Dementia (London, England)最新文献

{"title":"Enabling work for people with dementia - Recommendations for interventions: A mixed-methods review.","authors":"Hanne Peoples, Jesper Larsen Maersk, Hanne K Kristensen","doi":"10.1177/14713012241267122","DOIUrl":"10.1177/14713012241267122","url":null,"abstract":"<p><p>Worldwide, 50 million people are living with dementia. As more individuals develop dementia while still working, dementia will increasingly become a workplace issue and a societal concern. Interventions targeted at work retainment, can reduce, and postpone the loss of cognitive functioning following dementia. However, there is a small body of research focused on recommendations for work interventions for people with dementia. The aim of this mixed-methods review was to investigate experiences of work following a dementia diagnosis from the perspective of people with dementia, their relatives, employers, co-workers and HR-professionals, with the objective of formulating recommendations for work interventions for people with dementia. A mixed-method approach guided the review. 16 original studies published between 1989 to 2023 were included, with a collective sample of 684 participants. The review shows that it is possible to live and work well with dementia, if collaborative solutions are continuously negotiated to meet the needs of the person with dementia and the workplace, and with attention to possible contextual enablers and barriers. The review highlights four key elements for successful work interventions for people with dementia: 1) Person-centered Approach, 2) Contextual Relevance, 3) Knowledge-based and 4) Dynamic Approach.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1382-1415"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141749904","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":"Patient-reported experience measures for people living with dementia: A scoping review.","authors":"Madison Chapman, Rachel Milte, Suzanne Dawson, Kate Laver","doi":"10.1177/14713012241272823","DOIUrl":"10.1177/14713012241272823","url":null,"abstract":"<p><p>The prevalence of dementia is increasing globally, with an estimated 139 million people expected to be living with dementia by 2050. Across numerous countries, substandard care for people with dementia is evident, with quality improvement needed. Recently, a focus on patient-reported experience measures (PREMs) has been utilised in healthcare services as a method of evaluating the care experiences provided and determining areas of improvement. The literature is scarce regarding the feasibility and acceptability of implementing PREMs with people with moderate to advanced dementia. This scoping review aimed to identify PREMs that have been used with vulnerable populations including people with cognitive impairment, mental health concerns, and children, outline dimensions included, and determine adaptions made to the PREMs to improve acceptability of the instruments for vulnerable populations. A database search of Medline was conducted to identify 36 studies including 32 PREMs. The PREMs identified covered a range of dimensions, most frequently care effectiveness, care environment, and patient involvement. The most common adaption to the PREMs was simplification of wording and sentence structure. Several measures conflated patient outcomes and patient satisfaction with patient experience, limiting utility for improving patient experience specifically. While several PREMs have been used with people with dementia, challenges in their implementation and their applicability to specific settings limit their use more broadly. Evidently, there is a need for development of a PREM for people with moderate to advanced dementia that is applicable across healthcare settings and is appropriately adapted for varying cognitive and communicative barriers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1354-1381"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11475968/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141908521","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":"Nature nourishes the feeling of being - A walking interview study exploring the meaning of participation in nature-based activities for people living with dementia.","authors":"Annemarie G Toubøl, Trine Holt Clemmensen, Laila M Busted","doi":"10.1177/14713012241297211","DOIUrl":"https://doi.org/10.1177/14713012241297211","url":null,"abstract":"<p><p>This study aims to explore the meaning of participating in nature-based activities as seen from the perspective of people living with dementia. Being in a natural environment in contrast to a constructed environment has not previously been investigated, even though several studies have shown that nature-based activities may impact people's well-being, feelings of happiness, and a feeling of maintaining selfhood. A qualitative design was applied in this study, using walking-interviews to explore the meaning of participating in nature-based activities. Interviews have been conducted with 15 people with mild to moderate dementia in three municipalities. The analytical process using reflexive thematic analysis resulted in an overall theme that participation in nature-based activity nourishes the person by creating a feeling of having value as a person. Further, three subthemes were identified: Oasis for being, linking to the past, present, and future, and feeling capable. The findings of this study indicate that sensory stimulation when being in nature promotes embodied narratives and experiences, which contributes to the feeling of connecting to oneself, and to feeling valuable as a capable human being. This provides an important implication for practice that accessible nature-based activities may provide an overlooked opportunity to support self-identity for people living with dementia. However, it is time for a cultural and discursive shift in nature-based activities, where a delicate balance ensures that people living with dementia can derive inherent value from simply being in nature.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241297211"},"PeriodicalIF":0.0,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559625","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":"\"Understanding dementia together\": The design, delivery and evaluation of a collaborative, inter-professional dementia workshop for healthcare students.","authors":"Trish O'Sullivan, Niamh Moore, Joseph G McVeigh, Suzanne Timmons, Tony Foley","doi":"10.1177/14713012241296173","DOIUrl":"https://doi.org/10.1177/14713012241296173","url":null,"abstract":"<p><strong>Background: </strong>A collaborative, multi-disciplinary team input is crucial for the optimal management of the older adult with complex care needs such as dementia. Interprofessional learning (IPL) at undergraduate level can lead to improved collaborative knowledge and skills. The aim of this study was to develop, deliver and evaluate an IPL dementia workshop for healthcare students across 11 disciplines. A secondary aim was to determine whether there is a clinical application of learned knowledge in students who completed the workshop and subsequently underwent clinical placement.</p><p><strong>Methods: </strong>The design of the IPL workshop aligned with Kern's map for the development of a curriculum in medical education. The Alzheimer's Disease Knowledge Scale (ADKS) was used to assess students' knowledge of dementia pre-and-post workshop, as well as opened-ended questions on role recognition and communication.</p><p><strong>Results: </strong>A total of 102 students completed the workshop questionnaire, with a follow up of 47 students on clinical placement. There was a statistically significant increase in students' knowledge and confidence levels in communication with a person with dementia. Students reported positively on the workshop format, the collaborative nature of the workshop, as well as the role of the patient advocate. The follow up of students on clinical placement showed a perceived behavioural change in communication modification.</p><p><strong>Conclusion: </strong>Our study demonstrates the benefits of an IPL initiative across multiple disciplines, with perceived behavioural change on clinical placement.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241296173"},"PeriodicalIF":0.0,"publicationDate":"2024-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142549303","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":"The experiences of unpaid carers of people living with dementia during the cost-of-living crisis: A reflexive thematic analysis.","authors":"Daniel Herron, Lisa Kyte, Lilli Clewes","doi":"10.1177/14713012241296188","DOIUrl":"https://doi.org/10.1177/14713012241296188","url":null,"abstract":"<p><p>Some carers have reported struggling to manage the additional costs of caring for someone with dementia, which has negatively impacted upon their financial resilience. Since 2021, this has been compounded by the cost-of-living crisis experienced in the United Kingdom. This crisis has been driven by sharp increases in energy prices and the prices of everyday basics such as food. This study aimed to better understand how unpaid carers, supporting and co-habiting with people living with dementia, experience the cost-of-living crisis, and the impact this has on their ability to provide care for the person living with dementia. Eleven carers supporting and co-habiting with people living with dementia in England, took part in two semi-structured interviews approximately 3 months apart between November 2022 and February 2023. All transcripts were analysed using reflexive thematic analysis. Carers reported having to make difficult and sometimes drastic decisions in reaction to the cost-of-living crisis and the uncertainty of future cost-of-living increases, such as using blankets and extra lays of clothing for them and the person living with dementia in place of using the heating system in their home, going without food so their loved one can eat, or even missing social opportunities. Some carers described aspects which they felt mitigated some of the negative impact of the cost-of-living crisis, such as being able to draw upon financial resources or their local authority providing social events which included a heated space with food. The cost-of-living crisis has led to carers having to make difficult decisions which created worry and anxiety. Findings indicate that many carers need financial support, and it would be beneficial for free social events to be organised which provide a heated space and food, where carers and people living with dementia can socialise with others.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241296188"},"PeriodicalIF":0.0,"publicationDate":"2024-10-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142514047","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":"Preventing risk of placement breakdown and hospital admission in the management of distressed behaviour in dementia care: A qualitative case study with family and care-home staff.","authors":"Katherine Nunn, Suzanne Crooks, Donna Gilroy","doi":"10.1177/14713012241287572","DOIUrl":"https://doi.org/10.1177/14713012241287572","url":null,"abstract":"<p><p><b>Objectives:</b> Behaviours such as hitting-out and declining personal care are commonly exhibited by people living with dementia and are associated with care-giver stress and anxiety and care home placement breakdowns. Traditionally, pharmacological approaches have been used to manage behaviour; however, research indicates limited effectiveness. National guidelines recommend use of non-pharmacological interventions as first line treatment for distress, but further research is required to elucidate the components that lead to improved care for people living with dementia. This study aims to explore what works, examining case studies in which a non-pharmacological clinical intervention, the Newcastle Model, was used to understand and manage distressed behaviour in dementia care within care home settings. <b>Method:</b> A qualitative case study design was used. Three cases were selected from the Edinburgh Behaviour Support Service for their success in preventing care home placement breakdown during a distressed behaviour intervention in NHS Scotland. Family members and staff involved in the interventions within these cases were interviewed (<i>N</i> = 6). Thematic analysis was used to analyse data. <b>Findings:</b> All participants reported positive outcomes from the intervention. Three key themes were identified, each with subthemes. Participants described a supportive, non-judgmental environment which allowed them to integrate knowledge about dementia and tailor interventions to the specific needs of the individual living with dementia. There was also a sense of family and staff coming together to unite with shared goals. A preliminary model of all of themes and their interactions is presented. <b>Conclusion:</b> The study supports use of biopsychosocial, formulation-led approaches in the understanding and treatment of complex behavioural presentations in community care settings. It suggests that clinicians should endeavour to facilitate safe and open environments for care home staff and family members, in order to promote attribution change and person-centered care, and to help mediate differences and conflict between staff and family members.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241287572"},"PeriodicalIF":0.0,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142482307","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":"Exploring the perceptions of New Zealand Chinese dementia carers on the adapted world health organization iSupport manual: A qualitative study.","authors":"Fei Li, John Parsons, Lily Dongxia Xiao, Gary Cheung","doi":"10.1177/14713012241272893","DOIUrl":"https://doi.org/10.1177/14713012241272893","url":null,"abstract":"<p><strong>Background: </strong>Across countries, most dementia carers report a lack of adequate information about dementia and local services. To address this issue, the World Health Organization developed the iSupport programme to provide information and support to dementia carers. The iSupport online programme was found to be feasible and acceptable by dementia carers. However, the potential of using the iSupport manual (iSupport) specifically for Chinese dementia carers in New Zealand remains unknown.</p><p><strong>Objective: </strong>This study aimed to (1) identify refinements to adapt iSupport by eliciting the perspectives of Chinese dementia carers; and (2) explore the educational needs of Chinese dementia carers, which can inform the development of support programmes tailored to their specific requirements.</p><p><strong>Design: </strong>This was a qualitative descriptive study using semistructured interviews. The data were analysed using thematic analysis.</p><p><strong>Results: </strong>Twelve Chinese dementia carers were interviewed (mean age 58.0 years, 100% female, and mean caring experience of 2.2 years). Emerging themes were identified within three domains: (1) usefulness, (2) complexities of using iSupport, and (3) suggestions for improvement.</p><p><strong>Conclusions: </strong>The findings suggest that Chinese dementia carers generally found iSupport to be valuable, providing valuable insights into how to tailor and enhance support for this population. However, further research is required to empirically validate the effectiveness of the adapted iSupport for Chinese dementia carers in New Zealand. These findings have implications for the development of future interventions that can more effectively address the specific needs of Chinese dementia carers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241272893"},"PeriodicalIF":0.0,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142482306","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":"What are the communication guidelines for people with dementia and their carers on the internet and are they evidence based? A systematic review.","authors":"Charlotte Harris, Rebeccah Webber, Gill Livingston, Suzanne Beeke","doi":"10.1177/14713012241292486","DOIUrl":"https://doi.org/10.1177/14713012241292486","url":null,"abstract":"<p><p><b>Introduction:</b> Communication difficulties of people with dementia can negatively impact well-being of them and their carers. There are evidence-based and clinically recommended strategies that can be used to support people with dementia which they are more likely to access on websites than via academic literature. We aimed to search the internet for communication advice for people with dementia and their carers, describe the strategies and compare these to the evidence-base.<b>Methods:</b> After a systematic search of websites offering communication advice to people with dementia and their carers, we described the strategies there, used reflexive thematic analysis to identify the rationale for recommended strategies and compared the strategies to the evidence base. We included websites aimed at people with dementia and their carers published by dementia-related health and social care, or third sector organisations. We compared strategies to those in published systematic reviews and practice guidance from UK health and social care agencies.<b>Results:</b> Our review identified 39 eligible websites, containing 164 individual strategies. These were grouped into 26 strategy types, with nine latent themes developed. These were supporting communication strengths, valuing the interaction, prioritising needs, providing emotional safety, working together, adapting communication for the situation, developing carer communication skills, knowing the individual and focusing on broader meaning.<b>Conclusion:</b> Our review highlights the need for flexible approaches to supporting communication for people with dementia which consider the individual's needs and preferences, the context of the interaction, and the priority in that moment. We identify the inherent challenges for carers in trying to interpret advice for their own needs.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241292486"},"PeriodicalIF":0.0,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142482263","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":"Navigating who I was and who I am online: How people with dementia use social media platforms to support identity.","authors":"Catherine V Talbot, Daisy Roe, Melissa Brunner","doi":"10.1177/14713012241292659","DOIUrl":"https://doi.org/10.1177/14713012241292659","url":null,"abstract":"<p><p>A diagnosis of dementia can have a powerful impact on identity, and social media platforms offer promising avenues for identity expression and reconciliation. Addressing limited research in this area, we used semi-structured interviews to explore how 10 people with dementia used social media to navigate their identity. Our thematic analysis produced four themes, showing how social media platforms afford unique opportunities for self-expression, visibility, and association, thereby empowering users to maintain their sense of self, challenge stereotypes, and foster community connections. Additionally, social media facilitated a multifaceted and holistic sense of identity beyond the confines of diagnosis. While there were concerns about online self-disclosure, sharing experiences of dementia had therapeutic benefits, aiding in acceptance and adjustment. Participants also leveraged social media to establish continuity between their pre- and post-diagnostic selves, providing a sense of stability amid uncertainty. With the increasing prevalence of social media use among people with dementia, proactive measures by healthcare professionals, policymakers, technology developers, and carers are required to cultivate online experiences that are safe, supportive, and inclusive of people with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241292659"},"PeriodicalIF":0.0,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142407306","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":"Exploring perceived helpfulness of health services in men and women with dementia and care partners: A cross-sectional analysis.","authors":"Geneviève Arsenault-Lapierre, Maria Alejandra Rodriguez Duarte, Laura Rojas-Rozo, Yun-Hee Jeon, Maud Hevink, Marta Ciułkowicz, Dorota Szczesniak, Greta Rait, Louise Robinson, Jane Wilcock, Marie Poole, Carrie McAiney, Shelley Doucet, Alison Luke, Amy E Reid, Isabelle Vedel","doi":"10.1177/14713012241289471","DOIUrl":"https://doi.org/10.1177/14713012241289471","url":null,"abstract":"<p><p><b>Introduction:</b> The aim of this study was to examine the association of sex/gender and other factors with the perceived helpfulness of the diagnostic process and post-diagnostic services by persons with dementia and care partners.<b>Methods:</b> We conducted secondary cross-sectional analysis of surveys from the 'Cognisance' project. Sex/gender and other factors (e.g., demographic variables, help seeking behaviours, healthcare professional consulted) of persons with dementia and care partners from four countries were considered. Main outcomes were perceived helpfulness of diagnostic process and post-diagnostic services. We conducted descriptive and multivariate analyses.<b>Results:</b> Compared to men, more women with dementia perceived post-diagnostic services as helpful though not statistically significant. Sex/gender was not associated with perceived helpfulness of diagnostic process and post-diagnostic services among care partners. Satisfaction with and awareness of services were associated with perceived helpfulness among care partners.<b>Discussion:</b> These findings underscore the necessity for sex/gender-based research to enhance dementia care and for tailored interventions.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241289471"},"PeriodicalIF":0.0,"publicationDate":"2024-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142395713","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}