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

{"title":"Embedding patient and public involvement in dementia research: Reflections from experiences during the ‘Journeying through Dementia’ randomised controlled trial","authors":"Jules Beresford-Dent, K. Sprange, G. Mountain, Clare Mason, J. Wright, C. Craig, L. Birt","doi":"10.1177/14713012221106816","DOIUrl":"https://doi.org/10.1177/14713012221106816","url":null,"abstract":"Background The involvement of people with a diagnosis of dementia in patient and public involvement and engagement (PPIE) in research is an emerging field in the delivery of studies. Researchers need to understand and use the learning derived from various projects so that this growing body of knowledge can be applied in future research. Objective To embed PPIE throughout a randomised controlled trial of a psychosocial intervention called Journeying through Dementia. We identify and discuss the approaches to involvement that worked well and those where improvements were indicated. Design The Guidance for Reporting Involvement of Patients and the Public Short Form (GRIPP2-SF) is used to describe and critically appraise the approaches taken and the impact of PPIE involvement upon study processes, the study team and those people with dementia and their supporters who acted as advisors. Findings The involvement of people with a diagnosis of dementia and supporters as study advisors improved the accessibility and relevance of the research for people living with dementia. It also highlighted issues that researchers may have otherwise overlooked. Successful engagement of people with dementia and their supporters in the study was associated with staff skills and particularly use of techniques to scaffold meaningful involvement, as well as participants’ memory and cognitive capacity. However, embedding robust and meaningful involvement processes required significant time and resources. Discussion We propose that certain research processes need to be adapted to be accessible and appropriate for people living with dementia. Recruitment of PPIE advisors needs to reflect population diversity. There also needs to be greater parity of voice between people with lived experience of dementia and researchers. These steps will increase the impact of PPIE in research and improve the experience for those who volunteer to be PPIE advisors.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1987 - 2003"},"PeriodicalIF":2.4,"publicationDate":"2022-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41661953","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":"Analysing the use of music to facilitate social interaction in care home residents with dementia: Narrative synthesis systematic review","authors":"Bryony Waters, L. Sousa, M. Orrell, O. McDermott","doi":"10.1177/14713012221100625","DOIUrl":"https://doi.org/10.1177/14713012221100625","url":null,"abstract":"Introduction Individuals with dementia residing in care homes can rely heavily on care staff to access activities and meaningful interactions. Previous research suggests that care home interactions can be short, fragmented and task-orientated due to staff workload and residents’ language impairments. However, music has the potential to be an alternative communication form that remains intact in the later stages of dementia. This systematic review aims to explore how care home music interventions can facilitate social interactions. Methods A narrative synthesis was conducted to explore the mechanisms behind how and why care home music intervention facilitate social interactions. The four-element framework guided analysis; (1) Developing a theory, (2) Developing a preliminary synthesis, (3) Exploring relationships, (4) Assessing robustness. Findings The final synthesis included 23 articles. The studies consisted of music therapy sessions, personalised music listening, structured music singing or instrument playing sessions and music therapeutic care. Despite the difference in music interventions, most studies reported an increase in residents’ sociable verbal and non-verbal communication and a decrease in unsociable communication. Music interventions allowed residents to reminisce, express themselves, focus and connect with others. Discussion The studies highlighted music interventions are accessible to all residents with dementia despite their impairments. The adaptability allows individuals to continue to connect and express themselves even when language deteriorates. More research is needed into the enablers and barriers to implementing interventions into practice, as this systematic review has highlighted that some form of music intervention for all residents can be highly beneficial. Care homes use of music could increase social interactions and meaningful activities.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"2072 - 2094"},"PeriodicalIF":2.4,"publicationDate":"2022-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45962483","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}