Dementia (London, England)最新文献

{"title":"'Everyone Needs a Hug': A Lifeworld-Led Approach to Recognise and Maintain the Person of Care Recipients Living With Advanced Dementia.","authors":"Jesper Bøgmose, Benjamin Olivares Bøgeskov, Tom Dening, Bente Martinsen","doi":"10.1177/14713012251388683","DOIUrl":"10.1177/14713012251388683","url":null,"abstract":"<p><p>A most crucial aspect in dementia care is recognising and maintaining the person behind the dementia condition. Yet, it has been found that caring for people living with advanced dementia risk becoming mere techniques and undervaluing the significance of inter-embodied relationships. This can lead to that the unique person of those receiving the care becomes overlooked and undermined. Research suggests how the care recipients' unique person fruitfully can be recognised via identifying humanising caring relations in their everyday lives. Thus, it is necessary to explore how formal caregivers engage in care that support people living with advanced dementia as human beings, which is the aim of this study. Following Galvin and Todres' existential lifeworld-led approach to care, the lived experience of formal caregivers' humanisation of their care recipients were explored through participant observations and semi-structured interviews at two nursing homes specialised in advanced dementia; both methods were granted ethical approval from a research ethics committee. Based on the lifeworld-led theory we found four ways within formal caregivers' experience to be able to humanise care recipients living with advanced dementia, which can be described as: The continuity of self, The touch of the world, The kindred understanding, and The invisible bond. We argue that it is not enough just replicating such caring ways in order to deliver humanisation in advanced dementia care, but require of the caregiver to engage in a genuine human relation with those for whom they care. Such engagement in recognising and supporting the intrinsic humanness of the care recipient can guide a more humanly sensitive care practice that recognises and maintains the unique person behind the advanced dementia condition.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1612-1627"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13569892/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145566101","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":"Findings From a Photovoice Project to Identify Services and Support for People Living With Young Onset Dementia and Their Families.","authors":"Vanessa Baxter, David Sheard, Victoria Jones, Jackie Crewe","doi":"10.1177/14713012251365470","DOIUrl":"10.1177/14713012251365470","url":null,"abstract":"<p><p>There is considerable variation in the provision of support and services for people living with young onset dementia in the UK. This study aimed to elicit the views of people living with young onset dementia and their families on what they want in the community, and identify gaps in support. The Photovoice approach was used to collect views from four groups of participants, over three sessions of each group. A total of four people living with young onset dementia and eight carers took part. People living with young onset dementia want to do a variety of activities, and these need to be age appropriate and \"normal\" things that they would have done prior to their diagnosis. Activities need to be flexible and fitted to the person rather than the person being fitted to the activity. A number of facilitators and barriers were identified. Carers' lives are now very different to what they had planned or envisaged for the future, and they value peer support. They need support to help understand information and navigate paperwork, systems and processes. The study provided insights based on lived experience into what people living with young onset dementia and their families want from support and services in the community.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1494-1511"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13569885/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144777052","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":"Principles and Strategies of Interviewing People with Advanced Dementia.","authors":"Tamara Backhouse, Anne Killett, Yun-Hee Jeon, Eneida Mioshi","doi":"10.1177/14713012251371349","DOIUrl":"10.1177/14713012251371349","url":null,"abstract":"<p><p>People with cognitive impairment such as those with dementia, particularly in the moderate or advanced stages, can be excluded from qualitative interview research. However, the value of people with dementia's participation in research is increasingly acknowledged. Adaptations to qualitative interview techniques for use with people with advanced dementia are underexplored. We draw on 13 semi-structured interviews undertaken with people with advanced dementia in family and care-home settings. We examine researcher intuitive adaptations to contextualise and clarify including the importance of member checking in the moment with direct, closed questions if need be; people with dementia 'coasting' and leading; as well as carers as conversation partners. We draw out learning points around creating safe interview interactions, and strategies to enhance meaning making. We present methodological learnings and considerations when interviewing people with advanced dementia likely to be instructive for other researchers. We suggest that the research topic needs to be relatable and multiple methods of meaning making should be considered. Our analysis contributes to the growing evidence base considering how to improve meaningful engagement with people with dementia in interviewing. We encourage other researchers to reflect on their interview interactions with people with dementia to further delineate successful components and inform future research practices.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1512-1529"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13569913/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980683","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":"Transformative Namaste Care: An Intervention Study Enhancing Quality of Life for People Living With Advanced Dementia.","authors":"Sara Karacsony, Sharon Andrews, Melissa Abela, Maryam Rouhi, Thi Thuy Ha Dinh","doi":"10.1177/14713012251389433","DOIUrl":"10.1177/14713012251389433","url":null,"abstract":"<p><p><b>Background:</b> Few interventions specifically address the psychosocial care needs of people living with advanced dementia nearing the end of life in residential aged care facilities (RACFs). This study evaluated the effects of enhanced sensory care -touch, taste, smell, and social interactions-using the Namaste Care™ program on quality of life over a 12-week intervention period. <b>Methods:</b> Quality of life and agitated behaviours were assessed using two validated instruments (QUALID and CMI), at weeks 2, 4 and 12. Changes in scores were analysed using linear mixed effect models. Observational data on activities and their effects on residents were documented by Namaste Carers in session logs and mapped to a coding matrix corresponding to QUALID categories. Data were triangulated to provide a comprehensive picture of the intervention's impact on residents' quality of life. <b>Results:</b> Seven out of thirty residents screened completed the 12-week intervention. QUALID and CMAI scores significantly improved at the endpoint compared to baseline measurements. Observational data revealed residents enjoying social interactions, appearing calm and comfortable with Namaste Care alleviating agitation. <b>Conclusion:</b> Improved scores on the QUALID and CMAI were achieved within the first two weeks of the intervention, underscoring how enhanced care activities can quickly and positively influence mood states and behaviours, thereby enhancing quality of life. This is particularly important for residents in the advanced stages of dementia including those in the end-of-life phase. Many eligible residents missed out on this beneficial program that has no known negative outcomes.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":"25 7","pages":"1628-1644"},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13569905/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148978691","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":"Caregiver Perspectives on Alzheimer's Care in the Turkish Sociocultural Context.","authors":"Hatice Reyhan Özgöbek, Zeynep Güldem Ökem, İlknur Yüksel-Kaptanoğlu, Sıdıka Kaya","doi":"10.1177/14713012261488608","DOIUrl":"https://doi.org/10.1177/14713012261488608","url":null,"abstract":"<p><p>In the context of global demographic change, the number of patients with Alzheimer's disease (AD) and other forms of dementia is steadily increasing. These individuals require ongoing care but often struggle to communicate their needs and preferences regarding quality care. This study re-examines existing qualitative data to explore perceptions of \"quality care\" for patients with AD within the Turkish sociocultural context. Building on a primary study of caregivers' definitions of quality care, it employs a secondary analysis approach to generate new insights without collecting additional data. The dataset includes face-to-face, semi-structured interviews conducted in 2018 with 15 formal and informal caregivers, including family members, professional caregivers, and managers from care institutions across four provinces in Türkiye. Analysis reveals that patients with AD often experience discomfort when their bodies are exposed or touched, particularly in ways that infringe upon their sense of privacy. Caregivers emphasised that protecting privacy relies on understanding the individual's life story, values, and preferences, highlighting the role of relational familiarity in delivering care. Many participants described forming close, family-like bonds, often adopting kinship roles to provide personalised support. These dynamics were also shaped by gender norms, with caregiving commonly framed through a mother-child lens, reflecting societal expectations that women assume primary caregiving responsibilities. The findings show how privacy, emotional closeness, and gender roles intersect to shape caregiving practices. These findings suggest that care quality for patients with AD in Türkiye may be enhanced by approaches that attend to cultural and relational dimensions, recognise caregiver support needs, and incorporate culturally attuned practices - though further research across diverse settings is needed to assess the broader applicability of these insights. These insights contribute to the international discourse on dementia care by showing how culturally specific practices can guide globally relevant approaches to quality care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012261488608"},"PeriodicalIF":2.2,"publicationDate":"2026-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149083023","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":"Digital Reminiscence-Based Interventions to Enhance Social Interaction of People With Dementia in Care Homes: A Scoping Review.","authors":"Michelle Heward, Aleksandra Szymanska, Shanti Farrington, Lee-Ann Fenge, Jane Murphy, Graham Brittain, Michael Clark, James McMahon, Sarah Thomas, Victoria Tweedy","doi":"10.1177/14713012261492094","DOIUrl":"https://doi.org/10.1177/14713012261492094","url":null,"abstract":"<p><p>The use of digital tools in reminiscence interventions has increased in recent years, encompassing multimedia platforms, virtual reality (VR), digital life storybooks, and interactive applications. Yet, evidence regarding the effectiveness of digital reminiscence-based interventions remains limited. This scoping review aimed to map and synthesise the existing evidence on digital reminiscence-based interventions in care homes, with a focus on: (i) their development and evaluation; (ii) the extent to which they address cultural diversity and inclusivity; (iii) the support provided to end users; and (iv) the barriers and facilitators influencing their implementation. A systematic search of five databases (MEDLINE Complete, CINAHL, PsycINFO, PubMed, Web of Science), and three grey literature sources (BASE, King's Fund Database, PsyArXiv) was undertaken. Reference lists of key papers were also hand-searched. Studies of all methodologies (qualitative, quantitative, and mixed methods) were included. Sixteen studies involving 365 participants met the inclusion criteria. Interventions were grouped into: (i) digital reminiscence, (ii) digital life story, and (iii) immersive VR. Reminiscence and life story interventions improved emotional wellbeing and social engagement, while VR mainly supported stimulation and mood. Stakeholder involvement in design of technology was limited, especially for people with dementia, and reporting on cultural diversity was minimal. Variation in intervention design and outcomes limited conclusions on overall effectiveness. Implementation facilitators were ability to personalise content, care provider/home manager support, staff engagement and training, and family involvement. Barriers included technology usability, organisational infrastructure and support, workforce knowledge and capacity, and difficulties integrating into routine care practices. Digital reminiscence generally improved wellbeing, mood, cognition, communication, social interaction, although findings were mixed and limited by small samples, and varied intervention designs and outcome measures. Future research should prioritise co-creation with people with dementia, families, and staff; include more diverse populations across the disease trajectory; and explore sustainable integration into routine care practice.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012261492094"},"PeriodicalIF":2.2,"publicationDate":"2026-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149042258","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 Benefits of Textiles in Facilitating Interactions for People With Dementia: An Exploration of Design Considerations and Recommendations.","authors":"Yushan Zou, Eddi Pianca, Nathan M D'Cunha","doi":"10.1177/14713012261492102","DOIUrl":"https://doi.org/10.1177/14713012261492102","url":null,"abstract":"<p><p>As the global population of people with dementia increases, the demand for best practice dementia care is growing. Textiles have the potential to assist with interacting with people with dementia and provide benefits in dementia care settings. However, there is currently limited understanding of, or experience with, the specific challenges, considerations and design of interactive textile products for people with moderate to advanced dementia. This exploratory qualitative study aimed to explore the perspectives of using interactive textiles with people with dementia. Seven sets of interactive textiles were tested for usability with nine people with dementia, followed by post-testing interviews. Additionally, semi-structured interviews were conducted with care partners and healthcare professionals to understand the effects of interactive textiles in two care settings. In total, 27 people were interviewed, including people with dementia (<i>n</i> = 9), informal care partners (<i>n</i> = 5), formal care partners/staff (<i>n</i> = 2), and healthcare professionals (<i>n</i> = 11), from a residential care home, a daycare centre, and a university located in southeastern Australia. The findings highlighted several benefits of interactive textiles, including assisting interactions, facilitating communication, providing sensory stimulation, supporting reminiscence, and promoting positive emotions such as reducing stress and anxiety. Participants suggest textiles can be used to provide engagement, describing the importance of forging connections between people with dementia and their past, bolstering familiar associations, emotional relations, and recognition of personal preferences. These insights informed design considerations and recommendations for creating interactive textiles that offer playful and meaningful activities for people with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012261492102"},"PeriodicalIF":2.2,"publicationDate":"2026-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149027088","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":"Feasibility of the DIGNITY Intervention to Support Person-Centered Risk Management in Rural Nursing Homes.","authors":"Liza L Behrens, Erin Kitt-Lewis, Kalei H Crimi, Caroline Madrigal, Allen R Kunselman, Terrence E Murphy, Jennifer L Kraschnewski, Kimberly S VanHaitsma, Marie Boltz","doi":"10.1177/14713012261485344","DOIUrl":"10.1177/14713012261485344","url":null,"abstract":"<p><p>Honoring individual preferences, like going outside, can enhance the health of nursing home (NH) residents living with Alzheimer's disease and related dementias (ADRD). Although a hallmark of person-centered care, honoring ADRD residents' preferences is often restricted when they are perceived to be high-risk for harm by NH staff. Accessible and efficient strategies are needed to help NH staff balance harmful risks to health and safety against the residents' right to make autonomous choices, especially in under-resourced rural areas. This pilot study (NCT05618678) evaluated the feasibility of Decision-making In aGing and demeNtIa for auTonomY (DIGNITY), a multi-faceted and innovative, theory-based, person-centered risk management intervention aimed at assisting NH staff in respecting the preferences of rural residents living with ADRD, while optimizing safety. Feasibility was assessed using retention rates, staff surveys, and qualitative feedback. Fifty-two NH staff participated (88.7% female, 83.3% White, 94.3% non-Hispanic, and 48% with ≥6 years NH experience), with a 79% retention rate and 87.8% survey response rate. In the DIGNITY group, average scores (on Likert scale of 1-5) indicated high feasibility (3.99), acceptability (4.19), and appropriateness (4.24). Qualitative feedback highlighted the value of in-person training and telemonitoring sessions. The high ratings for feasibility, acceptability, and appropriateness of DIGNITY show its potential for supporting NH staff to more confidently provide person-centered care for ADRD residents.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012261485344"},"PeriodicalIF":2.2,"publicationDate":"2026-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149027117","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":"\"Someone's Acknowledged My Mum…in that Moment she Connected\": A Qualitative Study of Family Benefits of Elder Clowning for Persons With Dementia in Long-Term Care.","authors":"Sara-Jane Roberts, Serra Ivynian, Tim Luckett, Michelle DiGiacomo","doi":"10.1177/14713012261487540","DOIUrl":"https://doi.org/10.1177/14713012261487540","url":null,"abstract":"<p><p>Elder clowning is a multi-component, person-centred intervention delivered to persons living with dementia in long-term care to enhance quality of life through individualised social engagement. Although persons with dementia are the target recipients of the intervention, their families may also derive benefits. However, their perspectives currently remain unexplored. This study aimed to explore whether and in what ways families of persons living with dementia in long-term care benefit from elder clowning interventions, from the perspectives of families and long-term care staff. Semi-structured interviews with family members of persons living with dementia and long-term care staff were conducted in four long-term care homes in Eastern Australia. Interviews were audio-recorded, transcribed, and analysed according to Braun and Clarke's Reflexive Thematic Analysis. Analysis of family member (<i>n</i> = 11) and staff (<i>n</i> = 20) perspectives on elder clowning generated two main themes: (1) transforming the emotional experience of visiting and (2) strengthening family connections through the shared experience. Elder clowning supported families to have improved visiting experiences with their relative in long-term care, which eased visit-related stress before, during, and after visits. Person-centred engagement through elder clowning was perceived to support the reciprocal interaction and happiness of their relative, which supported positive emotions for families. Families learned about their relative's communicative capacity and new dementia-specific communication skills, which they then implemented independently from elder clowning. Shared positive experiences supported socialisation, reminiscence, and memory-making, which may have supported family connections. Elder clowning also provided families with opportunities for social support. While some families were actively involved, others preferred to watch, and some were perceived to decline involvement. Families expressed preferences or suggestions regarding intervention delivery, such as continuity and access. The benefits of elder clowning were found to extend beyond entertainment to support psychosocial wellbeing of families of persons living with dementia in long-term care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012261487540"},"PeriodicalIF":2.2,"publicationDate":"2026-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148984327","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":"Mapping Namaste Care Training for Staff in Long-Term Care Settings: A Scoping Review.","authors":"Xueyi Sun, Meng Jin, Dijuan Meng, Yu Ding, Qinan Shen, Wen Zhou, Yiheng Zhang","doi":"10.1177/14713012261488574","DOIUrl":"https://doi.org/10.1177/14713012261488574","url":null,"abstract":"<p><p>Namaste Care is a person-centered intervention for people with dementia in long-term care, particularly those in advanced stages. However, evidence on how staff are trained and supported to deliver Namaste Care remains fragmented. This scoping review aimed to map training content, delivery formats and support, and training-related outcomes. Following Joanna Briggs Institute methodology, eight databases were searched from inception to May 2026, with additional website and citation searches. Data were synthesized descriptively, and training-related outcomes were mapped against the Kirkpatrick Four-Level Training Evaluation Model. Eleven studies were included. Training commonly addressed core Namaste Care principles and activities, and several programs also included knowledge of dementia and palliative care, as well as communication and relational care skills. Face-to-face workshops and in-service sessions were the most common delivery formats, with some programs also incorporating experiential learning. Follow-up support and practical resources were frequently reported, and family involvement was incorporated into several programs. Staff reactions were generally positive. Learning-related outcomes included greater understanding of the purpose and delivery of Namaste Care and reported improvements in knowledge, attitudes, and self-perceived skills. Some studies reported changes in staff practice, although intended program frequency or duration was not always achieved because of staffing and organizational constraints. Resident, staff, and family caregiver outcomes were mixed and could not be attributed to training alone. Namaste Care training is therefore better understood as part of a broader practice-support strategy rather than as a stand-alone educational activity. However, existing evaluations remain incomplete, with limited evidence linking staff learning to subsequent practice change and wider outcomes.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012261488574"},"PeriodicalIF":2.2,"publicationDate":"2026-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148931925","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}