Dementia (London, England)最新文献

{"title":"Exploring the interplay between dementia, multiple health conditions and couplehood: A qualitative evidence review and meta-ethnography.","authors":"Rosie Dunn, Emma Wolverson, Andrea Hilton","doi":"10.1177/14713012231214017","DOIUrl":"10.1177/14713012231214017","url":null,"abstract":"<p><p><b>Background:</b> On average, people with dementia live with 4.6 additional health conditions. Additionally, two thirds of carers of people with dementia are spouses, and are also likely to live with multimorbidity, given that older age is strongly associated with an increase in health conditions. Consequently, living with dementia and multimorbidity is often a shared experienced as a couple. However, research has not explored how living with both dementia and multimorbidity may impact on couplehood. <b>Method:</b> We conducted a qualitive evidence review using a meta-ethnographic approach, to answer the following question: In what way (if any) does living with dementia and multimorbidity impact on couplehood? No papers were found on couplehood, dementia and multimorbidity, therefore the review consists of a meta-synthesis of couples' experiences of living with dementia in relation to couplehood, with an additional search for any data related to health within the qualitative findings. <b>Findings:</b> Two major reciprocal themes and five subthemes were identified from the 14 study findings. 1. Change and adjustment in the relationship, which included themes around a sense of 'togetherness', change in roles and identity and developing shared coping strategies and 2. Commitment, which was encapsulated by themes on unconditional love and commitment to wedding vows. Health-related findings were limited but included the impact on emotional wellbeing and how other health conditions, rather than dementia, were attributed to a loss in physical sexual intimacy. <b>Conclusion:</b> This review found that couplehood was threatened when dementia symptoms progressed and couples experienced feelings of loss of independence and identity. However, a strong foundation of commitment, love and loyalty to each other developed over the course of the relationship, was the 'glue' that helped couples face dementia together. However, further research is needed to explore couples' experiences of living with both multimorbidity and dementia in relation to couplehood in order to develop holistic, relationship-centred interventions.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"41-68"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134650628","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":"Competency development for a volunteer navigation program to support caregivers of people living with dementia: A modified e-Delphi method.","authors":"Madison Huggins, Gloria Puurveen, Barb Pesut, Kathy Rush, Caitlin McArthur","doi":"10.1177/14713012231216768","DOIUrl":"10.1177/14713012231216768","url":null,"abstract":"<p><p>Caregivers of people living with dementia are pillars of the care community. Providing them with adequate support throughout their caregiving journey is essential to their quality of life and may also contribute to improving the care of people living with dementia. Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging) is a volunteer-led navigation program that provides support to older adults with life-limiting illnesses who are living in the community. However, Nav-CARE does not provide support directly to caregivers of people living with dementia. To adapt Nav-CARE to support caregivers, we needed to establish caregivers' needs and the competencies volunteer navigators should be trained in to support caregivers to meet these needs. To do so, a modified e-Delphi method was utilized, which consisted of administering three sequential questionnaires to a panel of 35 individuals with expertise in a variety of dementia related domains. Through this, two final lists of 46 caregivers' needs and 41 volunteer competencies were established to inform the development of volunteer navigator training curriculum. Findings suggest that trained volunteer navigators may be able to support caregivers of people living with dementia throughout the disease trajectory and can be used to inform the development of future dementia navigation programs.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"69-90"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10797849/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136400533","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Vascular cognitive impairment: When memory loss is not the biggest challenge.","authors":"Sara Aj van de Schraaf, Merel F Smit, Majon Muller, Cees Mpm Hertogh, Hanneke Fm Rhodius-Meester, Eefje M Sizoo","doi":"10.1177/14713012231214299","DOIUrl":"10.1177/14713012231214299","url":null,"abstract":"<p><strong>Objectives: </strong>Vascular cognitive impairment is the second most common type of cognitive impairment. Care needs of community-dwelling people with vascular cognitive impairment and their caregivers have not been thoroughly studied. Therefore, we aimed to explore care needs of people with vascular cognitive impairment and their family caregivers.</p><p><strong>Design: </strong>A qualitative interview study.</p><p><strong>Setting and participants: </strong>Participants were purposefully sampled community-dwelling people with vascular cognitive impairment and their family caregivers.</p><p><strong>Methods: </strong>Interviews were audiotaped and transcribed verbatim. Analysis and data collection followed an iterative process, until data saturation was achieved. We conducted 18 interviews (nine people with vascular cognitive impairment and nine caregivers), concerning 13 unique people with vascular cognitive impairment. We analyzed the data using inductive thematic analysis following the Braun & Clark method. The study was reported in accordance with the COREQ criteria.</p><p><strong>Findings: </strong>Five themes were identified in the care needs reported by people with vascular cognitive impairment and family caregivers: (1) Specific information need with subtheme (1A) No memory problem, no dementia? (2) Being respected as a person, (3) Differing concerns about the future, (4) The roles of the caregiver and (5) Decisiveness from professional healthcare.</p><p><strong>Conclusions and implications: </strong>The care needs of people with vascular cognitive impairment and their caregivers were affected by (a lack of knowledge about) the characteristic symptoms of this condition. Participants equated cognitive impairment or dementia to memory loss (\"Alzheimerization\"), although memory loss was not their biggest challenge. People with vascular cognitive impairment and caregivers preferred resolute and decisive healthcare professionals. These professionals activate the person with vascular cognitive impairment who lacks initiative and diminishe role conflict of the caregiver. Care for people with vascular cognitive impairment and their caregivers could be improved by providing tailored information, promoting awareness of neuropsychiatric symptoms, particularly apathy, and by healthcare professionals providing more guidance in decision-making.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"152-171"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10798009/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138300801","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cultural inclusivity and diversity in dementia friendly communities: An integrative review.","authors":"Eman Shatnawi, Genevieve Z Steiner-Lim, Diana Karamacoska","doi":"10.1177/14713012231206292","DOIUrl":"10.1177/14713012231206292","url":null,"abstract":"<p><p>People with dementia from culturally and linguistically diverse backgrounds often face poor health and social outcomes such as stigma, depression, and reduced help seeking behaviours. Dementia friendly communities have been shown to reduce stigma, and the gap in health and social outcomes for people impacted by dementia. Despite the large presence of established dementia friendly communities, their functioning in multicultural communities remains underexplored. The aim of this review was to identify the barriers and facilitators of cultural inclusivity to inform the development of a multicultural dementia friendly community. We systematically searched for academic and grey literature regarding existing and prospective age or dementia-friendly communities that engaged with culturally and linguistically diverse communities. Using the matrix method, data on the barriers and facilitators to engagement were extracted. Papers were analysed for common themes and findings were integrated in a narrative format. A total of 3,164 papers were identified, 11 of which met inclusion criteria. There were 6 dementia friendly communities in North America, 3 in Europe, 1 in Australia and 1 in Asia. Analyses revealed that barriers to cultural inclusivity were centered around the accessibility of services, sociocultural factors, and the environment, including issues such as low awareness of dementia and stigma, language barriers, isolation, and the inaccessibility of transport and buildings. Leveraging existing cultural leaders and social structures to target culturally and linguistically diverse populations and develop tailored dementia friendly initiatives were key facilitators. To foster cultural inclusivity in dementia friendly communities, a culturally specific lens that addresses these barriers and utilises facilitators must be applied from the design stage through to implementation and evaluation.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"2024-2046"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10644696/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49694799","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Needs of older people living with dementia in low and middle-income Asian countries: A scoping review.","authors":"J M Abdullah, Helen Courtney-Pratt, Kathleen Doherty, Sharon Andrews","doi":"10.1177/14713012231198952","DOIUrl":"10.1177/14713012231198952","url":null,"abstract":"<p><strong>Background: </strong>Population ageing in low and middle-income Asian countries is associated with increased prevalence of dementia. The proportion of people with dementia in countries such as Bangladesh and Thailand are increasing. People with dementia can have complex care and health service needs. If these needs are not adequately met, this can result in a decreased quality of life and burden on the health system. There is considerable research into the needs of people with dementia in high-income countries. However, research on the needs of people living with dementia in low and middle-income countries remains underexplored. The aim of this study was to review and summarise the literature on the health and social care needs of older people with dementia in low and middle-income Asian countries.</p><p><strong>Methods: </strong>Five online databases (PubMed, Scopus, Web of Science, CINAHL and PsycINFO) and google scholar were searched. The databases were searched using a selection of key words. PRISMA-ScR approach was followed in reporting the process.</p><p><strong>Key findings: </strong>We extracted eight studies related to the health and social care needs of people with dementia that met our inclusion criteria. From the available literature, needs were categorised across five categories: (i) social, cognitive, and mental health needs; (ii) physical needs; (iii) care and service needs; (iv) knowledge-related needs; and (v) spiritual care needs.</p><p><strong>Conclusion: </strong>While eight papers were located which discussed the needs of people with dementia across a range of domains, this review demonstrates a deficit in the current evidence-base about the health and social care needs of people living with dementia in low and middle-income Asian countries. Further research is needed to identify health and care needs of people with dementia and how these needs are being met.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1977-1993"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10644686/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10590151","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Role of Interacting and Learning Experiences on Public Stigma Against Dementia: An Observational Cross-Sectional Study.","authors":"Taiji Noguchi, Takeshi Nakagawa, Ayane Komatsu, Erhua Shang, Chiyoe Murata, Tami Saito","doi":"10.1177/14713012231207222","DOIUrl":"10.1177/14713012231207222","url":null,"abstract":"<p><p><b>Background:</b> Overcoming dementia stigma is a global challenge. Contact and education on dementia may be promising approaches for reducing public stigma; however, the current evidence is insufficient. This study examined the moderating factors associated with the public stigma against dementia, focusing on experiences of interacting with and learning about people with dementia. <b>Methods:</b> This cross-sectional study recruited 710 adults aged 20-69 years who were not involved in any medical or care work. Participants were recruited via a web-based questionnaire survey for a large internet survey agency's panel in Japan. In terms of the public stigma about dementia, four domains were assessed using a multidimensional assessment scale: personal avoidance, fear of labelling, person-centredness, and fear of discrimination. We compared the stigma scores according to the participants' experiences of interacting with people with dementia ('none', 'talking or activities together', or 'living together') and learning about dementia ('yes' or 'no'), adjusted for demographic and socioeconomic factors.<b>Results:</b> Compared with those without interaction experiences, those with experiences of talking or activities with people with dementia had lower personal avoidance (<i>p</i> = .001), fear of labelling (<i>p</i> = .026), and fear of discrimination (<i>p</i> = .031); those with experiences of living together with people with dementia had lower personal avoidance (<i>p</i> = .014) and fear of discrimination (<i>p</i> = .031). Compared with those without learning experiences related to dementia, those with such experiences had lower personal avoidance (<i>p</i> < .001) and higher person-centredness (<i>p</i> = .048).<b>Conclusions:</b> The findings suggest that the promotion of interaction with and learning about people with dementia may be important for addressing the public stigma.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1886-1899"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49685652","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":"A mixed method study exploring gender differences in dementia caregiving.","authors":"Vincent O Poisson, Roslyn G Poulos, Adrienne L Withall, Ann Reilly, Leanne Emerson, Claire M C O'Connor","doi":"10.1177/14713012231201595","DOIUrl":"10.1177/14713012231201595","url":null,"abstract":"<p><p>Few studies have investigated the experience of male carers of people with dementia and fewer specifically examined whether male and female carers of people with dementia differ in their approach to the caring role. As such, this research set-out to investigate whether male carers of people with dementia approach the caring role differently to female carers. Data from 167 survey participants (24 males and 143 females) were analysed using a mixed research methodology. Participants' demographics and scores on standardised burden and coping scales were analysed using linear regression. Participants' written responses to open-ended questions were analysed using thematic analysis anchored in theories of hegemonic masculinity. No significant gender differences were identified in carers' coping strategies or self-reported carer burden. However, qualitative analysis revealed strong thematic gender differences like: gendered barriers to help-seeking; gendered service preference; gendered considerations about residential care; gendered expression of burden; and themes of the absent son and exhausted daughter. This research identified that male carers of people with dementia approach help-seeking differently to female carers, typically focusing on addressing functional tasks and refraining from showing emotions, this despite reporting similar carer burden. Rapport building with male carers should start with conversations around functional issues rather than assessing the emotional impact of the caring role. The findings reinforce the need for more qualitative research into the unmet needs of male carers of people with dementia, to inform the design of male-friendly interventions which could facilitate timely access to services by male carers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1862-1885"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10644690/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41179693","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis.","authors":"Xueting Tang, Junqiao Wang, Bei Wu, Ann-Margaret Navarra, Xiaoyan Cui, Jing Wang","doi":"10.1177/14713012231193547","DOIUrl":"10.1177/14713012231193547","url":null,"abstract":"<p><strong>Background: </strong>The self-identity of persons with young-onset dementia (YOD) is affected by the disease progression. However, the lived experience of maintaining self-identity along the disease trajectory is understudied. This meta-synthesis integrated qualitative data on the challenges, coping strategies, and needs of persons living with YOD and how their experiences affected their self-identity over time.</p><p><strong>Methods: </strong>Four English (PubMed, Scopus, CINAHL, PsycINFO) and two Chinese (CNKI and Wanfang) electronic databases were searched for published literature peer-reviewed from the time of database inception to 2022. We used thematic analysis to extract and synthesize data from the literature concerning the long-term lived experiences of persons living with YOD.</p><p><strong>Results: </strong>A total of five peer-reviewed publications were eligible for inclusion in this meta-synthesis study. We identified four themes: (1) declining cognitive function and a prolonged diagnostic process threaten the self-identity of persons living with YOD, (2) struggling to accept the diagnosis of YOD and maintain self-identity, (3) maintaining self-identity and the normalcy of life through social support and person-centered care, and (4) living with YOD through self-development and self-identity reshaping at a later stage of the disease.</p><p><strong>Conclusions: </strong>Persons living with YOD experience challenges maintaining their self-identity throughout the disease trajectory. These challenges are affected by their cognitive function, experiences of personal and social stigma associated with the disease, perceived social support, and person-centered care. Study findings have implications for developing tailored supportive programs for persons living with YOD at various stages of the disease trajectory.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1776-1798"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10115772","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":"Online gallery facilitated art activities for people with dementia during the COVID-19 pandemic and beyond: A narrative review.","authors":"Lara Wiseman, Stephen Isbel, Adriane Boag, Carolyn Halpin-Healy, Diane Gibson, Kasia Bail, James M Noble, Nathan M D'Cunha","doi":"10.1177/14713012231198748","DOIUrl":"10.1177/14713012231198748","url":null,"abstract":"<p><p>Art activities for people with dementia have a range of therapeutic benefits including psychosocial wellbeing and enhanced quality of life. Successful art programs promote social engagement, are inclusive and empowering, and enable opportunity for people with dementia to express themselves verbally and non-verbally. The COVID-19 pandemic and associated social distancing precautions have impacted the capacity of art galleries and museums to deliver in-person programs. However, they have also provided a new opportunity. This paper explores the potential benefits, challenges, and future directions for research relating to the online delivery of gallery-facilitated art activities for people with dementia. The evidence revealed that increased digitisation of programs increased access for participants, however, the majority of the research was published before the pandemic. Nevertheless, COVID-19 has necessitated many museums and galleries to engage with people with dementia online. Future research is needed to improve the usability of online delivery platforms and a comparison of online and onsite delivery is recommended, particularly to evaluate benefits to people living in rural and remote areas where access to museums and galleries may be limited.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1950-1976"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10644691/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10123912","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring why \"memory loss\" is a misleading descriptor of people living with dementia and can lead to dysfunctional care.","authors":"Steven R Sabat, Alison Warren","doi":"10.1177/14713012231200622","DOIUrl":"10.1177/14713012231200622","url":null,"abstract":"<p><p>Amidst goals for prevention and improved treatment for people living with dementia, much remains needed to enhance the quality of life of those currently diagnosed, especially the transfer of accurate information from professionals to the public. Although many healthcare professionals understand the various types of memory and which are likely to be more affected than others during the progression of dementia, lay persons are more frequently unaware of that important information. The terms used to describe the symptoms of dementia can have a great impact on perceptions of faculties that are absent, compromised, or preserved. Understanding the nuances of preserved memory faculties and other cognitive abilities retained by persons with dementia is important in this regard. The term \"memory loss\" as a descriptor of the syndrome of dementia and ascribing it to persons with dementia connotes an inability to form new memories and participate in meaningful social interactions, which is detrimental to their personhood. From a multidisciplinary approach drawn from neurology, neurobiology, psychology, and case vignettes, we aim herein to highlight the ways in which the term \"memory loss\" can be inaccurate, counterproductive and potentially promote dementia-related misperceptions, malignant positioning and malignant social psychology. Persons with dementia unequivocally struggle with explicit memory, or recalling on demand, but retain implicit memory, as evidenced by research and everyday actions. Therefore, we propose the use of alternative medical language to reflect accurately memory impairment and preservation of some important memory capabilities.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1819-1832"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10153030","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}