Dementia (London, England)最新文献

{"title":"Experiences of People With Dementia and Their Family Caregivers After Earthquakes: A Qualitative Study.","authors":"Seda Güney, Özlem Çiçek Doğan","doi":"10.1177/14713012251352574","DOIUrl":"10.1177/14713012251352574","url":null,"abstract":"<p><p>This qualitative study investigates the experiences of individuals with dementia and their caregivers following earthquakes, focusing on identifying challenges, coping mechanisms, and support needs during this critical period. Semi-structured interviews were conducted with participants who lived through earthquake events. The data were analyzed using interpretive phenomenological analysis to extract meaningful insights into their post-earthquake experiences. The analysis revealed four main themes: (1) \"Adapting to Change and Addressing Unmet Needs,\" highlighting how individuals with dementia and their caregivers struggled to adapt to post-disaster circumstances, often facing unmet needs in healthcare and daily living; (2) \"Crisis Care Dilemma: Balancing Concerns for Loved Ones with Dementia,\" illustrating the caregivers' internal conflicts in prioritizing their safety while addressing the ongoing care needs of their loved ones with dementia; (3) \"Healthcare Hurdles: Struggles in Access and Support,\" shedding light on the difficulties in obtaining timely and appropriate medical care during and after the earthquakes, with limited resources exacerbating the stress of caregiving; and (4) \"Navigating Challenges: Recommendations for Well-being,\" presenting practical suggestions from participants on how healthcare and support systems can be improved to better serve this vulnerable group during crises. The findings emphasize the multifaceted and complex nature of post-earthquake experiences for people with dementia and their caregivers. Targeted interventions are essential to provide specialized healthcare services and crisis management support. These interventions should be integrated into policy and practice to ensure that the unique needs of this population are addressed effectively in disaster preparedness and response efforts. The study's insights have important implications for guiding future support strategies to enhance the well-being of individuals with dementia and their caregivers in post-disaster contexts.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251352574"},"PeriodicalIF":2.2,"publicationDate":"2025-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144318795","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 experience of long-term care staff caring for people with dementia in low- and middle-income Countries (LMICs): A qualitative evidence synthesis.","authors":"Xiaoyang Li, Heather Wilkinson, Mengying Zhang, Sarah J Rhynas","doi":"10.1177/14713012251346597","DOIUrl":"https://doi.org/10.1177/14713012251346597","url":null,"abstract":"<p><p><b>Background:</b> The demand for long-term residential care for people with dementia is, especially for those in the moderate to severe stages, increasing. However, dementia care services within long-term care (LTC) settings remain underdeveloped in low- and middle-income countries (LMICs). <b>Objectives:</b> This qualitative evidence synthesis aimed to explore LTC staff's experiences of taking care of people with dementia in LTC facilities in LMICs. <b>Methods:</b> A comprehensive literature search was conducted of six databases in January 2023 and updated in August 2024 for qualitative studies of LTC staff's experience of caring for people with dementia. Thematic synthesis was utilised for data synthesis, and NVivo facilitated this process. <b>Results:</b> 8,565 studies were screened, and 11 articles were included in this review. The studies included were conducted in Brazil (<i>n</i> = 2), China (<i>n</i> = 5), India (<i>n</i> = 1), Iran (<i>n</i> = 1), Malaysia (<i>n</i> = 1) and South Africa (<i>n</i> = 1) between 2012 and 2024. An overarching theme was identified: We are an island: underdeveloped dementia care within the LTC settings in LMICs, and the following categories identified as (1) the development of care provided for people living with dementia within care home settings is in its infancy; (2) the positive and effective coping strategies that may help embrace a brighter future of dementia care; (3) the deficiencies in caregiving approaches that contributed to poor-quality care for people living with dementia. <b>Conclusions:</b> The development of dementia care services within LTC in LMICs is still in its early stages. The main concern is the lack of available support and training for care staff and their insufficient dementia knowledge and care competencies. We hope that this review will help to increase attention to this significant issue of long-term institutional care for people with dementia in LMICs and that further research could investigate and enhance potential improvements in the practical implementation of long-term residential dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251346597"},"PeriodicalIF":0.0,"publicationDate":"2025-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144175977","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding the essential components and effectiveness of pre-assessment counselling (PAC) in providing a timely diagnosis according to NHS clinicians.","authors":"Marie Janes, Anna Buckell, Bethany A Jones, Miriam Sang-Ah Park, Stephen P Badham","doi":"10.1177/14713012251345928","DOIUrl":"https://doi.org/10.1177/14713012251345928","url":null,"abstract":"<p><p>This qualitative study explores the significance of Pre-Assessment Counselling (PAC) in supporting timely diagnoses for people with dementia from the perspectives of clinicians. Reflexive thematic analysis was employed to analyse in-depth interviews with a multidisciplinary team of clinicians specialising in dementia care. Three themes were identified: (1) The centrality of people with dementia in their diagnosis journey, (2) The importance of candid conversations in building therapeutic alliances, and (3) Recognising people with dementia are more than their diagnoses. These themes elucidate the multifaceted aspects of PAC and its implications for well-being and engagement in dementia care. The findings underscore the significance of timely diagnoses for the well-being of people with dementia while highlighting the nuanced nature of diagnosis delivery. Moreover, they emphasise the importance of empowering people with dementia in decision-making processes and fostering resilience through comprehensive support. The clinical and research implications of PAC implementation in dementia care are discussed.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251345928"},"PeriodicalIF":0.0,"publicationDate":"2025-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144144768","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":"Dementia caregiving in Chinese communities in high-income countries: Exploring unmet needs and experiences through a qualitative meta-synthesis.","authors":"Kristina M Kokorelias, Wai Lun Alan Fung, Erica Nekolaichuk, Miranda Wu, Hardeep Singh","doi":"10.1177/14713012251346598","DOIUrl":"https://doi.org/10.1177/14713012251346598","url":null,"abstract":"<p><p>Dementia presents significant global challenges, with care partners (family caregivers)-often family members-playing a central role in providing care and support, particularly in high-income countries. However, caregiving experiences are shaped by factors such as race, ethnicity, cultural values, and access to resources, necessitating inclusive research to better understand and address the diverse needs of care partners, particularly within ethnic minority groups like Chinese diaspora communities. We employed a meta-synthesis approach with several key steps, including defining the research question, evaluating primary studies, conducting meta-method and meta-theory analyses, and synthesizing findings. This study was framed within Arksey and O'Malley's scoping review framework and adhered to PRISMA-ScR guidelines. Ten articles were included. Cultural perceptions of dementia in Chinese communities often view it as a natural part of aging, leading to delays in diagnosis and treatment, while caregiving decisions are influenced by filial piety, financial constraints, and cultural norms. Care partners face barriers such as stigma, lack of awareness, and limited access to culturally sensitive support, leading to emotional and physical strain, often worsened by isolation and the challenges of navigating healthcare systems. Addressing cultural stigma, improving awareness, and enhancing access to culturally appropriate support are crucial for improving dementia care for Chinese communities.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251346598"},"PeriodicalIF":0.0,"publicationDate":"2025-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144144763","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":"Ethical issues associated with assistive technologies for persons living with dementia and their caregivers - An overview of reviews.","authors":"Anthony Scerri, Frederik Schou Juul, Rosa Silva, Rodrigo Serrat, Adrienne Grech, Gabija Jarašiūnaitė Fedosejeva, Montserrat Celdrán, Elzbieta Trypka, Christian Borg Xuereb, Nilufer Korkmaz-Yaylagul, Melina Evripidou, Isabel Machado Alexandre, Sigurd Lauridsen","doi":"10.1177/14713012251341374","DOIUrl":"https://doi.org/10.1177/14713012251341374","url":null,"abstract":"<p><p>Assistive technologies hold significant potential to enhance the quality of life for persons with dementia and their caregivers by addressing key concerns related to safety, independence, and social inclusion. Although ethical issues surrounding the design and use of assistive technologies have been explored in various studies, no comprehensive overview of reviews has been conducted to synthesize the existing evidence on these issues. This study aims to categorize the ethical issues associated with assistive technologies for persons with dementia and their caregivers using established ethical principles, while also examining factors shaping the ethical debate on their design and implementation. The study was conducted across nine databases and included reviews published in the past 20 years that substantially addressed ethical considerations. Data synthesis followed the framework synthesis approach developed by Carroll et al. (2011). Out of 509 identified records, 15 reviews focusing significantly on ethical issues were included in the analysis. Findings revealed key ethical issues, including maintaining autonomy, respecting privacy, and addressing equity and accessibility. While assistive technologies demonstrate potential in enhancing safety and independence, concerns about surveillance, depersonalization, and stigmatization persist. The ethical debate is shaped by contextual, philosophical, temporal, and geographical factors, including varying stakeholder priorities, the fluctuating nature of dementia symptoms, diverse approaches to dementia care and ethics, cultural differences, and the implications of future technological advancements. This review underscores the complexity of ethical issues related to assistive technologies for dementia care and how these identified factors inform the ethical design and their use for persons with dementia and their caregivers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251341374"},"PeriodicalIF":0.0,"publicationDate":"2025-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144082405","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":"Agitation in individuals with Alzheimer's disease: An assessment of behaviors using the cohen-mansfield agitation inventory in community-dwellers and impact on caregiver experience.","authors":"George Grossberg, Cynthia Willey, Christy Houle, Jeff Schein, Rebecca Bungay, Martin Cloutier, Marjolaine Gauthier-Loiselle, Deborah Chan, Annie Guerin, Zahinoor Ismail, Jyoti Aggarwal","doi":"10.1177/14713012251340463","DOIUrl":"10.1177/14713012251340463","url":null,"abstract":"<p><p>BackgroundAgitation is a common neuropsychiatric symptom of Alzheimer's disease; however, limited information exists on how measurable changes in agitated behaviors relate to overall caregiver experience. We sought to describe agitated behaviors measured by the Cohen-Mansfield Agitation Inventory (CMAI) score among individuals with Alzheimer's disease living in US community-based settings and experience of their caregivers.MethodsAn online survey was conducted (08/26/2021-09/24/2021) among adult caregivers who lived with and provided unpaid care for an individual with Alzheimer's disease. The 3-part survey involved (1) informed consent and screening; (2) CMAI assessment (total and sub-scores for four agitation factors); (3) characteristics and outcomes of caregivers and individuals with Alzheimer's disease. Descriptive statistics are reported. Association between the CMAI total score and caregiver burden (measured using the Zarit Burden Interview), mental health (measured using the Patient Health Questionnaire 4-item), and work/activity impairment (measured using the Work Productivity and Activity Impairment: Caregiver scale) was estimated using regression models.ResultsA total of 250 caregivers (mean age: 44.5 years; 55.2% male; 86.4% White) completed the survey. Based on the CMAI, 99.6% of individuals with Alzheimer's disease (mean age: 68.6 years; 55.2% male; 83.2% White) experienced ≥1 agitated behavior in the past 2 weeks. Caregivers reported providing an average of 39.1 hours of care per week for individuals with Alzheimer's disease (additional non-paid and paid care provided by other caregivers was 58.8% and 38.4%, respectively); 60.8% of caregivers had a high caregiving burden, 35.2% experienced moderate-to-severe distress, and 68.2/64.0% had impairment in work/daily activities. Agitation among individuals with Alzheimer's disease was associated with significantly poorer caregiver outcomes.ConclusionsIndividuals with Alzheimer's disease frequently experience several different agitated behaviors. Effective management of agitated behaviors is important and has the potential to improve the overall caregiver experience.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251340463"},"PeriodicalIF":0.0,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144022330","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":"Navigating the diagnosis and treatment of primary progressive aphasia: Lived experience of a rural patient.","authors":"Abigail Avendaño Villaseñor, Ladan Ghazi Saidi","doi":"10.1177/14713012251342630","DOIUrl":"https://doi.org/10.1177/14713012251342630","url":null,"abstract":"<p><p>Frontotemporal dementias (FTD) are a group of early-onset neurodegenerative disorders that primarily affect the frontal and temporal lobes, leading to changes in behavior, motor abilities, communication, and executive functions. Primary progressive aphasias (PPA), the language variant of FTD, specifically impair speech and language abilities. The heterogeneous presentation of FTD, particularly PPA, complicates differential diagnosis and treatment selection for healthcare professionals. These challenges are further exacerbated for patients in rural areas due to limited access to specialized healthcare services. This cross-sectional, descriptive case study examines a 76-year-old male patient diagnosed with agrammatic primary progressive aphasia (nfvPPA) living in a rural area in the U.S. We conducted a semi-structured interview with his caregiver to explore the lived experience of being diagnosed and treated for PPA in a rural setting and to identify challenges encountered during the diagnostic and therapeutic processes. Several critical barriers were identified, including poor interprofessional communication, inadequate practitioner-patient and caregiver communication, limited access to educational resources, inconsistent intervention and follow-ups, and restricted healthcare services. To improve the patient and caregiver experience, we propose a collaborative management model centered around speech-language pathologists with expertise in FTD/PPA. This model aims to facilitate smoother navigation of the healthcare system and improve patient outcomes. Effective care management requires clear and continuous communication among providers, patients, caregivers, and other professionals. Additionally, educating and supporting FTD/PPA patients and their families is essential. Research gaps in rural areas regarding diagnosis and treatment outcomes further hinder care, underscoring the need for targeted studies to enhance clinical practices and improve the quality of life for both patients and caregivers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251342630"},"PeriodicalIF":0.0,"publicationDate":"2025-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144065435","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":"Frequency of care mediates the effect of older adults' cognitive performance on the perceived strain of their informal caregivers in a middle-income country.","authors":"Lucas Nogueira de Carvalho Pelegrini, Tamara Backhouse, Aline Cristina Martins Gratão, Marcia Regina Cominetti","doi":"10.1177/14713012251342631","DOIUrl":"https://doi.org/10.1177/14713012251342631","url":null,"abstract":"<p><p><b>Background and Objectives:</b> As low and middle-income countries face a rapid increase in their older adult populations, the demand for informal caregiving is expected to rise. Understanding caregiving dynamics in these settings is crucial for developing effective support systems.<b>Aims:</b> To investigate whether the frequency and duration of care provided to older adults mediate the relationship between cognitive performance and caregiver strain.<b>Methods:</b> A cross-sectional study that evaluated informal caregivers of cognitively unimpaired (<i>n</i> = 78) older adults and people living with Alzheimer's dementia (<i>n</i> = 39). We controlled for variables including age, current medications, functional status, cognitive decline, and cognitive functioning. We analyzed whether caregiving frequency and duration mediated the effect of older adults' cognitive performance on caregiver strain.<b>Results:</b> Frequency of care, rather than its duration, significantly mediates the association between older adults' cognitive performance and caregiver strain. Specifically, more days of care are associated with increased caregiver strain, compared to the total number of caregiving hours.<b>Conclusion:</b> Addressing the frequency of caregiving days rather than just the duration in hours offers a more effective approach to reducing caregiver strain. Policies should aim to reduce the number of caregiving days, potentially through expanded respite care programs and full days off for caregivers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251342631"},"PeriodicalIF":0.0,"publicationDate":"2025-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144029762","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":"Development of a communication curriculum for family care partners of persons living with dementia.","authors":"Suzanne S Sullivan, Elaine Wittenberg, Lori-Jeanne West, Amarjot S Gill, Caitlin Tomko, Catherine Mann","doi":"10.1177/14713012251342029","DOIUrl":"https://doi.org/10.1177/14713012251342029","url":null,"abstract":"<p><p>The healthcare system often fails family care partners of persons living with dementia as their involvement in care requires long-term planning in collaboration with healthcare providers. Unmet needs that may improve family participation in partnering in care include communication, education, and information. The objective of this study was to identify learning objectives to inform development of a communication curriculum for family care partners of persons living with dementia. This three-round Delphi study conducted from June to November 2023 adheres to Conducting and Reporting Delphi Studies (CREDES) guidelines in palliative care. Expert participants were recruited based on their experience as a healthcare professional, academic researcher, policy expert, or family care partner. Participants completed three rounds of surveys to: (a) rank the importance and relevance of learning objectives, (b) rank-order learning objectives from least to most important, and (c) priority-rank learning objectives for each stage of dementia. Participants also provided qualitative feedback for each learning objective. Nine priority learning objectives were identified, with learning objectives for communication knowledge emphasized across all stages of dementia. Unique learning objectives were found for mild stage dementia (sharing positive and negative feelings) and severe stage dementia (defining communication topics for the healthcare team). This study provides a foundation for developing a targeted communication curriculum for family care partners to enhance their skills and confidence when communicating with healthcare providers. Implementing the identified learning objectives in educational programs can improve family care partners' ability to communicate effectively with healthcare professionals, leading to better health outcomes and improved care partner experiences. Variation in learning objectives across stages of dementia suggest targeted intervention approaches.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251342029"},"PeriodicalIF":0.0,"publicationDate":"2025-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144063329","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":"Power, class, and gender in dementia care: Stories of carer precariousness from culturally and linguistically diverse female family carers in Australia.","authors":"Teddy Nagaddya, Ruth Brookman, Olivia Maurice, Celia B Harris","doi":"10.1177/14713012251342059","DOIUrl":"https://doi.org/10.1177/14713012251342059","url":null,"abstract":"<p><p>Dementia care provision is a global challenge. However, dynamics to provide care to a family member living with dementia in their home are far more complex. Evidence suggests that dementia care among culturally and linguistically diverse (CALD) communities is largely offered by family members within communities. But at a family level, care happens at the intersection of unequal gender relations, complex cultural constructions of dementia, and longstanding family values and traditions. While these dynamics show the intersection of power, class, and gender, these aspects have not gained widespread currency in dementia policy plans. Yet they shape the identities and social positioning of carers and consequently carer precariousness. This article reveals that the role of caring for family members living with dementia is embedded in complex power structures that stigmatise the identities of carers and those cared for, reproduces gendered social hierarchies, exacerbate economic uncertainties, and diminish the merits of filial piety - a valued cultural practice. By centering the voices of female carers from a CALD background, the authors highlight the need for policymakers to devote particular attention to how the intersection of the diverse cultural environments with dementia care at a family level induce carer insecurities and vulnerabilities - precariousness. This calls for an emancipatory dementia policy agenda that values the lived experiences of female carers' cumulative disadvantage over the course of providing care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251342059"},"PeriodicalIF":0.0,"publicationDate":"2025-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144028392","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}