Dementia (London, England)最新文献

{"title":"Real-world occupational therapy interventions for early-stage dementia: Characteristics and contextual barriers.","authors":"Bethan M Edwards, Monica Busse, Teena J Clouston, Ben Hannigan","doi":"10.1177/14713012241272815","DOIUrl":"10.1177/14713012241272815","url":null,"abstract":"<p><p>AimThere is an absence of evidence generated in a UK context to support interventions based on occupational therapists' core skills for people living with early-stage dementia. To inform the development of a programme theory and a future evaluation, this paper aimed to describe real-world (routine) community-based occupational therapy interventions for this population and contextual barriers.MethodOccupational therapy practitioners (<i>n</i> = 21) from five Health Boards in Wales, UK participated in semi-structured interviews (<i>n</i> = 17) which were audio recorded, transcribed, and analysed thematically.FindingsThe availability of, and access to, real-world community-based interventions was variable, and associated with multilevel contextual barriers (resources, understanding of dementia specialist occupational therapy, professional influence, and evidence base). Where available and accessible, contents comprised a pre-intervention component (relational work, assessment, and goal setting) and intervention component (personalised problem-solving and coping strategies, emotional support, and advice and signposting), to meet needs associated with everyday activities and poor wellbeing. Variation in mode, duration, contents, and who received interventions, was associated with contextual barriers.ConclusionFindings indicate that the development of an intervention programme theory and future evaluation design, will need to account for the impact context may have on the variability of real-world intervention characteristics, and how this in turn may influence outcomes.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"388-407"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11915762/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142006022","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":"Unlocking the benefits of montessori-based reading activities in nursing home: A multiple baseline study on groups of individuals with severe dementia.","authors":"Cécile Bourgeois, Emmanuelle Brigaud, Ella Louis, Lynda Azzoune, Marie Gambonnet, Valérie Vitou, Claude Jeandel, Jérôme Erkes, Sophie Bayard","doi":"10.1177/14713012241270805","DOIUrl":"10.1177/14713012241270805","url":null,"abstract":"<p><p>ObjectiveGroup activities are commonly offered to residents of nursing homes, and increasingly with a person-centred care approach. The aim of this study is to compare the impacts of a Montessori-based reading activity with a more traditional reading activity.MethodA multiple baseline design was used, with 3 groups of 5 older adults with moderate to severe dementia. All sessions were videorecorded and analysed by independent judges, blinded to our hypotheses and conditions. Impacts of the type of activity (storytelling or Montessori-based reading) on verbal interactions, engagement level, affect and behavioural aspects were estimated with both visual analyses and statistical analyses using the between-case standardised mean differences method.ResultsSignificant differences were found in favour of the Montessori-based activities with regard to the number of verbal interactions, constructive and passive engagement and positive affect expressed, with moderate to large effect size (from 0.46 to 1.66).ConclusionThe Montessori-based reading group activity really seems to be preferable to a more traditional storytelling activity, with multiple benefits for residents. Depending on the preserved abilities and interests of the participants, it can also be aimed at people with severe dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"436-455"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894932","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":"10.1177/14713012241261788","url":null,"abstract":"<p><p>ObjectivesTo 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.MethodsA 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.ResultsFifty-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.ConclusionThis 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":"480-505"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11915771/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141763028","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":"My experience of person-centered and personalized care in early-stage primary progressive aphasia.","authors":"Joanne T Douglas","doi":"10.1177/14713012241281006","DOIUrl":"10.1177/14713012241281006","url":null,"abstract":"<p><p>Primary progressive aphasia (PPA) is a neurodegenerative brain disorder characterized by declining language ability. It is a rare, often young-onset dementia with a devastating impact on the work and personal activities of those affected. At present there is no cure or disease-modifying therapy for PPA nor any way to arrest or slow the underlying progressive brain degeneration. Throughout the course of the condition any treatment must therefore be palliative-designed to manage symptoms and improve the quality of life of the affected person. The majority of those affected receive little or no follow-up care after diagnosis, particularly in the early stage of the disease. There is very little information in the medical literature about person-centered care designed to improve the quality of life of people with PPA written from the perspective of those living with this condition. I received an early and accurate clinical diagnosis of the nonfluent/agrammatic variant of PPA, supported by imaging. I am fortunate to have benefited from exemplary individualized care from a multidisciplinary medical team from the onset of my difficulties with language. In this paper, I discuss my lived experience of all aspects of this personalized and person-centered care, describing how it was founded on shared decision-making and a holistic, dementia-inclusive approach encompassing the physical, mental, emotional, psychosocial and spiritual dimensions of living with an incurable neurodegenerative disease.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"353-367"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142115598","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":"Evolving dementia care: An explorative study on the lived experience of older adults living with dementia in nursing homes using observational and biometric sensor data.","authors":"Jhw Coosje Hammink, Lpg Leonie van Buuren, Ja Nienke Moor, Daja Daantje Derks, M Masi Mohammadi","doi":"10.1177/14713012241301474","DOIUrl":"10.1177/14713012241301474","url":null,"abstract":"<p><p>IntroductionThis study explores the lived experiences of older adults with dementia in Dutch nursing homes, focusing on daily activities and emotional responses. With a growing number of older adults with dementia, gaining a deeper understanding of their lived experience is imperative.MethodsUsing a mixed-method narrative approach involving observations, informal interviews, and physiological monitoring through wearable sensors, the study engaged eight participants in psychogeriatric wards across two Dutch nursing homes. Observations and interviews aimed to provide context to daily activities, while wearable sensors tracked emotional responses through heart rate (HR) and heart rate variability (HRV).ResultsKey activities included eating, drinking, communication, mobility, and inactivity. Positive experiences were consistently observed during eating and drinking and communication, respectively influenced by the nursing home's social and organizational structures and social and personal contexts. In contrast, mobility and inactivity exhibited diverse physiological responses, reflecting a range of stress, concentration, or relaxation.Conclusion & DiscussionThis study offers valuable insights into the lived experiences of older adults with dementia in nursing homes. It highlights the generally positive nature of eating and drinking, shaped by social and organizational factors. Communication's impact varies with individual context. The study also reveals a complex interplay of emotions during activities related to mobility and inactivity, as evidenced by diverse physiological responses. Regarding implications for dementia care, the study emphasizes the need to redefine 'inactivity' as 'under-stimulation,' assess appropriate (in)activity levels, and acknowledge the significance of the nursing home's physical and organizational context. This redefinition should distinguish between 'physical' and 'mental' inactivity, address concerns related to under-stimulation, and cater to individual preferences. Recognizing the residents' restricted environment and reliance on care professionals and volunteers underscores the urgency of tailored approaches. Addressing these implications can provide fresh perspectives for evolving dementia care, creating a more supportive environment that promotes well-being.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"456-479"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142666705","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 the role of agency in the navigation of regional dementia care and support service pathways.","authors":"Carmela Leone, Rachel Winterton, Marita Chisholm, Irene Blackberry","doi":"10.1177/14713012241281620","DOIUrl":"10.1177/14713012241281620","url":null,"abstract":"<p><p><b>Introduction:</b> Reliable dementia care and support service pathways are essential for timely diagnoses and for reducing the delay in time from diagnosis to care and support. However, carers commonly experience difficulties in finding information about where to go and what to do before and following a dementia diagnosis. In rural and regional areas, accessing dementia care and support services can be especially challenging. This qualitative, narrative inquiry study explores the agency of carers, and people living with dementia, in their navigation of regional dementia care and support service pathways.<b>Methods:</b> Semi-structured interviews were conducted with ten carers of people living with dementia from a regional location in Victoria, Australia. Data analysis was guided by the tripartite framework of Giddens' Theory of Structuration which considered the carers' intentionality, capacity and power to act in the navigation of their dementia care and support service pathways. <b>Findings:</b> Carers had intentionality; however, they did not always have the capacity and power to act. Information played a critical role in facilitating agency. Health literacy was important - as knowledge about where to look for/find information, and knowledge gained through experience, education or learning from others. Where carers encountered barriers, they lacked capacity and power. This occurred where there was an absence of information or knowledge, incorrect information (e.g. misdiagnoses), and where government bodies impeded carers' efforts.<b>Conclusions:</b> Information and knowledge are critical to the progression of dementia care and support service pathways. Health literacy is a significant resource, and carers would benefit from dementia education/training. The agency of carers in navigating their dementia care and support service pathways relies on carers themselves finding information and seeking out knowledge and education. However, GPs, local health providers, and dementia organisations have an important role to play in helping carers to find information towards accessing dementia care and support services.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"368-387"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11915774/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142156834","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":"Exploring the use of digital media to support meaningful activities for people living with dementia: A qualitative study.","authors":"Mariana Ramalhete, Rita Maldonado Branco, Soraia Teles, Oksana Tymoshchuk, Rita Oliveira, Joana Quental, Oscar Ribeiro","doi":"10.1177/14713012251330689","DOIUrl":"https://doi.org/10.1177/14713012251330689","url":null,"abstract":"<p><p>Dementia is a progressive and neurodegenerative condition that leads to a gradual deterioration of the individual's functional capacity and social relations. Engaging in meaningful activities is considered an effective approach to maintaining and increasing the well-being of people living with dementia. Digital media has the potential to improve the quality of life for people living with dementia, allowing them to engage in activities that are personally meaningful. This study sought to understand the needs and preferences people with early-stage dementia living in Portugal have for receiving information on meaningful activities. It also explored their relationship with technologies and digital media. Focus groups and interviews were carried out with people living with dementia (<i>n</i> = 21), informal carers (<i>n</i> = 9) and healthcare professionals (<i>n</i> = 8). Descriptive statistics were used for sample characterization and the <i>verbatim</i> transcriptions of interviews and focus groups were subjected to inductive thematic analysis. We developed three main themes: (i) engagement of people living with dementia in meaningful activities; (ii) experiences of people living with dementia with technology and digital resources; and (iii) the importance of a support network. This last theme is associated with the first two. The study identified several meaningful activities, such as household chores and intellectual hobbies, some of which were mediated by technology. People living with dementia reported to primarily use digital media, particularly computers and smartphones, for socialization and entertainment. The barriers identified for technology use and engagement in meaningful activities were both related to mobility problems and cognitive complaints. The support network emerged as essential for the use of digital technologies and engagement in meaningful activities. This study highlights a need to further research and design digital media that offer the opportunity for people living with dementia to be informed and engaged in meaningful activities.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251330689"},"PeriodicalIF":0.0,"publicationDate":"2025-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143743994","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":"A 'personhood paradox': Care partners' experiences supporting people with dementia and incontinence.","authors":"Vanessa Burholt, Yasmin Orton, Sharon A Awatere, Julie F Daltrey","doi":"10.1177/14713012251329545","DOIUrl":"https://doi.org/10.1177/14713012251329545","url":null,"abstract":"<p><p>Globally, 50 million people live with dementia and mostly receive care at home. Urinary, faecal and functional incontinence is common in this population and increases care demands. This study explores care partners' experiences managing continence care for people with dementia in Aotearoa New Zealand. The data are drawn from a cross-sectional qualitative study with 18 care partners of people with dementia and incontinence in mid and northern regions of Aotearoa New Zealand. Participants were interviewed face-to-face from June 2022 to April 2023. Data were analysed using Interpretive Phenomenological Analysis. Six Generalised Experiential Themes emerged. Care partners engaged in autobiographical and biographical meaning-making to interpret behaviours and maintain the personhood of people with dementia, focusing on dignity, identity, and social inclusion. However, caregiving often undermined care partners' personhood due to the physical and emotional demands of continence care. Access to resources was challenging, and healthcare support was often perceived as inadequate. Some care partners' strategies to find meaning and joy in everyday life contributed to resilience, while others experienced stress, fatigue, and burnout. Care partners used personal knowledge to support personhood, especially in social engagement. Uncertainty in managing incontinence led to self-doubt, exacerbated by the medicalised nature of continence care, which involves intimate attention beyond typical caregiving. Timely, credible advice could reduce uncertainty, but many found seeking resources overwhelming. Balancing their own well-being with caregiving highlights the need for support systems addressing the requirements of both care partners and people with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251329545"},"PeriodicalIF":0.0,"publicationDate":"2025-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143674168","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":"Enhancing healthcare professionals' confidence in ethical decision-making when caring for people with dementia: A qualitative evaluation of the CARE intervention.","authors":"Frederik Schou-Juul, Tine Tjørnhøj-Thomsen, Sigurd Lauridsen","doi":"10.1177/14713012251327704","DOIUrl":"https://doi.org/10.1177/14713012251327704","url":null,"abstract":"<p><p><b>Aim(s):</b> To evaluate the impact of the CARE intervention on healthcare professionals' perceived confidence levels and understand the factors influencing confidence in ethical decision-making in dementia care. <b>Design:</b> Thematic analysis of post-intervention focus-group interviews. <b>Methods:</b> Twelve focus-group interviews were conducted post-intervention with nurses and other healthcare professionals providing direct caregiving for people with dementia in a Danish municipality. Braun and Clarke's framework guided thematic analysis, which assessed the participants' perceived influence of the CARE intervention on their confidence and gained insights into the factors perceived by participants as impacting confidence in ethical decision-making. <b>Results:</b> Analysis revealed five themes across two overarching domains: the perceived influence of the CARE intervention on healthcare professionals' confidence and factors impacting their confidence. While the intervention reinforced confidence for many, some reported no change due to pre-existing high confidence levels. Factors contributing to confidence included reassurance of ethical practice, peer dialogue, family interaction, and critical reflection, underscoring the importance of peer support and dialogue in bolstering ethical confidence in dementia care. <b>Conclusion:</b> This study presents findings on the CARE intervention's impact on enhancing healthcare professionals' confidence in ethical decision-making in dementia care and offers insights on the potential of peer interaction and support in bolstering ethical confidence.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251327704"},"PeriodicalIF":0.0,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626701","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 Co-design of the Dementia Lifestyle Intervention to get healthy together (DELIGHT) program: An authentic partnership approach.","authors":"Laura E Middleton, Lauren Bechard, William Heibein, Lloyd Schneider, Marg Shoemaker, Gail Roth, Cindy Wei, Melissa Koch, Heather Keller, Carrie McAiney","doi":"10.1177/14713012251325928","DOIUrl":"https://doi.org/10.1177/14713012251325928","url":null,"abstract":"<p><p>Improving supports to enhance wellbeing of people living with dementia is a priority. Engaging people living with dementia, care partners, and other stakeholders in development of interventions increases the likelihood they will be relevant and impactful. We describe the participatory approach used to co-design the Dementia Lifestyle Intervention for Getting Healthy Together (DELIGHT) program, which aims to promote the health and wellbeing of people living with dementia and care partners. The DELIGHT project was guided by a team of researchers, people living with dementia, care partners, and an Alzheimer Society representative. The co-design team included additional people living with dementia, care partners, exercise professionals, dietitians, health care professionals, and community service providers (<i>n</i> = 29). The co-design was planned for in-person but was transitioned to six online, 1.5-h sessions due to COVID-19 related restrictions. We used breakout rooms for discussion, with people living with dementia in each breakout room. Co-design meetings focused on identifying target population and outcomes and developing program components and structure. Two or three guiding questions focused discussion in each meeting. The final co-design session focused on the overall structure of the DELIGHT program. Program resources were iteratively designed with the research team, co-design team, and other external stakeholders. The result of the co-design process was the DELIGHT program, an 8-week, twice weekly program designed to promote living well with dementia for people living with dementia and care partners. Each session includes 50-60 minutes of exercise and 20-30 minutes of facilitated, shared learning with an associated resource. A healthy snack may be offered. Shared learning focuses on healthy eating, sleeping well, mental well-being, social connection, and physical activity. Our vision is that the co-designed DELIGHT program will promote the health and wellbeing of people living with dementia and care partners, increasing the likelihood of living well with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251325928"},"PeriodicalIF":0.0,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626786","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}