Dementia最新文献

{"title":"A qualitative study of the benefits and challenges of different models of extra care housing for residents living with dementia","authors":"Rebecca Oatley, Teresa Atkinson","doi":"10.1177/14713012241249794","DOIUrl":"https://doi.org/10.1177/14713012241249794","url":null,"abstract":"Extra care housing (ECH) is a type of housing with care and support designed to enable older people to age in place. Approximately one fifth of residents living in ECH are living with dementia and yet, there remains gaps as to how best to support people to live well with dementia in the context. ECH stock across the United Kingdom (UK) includes a diverse range of options that can be grouped into integrated, specialist and separated accommodation. Integrated models involve residents with dementia living alongside residents without dementia. Specialist ECH offer accommodation exclusively for people living with dementia. Separated models offer a separate area for residents with dementia within a larger, integrated site. How these different models work for residents living with dementia is little known and has remained a significant gap in knowledge that impairs both professionals and people living with dementia when choosing housing and care. This paper reports on findings from a large study of residents living with dementia in ECH. The focus is on the potential benefits and challenges of different models of provision. Data were generated from interviews with 100 participants (residents, family members, staff, and adult social care professionals) at eight case study sites across England. Findings demonstrated that there are potential benefits and challenges within each model, but the limited diversity of stock limits choice. Multiple variables beyond the model of provision affect the lived experience, meaning that there is no universal model of optimal support. Rather, the approach and resources of each site is more important than the model of provision. Suggestions for future research directions are considered.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"16 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140830513","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":"Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future.","authors":"Jaqueline Damant, Paul Freddolino, M. Dangoor, Bo Hu, Derek King, R. Wittenberg","doi":"10.1177/14713012241249793","DOIUrl":"https://doi.org/10.1177/14713012241249793","url":null,"abstract":"OBJECTIVES\u0000Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer.\u0000\u0000\u0000METHODS\u0000Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of - and barriers to - using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education).\u0000\u0000\u0000RESULTS\u0000Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants' ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia's independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes.\u0000\u0000\u0000CONCLUSIONS\u0000Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"1 6","pages":"14713012241249793"},"PeriodicalIF":0.0,"publicationDate":"2024-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140658399","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 with dementia: Exploring the intersections of culture, race, and dementia, stigma.","authors":"Karen Lok Yi Wong, Granville Johnson, Deborah O'Connor","doi":"10.1177/14713012241249796","DOIUrl":"https://doi.org/10.1177/14713012241249796","url":null,"abstract":"Research documents the presence of stigma and discrimination as key components in the lived experience of dementia. However, to date, there is limited understanding regarding how social location, particularly as it relates to culture and race, may shape this experience of stigma and discrimination. In this qualitative exploratory study, personal interviews were held with ten Chinese Canadians living with dementia focused on better understanding how culture, race, and dementia stigma influence their experiences. From the onset, themes related to stigma and discrimination were woven into the participants' stories about living with dementia. Consistent with other research, all participants described an increased sense of vulnerability and invisibility related to how both they and others responded to their diagnosis of dementia. Participants also provided examples of how this experience of stigma was compounded by culture, race, and immigration status. Importantly, these acts of stigma and discrimination were both externally and internally imposed, resulting in feelings of lack of safety and insecurity. This research draws attention to the increased vulnerability that accompanies a diagnosis of dementia and illustrates how this may be heightened by one's culture and racism.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"24 1","pages":"14713012241249796"},"PeriodicalIF":0.0,"publicationDate":"2024-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140659645","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":"Implementing global positioning system trackers for people with dementia who are at risk of wandering.","authors":"Mike Doyle, Emmanuel S Nwofe, C. Rooke, Kalyan Seelam, John Porter, David Bishop","doi":"10.1177/14713012241248556","DOIUrl":"https://doi.org/10.1177/14713012241248556","url":null,"abstract":"OBJECTIVE\u0000The main aim of this study was to evaluate the feasibility and acceptability of using a GPS tracker to mitigate the risks associated with wandering for people with dementia and those caring for them and further evaluate the impact of trackers in delaying 24-hour care and the potential for reducing the involvement of support services, such as the police, in locating patients.\u0000\u0000\u0000METHODS\u0000We recruited forty-five wearers-carers dyads, and a GPS tracker was issued to each participant. Dyads completed pre-and post-outcome questionnaires after six months, and a use-log of experiences was maintained through monthly monitoring calls. At six months, focus groups were conducted with 14 dyads where they shared ideas and learning. Data analyses were performed on outcome questionnaires, use-log analysis, and focus groups discussion.\u0000\u0000\u0000RESULTS\u0000A 24% (N = 14) attrition rate was recorded, with 76% (N = 34) of the participants completing pre- and post-outcome questionnaires, of which 41% (N = 14) attended four focus group meetings. Participants reported enhanced independence for wearers as fewer restrictions were placed on their movements, peace of mind and reduced burden for the carers with less need to involve police or social services, and delays in 24-hour care.\u0000\u0000\u0000CONCLUSION\u0000The results supported the feasibility of routine implementation of GPS trackers in dementia care with clear guidance, monitoring and support to family carers on safe use. This could delay admission into 24-hour care as wearers and carers have a greater sense of safety and are better connected should help be required. Studies with larger sample sizes, diverse participants and health economic analysis are needed to develop the evidence base further ahead of the routine implementation of GPS trackers in health and social care services.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"45 10","pages":"14713012241248556"},"PeriodicalIF":0.0,"publicationDate":"2024-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140672868","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 impact on employment and education of caregiving for a family member with young onset dementia: A scoping review","authors":"Kristina M Kokorelias, Nirusa Nadesar, Katherine Bak, Jennifer Boger, Louise Nygård, Anna Mäki-Petäjä-Leinonen, Ann-Charlotte Nedlund, Arlene Astell","doi":"10.1177/14713012241247339","DOIUrl":"https://doi.org/10.1177/14713012241247339","url":null,"abstract":"Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of ‘decision-making’ was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified ‘Guidance for Researchers To Support Caregivers’. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"100 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140615326","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 role and impact of therapeutic counselling on the emotional experience of adults living with dementia: A systematic review","authors":"Gill Mathews, Xiaoyang Li, Heather Wilkinson","doi":"10.1177/14713012241233765","DOIUrl":"https://doi.org/10.1177/14713012241233765","url":null,"abstract":"Introduction There is limited psychological support available to help people living with dementia to deal with the emotional consequences of their condition. Anxiety and depression are commonly experienced in this population, yet the use of counselling and psychotherapeutic interventions is not well documented. Aim This systematic review sought to understand the current knowledge on the role and impact of therapeutic counselling on the emotional experience of adults living with dementia. Methods Qualitative and quantitative research designs were accepted for review. A comprehensive search of the main biomedical, nursing and other specialist databases was performed to access articles published between 2015 and 2022. Trial registers and academic journals were also searched. 43 original studies were included: qualitative ( n = 15); RCTs ( n = 9); other designs ( n = 19); plus eight systematic reviews. Results The majority of studies were conducted in Europe, the United Kingdom in particular, although a range of countries from across the globe were represented. The combined evidence from the different study designs suggest a range of ways that people living with different stages of dementia can participate in, and gain emotional benefit from, therapeutic counselling. Key themes identified: (1) The emotional and well-being benefits of therapeutic counselling; (2) No one size fits all - relational and tailored approaches driven by person-centred values; (3) Training, supervision and building community for counsellors; (4) Involvement of people with dementia in therapeutic interventions. Conclusions Our findings from this systematic review show that different therapeutic approaches have been tested with people at different stages of a dementia diagnosis. The results suggest the value of therapeutic counselling as a supportive medium to help with the processing and coping of difficult emotions and feelings across the trajectory of a dementia illness.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"8 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140617815","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 change of intimate relationship between people with Alzheimer’s disease and their adult child caregivers: An interpretative phenomenological analysis","authors":"Jihui Lyu, Wenjing Jiang, Qian Xiong, Wenjie Li, Mo Li, Yueqing Hu, Dongmei Jia, Wenchao Gao, Haiyan Mu, Zongjuan Ma","doi":"10.1177/14713012241245482","DOIUrl":"https://doi.org/10.1177/14713012241245482","url":null,"abstract":"This study aims to explore the change of intimate relationship between people with Alzheimer’s disease and their adult child caregivers as the disease progresses. Twelve adult child caregivers were recruited through purposive sampling. Explanatory phenomenological analysis was conducted to analyse data collected by semi-structured in-depth interviews. This study found a dynamically changing relationship between adult child caregivers and their parents with Alzheimer’s disease during care giving that evolved with the progress of the disease. The relationship was the most intimate in the middle stage of the disease for most caregivers and a new reciprocal relationship developed due to caregiving. Caregivers experienced different degrees of self-growth when providing care, though caregiver burdens were common. The positive experience and perception of caregivers were important for improving the quality of life for adult child caregivers of people with Alzheimer’s disease.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"24 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140587966","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":"Participation in everyday activities among young adult relatives of parents with dementia – A qualitative study","authors":"Marianne Lyngmose Nielsen, Stina Bjørnskov, Rikke Gregersen, Louise Møldrup Nielsen","doi":"10.1177/14713012241245470","DOIUrl":"https://doi.org/10.1177/14713012241245470","url":null,"abstract":"Previous research has shown that young adult relatives of parents with dementia experience strain through increased responsibility and changed relationships in the family with potential consequences for their emotional, mental and physical well-being. Less is known about how young adult relatives experience their participation in everyday activities typically associated with young adulthood and how their participation is affected by the parent´s dementia. This study explores young adult relatives’ experiences of participation in everyday activities and how their participation was affected by having a parent with dementia. The study followed a qualitative, descriptive approach. Semi-structured individual interviews with 11 young adult relatives (aged 21 – 31) of parents with dementia were conducted. The interviews were analysed using Kirsti Malterud’s iterative cross case analysis method ‘Systematic text condensation’. The analysis identified three categories: Dilemmas of choosing, Not having a choice and Reversal of roles. The young adult relatives experienced dilemmas and constraints regarding participation in everyday activities usually related to young adulthood. They navigated situations where they were to choose between the parent with dementia and their own everyday activities and they often downgraded or cancelled participation in own activities related to leisure time, school, job and career. Moreover, their participation seemed affected by chores and responsibilities resulting in a lack of energy leading them to forego social activities in particular or change their choice of activities. The young adult relatives need help and support in their everyday lives. Health care professionals are encouraged to focus on relieving them from some of the responsibilities and practical tasks enabling them to live their own lives as young adults, while being part of the family and contributing towards the responsibilities and tasks with which they can cope.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"21 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140577888","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":"Do clinical guidelines support person-centred care for women affected by dementia: A content analysis","authors":"Nevetda Gengeswaran, Alec Brandwood, Natalie N Anderson, Jessica U Ramlakhan, Anna R Gagliardi","doi":"10.1177/14713012241244982","DOIUrl":"https://doi.org/10.1177/14713012241244982","url":null,"abstract":"BackgroundDementia disproportionately affects women including persons living with dementia and caregivers. Person-centered care, rather than disease-focused, is recommended to improve care for affected persons including caregivers. General practitioners play a central role in dementia care but find it challenging due to inadequate training. The study aimed to assess if and how dementia guidelines provide clinicians with guidance on person-centred care for women affected by dementia.MethodsWe searched for publicly available English-language guidelines on the overall management of dementia in MEDLINE, EMBASE and the Guidelines International Network repository. We employed deductive and summative content analysis, and categorized person-centered care guideline content based on established frameworks, and conveyed our results using summary statistics, text, and tables.ResultsWe reviewed 15 guidelines published from 2006 to 2020 in eight countries. Few (4, 23%) involved persons living with dementia or caregivers in guideline development. Regarding general person-centred care, guidelines mostly addressed the domains of exchange information (93%), share decisions (93%), enable self-management (93%) and address emotions (87%), while few offered content on manage uncertainty (33%) or foster a healing relationship (13%). Regarding dementia-specific person-centred care, most guidelines addressed intersectionality (tailoring care for diverse characteristics) (80%), but few included content on the domains of quality of life (67%), dignity (53%) or sex/gender issues (20%). Even when mentioned, the guidance was typically brief. We identified 32 general and 18 dementia-specific strategies to achieve person-centered care by compiling information from these guidelines.ConclusionsThis study identified inconsistent and insufficient guideline content on person-centred care for women with dementia. Compiled strategies for achieving person-centred care could be used by developers to enhance existing and future dementia guidelines; and inform the development of policies or programs, education, tools for clinicians, and quality improvement measures for evaluating dementia care. Future research is crucial for promoting person-centred dementia care for women living with dementia.","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"66 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140588245","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: Joan Colnbrook's Dementia Painting","authors":"Meagan Ody, Pamela Roach","doi":"10.1177/14713012241243182","DOIUrl":"https://doi.org/10.1177/14713012241243182","url":null,"abstract":"","PeriodicalId":517400,"journal":{"name":"Dementia","volume":"142 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140325757","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}