Dementia (London, England)最新文献

{"title":"Cultural variability in dementia caregiver motivations: Unraveling unique and common drivers.","authors":"Najoua Lazaar, Floor Flurij, Rozemarijn L van Bruchem-Visser, Janne M Papma, Sanne Franzen","doi":"10.1177/14713012251327461","DOIUrl":"https://doi.org/10.1177/14713012251327461","url":null,"abstract":"<p><p><b>Introduction:</b> In the Netherlands, approximately 800,000 individuals act as informal caregivers for people with dementia. Current policies prioritize care within the home setting, often relying on informal caregivers for support, assisted by care professionals. Given the wide ethnocultural diversity among dementia caregivers in the Netherlands, it is crucial to understand how these cultural differences influence caregiving. Given the emphasis on researching barriers to providing care in literature, this study specifically focused on motivators and facilitators to providing care. <b>Methods:</b> We conducted semi-structured interviews, both with caregivers of native Dutch patients (<i>n</i> = 11) and caregivers of patients with a migration background (<i>n</i> = 9), who all provided care at home for patients with dementia. Data was collected using an interview guide and open, axial and selective coding were used to analyze the transcripts of the interviews in Atlas.ti. <b>Results:</b> Four themes were identified. First, culturally shared motivators to providing care emerged, such as having a unique bond with the person with dementia and themes of reciprocity. Second, culture specific perspectives were identified, with Dutch caregivers often spontaneously reporting considering professional care, while culturally diverse caregivers stressed the available network of informal caregivers and their ability to persevere. Third, personal philosophies on life were a driver to provide care for caregivers of native Dutch patients, while religion mainly served as a source of strength in continuing to provide care in the culturally diverse group. Lastly, adult child caregivers benefit from supportive home environments and from using structure and routine in providing care. <b>Discussion:</b> Our findings show that the decision to provide care often seems driven by reciprocity and the prior quality of the relationship with the person with dementia, contrasting with previous work suggesting that religion is a main reason to provide care. Several recommendations are made how care professionals can take these factors into consideration when assisting caregivers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251327461"},"PeriodicalIF":0.0,"publicationDate":"2025-04-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144054641","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":"Post-diagnostic support in Australia: Perspectives of people recently diagnosed with dementia and their carers.","authors":"Slađana Pavković, Lynette R Goldberg, Maree Farrow, Jane Alty, Melissa Abela, Lee-Fay Low","doi":"10.1177/14713012251333880","DOIUrl":"https://doi.org/10.1177/14713012251333880","url":null,"abstract":"<p><p><i>Introduction:</i> Timely post-diagnostic support is necessary to help people with dementia and those who provide care adapt to the diagnosis and optimise independence and quality of life. However, evidence from people with dementia and carers regarding the support they need is scarce. <i>Aim:</i> To explore the perspectives of people with dementia and their carers regarding the support they had been offered, barriers and facilitators to accessing such support, and support they viewed as desirable or ideal. <i>Method:</i> This was a cross-sectional qualitative exploratory study. Data were collected from individual interviews with 13 people recently diagnosed with dementia at nine Australian memory clinics and 17 carers. Interviews were conducted between September 2021 and October 2022. Reflexive thematic analysis was used to examine participants' comments under four topics: Current Care and Support, Barriers, Facilitators, and Desirable Care and Support. <i>Results:</i> Current Care and Support: Four themes emerged: Communication with empathy; Written information valuable but could be overwhelming; Referrals provided but not necessarily followed; A focus on prescribed anti-dementia medications. Under the topic of Barriers, three themes were derived: Dementia stigma restricts life after diagnosis; Disapointment in Health and Aged Care systems; Limited insight into and/or difficulty expressing own needs. Under the topic of Facilitators, comments focused on Support from family and friends is crucial. Under the topic of Desirable Care and Support, three themes emerged: A single person guiding ongoing post-diagnostic support; Support with driving concerns; Engaging and tailored information. <i>Conclusion:</i> Perspectives of people recently diagnosed with dementia and their carers identified the need to ensure that post-diagnostic support addressed their individual needs, was clear, ongoing and involved the support of family and friends to reduce barriers and facilitate access. The importance of guidance by a trusted professional support person was considered key in facilitating more effective post-diagnostic dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251333880"},"PeriodicalIF":0.0,"publicationDate":"2025-04-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059984","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":"Barriers and facilitators to accessing and engaging with arts-based non-pharmacological interventions for people living with dementia: A systematic review.","authors":"Megan Polden, Megan Rose Readman, Tahlia Barnard, Abigail Godfrey, Annabel Gray, Clarissa Giebel","doi":"10.1177/14713012251333017","DOIUrl":"https://doi.org/10.1177/14713012251333017","url":null,"abstract":"<p><p>Background and AimsNon-pharmacological arts interventions are increasingly being recognised as effective and beneficial ways to support and improve cognition and general well-being for people with dementia. However, accessing and engaging with beneficial arts interventions and support services can be challenging for people with dementia and their carers and it is important to understand barriers and facilitators that may impede access. This systematic review aimed to synthesise evidence on the barriers and facilitators to accessing and engaging with arts interventions and services for people living with dementia.MethodsWe systematically searched five electronic databases (PubMed, PsycINFO, CINAHL, Scopus, Web of Science) for studies reporting barriers and facilitators to accessing and engaging with arts interventions for people with dementia in July 2024, screening a total of 7815 articles. Nineteen papers were deemed eligible for inclusion in this review including 567 people with dementia, 320 unpaid carers and 355 paid carers.ResultsThis review highlights key facilitators and barriers to accessing and engaging with arts interventions for people with dementia. Key facilitators included the assistance of volunteers, the inclusion of unpaid carers in the sessions, and the effective facilitation of sessions. Barriers to access and engagement were identified for people with dementia and their unpaid carers such as increased reliance on unpaid carers and a lack of training and time for paid carers.ConclusionsIncreased awareness of these barriers and facilitators could aid in designing future arts interventions and support services to promote wider access and engagement for people with dementia and their carers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251333017"},"PeriodicalIF":0.0,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143993670","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":"Changing care practices and culture in a specialised unit for people with behavioural and psychological symptoms of dementia.","authors":"Suzanne Dawson, Sarah Collyer, Jenie Aikman, Kate Maddigan, Michael Page, Stacie Attrill","doi":"10.1177/14713012251333205","DOIUrl":"https://doi.org/10.1177/14713012251333205","url":null,"abstract":"<p><p>There are significant challenges in creating and maintaining positive care cultures for people with dementia. My Home Life is a UK initiative that provides staff with frameworks and tools to facilitate the development and implementation of strategies that support compassionate, relationship-centred care. Staff at a neurobehavioral unit used one of these tools, 'A Way with Words', and developed this into a language intervention, flipping language, which was grounded by the principles of My Home Life. This qualitative study explored how flipping language impacted on care provision and culture in a neurobehavioral unit. Five focus groups were held with staff (<i>n</i> = 23) and family members (<i>n</i> = 3) to understand their experiences of the flipping language intervention which involved staff and families exploring everyday clinical communication with individuals living with dementia. Using reflexive thematic analysis, seven themes were identified from the data. Flipping language resulted in staff having a better understanding of the person which facilitated tailored support. Conversely, families believed that knowing a person fosters language about them being flipped. The power of language was highlighted by all participants. Families spoke about the impact that clinical language had on their care journey. Staff spoke about their experiences of the playful and curious approach to flipping language fostered a culture of openness and connectedness. In summary, flipping language was perceived to promote a care environment that was enabling for staff to connect with residents, families and other staff, facilitating personalised and relational care. Flipping language has the potential to be implemented in any care setting seeking to challenge and improve care practices and culture. Unique components of this study include the intervention being led by a lived-experience staff member.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251333205"},"PeriodicalIF":0.0,"publicationDate":"2025-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144024960","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":"Impact evaluation of a dementia-friendly community mural: Planting a seed for change.","authors":"Laura Garcia Diaz, Evelyne Durocher, Paula Gardner, Carrie McAiney, Lori Letts","doi":"10.1177/14713012251333864","DOIUrl":"https://doi.org/10.1177/14713012251333864","url":null,"abstract":"<p><p>Stigma against persons living with dementia negatively impacts their quality of life. One of the aims of dementia-friendly community initiatives is to reconstruct public perceptions of dementia through dementia awareness campaigns. In this paper we present the findings of an evaluation of the impact of a Canadian dementia-friendly community mural on raising awareness about dementia, and lessons learned from the process undertaken to create the mural. Using a practical participatory evaluation research approach, the research questions and data collection methods were co-created with the team that led the community mural, which was comprised of four people living with dementia. Numerous data collection methods were used to support this outcome evaluation including observations, interviews and focus groups, and social media tracking. Findings indicate that while the process of creating the mural, and the mural itself, have planted a seed for increased dementia awareness and inclusion of persons living with dementia in the community, to create social change complementary awareness raising efforts are needed.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251333864"},"PeriodicalIF":0.0,"publicationDate":"2025-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144045639","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":"Living alone with dementia: Supportive care for dementia, a replicable model for support and lessons learned.","authors":"Gillian Hamilton, Tamiko Azuma, Kylee Volk, Ethan Best, Sara Crance","doi":"10.1177/14713012251332350","DOIUrl":"https://doi.org/10.1177/14713012251332350","url":null,"abstract":"<p><p>IntroductionCurrent support programs for individuals with dementia focus primarily on patients living with caregivers. Research on individuals with dementia living alone is sparse, with small sample sizes. This report describes data collected from the Supportive Care for Dementia program. The program's goals are to provide support services that allow the person to remain in their residence, increase involvement and decrease the stress experienced by family members, reduce neurobehavioral disturbances, reduce hospitalizations and emergency room visits and related costs, and facilitate placement or caregiving support when appropriate.MethodsThe data were collected from 300 patients enrolled in the Supportive Care for Dementia program. Measurements included patient behaviors, distant caregiver stress, hospitalizations and emergency room visits, and provided services.ResultsProgram participation was associated with positive outcomes, including decreased emergency room visits, decreased distant caregiver stress, and increased supportive services and familial engagement. Demographic data including racial and ethnic differences are discussed.DiscussionThe Supportive Care for Dementia program is a replicable program with demonstrated positive outcomes for individuals with dementia living alone.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251332350"},"PeriodicalIF":0.0,"publicationDate":"2025-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143774888","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":"'What are nurses' and healthcare workers' cultural understandings of dementia?' An integrative literature review.","authors":"Catharine Jenkins, Analisa Smythe","doi":"10.1177/14713012241285525","DOIUrl":"10.1177/14713012241285525","url":null,"abstract":"<p><p><b>Aim:</b> to explore the range of cultural understandings of dementia held by people providing nursing care globally.<b>Background:</b> There is a worldwide shortage of nurses and healthcare workers, resulting in extensive global mobility among the workforce. Cultural competence is expected of nurses who serve diverse populations and although self-awareness is recognised as crucial in developing this ability, the focus has tended to be on the identity of the patient and adjusting care according to their specific needs. However, taken-for-granted assumptions drive unconscious judgements and therefore behaviour so nurses' dementia-related understandings are worthy of exploration.<b>Design:</b> An integrative literature review, comprising five stages: problem identification; literature search; data evaluation; data analysis; and presentation of the findings.<b>Methods:</b> Six databases were searched for original research published between 1997 and 2023. Studies which focus on qualified/registered and unqualified/unregistered healthcare workers' cultural understandings of dementia were included. Studies were evaluated using a tool designed for the critical assessment of qualitative research. Data was extracted using a bespoke spreadsheet. Conventional content analysis was undertaken to develop a synthesised summary of the findings of the studies.<b>Findings:</b> 11 papers met the inclusion criteria. Content analysis led to identification of two main themes: 'Stigma as a common factor in cultural perceptions of dementia', and 'Stigma derived from cultural perceptions has consequences for people living with dementia'.<b>Conclusion:</b> An international perspective facilitated insight into alternative perceptions of the nature of dementia and care responses. A version of the 'Relationship Centred Care' model, expanded to include the wider community, could support theoretical and practical recommendations for culturally congruent approaches to care. Further research is required to examine the usefulness of incorporating this approach internationally.<b>Reporting Method:</b> The authors followed the ENTREQ reporting guidelines (Tong et al., 2012).</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"552-576"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11915765/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142302426","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":"Designing a mobile application to promote physical activity in spousal care partners of persons living with dementia and their care-recipient.","authors":"Ashley Kuzmik, Marleny Rodriguez, John Hannan, Marie Boltz","doi":"10.1177/14713012241272878","DOIUrl":"10.1177/14713012241272878","url":null,"abstract":"<p><p><b>Background:</b> Care partners of persons living with dementia and their care-recipient have low levels of physical activity. Mobile applications have demonstrated effectiveness in promoting physical activity among older adults. The purpose of this study was to explore the perceptions of spousal care partners of persons with dementia and their care-recipient on the design and content of a mobile application intended to promote physical activity.<b>Methods:</b> Semi-structured interviews were conducted with 14 care partners and their care-recipient. After the interviews were transcribed verbatim, thematic analysis was performed.<b>Results:</b> Four themes emerged from the participants' responses related to the design and content of a mobile application to promote physical activity: 1) exercise preferences and habits, 2) barriers to exercise, 3) motivations for exercise, and 4) mobile application preferences and supportive features.<b>Conclusion:</b> Findings lay the foundation for designing an effective user-friendly mobile application to promote physical activity that caters to the diverse needs, preferences, and challenges among spousal care partners of persons with dementia and their care-recipient.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"408-423"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11915756/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141895005","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 effectiveness and experiences of people living with dementia interacting with digital interventions: A mixed methods systematic review.","authors":"Annabel Ditton, Hissah Alodan, Christopher Fox, Shirley Evans, Jane Cross","doi":"10.1177/14713012241302371","DOIUrl":"10.1177/14713012241302371","url":null,"abstract":"<p><p><b>Background:</b> As dementia care evolves, digital interventions are being developed to improve the quality of life of people living with dementia. It is also increasingly recognised that some people living with dementia can use and benefit from using digital interventions themselves. Therefore, exploring the effectiveness and experiences of using such interventions is essential to optimise digital intervention development and delivery.<b>Method:</b> 5 databases were searched (MEDLINE (Ovid), PsycINFO, EMBASE, CINAHL and Web of Science) for papers reporting effectiveness outcomes or experiences, involving people living with dementia or mild cognitive impairment engaging with digital interventions for improving their quality of life. 73 relevant papers published between 2018-2023 were identified, 59 included effectiveness data and 18 included data on experiences.<b>Results:</b> The integration of evidence identified that people living with dementia can benefit from engaging in digital interventions, if they are motivated, and provided with tailored training, support, appropriate devices and content. Benefits were seen within the domains of cognition, health and well-being and social relationships. Benefits were more frequent when digital interventions were provided in the home environment with specified daily/weekly usage requirements.<b>Conclusion:</b> This review provides an overview of the current state of research exploring engagement of digital interventions by people with dementia for improving their quality of life. The findings provide guidance on how to optimise the method of delivery. Future research should explore how digital interventions can improve social relationships and self-concept of people living with dementia, the long-term sustainability of digital interventions, and how individuals with dementia form attitudes towards technology.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"506-551"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11915779/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142741470","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":"What are the communication guidelines for people with dementia and their carers on the internet and are they evidence based? A systematic review.","authors":"Charlotte Harris, Rebeccah Webber, Gill Livingston, Suzanne Beeke","doi":"10.1177/14713012241292486","DOIUrl":"10.1177/14713012241292486","url":null,"abstract":"<p><p><b>Introduction:</b> Communication difficulties of people with dementia can negatively impact well-being of them and their carers. There are evidence-based and clinically recommended strategies that can be used to support people with dementia which they are more likely to access on websites than via academic literature. We aimed to search the internet for communication advice for people with dementia and their carers, describe the strategies and compare these to the evidence-base.<b>Methods:</b> After a systematic search of websites offering communication advice to people with dementia and their carers, we described the strategies there, used reflexive thematic analysis to identify the rationale for recommended strategies and compared the strategies to the evidence base. We included websites aimed at people with dementia and their carers published by dementia-related health and social care, or third sector organisations. We compared strategies to those in published systematic reviews and practice guidance from UK health and social care agencies.<b>Results:</b> Our review identified 39 eligible websites, containing 164 individual strategies. These were grouped into 26 strategy types, with nine latent themes developed. These were supporting communication strengths, valuing the interaction, prioritising needs, providing emotional safety, working together, adapting communication for the situation, developing carer communication skills, knowing the individual and focusing on broader meaning.<b>Conclusion:</b> Our review highlights the need for flexible approaches to supporting communication for people with dementia which consider the individual's needs and preferences, the context of the interaction, and the priority in that moment. We identify the inherent challenges for carers in trying to interpret advice for their own needs.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"577-594"},"PeriodicalIF":0.0,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11915767/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142482263","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}