Dementia (London, England)最新文献

{"title":"Let the Good Times Grow: Exploring What is Important to Couples Living With Dementia Surrounding Leisure Activities.","authors":"Hayley Bruce, Kristen Tulloch, Nancy A Pachana, Tamara De Regt, Theresa Scott","doi":"10.1177/14713012251376749","DOIUrl":"https://doi.org/10.1177/14713012251376749","url":null,"abstract":"<p><p>Dementia is a cluster of disorders affecting a growing number of people around the world, with consequent disruption to the lives of those diagnosed and their loved ones. The impact of dementia on families has been widely documented; however, this is often done through the lens of caregiver burden. In contrast, the present research explores the wants and needs of couples living with dementia in terms of their shared leisure activities. Five Australians living with dementia and their partners participated in recorded semi-structured interviews. Thematic analysis of transcribed interviews produced four main themes and 15 subthemes highlighting this population's needs and values regarding leisure. Themes included, \"increased awareness of how dyads spend their time\", \"awareness of dyadic changes within the relationship\", \"appreciation of fulfilling moments\", and \"person with dementia's engagement/activity moderation and support by care partner\". The results support existing research including changes to relationship dynamics and lifestyle post-diagnosis. This research indicates the importance of leisure interventions that focus on improving socialisation for people with dementia and their partners and supports increased opportunities for quality time together.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251376749"},"PeriodicalIF":2.2,"publicationDate":"2025-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144994516","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":"Care Experiences of Family Caregivers of People with Dementia: A Nationwide Survey Study Comparing Caregivers with Migrant and Native Backgrounds.","authors":"Michiel L A de Graaff, Femmy M Bijnsdorp, Jany J D J M Rademakers, Anneke L Francke, Irene G M van Valkengoed, Susanne van den Buuse, Iris van der Heide","doi":"10.1177/14713012251375251","DOIUrl":"https://doi.org/10.1177/14713012251375251","url":null,"abstract":"<p><p><b>Introduction:</b> Having a migration background might be associated with the care experiences of family caregivers of people with dementia. For example, caregivers with a migration background often face additional challenges in accessing professional care. The aim of this study was to provide insight into differences in care experiences between family caregivers with a native Dutch and a European or a non-European migration background. <b>Methods:</b> Data were used from a large-scale Dutch survey among family caregivers of relatives with dementia. The sample consisted of 170 caregivers with a European migration background, 199 caregivers with a non-European migration background and 4,158 caregivers with a native Dutch background. Linear and multinomial logistic regression analyses were used to analyse the survey data. The results were adjusted for background characteristics such as sex and age. <b>Results:</b> No differences were found between the two migrant groups and the native Dutch group in the perceived care burden and the caregiving intensity. Family caregivers with a European migration background were less likely to feel prepared for future changes in the dementia trajectory of their relative with dementia than caregivers with a native Dutch background. In addition, caregivers with a European migration background gave a lower score for their appreciation of the overall supply of care and support. <b>Discussion:</b> Caregivers with a <i>European</i> migration background, but not caregivers with a <i>non-European</i> migration background, were less likely to feel prepared for future changes than caregivers with a native Dutch background. In addition, they had lower appreciation for the overall supply of care and support. Offering a good supply of professional care and support, tailored to the individual situation and support needs, is important for caregivers in general, and those with a European migration background in particular.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251375251"},"PeriodicalIF":2.2,"publicationDate":"2025-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144994534","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring Ethical Dilemmas and Concerns in Caring for Persons With Dementia: Insights From Formal Caregivers in Albania.","authors":"Elona Gaxhja, Ilma Toci, Dorina Saja, Eliona Sula, Mitilda Gugu, Daniel Sperling","doi":"10.1177/14713012251375380","DOIUrl":"https://doi.org/10.1177/14713012251375380","url":null,"abstract":"<p><p>IntroductionDementia is an escalating global concern driven by aging populations, significantly impacting Low-Middle-income countries like Albania. Formal caregivers face a unique set of ethical dilemmas and concerns when caring for individuals with dementia and their families. The lack of ethical guidelines and policies further complicates decision-making in these contexts. This is part of a larger EDEM project.AimThis study aims to explore the extent to which ethical dilemmas and concerns in caring for people with dementia are observed and experienced by formal caregivers in Albania.MethodsData were collected through face-to-face semi-structured discussions with three homogeneous focus groups of formal caregivers from diverse educational backgrounds, and analyzed using thematic analysis within the conceptual framework of Interpretative Phenomenological Analysis (IPA).ResultsA total of 23 participants (8 nurses, 7 social workers and 8 doctors) were included. Three main themes emerged which were: (1) Ethical Tensions in Caring for an individual with dementia and Family involvement; (2) The Multifaceted Burden of Dementia Care on Families; and (3) Quality of Care and Resource Allocation; Training and education of healthcare professionals. In patriarchal societies like Albania, caregivers' personal and cultural beliefs may conflict with their professional duties or the preferences of individuals with dementia and their families.ConclusionsFormal caregivers provide insights into their experiences with ethical dilemmas, concerns, and decision-making processes when caring for individuals with dementia. The findings underscore the critical necessity for developing and implementing clear policies, guidelines, community awareness initiatives, and comprehensive training programs for multidisciplinary teams, aimed at promoting optimal care standards.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251375380"},"PeriodicalIF":2.2,"publicationDate":"2025-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980156","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 Psychosocial Needs of People With Dementia Living Alone: A Narrative Synthesis Systematic Review.","authors":"Tia Cheung-Cook, Phil Joddrell, Karen Harrison Dening, Thea Sobers, Madeleine Walpert, Emma Wolverson","doi":"10.1177/14713012251363090","DOIUrl":"https://doi.org/10.1177/14713012251363090","url":null,"abstract":"<p><p>The number of people with dementia living alone is predicted to double by 2039. People with dementia may live alone through choice and others due to life events like bereavement. There are unique challenges to living alone for people with dementia, their care partners and services supporting those individuals. The current review sought to summarise the psychosocial needs reported by people with dementia who live alone. Searches were completed accessing Academic Search Ultimate, MEDLINE, CINAHL Ultimate, APA PsycArticles and APA PsycInfo. Eligible articles explored the needs or experiences of people with dementia living alone through qualitative or mixed methods. The data was synthesized narratively, and the National Institute of Care and Health Excellence's quality appraisal checklist was used to assess all included studies. Needs were identified across all domains of Kitwood's model; love, identity, attachment, inclusion, occupation and comfort. The data revealed overlapping needs between those with dementia who live alone and those who live with others but importantly, needs that were distinct or exacerbated by living alone with dementia. Specifically, threat to personhood without others to maintain stories about identity and the management of living at home with the recognition that this would eventually end. The heterogeneity of people with dementia who live alone was highlighted and the gaps in the representation of the needs of specific groups in the research were considered such as individuals from the LGBTQ + community. Thus, the need for an intersectional and person-centred approach to future research and clinical practice was discussed.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251363090"},"PeriodicalIF":2.2,"publicationDate":"2025-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980767","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":"Gender Differences in the Types of Care Received, Perceived Quality of Care and Quality of Life: A Large-Scale Survey Study Among People With Dementia.","authors":"Michiel de Graaff, Iris van der Heide, Jany Rademakers, Femmy Bijnsdorp, Susanne van den Buuse, Anneke Francke","doi":"10.1177/14713012251375277","DOIUrl":"https://doi.org/10.1177/14713012251375277","url":null,"abstract":"<p><p><b>Background:</b> Research shows a link between quality of care and quality of life in people with dementia, but potential differences between men and women remain unexplored. This study examined gender differences in types of care received, the quality of care and quality of life of people with dementia in the Netherlands. Gender differences were explored in the relation between quality of care and quality of life. <b>Methods:</b> Cross-sectional survey data were used of 449 people with dementia living in the Netherlands. Types of care were analysed with descriptive statistics and non-parametric tests. Perceived quality of care and quality of life were measured on a ten-point scale. Gender was analysed as a moderator in the quality of care-quality of life association using regression analysis. Included background characteristics were age and living situation. <b>Results:</b> More women received home care, while group meetings were more common among men. Quality of care ratings were similar for men (7.6) and women (7.5), indicating fair to good care. The average quality of life was slightly lower for women (6.9) than for men (7.1; b = -.251; <i>p</i> < .05). A higher quality of care was associated with a higher quality of life (b = .373; <i>p</i> < .05). The association between quality of care and quality of life was independent of the gender (b = -.035; <i>p</i> > .05). <b>Conclusions:</b> Men and women with dementia who were cognitively able to complete the survey differed in the types of care they received. On average, the respondents perceived the quality of care as fair to good. Quality of life was rated as fair, slightly higher for men. A higher quality of care was associated with a higher quality of life. Future studies should explore gender differences in family care and compare men and women receiving similar care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251375277"},"PeriodicalIF":2.2,"publicationDate":"2025-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980243","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":"Perceptions and Experiences of Dementia-Friendly Education Among Youth in Macao: A Qualitative Study.","authors":"Han Wang, Aimei Mao, Yi Wen, Xuan Gao, Wai In Lei, Ion Hong Wong, Iat Kio Van, Meijing Tan, Qun Wang, Ning Liu, Jianwei Wu","doi":"10.1177/14713012251375405","DOIUrl":"https://doi.org/10.1177/14713012251375405","url":null,"abstract":"<p><p>BackgroundAs dementia emerges as a critical global health challenge, youth engagement is pivotal for building dementia-friendly communities. However, culturally sensitive dementia education models for Chinese youths remain underdeveloped. This study aims to explore the perceptions and experiences of a hybrid dementia education program among Macao youths.MethodsA qualitative exploratory study was conducted with 39 Macao youths (aged 15-24; 35.9% male) recruited through purposive sampling. Participants engaged in a hybrid education program comprising 2-h theoretical lectures and 2-h experiential learning. Post-intervention, semi-structured focus group interviews were conducted, transcribed, and analyzed using Colaizzi's seven-step framework in NVivo 11 to identify emergent themes.ResultsThree key themes emerged: (1) Motivation for participating in dementia education: Social and family responsibility-driven motivation; (2) Enhanced youths awareness of dementia: Converted stereotype of dementia and improved communication skills; (3) Suggestions for improving future education programs: Extending youth engagement with patients, increasing diversified practical activities, providing guidance for practical activities.ConclusionThe findings provide evidence to guide the design of tailored dementia awareness programs for youths, supporting the sustainable development of dementia-related interventions.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251375405"},"PeriodicalIF":2.2,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980212","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 Dementia Care Triad: Findings From a Longitudinal Qualitative Study With People Living With Dementia, Their Carers, and Their Healthcare Professionals.","authors":"Remco Tuijt, Jill Manthorpe, Greta Rait, Rachael Frost, Jane Wilcock, Kate Walters","doi":"10.1177/14713012251372224","DOIUrl":"10.1177/14713012251372224","url":null,"abstract":"<p><p><b>Background:</b> Best healthcare practice for people with dementia encourages the inclusion of family members or carers, alongside enabling people with dementia to make their own decisions. Dementia care thus often includes the person with dementia, their carer, and their healthcare professional (HCP): a dementia care triad. Understanding how this triad is developed and navigated may improve future dementia care services. <b>Methods:</b> A longitudinal qualitative approach was used to interview 30 people with dementia, 31 family carers, and 7 healthcare professionals in England between May 2020 and March 2021. Data from three interview time points were transcribed and analysed using reflexive thematic analysis. <b>Findings:</b> The relationships within a dementia care triad were initially built on the dyadic relationship between the person with dementia and their family carer and any pre-existing relationships with their HCP. The nature and proximity of the carer to the person with dementia influenced how triadic relationships in dementia care formed and functioned, with spousal and co-resident carers more actively involved in healthcare interactions. Further positive development of a triad required confidence in the HCP, and shared perspectives on balancing the involvement of the carer and the independence of the person with dementia, with considerations of autonomy and risk, and which did not always follow a linear transition. While increased carer involvement often supported the person with dementia, it sometimes led to their exclusion. Engagement by healthcare professionals varied, reflecting inconsistencies in applying person-centred care. <b>Conclusions:</b> The findings of this study suggest a need for clearer, more consistent approaches that support dynamic carer roles while preserving the autonomy of the person with dementia. This study provides additional considerations in relationship dynamics that inform our understanding of the dementia care triad.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251372224"},"PeriodicalIF":2.2,"publicationDate":"2025-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980787","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":"Social Participation and Psychological Well-Being Among Older Adults With Dementia.","authors":"Namkee G Choi, C Nathan Marti, Yuanjin Zhou, Mark E Kunik","doi":"10.1177/14713012251375273","DOIUrl":"https://doi.org/10.1177/14713012251375273","url":null,"abstract":"<p><p>The positive physical, mental, and cognitive health effects of social participation in late life have been well established. However, the facilitators and barriers of social participation among older adults with dementia and the effects of social participation on their psychological well-being have been understudied. Using the cross-sectional 2023 National Health and Aging Trends Studies (N = 7,547; 13.2% of them classified as having possible or probable dementia), we examined the correlates of social participation among older adults with dementia, compared to those among their peers without dementia, the moderating effect of dementia on the associations between social participation and psychological well-being, and the mediation effects of SSNS and depressive/anxiety symptoms on the associations between social participation and psychological well-being among older adults with dementia. Results from linear regression models show negative associations between dementia and social participation (<i>B [SE]</i> = -0.36 [0.07], <i>t</i> = -5.38, <i>p</i> < .001 for possible dementia; <i>B [SE]</i> = -0.31 [0.09], <i>t</i> = -3.42, <i>p</i> = .001 for probable dementia). However, regardless of dementia status, higher education, larger social network, greater neighborhood social cohesion, and engagement in exercise were facilitators of social participation. Perceived health-related and transportation barriers and vision impairment among those with dementia were barriers to social participation. The positive association between social participation and psychological well-being (<i>B [SE]</i> = 0.18 [0.01], <i>t</i> = 13.01, <i>p</i> < .001) was not moderated by dementia status, although both possible and probable dementia were independently negatively associated with psychological well-being. Path model results show that among older adults with dementia, increased social network size (ratio of indirect to total effects = 0.13) and reduced depressive/anxiety symptoms (ratio of indirect to total effects = 0.17) mediated the association between social participation and psychological well-being. Implications of the findings for enhancing social participation among older adults with dementia are discussed.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251375273"},"PeriodicalIF":2.2,"publicationDate":"2025-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980746","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":"Potential of the Job Demands and Accommodation Planning Tool for Individuals Working With Mild Cognitive Impairment or Dementia.","authors":"Katherine Bak, Kristina Kokorelias, Jennifer Boger, Louise Nygård, Mervi Issakainen, Anna Mäki-Petäjä-Leinonon, Ann-Charlotte Nedlund, Charlotta Ryd, Arlene Astell","doi":"10.1177/14713012251374204","DOIUrl":"https://doi.org/10.1177/14713012251374204","url":null,"abstract":"<p><p>Individuals living with young onset dementia or mild cognitive impairment are typically working when cognitive decline emerges. Inability to maintain job demands can lead to loss of employment, loss of purpose and identity, financial instability, and withdrawal from social networks. The Job Demands and Accommodation Planning Tool was developed to identify workplace supports for individuals with episodic disabilities. The aim of this study was to explore the applicability of the Job Demands and Accommodation Planning Tool for individuals working with young onset dementia or mild cognitive impairment. Semi-structured interviews were conducted with 23 individuals: 11 in Canada, 7 in Finland and 5 in Sweden, where they described job demands and workplace challenges they faced. A secondary analysis of interview data was conducted using content analysis and a framework approach to code, categorize, and examine overlap with the Job Demands and Accommodations Planning Tool. Results showed that the Job Demands and Accommodation Planning Tool aligns well with the experiences of individuals living with young onset dementia or mild cognitive impairment. The Job Demands and Accommodation Planning Tool could inform workplace supports for people with young onset dementia or mild cognitive impairment to maintain their presence in the workforce.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251374204"},"PeriodicalIF":2.2,"publicationDate":"2025-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980515","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":"Principles and Strategies of Interviewing People with Advanced Dementia.","authors":"Tamara Backhouse, Anne Killett, Yun-Hee Jeon, Eneida Mioshi","doi":"10.1177/14713012251371349","DOIUrl":"https://doi.org/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":"14713012251371349"},"PeriodicalIF":2.2,"publicationDate":"2025-08-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144980683","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}