Dementia-International Journal of Social Research and Practice最新文献

{"title":"Family carers’ expectations regarding dementia care services and support in China: A qualitative study","authors":"Wenhong Zhao, M. Wu, H. Petsky, W. Moyle","doi":"10.1177/14713012221106817","DOIUrl":"https://doi.org/10.1177/14713012221106817","url":null,"abstract":"Introduction In China, approximately 85% of people with dementia are cared for by family carers. However, limited research has been conducted to examine family carers’ expectations regarding what they perceive is required for optimal care. Therefore, this study aimed to explore family carers’ expectations regarding dementia care support and services in China. Methods A qualitative study employing semi-structured interviews, with data collected from three public tertiary hospitals where the primary family carers of people with dementia (N = 21) were recruited from May to December 2019. Purposive maximum variation sampling was used to recruit participants. Data was interpreted both inductively and deductively using thematic analysis. Findings Four themes were identified. The family carers reported minimal support regarding dementia care, and they held little hope of receiving support. However, most carers expressed their limited expectations, such as financial support from the government and respite care services from the community. Carers believed that care was their duty, and some of them were unwilling to move their relative with dementia into a nursing home. Conclusion Health and the three-tier long-term care systems in China are inadequately prepared for the challenges of dementia care, suggesting the need to develop health and social services and improve support for family carers to enable improved care for people with dementia.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"2004 - 2019"},"PeriodicalIF":2.4,"publicationDate":"2022-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49303777","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The experience of being a spouse of a person with dementia in respect to their marital relationship in Japan","authors":"Mika Musgrave-Takeda, M. Ishibashi, H. Masaki","doi":"10.1177/14713012221107529","DOIUrl":"https://doi.org/10.1177/14713012221107529","url":null,"abstract":"Background and Purpose While the marital relationship with partners with dementia has an impact on spousal carers’ well-being, the spousal understandings or expectations of their marital relationship have not been fully identified. As the marital relationship is formed by individual backgrounds including society, culture and psychological status, the aim of this study was to identify the experience of being the spouse of a person with dementia in the context of their marital relationship. The study was conducted in Japan. Research Design To identify spousal experience of being, Heideggerian perspectives of interpretive phenomenology were applied. Study Sample Seven couples aged over 65 years, each comprising one partner with dementia who received home nursing, and their spouse participated in this study. Data Collection The couples were observed, and semi-structured interviews were conducted. Data Analysis Interpretive data analysis based on the Hermeneutic circle of Heideggerian perspectives was applied. Results In the findings, the experience of being a spouse, contextualised by spousal understandings of marital relationship, was formed through seven themes. The main context for spousal understanding of their marital relationship was helping each other as husband and wife, and this relationship was seen as natural and unchanging. It reflected on spousal potentiality of being, that is, living together indefinitely as before. Spouses tried to provide suitable care for their partners using memories while preserving a sense of identity, maintaining external relationships and accepting unanticipated internal responsibility. Conclusions In conclusion, fulfilling unmet needs could help spouses to ease intense care load, which re-acknowledges their own and their partner’s identity, and their relationship by reminiscing their past.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"2020 - 2034"},"PeriodicalIF":2.4,"publicationDate":"2022-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45973193","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using Journey Mapping to support staff, family members and allies of people with dementia to think and act differently during a care transition: The benefits and limits of care imagination","authors":"Louisa Smith, L. Phillipson","doi":"10.1177/14713012221097237","DOIUrl":"https://doi.org/10.1177/14713012221097237","url":null,"abstract":"Research methods are not just for data collection, but can also be engaged in to promote more immediate benefits for participants and to create social change. This paper reports on how journey mapping was used with staff and family members of people with dementia in a residential aged care facility in regional NSW, Australia. The study was conducted in the context of a care transition, where residents, including people with dementia moved from an existing site to another new facility. Care transitions are frequent yet difficult for people with dementia to negotiate, so it was important to predict their nature and understand what might make the move easier. We used an innovative visual method known as ‘journey mapping’ to engage 45 staff and 18 family members to inform supports for 30 people with dementia, who had been identified as needing additional support during the planned transition. The journey mapping process was useful for fostering the caring imagination and encouraging active and creative planning around change for the people with dementia. It also highlighted the entrenched inequalities in the aged care sector, where poorly paid staff wanted to enact broad ranging supports but felt unsupported to do so. In other words, to improving and re-imagining transitional care for people with dementia requires structural and systemic change rather than just localised re-imaginings. [245]","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1873 - 1889"},"PeriodicalIF":2.4,"publicationDate":"2022-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42532220","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"On becoming a dementia-friendly community: An empirical study of the individual factors that predict openness towards dementia-friendly communities","authors":"Lauren Parkinson, K. Sullivan, K. Graham","doi":"10.1177/14713012221106328","DOIUrl":"https://doi.org/10.1177/14713012221106328","url":null,"abstract":"Background and objectives Evidence suggests that limited public awareness and dementia-related stigma can create barriers to community inclusiveness. This study explored the relation between public knowledge of dementia, attitudes towards people with dementia, experience with dementia and openness towards dementia-friendly communities. Research design and methods Two-hundred and twenty-nine members of the public completed a cross-sectional online survey with three established measures [Alzheimer’s Disease Knowledge Test, Attitudes Towards People with Dementia scale and Understanding of Health Problems survey] and one exploratory scale [Openness Towards Dementia-Friendly Communities]. An existing ‘mild’ dementia vignette was used to evaluate dementia recognition. Factors contributing to correct dementia recognition (knowledge, exposure to dementia, education and gender), worry about developing dementia (knowledge, exposure and respondent age), and openness towards dementia-friendly communities (knowledge, exposure and attitudes) were examined through group comparisons and a multiple linear regression. Results Consistent with the literature, the respondents had poor knowledge, reasonably good dementia recognition, and mostly positive attitudes towards people with dementia. None of the proposed factors were significantly associated with correct dementia recognition, and only gender was significantly associated with dementia worry. Knowledge and attitudes towards people with dementia (not exposure) were significant independent predictors of openness towards dementia-friendly communities. Discussion and implications The expansion of dementia-friendly communities will require further investment in awareness-raising initiatives to improve dementia knowledge and attitudes in the community. This study shows the importance of these factors in the broader community’s openness towards dementia-friendly communities.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1971 - 1986"},"PeriodicalIF":2.4,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44210976","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transcending inequities in dementia care in Black communities: Lessons from the maximizing independence at home care coordination program","authors":"D. Sloan, D. Johnston, C. Fabius, Tabitha Pyatt, Inga M Antonsdottir, Melissa Reuland, Morgan Spliedt, Quincy M. Samus","doi":"10.1177/14713012221085808","DOIUrl":"https://doi.org/10.1177/14713012221085808","url":null,"abstract":"Purpose We examine care partners’ experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia. The goal of the study was to understand 1. the unique dementia-related needs of Black care partners and barriers and challenges to caregiving experienced within the Black community, 2. perceived benefits of the MIND program, and 3. ways to improve the program and make it more culturally responsive to the Black community. Method We conducted three focus groups totaling 20 care partners of people living with dementia; who participated in the MIND intervention (2014–2019); all Black/African American and English speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using inductive approaches. Findings Participants noted three overarching themes related to dementia care needs and challenges in the Black community: difficulty finding and accessing dementia information and relevant services and supports; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding MIND at home program benefits, four themes emerged: 1. perceived to help locate resources (formal and informal); 2. provided care partners an opportunity for socialization and interaction; 3. included comprehensive assessments and helpful linked information; and 4. resulted in a “much needed break for care partners.” Increased diversity of the MIND program personnel, greater clarity and consistency in MIND program promotion, and better communications were themes for how the program could be improved. Conclusion Care partners participating in the MIND program perceived common benefits in aspects related to care for the persons living with dementia as well as benefits to themselves, believed the program addressed important challenges and gaps in education, services, and social support, and could be enhanced in its delivery and cultural responsiveness.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1653 - 1668"},"PeriodicalIF":2.4,"publicationDate":"2022-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48978159","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Spousal Caregiver Resilience in A Nutshell: A Directed Content Analysis in the Context of Dementia Caregiving in Vietnam","authors":"T. Nguyen","doi":"10.1177/14713012221101866","DOIUrl":"https://doi.org/10.1177/14713012221101866","url":null,"abstract":"Objectives This study aims to define resilience of spousal family caregivers for older adults living with dementia in the Vietnamese context. Methods A directed content analysis was conducted on 22 interview transcripts, including nine follow-up interviews, of a sub-sample of 13 spousal caregivers, drawn from a larger study with family caregivers for relatives with dementia in a hospital in Vietnam. The study started with key categories from the theory of the unifying model of resilience in dementia caregiving to guide the analysis process, while new codes and categories were identified during this process. Findings The study results show a revision and extension of this model by introducing a revised model with newly developed sub-categories under the five revised key categories of adversity, resilience processes, outcomes, internal resources, and external resources. Conclusions The results provide evidence for the development of resilience-based interventions and services for spousal caregivers in their contexts.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1955 - 1970"},"PeriodicalIF":2.4,"publicationDate":"2022-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41993798","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Book Review: Thank You For Giving Me An Interesting Life: A Memoir of a Long, Slow, Loving Journey of Goodbye – A Review","authors":"Amrutha Sivadasan, Luke Gerard Christie","doi":"10.1177/14713012221103071","DOIUrl":"https://doi.org/10.1177/14713012221103071","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"2095 - 2097"},"PeriodicalIF":2.4,"publicationDate":"2022-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43742823","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of music interventions on sleep in people with dementia: A systematic review","authors":"C. Mu, Soomi Lee, S. Boddupalli, H. Meng","doi":"10.1177/14713012221096986","DOIUrl":"https://doi.org/10.1177/14713012221096986","url":null,"abstract":"Poor sleep health is a risk factor for and a common symptom of dementia. Music has been shown to improve sleep across a wide range of clinical and community populations. However, it is unclear whether and to what extent music interventions may also help alleviate sleep problems in people with dementia. This systematic review is the first review examining the effects of music on sleep outcomes among people with dementia. In accordance with PRISMA guidelines, we extracted 187 articles from nine databases (Academic Search Premier, Ageline, APA PsycArticles, PsycINFO, CINAHL, Embase, PubMed, Scopus, and Web of Science). Eight studies were eligible for this systematic review (Range sample sizes: 1–59 people with dementia). Results revealed that assessments of sleep in the current literature were limited and mainly focused on sleep duration, subjective sleep quality, or nighttime sleep disturbances. Intervention delivery, music selection, and findings varied. Positive effects of music on sleep outcomes were observed in six out of the eight studies (75%), specifically there were decreases in nighttime sleep disturbances, increases in daytime alertness, and improvements in sleep quality. The remaining two studies found no statistically significant change in sleep outcomes (i.e., daytime sleepiness and quality). Study limitations included small sample sizes and the use of proxy reporters (e.g., caregiver, researcher, blinded clinician) which may reduce the accuracy of the sleep measures. Future research may want to incorporate objectively measured sleep to better understand the role of sleep in dementia care. More research is needed to determine whether music interventions are effective in improving sleep in people with dementia and whether improvements in sleep can slow the progression of dementia.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"2053 - 2071"},"PeriodicalIF":2.4,"publicationDate":"2022-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42272320","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dementia-friendliness – Inclusion or exclusion: A critical discourse analysis","authors":"Tania Ea Hansen, M. Andresen, Jeanette Præstegaard, T. Tjørnhøj‐Thomsen, B. Nørgaard","doi":"10.1177/14713012221101240","DOIUrl":"https://doi.org/10.1177/14713012221101240","url":null,"abstract":"This article explores how individuals with dementia and their relatives discursively construct dementia-friendliness in a situation where different definitions of this term exists. Thirteen semi-structured interviews were conducted, including seven individual interviews with people living with dementia. The remaining six interviews consisted of three interviews with the relatives of a person with dementia and three with married couples of which one were diagnosed with dementia. Notes taken by the first author during 6 months of fieldwork at a day centre and a drop-in centre for people with dementia and their families were used to supplement the interviews. Critical discourse analysis provides an analytical tool for revealing the discourses constructing dementia-friendliness. The analysis revealed that people with dementia and their relatives draw on the three discourses of sameness, security and care and autonomy during their attempts to construct dementia-friendliness. The ensuing discursive battles over dementia-friendliness appear to constitute a tightrope walk between the inclusion and exclusion of people with dementia, which underscores the importance of including the voices of people living with dementia when dementia-friendly initiatives and communities are developed.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1933 - 1954"},"PeriodicalIF":2.4,"publicationDate":"2022-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45247760","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The life of people with dementia who have multiple children in rural China: A phenomenological case study","authors":"Juan Yang, Xiubin Zhang, B. McCormack, J. Andrew","doi":"10.1177/14713012221089163","DOIUrl":"https://doi.org/10.1177/14713012221089163","url":null,"abstract":"Objectives The aim of this study was to explore the lived experiences of a rural dwelling person living with dementia and his children. Using a phenomenological case study methodology, it aims to explore the health-related and personal dilemmas faced by multiple family members who provide care to a person living with dementia in a rural area in Henan, China. The study also investigates the barriers to quality dementia care in this kind of setting in order to inform the relevant stakeholders. Method A phenomenological case study was designed for this study. The case that formed the focus of the research included a person living with dementia and multiple family members. Semi-structured in-depth interviews were undertaken with the five family members of the person living with dementia. Smith’s interpretative phenomenological analysis was used for data analysis. Findings Three major themes were identified: (1) Dementia as a normal ageing process or a bad disease; (2) Commitment to and challenges of family caring and (3) Life in rural areas. Conclusion With the development of China’s economy and its social-cultural changes, traditional home-based care provision in rural areas of China is being challenged for people with dementia who have multiple children. It suggests that there needs to be an exploration into providing more appropriate care for people with dementia living in rural settings. It also suggests that more support is required to increase dementia awareness and to improve the quality of life of people with dementia and their families in rural China.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1669 - 1681"},"PeriodicalIF":2.4,"publicationDate":"2022-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43113622","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}