Dementia (London, England)最新文献

{"title":"An ethnography of mealtime care for people living with dementia in care homes.","authors":"James Faraday, Clare Abley, Joanne M Patterson, Catherine Exley","doi":"10.1177/14713012241234160","DOIUrl":"10.1177/14713012241234160","url":null,"abstract":"<p><p>Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to explore current practice in mealtime care for this population, identify good practice, and understand the factors influencing mealtime care. Approximately 28 h of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care staff and residents living with dementia. Twenty-five semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. A constant comparative approach was taken, to probe emergent findings and explore topics in greater depth. Key thematic categories were identified, including: tensions in mealtime care; the symbolic nature of mealtime care; navigating tensions via a person-centred approach; contextual constraints on mealtime care; and teamwork in mealtime care. The findings indicated that a person-centred approach helps carers to find the right balance between apparently competing priorities, and teamwork is instrumental in overcoming contextual constraints. This evidence has contributed to development of a training intervention for care home staff. Future research should investigate the feasibility of mealtime care training in care homes.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"907-926"},"PeriodicalIF":0.0,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11290025/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139914210","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":"Care needs of people with dementia in Tanzania and associated impact on carers: A cross-sectional, observational study.","authors":"May Alice Galbraith-Olive, Ssenku Safic, Lawtiko Mwaipopo, Alex Ernest, William Keith Gray, Sarah Urasa, Catherine Dotchin, Emily Fisher, Aimee Spector, Richard Walker","doi":"10.1177/14713012241262570","DOIUrl":"10.1177/14713012241262570","url":null,"abstract":"<p><p><b>Objectives</b>: This study aimed to understand the care needs, care arrangements and burden of care for people with dementia in Northern Tanzania. <b>Methods</b>: This was a cross-sectional, observational study. People with dementia and their carers (<i>n</i> = 53) were recruited from an outpatient clinic, and data on carer burden and independence in activities of daily living were collected. Associations with carer burden and characteristics were explored through non-parametric tests and regression analyses. <b>Results</b>: Thirty-six carers were female (68%). Levels of impairment in instrumental activities of daily living were high, with a median score of 38 out of 44 on the Identification and Intervention for Dementia in Elderly Africans - Instrumental Activities of Daily Living (IDEA-IADL). Carer burden was moderate with a median Zarit Burden Interview (ZBI) score of 46 out of 88. Being a female carer was associated with higher carer burden (odds ratio 3.68, 95% CI 1.04-12.99). <b>Discussion</b>: Carer burden was found to be higher than in previous studies based in low-and-middle income countries. Further research is needed to explore this difference, and to identify interventions to support care needs and reduce carer burden.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1021-1035"},"PeriodicalIF":0.0,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141422076","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":"How are nature-based interventions defined in mild cognitive impairment and dementia studies? A conceptual systematic review and novel taxonomy.","authors":"Harmony Jiang, Gill Eaglestone, Paul McCrone, Catherine Carr, Charlotte Stoner","doi":"10.1177/14713012241261788","DOIUrl":"https://doi.org/10.1177/14713012241261788","url":null,"abstract":"<p><strong>Objectives: </strong>To systematically review research testing nature-based interventions for people living with mild cognitive impairment or dementia, and to report how authors have defined their interventions by presenting a taxonomy of the nature-based interventions.</p><p><strong>Methods: </strong>A conceptual systematic review of research published between 2008 and 2024 investigating nature-based interventions for people living with mild cognitive impairment or dementia was conducted. Three reviewers contributed independently. Exclusion criteria: not specifying if participants had mild cognitive impairment or dementia, only recruiting caregivers, no primary data, study protocols, abstracts, reviews, not peer-reviewed journal articles and any other grey literature. Intervention descriptions within the papers were thematically analysed.</p><p><strong>Results: </strong>Fifty-two articles reporting fifty-one studies were included. The most common interventions were nature virtual reality (VR technology) and gardening. From the definition data, we produced a taxonomy with overarching domains of: (a) Other terms used; (b) Characteristics; (c) Activities. Subdomains included: development or approach, modes of action, location, physical features, and activities. Some interventions could be grouped. Structure and standardisation of the interventions varied, with a lack of clear reporting.</p><p><strong>Conclusion: </strong>This taxonomy provides conceptualisations of nature-based interventions that can be used by future researchers to guide the development, evaluation and reporting of robust interventions in this area.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241261788"},"PeriodicalIF":0.0,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141763028","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 caring for someone with dementia and a learning disability: A qualitative systematic review.","authors":"Michelle Hughes, Kerry Hanna, Akpevwoghene Wiles, Ellie Taylor, Clarissa Giebel","doi":"10.1177/14713012231225797","DOIUrl":"10.1177/14713012231225797","url":null,"abstract":"<p><strong>Background: </strong>The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia.</p><p><strong>Methods: </strong>Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review.</p><p><strong>Results: </strong>Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: <i>Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role</i>.</p><p><strong>Conclusion: </strong>There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"817-849"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163849/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139089574","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":"Reflections on co-production: Developing a dementia research funding application with a diverse lived experience group.","authors":"Sarah Griffiths, Martin Robertson, Chandrika Kaviraj, Firoza Davies, Marie McDevitt, Al Richards, Marcelline Russell","doi":"10.1177/14713012241231916","DOIUrl":"10.1177/14713012241231916","url":null,"abstract":"<p><p><b>Introduction and Background to Study:</b> Published work on dementia research co-production focuses on developing health and social care interventions. Less is written about practicalities and experiences of co-producing dementia research funding applications. UK public contributors are typically from white middle class populations. Widening involvement is essential for co-produced research that meaningfully addresses health inequalities. We provide an example of a diverse lived experience group co-producing a dementia research funding application. An NIHR Dementia Career Development award funded PPIE work to develop a broad research idea. A culturally diverse lived experience group consisted of one person living with dementia, four carers and one former carer. Virtual group sessions drew on each person's unique experiences and expertise. Two co-leads collaborated closely with the researcher. <b>Methods:</b> We reflected on our experiences of diversity and inclusion within the group, based on a coproduced set of questions to guide reflection. Written records of reflections were captured and refined by the group. <b>Results:</b> We structured reflections into three overarching categories: Diversity and inclusion, Benefits to group members and Challenges. The group felt empowered, heard, and like equals in the process. Members valued diversity and mutual learning within the group. Involvement of co-leads was seen as democratic and inclusive. Some members felt Equality, Diversity and Inclusion (EDI) discussions were challenging. <b>Discussion and Conclusions:</b> We share valuable lessons learned in the process, including suggestions for facilitating EDI discussions, building in funding for time and travel to support relationship building, and ensuring PPIE remuneration processes are accessible and streamlined.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"709-723"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163838/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139698952","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":"Life story templates in dementia care: Ambiguous direction and purpose.","authors":"Glenn Möllergren, Tove Harnett","doi":"10.1177/14713012231224545","DOIUrl":"10.1177/14713012231224545","url":null,"abstract":"<p><strong>Background: </strong>The use of life stories in dementia care has been described as a way of seeing every person as an individual, looking beyond their dementia. Life stories have become synonymous with high-quality care, while in Sweden their mere existence in dementia care settings is taken to indicate quality in national comparisons. Such life stories are often standardised, generated by a family member answering predetermined questions in a template.</p><p><strong>Aim and methods: </strong>Using a constructionist approach, this study will (1) chart what versions of a person's life story the templates produce, and (2) establish the intended purpose of such life stories, as communicated by the templates. This study departs from the assumption that life story templates communicate something about the conceptions of people living with dementia. The thematic analysis used data comprising 30 blank templates, totalling about 1,700 questions.</p><p><strong>Findings: </strong>The life story templates were found to generate two very different versions of the individual: (1) a person before symptoms of dementia or (2) a patient <i>with</i> dementia. We also found contradictions about what information should be included, whose life story it was, and the intended use.</p><p><strong>Discussion: </strong>Despite strong pressure on dementia care providers to collect life stories from residents, the life story templates they use are without clear direction, ideology, or purpose. The lack of direction is key given that life stories can be considered actants that shape assumptions about people with dementia and construct realities in dementia care settings. We highlight the need to develop ethical guidelines for life story template design, matched with guidelines for their intended use.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"741-756"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163841/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139089573","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":"Assessment of dementia knowledge in Indian speech-language pathology students.","authors":"Pooja Chandrashekar, Hema Nagaraj","doi":"10.1177/14713012241231145","DOIUrl":"10.1177/14713012241231145","url":null,"abstract":"<p><strong>Objectives: </strong>Speech-language pathologists (SLPs) have a crucial role in assisting individuals with dementia due to the communication and swallowing challenges associated with the disease. As the number of dementia cases rises in India at an increasing rate, investigating the level of dementia knowledge of SLP students can offer insight into the preparedness of the healthcare system to meet this emerging demand.</p><p><strong>Method: </strong>A cross-sectional survey was conducted on SLP students pursuing their final year undergraduate, postgraduate and doctoral degrees from four universities across India. Dementia knowledge was assessed using the Dementia Knowledge Assessment Scale (DKAS) and information about previous dementia exposure (both formal and informal) was collected. The collected data were analysed using quantitative methods.</p><p><strong>Results: </strong>A total of 220 students (64.70% response rate) completed the survey. Overall dementia knowledge was inadequate with an average score of 22.08 ± 10.06. Previous dementia exposure among the students was also found to be low and did not affect dementia knowledge scores.</p><p><strong>Discussion: </strong>Despite the fundamental role SLPs play in the care of individuals with dementia, the lack of knowledge in this area emphasizes the need for enhancing dementia training programs through educational curricula and clinical placements.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"800-816"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139652315","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":"Sources and perceptions of hope: A qualitative study involving younger people with dementia.","authors":"Jane Pritchard, Ruth Bartlett","doi":"10.1177/14713012241247460","DOIUrl":"10.1177/14713012241247460","url":null,"abstract":"<p><p>Hope is an important but overlooked phenomenon in dementia studies. Few studies have examined how people with dementia experience or perceive hope, possibly because it is seen as a diagnosis without hope. In this article, we report on a doctoral study, the aim of which was to examine the phenomenon of hope from the perspective of younger people with dementia to generate new understanding and enable community-based healthcare professionals to support well-being. The study was conducted in the Midlands, England, and used a modified diary-interview method. Six participants were given a camera and asked to take pictures of whatever made them feel hopeful. During a post-diary semi-structured interview, a conversation about hope took place. Interviews were transcribed and interpreted using the 'Voice-Centred Relational Method'. Findings show that hope is important to younger people with dementia. Sources of hope were the surrounding environment, keeping connected, taking action, and drawing on internal resources. An over-arching theme was 'defying dementia' and participants demonstrated resistance to negative stereotypes. Living with dementia did not curtail hope, although it could be weakened when participants felt 'cast adrift' by services. The In vivo codes generated were fear of dementia, threats to identity, disconnection from others, and frustrations and restrictions. It is concluded that hope should be a more central part of practice-based conversations with people with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"757-778"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140872388","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":"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":"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}