Dementia (London, England)最新文献

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"It's almost like not existing": Adult children's experiences of not being recognized and their perceptions of being forgotten by their parents with dementia. “这几乎就像不存在一样”:成年子女不被认可的经历,以及他们被患有痴呆症的父母遗忘的感觉。
Dementia (London, England) Pub Date : 2025-03-12 DOI: 10.1177/14713012251324705
Kristie A Wood, Marie-Anne Suizzo
{"title":"\"It's almost like not existing\": Adult children's experiences of not being recognized and their perceptions of being forgotten by their parents with dementia.","authors":"Kristie A Wood, Marie-Anne Suizzo","doi":"10.1177/14713012251324705","DOIUrl":"https://doi.org/10.1177/14713012251324705","url":null,"abstract":"<p><p>Parents living with dementia sometimes do not recognize their adult child caregivers, who may then perceive they are forgotten. Yet, research on the experience of being unrecognized and perceived as forgotten by a parent with dementia is scarce. Object relations theory suggests healthy development of a child's sense of self during early development is linked to being held in mind by a primary caretaker. Thus, it is unclear how being unrecognized and perceived as forgotten by parents living with dementia impacts adult children's identities. To investigate this phenomenon, this qualitative study explored adult child caregivers' experiences of not being recognized in the context of a parent's dementia. The aims were to (1) develop an in-depth understanding of what it means for adult children to perceive they were unrecognized and/or forgotten by their parents with dementia and (2) gain insight on the effects of being unrecognized and perceived as forgotten on adult children's identities. Twelve adult child caregivers of mothers with dementia due to a neurodegenerative disease were recruited through purposive sampling. Interpretative Phenomenological Analysis was conducted to analyze data collected via semi-structured in-depth interviews. Findings revealed participants experienced intense emotional pain from perceptions of being forgotten resulting in injuries to their identity and sense of self. Four superordinate themes were identified: <i>Attribution</i>, <i>Relationship</i>, <i>Emotional Landscape</i>, and <i>Reactions</i>, overarching ten emergent themes. Overall, this study underscores the relational interdependence of shared memories between parents and children in shaping children's self-perceptions, sense of personal history, and felt connection with parents living with dementia. Psychotherapeutic interventions grounded in cognitive behavioral therapy, object relations theory, and distributed cognition are recommended to enhance caregiver support. Helping adult children navigate ambiguity and embrace the possibility that they are not forgotten, but <i>remembered differently,</i> by their parents living with dementia may offer significant emotional relief and foster resilience.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251324705"},"PeriodicalIF":0.0,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143607008","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}
引用次数: 0
Beliefs and attitudes of family caregivers of People with dementia toward advance care planning: A Q methodology study. 痴呆症患者家庭照顾者对提前照护计划的信念和态度:一项Q方法学研究。
Dementia (London, England) Pub Date : 2025-03-12 DOI: 10.1177/14713012251326463
JinShil Kim, KyungAh Cho, Yoon Young Hwang, Jung-Ah Lee, Sang Yi Baek, Jisun Yang, Yoonji Park, Seongkum Heo
{"title":"Beliefs and attitudes of family caregivers of People with dementia toward advance care planning: A Q methodology study.","authors":"JinShil Kim, KyungAh Cho, Yoon Young Hwang, Jung-Ah Lee, Sang Yi Baek, Jisun Yang, Yoonji Park, Seongkum Heo","doi":"10.1177/14713012251326463","DOIUrl":"https://doi.org/10.1177/14713012251326463","url":null,"abstract":"<p><p><b>Background:</b> Family caregivers' perspectives for advance care planning (ACP) are critically important to reflect the end-of-life wishes of people with dementia. Culture can influence ACP practice and people's perspectives toward it. Little is known about family caregivers' perspectives toward ACP in Asian countries, especially in Korea. <b>Purpose:</b> The purpose of this study was to explore beliefs and attitudes toward ACP among family caregivers of people with dementia. <b>Methodology:</b> Using a Q methodology, 28 statements (Q sample) were constructed through an extensive literature review to capture the beliefs and attitudes toward ACP in family caregivers. The P sample (25 family caregivers) completed each grid with a statement in Q sorting table. Data analysis was done using the PQ Method program (Ver. 2.35). <b>Results:</b> Three types emerged from 24 caregivers through a Varimax rotation and explained 53% of the total variance. One caregiver fell into a non-significant for any of the three types. Type 1 (<i>ACP benefit- and patient-caregiver wish-driven caregivers</i>) hold positive attitudes toward pre-care planning and the benefits but lack of respect for the preferences of people with dementia. Type 2 (<i>Well-dying- and dignity-pursued advocators</i>) recognized ACP as a dignity-preserving approach but had concerns about pre-care planning and felt the burden for management of people with dementia. Type 3 (<i>Patient autonomy supportive surrogates)</i> perceived the importance of respecting the preferences of people with dementia and the roles of family caregivers in ACP care. <b>Conclusions:</b> Differences in the perspectives toward ACP of family caregivers have emerged. It is crucial to develop tailored interventions for each type to optimize ACP care for people with dementia and implement them as early as possible after onset to reduce patient suffering and caregiver burden, enhance dignified death, and improve quality of life.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251326463"},"PeriodicalIF":0.0,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143607195","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}
引用次数: 0
Coming to terms with a changing everyday life with dementia: What can we learn from people who are diagnosed while still working? 面对痴呆症患者不断变化的日常生活:我们能从那些仍在工作的人身上学到什么?
Dementia (London, England) Pub Date : 2025-02-26 DOI: 10.1177/14713012251323939
Louise Nygård, Ann-Charlotte Nedlund, Mervi Issakainen, Arlene Astell, Jenifer Boger, Anna Mäki-Petäjä-Leinonen, Ann-Louise Engvall, Birgit Heuchemer, Lena Rosenberg, Charlotta Ryd
{"title":"Coming to terms with a changing everyday life with dementia: What can we learn from people who are diagnosed while still working?","authors":"Louise Nygård, Ann-Charlotte Nedlund, Mervi Issakainen, Arlene Astell, Jenifer Boger, Anna Mäki-Petäjä-Leinonen, Ann-Louise Engvall, Birgit Heuchemer, Lena Rosenberg, Charlotta Ryd","doi":"10.1177/14713012251323939","DOIUrl":"https://doi.org/10.1177/14713012251323939","url":null,"abstract":"<p><strong>Objective: </strong>The study's aim was to better understand how persons, diagnosed with dementia while still working, strived to make sense of and come to terms with their changing everyday lives during the process of exiting work life.</p><p><strong>Methods: </strong>The study has an explorative, longitudinal design, following five persons who developed dementia while still working, with repeated, qualitative, in-depth interviews. Comparative analyses were combined with an interpretative approach, using the concepts doing, being, becoming and belonging.</p><p><strong>Results: </strong>Three overarching themes were created: i/Finding out an orientation to continued activity engagement, ii/ Relating to the diagnosis and available dementia specific activities, and iii/ Managing wellbeing and information related to health care. Findings illuminate how participants sought avenues for continued activity engagement in everyday life, based on their perceptions of what they were able to do, who they wanted to be and become, and where they felt they belonged.</p><p><strong>Conclusion: </strong>The participants' agency came through strongly in their efforts to come to terms with changes in everyday life in their work and private lives, as well as with health care and dementia associations, underscoring that agency is vital and possible to support in persons with early-stage dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251323939"},"PeriodicalIF":0.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143517597","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}
引用次数: 0
Public officials' attitudes towards public participation in policymaking by people with dementia. 政府官员对痴呆症患者公众参与决策的态度。
Dementia (London, England) Pub Date : 2025-02-26 DOI: 10.1177/14713012251324263
Hiroshige Matsumoto, Shuji Tsuda, Satoko Hotta
{"title":"Public officials' attitudes towards public participation in policymaking by people with dementia.","authors":"Hiroshige Matsumoto, Shuji Tsuda, Satoko Hotta","doi":"10.1177/14713012251324263","DOIUrl":"https://doi.org/10.1177/14713012251324263","url":null,"abstract":"<p><strong>Introduction: </strong>Public participation by people with dementia in relevant policymaking has been advocated to improve the quality of health systems and democratic processes. Public officials' attitude is a key determinant of public participation. This study aimed to explore Japanese local-government officials' attitudes towards public participation by people with dementia in policymaking and associated factors.</p><p><strong>Methods: </strong>This cross-sectional study, utilising an online survey conducted in December 2022, included public officials (<i>n</i> = 997) in charge of dementia policy in Japanese municipalities, with one respondent from each municipality. Participants' certifications were administrative, public-health nurse, or other professionals. Univariate and mediation analyses were performed with attitudes towards public participation by people with dementia as a dependent variable, attitudes towards people with dementia as a mediating variable, and demographic characteristics, contact opportunities with people with dementia, and sources of dementia-related information as exploratory variables.</p><p><strong>Results: </strong>The mean attitude towards people with dementia and towards public participation was 45.1 (SD: 5.1) and 12.6 (SD: 1.8), respectively. Positive attitudes towards people with dementia were a significant determinant of supportive attitudes towards public participation. Participation in collaborative activities with people with dementia and a larger municipality population had positive and significant direct effects on attitudes towards public participation by people with dementia. Additionally, the public officials' sex and exposure to information about dementia directly from people with dementia showed a significant positive indirect effect mediated by attitude towards people with dementia.</p><p><strong>Discussion: </strong>Attitudes towards people with dementia are the most significant factor influencing their public participation; therefore, reducing stigma among public officials is essential to foster public participation by people with dementia. Active involvement of public officials in collaborative activities with people with dementia at the micro level and valuing the perspectives of people with dementia as essential contributions can enhance public participation by in local policymaking.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251324263"},"PeriodicalIF":0.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143517600","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}
引用次数: 0
Caring for an older person with dementia: Behavioral problems in the eyes of family caregivers and migrant home care workers. 照顾老年痴呆症患者:家庭照顾者和移民家庭照顾工作者眼中的行为问题。
Dementia (London, England) Pub Date : 2025-02-26 DOI: 10.1177/14713012251323661
Liat Ayalon, Natalie Ulitsa, Anna-Eva Nebowsky, Mark Schweda, Milena von Kutzleben
{"title":"Caring for an older person with dementia: Behavioral problems in the eyes of family caregivers and migrant home care workers.","authors":"Liat Ayalon, Natalie Ulitsa, Anna-Eva Nebowsky, Mark Schweda, Milena von Kutzleben","doi":"10.1177/14713012251323661","DOIUrl":"https://doi.org/10.1177/14713012251323661","url":null,"abstract":"<p><p>The present study addresses the perspectives of Israeli family caregivers and migrant care workers on behavioral problems of persons with dementia. We thematically analyzed interviews with 21 migrant home care workers and 17 family members. Three main themes reported by both family members and migrant home care workers were identified. The first theme concerned the main challenges associated with caring for a person with dementia. The second theme concerned the management of the care recipient's behavioral problems. The last theme concerned the relationship between family members and the migrant home care worker in the context of the care provided to a family member with dementia. Our findings stress that the different stakeholders have quite similar perspectives concerning what the most challenging behaviors associated with dementia are as well as ways to address them. Moreover, both family members and migrant home care workers recognize the role of family members as mediators and as those who ensure adequate working relations of the migrant care workers and thus, are directly responsible for protecting the mental and physical wellbeing of the worker. Policy stakeholders and clinicians responsible for this caregiving arrangement should use these insights to better prepare family members and migrant home care workers for this caregiving context and the challenges it brings.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251323661"},"PeriodicalIF":0.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143517585","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}
引用次数: 0
Implementing reablement for community dwelling people with dementia: A formative evaluation using single-case experimental design. 对社区居住的痴呆症患者实施康复:使用单例实验设计的形成性评估。
Dementia (London, England) Pub Date : 2025-02-25 DOI: 10.1177/14713012251323941
Alexis Campbell, Christopher J Poulos, Caroline Takla, Joy Allen, Kylie Lemsing, Claire Mc O'Connor
{"title":"Implementing reablement for community dwelling people with dementia: A formative evaluation using single-case experimental design.","authors":"Alexis Campbell, Christopher J Poulos, Caroline Takla, Joy Allen, Kylie Lemsing, Claire Mc O'Connor","doi":"10.1177/14713012251323941","DOIUrl":"https://doi.org/10.1177/14713012251323941","url":null,"abstract":"<p><strong>Background: </strong>Reablement is recommended to maximise functioning in people with dementia, yet in Australia, is not routinely available. This study aimed to provide insight into the implementation and program outcomes of reablement in real-world practice for a person living with dementia.</p><p><strong>Methods: </strong>Reablement was implemented for a client with dementia. In parallel, a formative mixed-methods pilot evaluation was performed, using single-case experimental A-B-A design (<i>n</i> = 1), supplemented by routinely collected pre-post program clinical measures. Implementation was evaluated qualitatively via clinical notes for fidelity, feasibility and client engagement.</p><p><strong>Results: </strong>Single-case experimental design outcomes indicated the program positively impacted the participant's physical functioning. Additionally, most routinely collected pre-post clinical measures demonstrated improvement. Intervention fidelity varied, with differences in length and client engagement.</p><p><strong>Conclusion: </strong>Implementation of evidence-informed reablement has been shown to be feasible in real-world practice for a community-dwelling person living with dementia. Larger implementation trials are needed to build on preliminary outcomes to ultimately improve access to these important programs.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251323941"},"PeriodicalIF":0.0,"publicationDate":"2025-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143506490","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}
引用次数: 0
Effectiveness of an educational intervention on mealtime support needs for people with dementia in residential care facilities: A cluster-randomized controlled trial. 教育干预对住院护理机构中痴呆患者用餐时间支持需求的有效性:一项集群随机对照试验。
Dementia (London, England) Pub Date : 2025-02-21 DOI: 10.1177/14713012251323658
Lígia Passos, João Tavares, Melissa Batchelor, Daniela Figueiredo
{"title":"Effectiveness of an educational intervention on mealtime support needs for people with dementia in residential care facilities: A cluster-randomized controlled trial.","authors":"Lígia Passos, João Tavares, Melissa Batchelor, Daniela Figueiredo","doi":"10.1177/14713012251323658","DOIUrl":"https://doi.org/10.1177/14713012251323658","url":null,"abstract":"<p><strong>Background: </strong>People with dementia face numerous challenges during mealtimes, including difficulties with food intake, cutlery use, and maintaining attention. These can lead to severe consequences such as malnutrition and aspiration pneumonia, affecting the well-being of these individuals.</p><p><strong>Aim: </strong>To determine the effectiveness of an educational intervention in improving mealtime support needs and enhancing the well-being of both individuals with dementia and direct care workers.</p><p><strong>Methods: </strong>A cluster-randomized controlled trial was conducted in four residential care facilities. The study involved direct care workers and residents with dementia, with facilities randomly assigned to either an intervention or control group. The intervention comprised three weekly 2-hour training sessions, focusing on dementia-related mealtime challenges and practical support strategies. Data were collected at baseline and one-week post-intervention using questionnaires and observational tools to assess caregivers' skills, burnout levels, and job satisfaction, as well as residents' mealtime behavior and food intake.</p><p><strong>Results: </strong>Direct care workers from the intervention group showed significant improvements in knowledge (<i>p</i> < .001; d = 0.728) and skills (<i>p</i> < .001; d = 0.842) compared to the control group. Additionally, there were notable reductions in burnout levels (<i>p</i> = .001; d = 0.466) and higher job satisfaction (<i>p</i> = .003; d = 0.410). People with dementia in the intervention group demonstrated better performance at mealtimes.</p><p><strong>Conclusion: </strong>The educational intervention effectively enhanced direct care workers' abilities to support people with dementia during mealtimes, leading to better outcomes for both caregivers and residents. Implementing such training programs can improve care quality and alleviate challenges in dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251323658"},"PeriodicalIF":0.0,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143473375","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}
引用次数: 0
Characterizing diagnostic disclosure communication strategies and challenges in dementia care: A qualitative study of interprofessional clinicians across three systems. 表征痴呆护理中的诊断披露沟通策略和挑战:跨三个系统的跨专业临床医生的定性研究。
Dementia (London, England) Pub Date : 2025-02-18 DOI: 10.1177/14713012251321569
Joanna Paladino, Heily Chavez Granados, Alissa Bernstein Sideman, Carine Davila, Liliana Ramirez Gomez, Elizabeth Lindenberger, Susan Block, Ana-Maria Vranceanu, Deborah Blacker, Dorene Rentz, Christine Ritchie
{"title":"Characterizing diagnostic disclosure communication strategies and challenges in dementia care: A qualitative study of interprofessional clinicians across three systems.","authors":"Joanna Paladino, Heily Chavez Granados, Alissa Bernstein Sideman, Carine Davila, Liliana Ramirez Gomez, Elizabeth Lindenberger, Susan Block, Ana-Maria Vranceanu, Deborah Blacker, Dorene Rentz, Christine Ritchie","doi":"10.1177/14713012251321569","DOIUrl":"https://doi.org/10.1177/14713012251321569","url":null,"abstract":"<p><p><b>Background:</b> Diagnostic disclosure communication in dementia care proves challenging for clinicians and inadequately addresses patient and caregiver needs. We characterized clinician communication strategies and challenges for diagnostic disclosure conversations as an initial step in developing a structured communication intervention. <b>Methods:</b> Thematic analysis of semi-structured interviews with 23 clinicians across three academic medical centers in neurology, geriatrics, geriatric psychiatry, neuropsychology, and primary care. <b>Findings:</b> Communicating a dementia diagnosis, because of its gravity, requires incremental communication strategies organized in the following domains. First, building and maintaining strong relationships with patients and caregivers by establishing rapport and emotional connection builds trust and creates a sense of partnership. Second, assessing illness awareness and establishing readiness to discuss diagnosis occurs over multiple visits. This involves creating psychological safety to discuss cognitive concerns, especially for individuals from racial and ethnic marginalized communities in which there is enhanced stigma. Third, clinicians tailor word choice for disclosure based on patient and caregiver needs and their own comfort. Fourth, clinicians are attuned to patient and caregiver emotions but feel varying levels of comfort responding to emotions. Fifth, approaches to sharing prognostic information include emphasis on individual variability and discussions of longer-term anticipated changes to function, although clinicians identified challenges with discussing prognosis due to uncertainty about rates of progression. Sixth, supporting hope and preparation in care planning supports patients and caregivers to adapt to the diagnosis and plan for future changes. Building relationships with caregivers and adapting communication for patients of different cultural backgrounds occurs throughout the process. Common challenges include: harm to the therapeutic relationship from 'abrupt' disclosures; limitations in patient ability to retain or accept diagnostic information; clinicians' challenges with their own emotions that arise with disclosure. <b>Conclusion:</b> A customized, structured communication framework and training for clinicians may enhance the quality of diagnostic disclosure conversations in dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251321569"},"PeriodicalIF":0.0,"publicationDate":"2025-02-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143451152","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}
引用次数: 0
Poetry interventions in Alzheimer's and dementia care: A scoping review. 诗歌干预阿尔茨海默病和痴呆症护理:范围综述。
Dementia (London, England) Pub Date : 2025-02-17 DOI: 10.1177/14713012251321022
Antonio Paniagua Guzman, Amy K Otto, Indira Galeeva, Sarah Jane Brown, Kristen Jacklin
{"title":"Poetry interventions in Alzheimer's and dementia care: A scoping review.","authors":"Antonio Paniagua Guzman, Amy K Otto, Indira Galeeva, Sarah Jane Brown, Kristen Jacklin","doi":"10.1177/14713012251321022","DOIUrl":"https://doi.org/10.1177/14713012251321022","url":null,"abstract":"<p><p>Art-based interventions for people living with dementia have been successful in improving diverse areas of quality of life and care. Within the spectrum of art-based interventions, poetry has shown an impact on communication, socialization, and the regulation of behavioral outcomes. This scoping review aims to identifying and analyzing how and in what contexts poetry has been used as a form of therapy for people living with dementia and their caregivers. It also looks at the methodology, design, and outcomes. After screening 1106 articles across multiple databases, 23 underwent full-text review, and six were included in the final extraction. Inclusion criteria focused on people living with dementia aged 50+ and/or their family caregivers, encompassing any form of language-based poetry intervention (e.g., written, spoken word). Both completed and ongoing original research reporting intervention outcomes in peer-reviewed articles or certain types of grey literature were considered. The review covers literature published between 1993 and 2023. Additional details on the poetry interventions including collaboration, facilitation, duration, and underlying theory, were also extracted. The findings highlight the effectiveness of poetry interventions for people living with dementia and their caregivers as person-centered activities fostering personhood and social connectedness. Particularly spoken-word poetry-based programs showed positive impacts on participants' self-expression, personhood, and agency. Two main barriers for wider dissemination were identified. First, methodology and outcome reporting conventions in some extracted studies diverge from broader biomedical/health and social science norms. Second, study design and data analysis are not reported in ways that evidence of programs' impact can be assessed and supported. Additionally, there is a lack of literature focused on the development and implementation of poetry-based intervention programs aimed at serving under-represented and minority populations. Recommendations for future projects include multidisciplinary collaborations, diversifying methodological approaches, and attention to cross-cultural approaches to program development and implementation.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251321022"},"PeriodicalIF":0.0,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143442846","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}
引用次数: 0
Telephone and online support programs and assistive technologies that support informal carers of people living with young-onset dementia: A systematic review. 支持年轻痴呆患者非正式照护者的电话和在线支持方案及辅助技术:系统综述。
Dementia (London, England) Pub Date : 2025-02-14 DOI: 10.1177/14713012251321558
Wendy Moyle, Melinda Spencer, Meiling Qi, Na Li, Lihui Pu
{"title":"Telephone and online support programs and assistive technologies that support informal carers of people living with young-onset dementia: A systematic review.","authors":"Wendy Moyle, Melinda Spencer, Meiling Qi, Na Li, Lihui Pu","doi":"10.1177/14713012251321558","DOIUrl":"https://doi.org/10.1177/14713012251321558","url":null,"abstract":"<p><p><b>Objective:</b> Carers of people with young-onset dementia can be challenged by the care they provide. Little is known about the types of telephone and online support programs and assistive technologies that may help to assist them with caregiving. This review aimed to identify telephone and online support programs and assistive technologies that informal carers find useful for caring for people with young-onset dementia. <b>Design:</b> A systematic review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. An electronic search of the following five English databases was conducted: PubMed, PsycINFO, CINAHL, Web of Science, and Embase. In addition, the reference lists of eligible studies were manually searched to identify further studies. Databases were searched using synonyms and derivates for \"dementia,\" \"Alzheimer's disease,\" \"young onset\", \"early onset\", \"caregiver\", \"online\" and \"technology\". <b>Results:</b> We found 12 manuscripts that meet the study inclusion criteria. The dominant technologies were telephone and online support programs. Other assistive technologies included safety and monitoring support, telehealth, and a simple TV remote control. While carers reported positive effects of the telephone and online support programs, and technologies, such as improved self-efficacy, satisfaction, knowledge, well-being, and reduced burden, stress, depression, and anxiety, the studies were scarce, and a limited number of assistive technologies were explored. <b>Conclusion:</b> Given the increasing number of telephone and online programs and assistive technologies, it is disappointing to find a paucity of available manuscripts and the limited number of technologies explored for this population. Technologies to assist this population need to be developed and evaluated.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251321558"},"PeriodicalIF":0.0,"publicationDate":"2025-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143426755","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}
引用次数: 0
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