Dementia (London, England)最新文献

{"title":"Implementing reablement for community dwelling people with dementia: A formative evaluation using single-case experimental design.","authors":"Alexis Campbell, Christopher J Poulos, Caroline Takla, Joy Allen, Kylie Lemsing, Claire Mc O'Connor","doi":"10.1177/14713012251323941","DOIUrl":"https://doi.org/10.1177/14713012251323941","url":null,"abstract":"<p><strong>Background: </strong>Reablement is recommended to maximise functioning in people with dementia, yet in Australia, is not routinely available. This study aimed to provide insight into the implementation and program outcomes of reablement in real-world practice for a person living with dementia.</p><p><strong>Methods: </strong>Reablement was implemented for a client with dementia. In parallel, a formative mixed-methods pilot evaluation was performed, using single-case experimental A-B-A design (<i>n</i> = 1), supplemented by routinely collected pre-post program clinical measures. Implementation was evaluated qualitatively via clinical notes for fidelity, feasibility and client engagement.</p><p><strong>Results: </strong>Single-case experimental design outcomes indicated the program positively impacted the participant's physical functioning. Additionally, most routinely collected pre-post clinical measures demonstrated improvement. Intervention fidelity varied, with differences in length and client engagement.</p><p><strong>Conclusion: </strong>Implementation of evidence-informed reablement has been shown to be feasible in real-world practice for a community-dwelling person living with dementia. Larger implementation trials are needed to build on preliminary outcomes to ultimately improve access to these important programs.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251323941"},"PeriodicalIF":0.0,"publicationDate":"2025-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143506490","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":"Effectiveness of an educational intervention on mealtime support needs for people with dementia in residential care facilities: A cluster-randomized controlled trial.","authors":"Lígia Passos, João Tavares, Melissa Batchelor, Daniela Figueiredo","doi":"10.1177/14713012251323658","DOIUrl":"https://doi.org/10.1177/14713012251323658","url":null,"abstract":"<p><strong>Background: </strong>People with dementia face numerous challenges during mealtimes, including difficulties with food intake, cutlery use, and maintaining attention. These can lead to severe consequences such as malnutrition and aspiration pneumonia, affecting the well-being of these individuals.</p><p><strong>Aim: </strong>To determine the effectiveness of an educational intervention in improving mealtime support needs and enhancing the well-being of both individuals with dementia and direct care workers.</p><p><strong>Methods: </strong>A cluster-randomized controlled trial was conducted in four residential care facilities. The study involved direct care workers and residents with dementia, with facilities randomly assigned to either an intervention or control group. The intervention comprised three weekly 2-hour training sessions, focusing on dementia-related mealtime challenges and practical support strategies. Data were collected at baseline and one-week post-intervention using questionnaires and observational tools to assess caregivers' skills, burnout levels, and job satisfaction, as well as residents' mealtime behavior and food intake.</p><p><strong>Results: </strong>Direct care workers from the intervention group showed significant improvements in knowledge (<i>p</i> < .001; d = 0.728) and skills (<i>p</i> < .001; d = 0.842) compared to the control group. Additionally, there were notable reductions in burnout levels (<i>p</i> = .001; d = 0.466) and higher job satisfaction (<i>p</i> = .003; d = 0.410). People with dementia in the intervention group demonstrated better performance at mealtimes.</p><p><strong>Conclusion: </strong>The educational intervention effectively enhanced direct care workers' abilities to support people with dementia during mealtimes, leading to better outcomes for both caregivers and residents. Implementing such training programs can improve care quality and alleviate challenges in dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251323658"},"PeriodicalIF":0.0,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143473375","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":"Characterizing diagnostic disclosure communication strategies and challenges in dementia care: A qualitative study of interprofessional clinicians across three systems.","authors":"Joanna Paladino, Heily Chavez Granados, Alissa Bernstein Sideman, Carine Davila, Liliana Ramirez Gomez, Elizabeth Lindenberger, Susan Block, Ana-Maria Vranceanu, Deborah Blacker, Dorene Rentz, Christine Ritchie","doi":"10.1177/14713012251321569","DOIUrl":"https://doi.org/10.1177/14713012251321569","url":null,"abstract":"<p><p><b>Background:</b> Diagnostic disclosure communication in dementia care proves challenging for clinicians and inadequately addresses patient and caregiver needs. We characterized clinician communication strategies and challenges for diagnostic disclosure conversations as an initial step in developing a structured communication intervention. <b>Methods:</b> Thematic analysis of semi-structured interviews with 23 clinicians across three academic medical centers in neurology, geriatrics, geriatric psychiatry, neuropsychology, and primary care. <b>Findings:</b> Communicating a dementia diagnosis, because of its gravity, requires incremental communication strategies organized in the following domains. First, building and maintaining strong relationships with patients and caregivers by establishing rapport and emotional connection builds trust and creates a sense of partnership. Second, assessing illness awareness and establishing readiness to discuss diagnosis occurs over multiple visits. This involves creating psychological safety to discuss cognitive concerns, especially for individuals from racial and ethnic marginalized communities in which there is enhanced stigma. Third, clinicians tailor word choice for disclosure based on patient and caregiver needs and their own comfort. Fourth, clinicians are attuned to patient and caregiver emotions but feel varying levels of comfort responding to emotions. Fifth, approaches to sharing prognostic information include emphasis on individual variability and discussions of longer-term anticipated changes to function, although clinicians identified challenges with discussing prognosis due to uncertainty about rates of progression. Sixth, supporting hope and preparation in care planning supports patients and caregivers to adapt to the diagnosis and plan for future changes. Building relationships with caregivers and adapting communication for patients of different cultural backgrounds occurs throughout the process. Common challenges include: harm to the therapeutic relationship from 'abrupt' disclosures; limitations in patient ability to retain or accept diagnostic information; clinicians' challenges with their own emotions that arise with disclosure. <b>Conclusion:</b> A customized, structured communication framework and training for clinicians may enhance the quality of diagnostic disclosure conversations in dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251321569"},"PeriodicalIF":0.0,"publicationDate":"2025-02-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143451152","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":"Poetry interventions in Alzheimer's and dementia care: A scoping review.","authors":"Antonio Paniagua Guzman, Amy K Otto, Indira Galeeva, Sarah Jane Brown, Kristen Jacklin","doi":"10.1177/14713012251321022","DOIUrl":"https://doi.org/10.1177/14713012251321022","url":null,"abstract":"<p><p>Art-based interventions for people living with dementia have been successful in improving diverse areas of quality of life and care. Within the spectrum of art-based interventions, poetry has shown an impact on communication, socialization, and the regulation of behavioral outcomes. This scoping review aims to identifying and analyzing how and in what contexts poetry has been used as a form of therapy for people living with dementia and their caregivers. It also looks at the methodology, design, and outcomes. After screening 1106 articles across multiple databases, 23 underwent full-text review, and six were included in the final extraction. Inclusion criteria focused on people living with dementia aged 50+ and/or their family caregivers, encompassing any form of language-based poetry intervention (e.g., written, spoken word). Both completed and ongoing original research reporting intervention outcomes in peer-reviewed articles or certain types of grey literature were considered. The review covers literature published between 1993 and 2023. Additional details on the poetry interventions including collaboration, facilitation, duration, and underlying theory, were also extracted. The findings highlight the effectiveness of poetry interventions for people living with dementia and their caregivers as person-centered activities fostering personhood and social connectedness. Particularly spoken-word poetry-based programs showed positive impacts on participants' self-expression, personhood, and agency. Two main barriers for wider dissemination were identified. First, methodology and outcome reporting conventions in some extracted studies diverge from broader biomedical/health and social science norms. Second, study design and data analysis are not reported in ways that evidence of programs' impact can be assessed and supported. Additionally, there is a lack of literature focused on the development and implementation of poetry-based intervention programs aimed at serving under-represented and minority populations. Recommendations for future projects include multidisciplinary collaborations, diversifying methodological approaches, and attention to cross-cultural approaches to program development and implementation.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251321022"},"PeriodicalIF":0.0,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143442846","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":"Telephone and online support programs and assistive technologies that support informal carers of people living with young-onset dementia: A systematic review.","authors":"Wendy Moyle, Melinda Spencer, Meiling Qi, Na Li, Lihui Pu","doi":"10.1177/14713012251321558","DOIUrl":"https://doi.org/10.1177/14713012251321558","url":null,"abstract":"<p><p><b>Objective:</b> Carers of people with young-onset dementia can be challenged by the care they provide. Little is known about the types of telephone and online support programs and assistive technologies that may help to assist them with caregiving. This review aimed to identify telephone and online support programs and assistive technologies that informal carers find useful for caring for people with young-onset dementia. <b>Design:</b> A systematic review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. An electronic search of the following five English databases was conducted: PubMed, PsycINFO, CINAHL, Web of Science, and Embase. In addition, the reference lists of eligible studies were manually searched to identify further studies. Databases were searched using synonyms and derivates for \"dementia,\" \"Alzheimer's disease,\" \"young onset\", \"early onset\", \"caregiver\", \"online\" and \"technology\". <b>Results:</b> We found 12 manuscripts that meet the study inclusion criteria. The dominant technologies were telephone and online support programs. Other assistive technologies included safety and monitoring support, telehealth, and a simple TV remote control. While carers reported positive effects of the telephone and online support programs, and technologies, such as improved self-efficacy, satisfaction, knowledge, well-being, and reduced burden, stress, depression, and anxiety, the studies were scarce, and a limited number of assistive technologies were explored. <b>Conclusion:</b> Given the increasing number of telephone and online programs and assistive technologies, it is disappointing to find a paucity of available manuscripts and the limited number of technologies explored for this population. Technologies to assist this population need to be developed and evaluated.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251321558"},"PeriodicalIF":0.0,"publicationDate":"2025-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143426755","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 context, mechanisms and outcomes of intergenerational programmes involving people living with dementia in scotland: A realist, qualitative study.","authors":"Heather Emond, Fiona Kelly","doi":"10.1177/14713012251317767","DOIUrl":"https://doi.org/10.1177/14713012251317767","url":null,"abstract":"<p><p>Intergenerational programmes, involving activity-based interventions designed to promote mutually beneficial interactions between participants, have been used in Scotland and further afield as a means of generating social inclusion between different age groups. There is growing interest in the potential outcomes of intergenerational programmes for people living with dementia in particular, with policy in Scotland recognising that people living with dementia and their carers may be at greater risk of loneliness and social isolation. Given this interest, there is a need to explore what 'intergenerational best practice' may look like for people living with dementia. Using data from semi-structured interviews with thirteen stakeholders involved in intergenerational practice and/or dementia policymaking, this study explored the contextual factors, mechanisms, and outcomes of intergenerational programmes in the Scottish context. Stakeholders perceived the concerns of carers, perceptions of risk, along with inaccessible venues and transportation to be important contextual factors. Mechanisms that helped ensure programmes offered full and appropriate participation opportunities included ongoing, flexible programme planning; the provision of purpose and roles; and the use of older participants' preferences, lived experience, and personhood. Overall intergenerational programmes were perceived to have the potential to promote beneficial outcomes for older participants living with dementia in Scotland.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251317767"},"PeriodicalIF":0.0,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143415871","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":"Fire risk and safety for people living with dementia at home: A narrative review of international literature and case study of fire and rescue services in England.","authors":"Tiffeny James, Andrew Clark","doi":"10.1177/14713012251320251","DOIUrl":"https://doi.org/10.1177/14713012251320251","url":null,"abstract":"<p><p><b>Background:</b> Most people living with dementia prefer to continue living at home. However, as dementia progresses, people may become more susceptible to risk including cooking accidents that can lead to fire. This is a common concern cited by people living with dementia, family carers, and healthcare professionals, but research in this area is lacking. <b>Methods:</b> To identify initiatives, interventions, and guidance around fire safety for people living with dementia at home, first we conducted a narrative review of international literature. Next, we used England as a case study by searching all English fire and rescue services websites. We also sent Freedom of Information requests to all services to explore what information is held about fire incidents involving people living with dementia in England. <b>Findings:</b> Eight peer-reviewed articles were eligible for inclusion. Existing literature suggests that assistive technologies such as stove shut-off devices can be difficult for people living with dementia to use and cause additional problems and risks. All English fire services offer 'Home Fire Safety Visits', designed to help those vulnerable to fire identify and reduce risk at home however, only four specify that people living with dementia are eligible. Eleven services and two UK dementia charities have produced fire safety guidance for people living with dementia in England. Dementia awareness training in one fire service increased support offered to people living with dementia including provision of assistive technologies. Fire services in England do not record dementia status routinely and methodological issues mean that available data is unlikely to be accurate. <b>Conclusions:</b> There is scope for developing standardised dementia fire safety guidance and awareness training. Further research is needed to explore what types of assistive technologies people affected by dementia want and would find acceptable. We conclude with suggestions for fire safety policy, practice, and future research for England and internationally.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251320251"},"PeriodicalIF":0.0,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143415863","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":"True inner self or fantasies and fabulation? Discourses on gender identity, sexuality, and LGBTQ among care workers in Swedish dementia care.","authors":"Linn J Sandberg, Anna Siverskog","doi":"10.1177/14713012251319821","DOIUrl":"https://doi.org/10.1177/14713012251319821","url":null,"abstract":"<p><p>Lesbian, gay, bisexual, trans and queer (LGBTQ) people make up a considerable proportion of those in need of formal dementia care. Yet sexuality and gender identity have received little attention in dementia care research. Using a discursive approach, this article explores how dementia care workers discuss and reflect on dementia, gender identity, sexuality and caring for LGBTQ people with dementia. The article is based on a focus group study with dementia care workers in Sweden, primarily nurses and nurse assistants. The findings point to pervasive heteronormativity in everyday care practice; non-normative sexualities and gender nonconformity were primarily deemed invisible but also sometimes questioned as \"fabulations\" or \"fantasies\". The invisibility of LGBTQ people was discursively framed as a result of generational belonging: people with dementia belonged to generations who were assumed to be closeted. Gender identity and sexuality were also framed as sensitive issues that were difficult to address with people with cognitive conditions. Dementia was understood as bringing out the true sexual or gendered self, but also as causing confusion and inauthentic expressions of gender and sexuality. In conclusion, existing discursive framings locate problems of heteronormativity outside of care practice and risk leading to inaction; more direct challenges to heteronormativity are needed in dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251319821"},"PeriodicalIF":0.0,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143411931","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":"Music in Mind Training: Producing a theory of change model to evaluate the implementation of an improvisation-based music-making training programme for care home staff working with people with dementia.","authors":"Dougal Henry James McPherson, Robyn Dowlen, Caroline Bithell, Alexander Gagatsis, Alys Young, Lizzie Hoskin, Max Thomas, Cathy Riley, John Keady","doi":"10.1177/14713012251319589","DOIUrl":"https://doi.org/10.1177/14713012251319589","url":null,"abstract":"<p><strong>Background: </strong>In the UK, care home staff are often involved in musical practices as part of their professional activities. However, to date there is a lack of relational evidence that underpins improvisational music-making programmes in care homes, as related to the wellbeing of care home staff and musicians who deliver such work. This process evaluation accesses Manchester Camerata's 20-week 'Music in Mind Training' programme for care home staff working with people living with dementia in care homes, with a focus on care home staff.</p><p><strong>Aims: </strong>(i) To produce a Theory of Change model outlining the core mechanisms of change for Music in Mind Training; (ii) To evaluate the 'in-the-moment' and prospective impact of Music in Mind Training on participating care home staff practice and wellbeing.</p><p><strong>Methods: </strong>Conducted in two care homes, the study employed online observation of hour-long training sessions (<i>n</i> = 18), semi structured interviews with participating staff and musicians (<i>n</i> = 4), and oral histories interviews with stakeholders involved in programme development (<i>n</i> = 18).</p><p><strong>Findings: </strong>Participating care home staff reported a general increase in their motivation, wellbeing, and confidence through taking part in the training programme, while indicating a drop in confidence related to future delivery at the programme end. The study also indicated how care home staff implemented change to their day-to-day practice by incorporating their learning into interactions with residents in structured music sessions, and more broadly in daily interactions.</p><p><strong>Conclusion: </strong>The presented Theory of Change model details core interpersonal mechanisms of change for this musical training programme, centred on (1) collaboration, (2) shared values, (3) respect and validation, and (4) openness and reflection, outlining pathways for impact regarding practice change and staff wellbeing. Subject to further refinement and testing, the model could be applied to other contexts to help provide a more rounded account of education and training in dementia care settings.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251319589"},"PeriodicalIF":0.0,"publicationDate":"2025-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143400836","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":"Metaphor as methodology: Methodological reflections on visualizing the dementia journey.","authors":"Elaine C Wiersma, Sherry L Dupuis, Pauline Sameshima, Philip Caffery, David Harvey","doi":"10.1177/14713012241295954","DOIUrl":"10.1177/14713012241295954","url":null,"abstract":"<p><p>Metaphors to describe and understand dementia have been used in Western culture for many years. However, the ways in which people living with dementia and care partners use metaphors and symbols to illustrate and give meaning to their own experiences has been less understood. In this paper we explore the use of metaphor as methodology-- a way to support people living with dementia and their care partners in reflecting on and sharing their experiences of dementia. More specifically, drawing on our experiences using metaphor and symbols to map out the dementia journey from the perspectives of people living with dementia, care partners, and health and social care providers in Ontario, Canada, we describe our process of employing metaphor as methodology. We reflect on the use of metaphor as methodology through framing the dementia experience, exploring complexity, and representing multidimensionality. The use of metaphors has the potential to open space for new understandings of dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"193-213"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11780962/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142775403","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}