Dementia最新文献

{"title":"Safer dementia care spaces: Perspectives from LGBTQ+ people with cognitive impairment and caregivers","authors":"Arne Stinchcombe, Jeremy Oueis, Kimberley Wilson, David Kenneth Wright","doi":"10.1177/14713012241284691","DOIUrl":"https://doi.org/10.1177/14713012241284691","url":null,"abstract":"The number of caregivers and people living with dementia and other related forms of cognitive impairment is increasing worldwide. Compared to heterosexual and cisgender individuals, studies suggest that lesbian, gay, bisexual, queer, or other sexual and/or gender minority people (LGBTQ+) are at a higher risk for known risk factors for cognitive impairment and dementia, stemming from minority stress experiences. Limited research has explored the distinct obstacles that LGBTQ+ people with cognitive impairment and caregivers encounter, especially within dementia care. The purpose of this study was to deepen our understanding regarding LGBTQ+ people with cognitive impairment and caregivers’ experiences with dementia care spaces, and to identify the strategies that they perceive as effective in creating safer and more inclusive spaces. Fourteen LGBTQ+ participants aged 27–78 ( M = 58.07), consisting of two individuals with cognitive impairment and 12 caregivers, were interviewed about the care needs of LGBTQ+ people with cognitive impairment and caregivers, and their experiences with dementia care spaces. Using reflexive thematic analysis, we identified three overarching themes from the data, indicating that LGBTQ+ people with cognitive impairment and caregivers feel left “on the margins” of dementia care and express a desire for their identities to be celebrated and recognized. Additionally, they proposed recommendations for policy change to foster safer and more inclusive spaces for dementia care. The findings call attention to the negative experiences of LGBTQ+ people with cognitive impairment and caregivers with dementia care, but also highlight the ways in which care practices can be transformed to effectively address their care needs.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"9 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142265431","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":"Partners in progress: Advancing dementia research through collaboration","authors":"John Roth, Cathy Roth OAM, Anita MY Goh","doi":"10.1177/14713012241285577","DOIUrl":"https://doi.org/10.1177/14713012241285577","url":null,"abstract":"The lived experience of dementia, the views of the caregiver, and the pursuit of scientific understanding by researchers need to converge for holistic and collaborative action to improve dementia research. However, there often exist silos and division between these groups, which limits relevance and innovation. This paper aims to bridge this divide by offering a tripartite exploration of dementia research through three distinct, yet interconnected, lenses of a person living with the disease, their dedicated carer, and a researcher actively engaged in dementia research. This collaborative endeavour highlights the need to move beyond the traditional (and outdated) dichotomy of “subject and expert”. By weaving together personal perspectives and insights in a multi-voiced approach, we highlight the opportunities and potential that can emerge from working in partnership and using a relational approach.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"24 1","pages":"14713012241285577"},"PeriodicalIF":0.0,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142265432","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 can you think about losing your mind?”: A reflexive thematic analysis of adapting the LivDem group intervention for couples and families living with dementia","authors":"Natasha S. Woodstoke, Beth Winter, Emily Dodd, Richard Cheston","doi":"10.1177/14713012241272805","DOIUrl":"https://doi.org/10.1177/14713012241272805","url":null,"abstract":"Introduction: Despite the psychological challenges that dementia creates, comparatively little attention has been paid to how individuals or families can be helped to adjust to dementia. One of the few interventions to do this is the Living well with Dementia (LivDem) post-diagnostic course. LivDem focuses on supporting individuals to talk more openly about their dementia. However, while family supporters attend preliminary and follow up sessions, their role is limited and finding a way for them to be more actively involved might enhance the impact of the intervention and make it more flexible. We therefore set out to explore how the current LivDem intervention could be adapted for couples and families. Method: We completed eleven semi-structured interviews and focus groups with four groups of stakeholders: people living with dementia and their families: LivDem facilitators; researchers in this area; and psychotherapists with experience of working with couples or families living with dementia. Interviews were transcribed and analysed using reflexive thematic analysis. Results: Four main themes were generated: “Hear the impact on everybody”; People who are “ready to do that”; “It’s such a fine line”; and “You deal with it in your family”. Participants emphasised that the intervention needs to be delivered by willing and skilled facilitators to people who are ready to talk in their family context; and this intervention needs to be embedded within connected services. Conclusions: Stakeholders felt that it would be possible to adapt the LivDem model for couples and families so long as a number of conditions were met. An adapted family or couple version of LivDem has the potential to facilitate improved adaptation to dementia and to be incorporated into dementia pathways and delivered with the NHS and the voluntary sector. Further research is needed to establish the feasibility of such an intervention.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"64 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142265434","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":"“You just can’t do that in dementia care”: Barriers to partnership working within dementia services for people from south Asian communities","authors":"R Cheston, E Dodd, P Smith, NS Woodstoke, K Jutlla, G Fry, D Truswell, J Butt, S Parveen","doi":"10.1177/14713012241283189","DOIUrl":"https://doi.org/10.1177/14713012241283189","url":null,"abstract":"Background: People from South Asian communities are under-represented at all levels of dementia services. Consequently, there is pressure for the statutory sector to deliver services in partnership with Voluntary, Community, Faith and Social Enterprises (VCFSEs). This study set out to explore the constraints to effective partnership working which prevent dementia care from being delivered in an equitable way.Methods: Data collection consisted of two phases. First, we interviewed seven people with experience of partnership working and developed three fictional vignettes that were representative of the challenges they faced. We then used these vignettes to stimulate discussion in focus groups and interviews with 13 VCFSE and 16 statutory sector participants. Data was analysed using deductive thematic analysis.Findings: Three themes were developed during the analysis. First, White British-centric services focused on the challenges for statutory services in meeting the needs of South Asians, developing flexible, responsive services and making inclusive partnership working truly meaningful. Second, VCFSE participants (but not statutory service participants) associated a failure to deliver effective partnership working with unconscious bias operating within systems, leading to the devaluing of their expertise and to their views being ignored. Finally, participants emphasised the need to prioritise relationships if they were to meet the challenges of developing partnership working.Conclusion: We identified three constraints acting to prevent effective partnership working. First, the different meanings that statutory and VCFSE participants attach to challenges threatens their ability to develop a shared understanding of the needs of communities. Second, a reluctance to explicitly address service deficiencies can mean that stereotypes remain unaddressed. Finally, while both parties lacked power to change the fundamentals of service delivery, power and resources were also unbalanced with VCSFE services being more reliant on the statutory sector.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"16 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142265182","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 how community-dwelling persons with early dementia perceive health and community services: Informing the dementia strategy of Newfoundland and Labrador, Canada","authors":"Karen Parsons, Joanne Smith-Young, April Pike","doi":"10.1177/14713012241284693","DOIUrl":"https://doi.org/10.1177/14713012241284693","url":null,"abstract":"BackgroundWith an increased aging population, the number of individuals with dementia is expected to rise. The onset of dementia marks the start of negotiating access to a wide range of health and social services to find practical and emotional supports to deal with the management of changes and subsequent challenges that individual with dementia face. The toll of dementia goes beyond the health care system, affecting families and caregivers’ quality of life. This places more pressure on family caregivers and health care institutions to provide services for affected individuals. It is important to understand the service needs of this population to enable them to live at home longer, contribute to society and maintain a positive quality of life.AimTo increase understanding of how persons living at home with early dementia and their caregivers/significant others currently perceive and interact with health and community-based services and service providers.MethodsA qualitative descriptive approach was used to explore the experiences of individuals with early dementia and care providers with health and community-based services using semi-structured interviews and content analysis.ResultsParticipants included 16 individuals 50 years and older with mild/early dementia living at home, 22 informal caregivers of individuals with mild/early dementia, and 5 key community informants (community health nurses and social workers). Four thematic categories of barriers and two thematic categories of facilitators for access to and uptake of supportive services were identified. Five strategies to inform the development of an action plan to enhance access to, and uptake of, supportive services were determined.ConclusionsEarly recognition of dementia through education and publicity enhanced public awareness, attention, and social inclusion with dementia-friendly neighborhoods and facilities need to be considered to achieve effective dementia-related services. Inclusion and recognition of the wishes of persons with dementia is key.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"48 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142265180","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":"Cognitive assessment of nursing home residents: Survey data on tools used and perceptions of use among social service professionals in one U.S. state","authors":"Anthony D. Campbell, Jennifer F. Jettner, Katherine Crawford, Kayla Thompson","doi":"10.1177/14713012241285485","DOIUrl":"https://doi.org/10.1177/14713012241285485","url":null,"abstract":"Background: Social service professionals routinely use screening tools to assess for cognitive decline or identify suspected dementia in nursing home residents. Published literature lacks details about the specific tools used and how professionals use and perceive them in practice. The aim of this study is to better understand cognitive screening roles performed by nursing home social service professionals and how they view their use and efficacy.Methods: An online survey was administered to all 230 nursing homes in the US state of Alabama between October 2021 and March 2022. Fifty-three social service professionals who conduct resident cognitive screenings responded to the survey.Results: In addition to completing the US-mandated Brief Interview of Mental Status (BIMS) quarterly, 75% of participants reported using additional tools, most notably the Mini Mental Status Examination (MMSE). Participants reported using different tools for varied purposes. Those who used both the BIMS and MMSE rated the BIMS significantly higher on ease and time to administer while rating the MMSE higher on reliability and validity. Although most participants reported high levels of confidence using the tools, over half of participants indicated interest in further training in cognitive assessment tools.Discussion: Findings provide evidence regarding who administers nursing home cognitive screenings, which tools are used, and their experiences using those tools. Participant responses reveal the value of using multiple screening tools for improved detection of cognitive status and decline for residents as well as a need for additional training in cognitive assessment. Findings also suggest that the primary tool used for cognitive screening may be quick and easy to use at the expense of perceived reliability and validity. Further evaluation of nursing home cognitive assessment is needed.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"33 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142269366","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":"Integrating lived experience to develop a tailored sleep intervention for people living with dementia and carepartners","authors":"Aimee D Brown, Jasmine Dowling, Sumedha Verma, Rosemary Gibson, Tom Valenta, Ann Piestch, Marina G Cavuoto, Susan M McCurry, Bei Bei, Michael Woodward, Melinda L Jackson, Prerna Varma","doi":"10.1177/14713012241282769","DOIUrl":"https://doi.org/10.1177/14713012241282769","url":null,"abstract":"ObjectivesSleep disturbances are highly prevalent and have adverse health consequences for both people living with dementia and their carepartners. Despite this, they are under-addressed caregiving settings. This study aimed to explore these sleep disturbances and co-design a multimodal sleep intervention for people living with dementia and their carepartners.MethodsWe conducted two focus groups and five semi-structured interviews ( n = 4 people living with dementia, n = 6 carepartners). Active involvement of community advisors was sought throughout the design, development, and facilitation phases. Reflexive thematic analysis was used to explore sleep-related experiences and receive feedback to shape intervention development.FindingsPeople living with dementia reported disruptions to sleep and circadian rhythms, including sleep disturbances and confusion between day and night. Multiple sleep challenges were encountered by carepartners including insomnia, hypervigilance, and daytime impairment. The proposed sleep intervention was received positively, with significant insights emphasising the need for a multimodal toolkit approach, adaptation of the intervention across different dementia stages, and a focus on tailoring the program to carepartners.ConclusionSleep interventions for caregivers and care-recipients should target both sleep and daytime functioning to ensure holistic support. Participants were receptive towards time-friendly, online, multimodal sleep interventions that combine cognitive behaviour therapies, light therapy, mindfulness, and exercise elements.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"60 1","pages":"14713012241282769"},"PeriodicalIF":0.0,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142222682","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":"Book Review for ‘Dignity for Deeply forgetful people: How caregivers can meet the challenges of Alzheimer's Disease by Stephen post","authors":"Lily Haopu Ren, Lillian Hung","doi":"10.1177/14713012241265268","DOIUrl":"https://doi.org/10.1177/14713012241265268","url":null,"abstract":"","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"75 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141872281","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":"Book Review: Ageing, dementia and time in film – Temporal performances","authors":"Robyn Dowlen","doi":"10.1177/14713012241253893","DOIUrl":"https://doi.org/10.1177/14713012241253893","url":null,"abstract":"","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"139 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140939018","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":"Book review: The loss of small white clouds: Dementia in contemporary performance","authors":"Meghánn Catherine Ward","doi":"10.1177/14713012241253132","DOIUrl":"https://doi.org/10.1177/14713012241253132","url":null,"abstract":"","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"32 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140939019","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}