their carers and supporters.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"724-740"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140308162","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}

{"title":"Do people with dementia and carers get what they need? Barriers in social care and carers needs assessments.","authors":"Clarissa Giebel, James Watson, Julie Dickinson, Mark Gabbay, Kath Halpin, Andrew Harding, Caroline Swarbrick","doi":"10.1177/14713012241237673","DOIUrl":"10.1177/14713012241237673","url":null,"abstract":"<p><strong>Background: </strong>People with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care.</p><p><strong>Methods: </strong>Unpaid carers of people with dementia and professionals conducting social care or carers needs assessment living or working in England were interviewed remotely about their experiences between April and August 2023. Topic guides were co-produced with two unpaid carers, and both were supported to code anonymised transcripts. Thematic analysis was used to analyse the data.</p><p><strong>Findings: </strong>Twenty-seven unpaid carers (<i>n</i> = 21) and professionals (<i>n</i> = 6) participated. Four themes were generated: (1) Issues with accessing needs assessments, not the process; (2) Knowledge of needs assessments and the health and social care system; (3) Expectations of unpaid carers; and (4) Post-assessment unmet needs. The most prominent barriers unpaid carers and their relatives with dementia encountered were awareness of and access to needs assessment. Unpaid carers were mostly unaware of the existence and entitlement to a needs assessment, and sometimes realised they had participated in one without their knowledge. Professionals described the pressures on their time and the lack of financial resources within services.</p><p><strong>Conclusions: </strong>To facilitate improved access to dementia care and support for carers, the pathway to accessing needs assessments needs to be clearer, with better integration and communication between health and social care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"550-566"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11059843/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140013778","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}

{"title":"Increased community engagement of Indigenous Peoples in dementia research leads to higher context relevance of results.","authors":"Tonya M Kjerland, Shawnda Schroeder, Va'atausili Tofaeono, Melissa Walls, Joseph P Gone","doi":"10.1177/14713012241233651","DOIUrl":"10.1177/14713012241233651","url":null,"abstract":"<p><strong>Introduction: </strong>Health research that focuses on Indigenous Peoples must ensure that the community in question is actively engaged, and that the results have context relevance for Indigenous Peoples. Context relevance is \"the benefits, usability, and respectful conduct of research from the perspective of Indigenous communities.\" The purpose of this study was to apply two tools within an already-published scoping review of 76 articles featuring research on cognitive impairment and dementia among Indigenous Peoples worldwide. One tool assessed levels of community engagement reported in the corpus, and the other tool assessed the context relevance of recommendations in the corpus. We hypothesized that research with higher levels of reported community engagement would produce recommendations with greater context relevance for Indigenous Peoples.</p><p><strong>Methods: </strong>We employed semi-structured deductive coding using two novel tools assessing levels of reported community engagement and context relevance of recommendations based on studies included in the existing scoping review.</p><p><strong>Results: </strong>Application of the two tools revealed a positive relationship between increasing community engagement and greater context relevance. Community engagement primarily occurred in studies conducted with First Nations, Inuit, and Métis populations in Canada and with Australian Aboriginal and/or Torres Strait Islander Peoples. Research with Alaska Native, American Indian, and Native Hawaiian Peoples in the USA stood out for its comparative lack of meaningful community engagement.</p><p><strong>Discussion: </strong>There is opportunity to utilize these tools, and the results of this assessment, to enhance training and mentorship for researchers who work with Indigenous populations. There is a need to increase investigator capacity to involve communities throughout all phases of research, particularly in the pre-research stages.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"643-668"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11059836/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140041081","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}

{"title":"The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia.","authors":"Thomas Faulkner, Julie Dickinson, Stan Limbert, Clarissa Giebel","doi":"10.1177/14713012241236106","DOIUrl":"10.1177/14713012241236106","url":null,"abstract":"<p><p><i>Background</i>. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. <i>Methods</i>. Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. <i>Findings</i>. Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. <i>Conclusions</i>. Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"567-583"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140029674","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}

{"title":"Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township.","authors":"Aqeela Mahomed, Chrisma Pretorius","doi":"10.1177/14713012241234155","DOIUrl":"10.1177/14713012241234155","url":null,"abstract":"<p><p>This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation to dementia-specific services, psychoeducation on dementia as a disease and its behavioural manifestations, as well as practical skills to manage the disease process. Caregivers expressed the need for in-depth, accessible education to boost their confidence and resilience in handling the challenges of dementia caregiving. They also proposed community initiatives to raise awareness, promote knowledge, and facilitate early detection and diagnosis of dementia. Additional needs included informational and educational workshops, resources like transportation services and helplines, day care facilities, media campaigns, and collaboration with the government for funding and policy change. New caregivers were advised to seek comprehensive education, support, and services while preserving the dignity of their family members with dementia. Remarkably, the identified needs and community initiatives aligned with the priority areas outlined by ADI for a National Dementia Plan, which South Africa currently lacks. The study highlights the importance of developing a National Dementia Plan in South Africa through collaboration among stakeholders, including communities, policy-makers, and multidisciplinary healthcare teams, while ensuring that individuals and families affected by dementia have a voice.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"622-642"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11059838/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139731205","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}

{"title":"Views of healthcare professionals on their relationships with families of people living with dementia: A qualitative study.","authors":"Kuai In Tam, Jianwei Wu, Mingxia Zhu","doi":"10.1177/14713012241234955","DOIUrl":"10.1177/14713012241234955","url":null,"abstract":"<p><strong>Objective: </strong>Healthcare professionals as well as families play a vital role in ensuring the quality of care for people living with dementia. However, the relationships between healthcare professionals and families of people living with dementia are not extensively examined, particularly within the Chinese cultural context of dementia. The goal of this study was to explore the views of healthcare professionals on their relationships with families of people living with dementia.</p><p><strong>Design: </strong>This qualitative study was grounded in the interpretative phenomenological analysis framework.</p><p><strong>Methods: </strong>Data were collected using focus-group interviews. Qualitative data were transcribed verbatim and analysed using interpretative phenomenological analysis.</p><p><strong>Results: </strong>The study recruited a total of 26 healthcare professionals from 3 long-term care facilities. The study found that conflicts were inherent in the relationships between professionals and families of people living with dementia, and conflicts were found to manifest in three core domains: 1) Families demonstrated a lack of understanding about dementia, 2) Professionals faced challenges in managing families' unrealistic expectations regarding the disease status and the prognosis of people living with dementia, 3) Families did not perceive themselves as being responsible for the care of people living with dementia.</p><p><strong>Conclusions: </strong>The present study found that the prevailing factor underpinning the relational conflicts between healthcare professionals and families of people living with dementia, as reported by healthcare professionals was the perceived lack of understanding about dementia amongst families of those affected.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"610-621"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139906987","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}

{"title":"Self-report instruments measuring aspects of self for people living with dementia: A systematic literature review of psychosocial interventions.","authors":"Jessica Baggaley, Emma Wolverson, Chris Clarke","doi":"10.1177/14713012241240906","DOIUrl":"10.1177/14713012241240906","url":null,"abstract":"<p><strong>Objective: </strong>A positive sense of self may be a key domain of psychological well-being for people living with dementia and therefore a legitimate target for psychosocial interventions in dementia care. Determining the effectiveness of such interventions often requires valid self-report instruments. This review aimed to investigate what aspects of self have been measured using self-report instruments in evaluating psychosocial interventions for people living with dementia and to explore the effectiveness of these interventions in terms of positive outcomes related to aspects of self.</p><p><strong>Method: </strong>A systematic search of the literature using five electronic databases and one register (CENTRAL) was conducted. A narrative synthesis and methodological quality assessment was completed for the included studies.</p><p><strong>Results: </strong>A total of 24 studies were included in the review. Seven aspects of self were measured using a range of self-report instruments, many of which have not been validated for dementia. Aspects of self were; self-esteem, self-efficacy, self-compassion, self-growth, self-acceptance, self-management, and self-identity. Studies included a variety of interventions; however, the effectiveness of these interventions for these aspects of self was mixed.</p><p><strong>Conclusion: </strong>There is some evidence that psychosocial interventions improve specific aspects of self in dementia but further research to improve this evidence base is needed. Future research should also investigate and confirm the validity and reliability of existing self-report instruments that aim to measure aspects of self in dementia. Limitations and implications of the review are discussed.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"669-702"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140308163","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}

{"title":"Experiences of Indonesian people with dementia and carers undertaking an online-delivered exercise program.","authors":"Yulisna Mutia Sari, Keith D Hill, Elissa Burton, Den-Ching A Lee, Aislinn F Lalor","doi":"10.1177/14713012241235688","DOIUrl":"10.1177/14713012241235688","url":null,"abstract":"<p><p>Participating in physical activity is beneficial for older people with dementia. Little is known however about the perceptions of people living with dementia undertaking an online-delivered exercise program. This study aimed to explore the experiences and perceptions of older people with dementia and their carers in Indonesia participating in an online-delivered exercise program, and factors that may influence acceptability to the program. An exploratory qualitative study design using semi-structured interviews was used. Data were recorded, transcribed verbatim, translated into English, and analyzed thematically. Twelve participants with dementia (mean age = 63.3 years) and 30 carers (26 family carers and 4 paid carers) (mean age = 37.9 years) were interviewed separately. Seven themes were identified: (i) Motivating factors to participate; (ii) Benefits for people with dementia; (iii) Impacts on carers; (iv) Challenges and enablers to exercising; (v) Carers' strategies for exercise engagement; (vi) Roles, relationships and supports; and (vii) Participants' receptiveness to online delivery of the exercise program. This study illustrated that an online-delivered exercise program was acceptable for people with dementia and their carers in Indonesia and reinforced the importance of carers' support for the exercise program. These findings can help physiotherapists and other exercise practitioners in considering the aspects of delivery that people with dementia and their carers value in participating in online-delivered exercise programs.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"584-609"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11059841/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139974792","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}

{"title":"Health and Social Care System Preparedness for Dementia Care in Mexico: Current Status and Recommendations to Achieve Optimal Care.","authors":"Mariana López Ortega, Claudia I Astudillo García, Rosa Farrés, Luis Miguel Gutiérrez Robledo","doi":"10.1177/14713012231173806","DOIUrl":"10.1177/14713012231173806","url":null,"abstract":"<p><p>In this article, we summarise the findings of the situational analysis of dementia care generated as part of the <i>STRiDE: Strengthening responses to dementia care in developing countries</i> project, including a desk review, a SWOT analysis and views from relevant stakeholders. In addition, the article incorporates the experience of 4 years of work within the STRiDE project of FEDMA, Mexico's Federation of Alzheimer's and other dementias and its allied Associations in presenting specific recommendations to optimise dementia care in the country. All the information gathered brings together a detailed understanding of the current dementia care systems of diagnosis, treatment, and support in general and what is lacking, allowing for the generation of general recommendations to enhance the isolated efforts currently available and amplify their impact, as well as strategies to generate new services currently unavailable, but urgently needed.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"366-377"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9444820","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}

{"title":"Pathways to care for people with dementia in India: An exploratory study using case vignettes.","authors":"Priya Treesa Thomas, Jayeeta Rajagopalan, Saadiya Hurzuk, Narendhar Ramasamy, Meera Pattabiraman, Chiara De Poli, Klara Lorenz-Dant, Adelina Comas-Herrera, Suvarna Alladi","doi":"10.1177/14713012231193081","DOIUrl":"10.1177/14713012231193081","url":null,"abstract":"<p><strong>Background: </strong>Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India.</p><p><strong>Aim: </strong>This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia.</p><p><strong>Methods: </strong>As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case.</p><p><strong>Results: </strong>Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life.</p><p><strong>Conclusions and recommendations: </strong>Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"493-511"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10319615","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}