Dementia (London, England)最新文献

{"title":"Exploring the use of digital media to support meaningful activities for people living with dementia: A qualitative study.","authors":"Mariana Ramalhete, Rita Maldonado Branco, Soraia Teles, Oksana Tymoshchuk, Rita Oliveira, Joana Quental, Oscar Ribeiro","doi":"10.1177/14713012251330689","DOIUrl":"https://doi.org/10.1177/14713012251330689","url":null,"abstract":"<p><p>Dementia is a progressive and neurodegenerative condition that leads to a gradual deterioration of the individual's functional capacity and social relations. Engaging in meaningful activities is considered an effective approach to maintaining and increasing the well-being of people living with dementia. Digital media has the potential to improve the quality of life for people living with dementia, allowing them to engage in activities that are personally meaningful. This study sought to understand the needs and preferences people with early-stage dementia living in Portugal have for receiving information on meaningful activities. It also explored their relationship with technologies and digital media. Focus groups and interviews were carried out with people living with dementia (<i>n</i> = 21), informal carers (<i>n</i> = 9) and healthcare professionals (<i>n</i> = 8). Descriptive statistics were used for sample characterization and the <i>verbatim</i> transcriptions of interviews and focus groups were subjected to inductive thematic analysis. We developed three main themes: (i) engagement of people living with dementia in meaningful activities; (ii) experiences of people living with dementia with technology and digital resources; and (iii) the importance of a support network. This last theme is associated with the first two. The study identified several meaningful activities, such as household chores and intellectual hobbies, some of which were mediated by technology. People living with dementia reported to primarily use digital media, particularly computers and smartphones, for socialization and entertainment. The barriers identified for technology use and engagement in meaningful activities were both related to mobility problems and cognitive complaints. The support network emerged as essential for the use of digital technologies and engagement in meaningful activities. This study highlights a need to further research and design digital media that offer the opportunity for people living with dementia to be informed and engaged in meaningful activities.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251330689"},"PeriodicalIF":0.0,"publicationDate":"2025-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143743994","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 'personhood paradox': Care partners' experiences supporting people with dementia and incontinence.","authors":"Vanessa Burholt, Yasmin Orton, Sharon A Awatere, Julie F Daltrey","doi":"10.1177/14713012251329545","DOIUrl":"https://doi.org/10.1177/14713012251329545","url":null,"abstract":"<p><p>Globally, 50 million people live with dementia and mostly receive care at home. Urinary, faecal and functional incontinence is common in this population and increases care demands. This study explores care partners' experiences managing continence care for people with dementia in Aotearoa New Zealand. The data are drawn from a cross-sectional qualitative study with 18 care partners of people with dementia and incontinence in mid and northern regions of Aotearoa New Zealand. Participants were interviewed face-to-face from June 2022 to April 2023. Data were analysed using Interpretive Phenomenological Analysis. Six Generalised Experiential Themes emerged. Care partners engaged in autobiographical and biographical meaning-making to interpret behaviours and maintain the personhood of people with dementia, focusing on dignity, identity, and social inclusion. However, caregiving often undermined care partners' personhood due to the physical and emotional demands of continence care. Access to resources was challenging, and healthcare support was often perceived as inadequate. Some care partners' strategies to find meaning and joy in everyday life contributed to resilience, while others experienced stress, fatigue, and burnout. Care partners used personal knowledge to support personhood, especially in social engagement. Uncertainty in managing incontinence led to self-doubt, exacerbated by the medicalised nature of continence care, which involves intimate attention beyond typical caregiving. Timely, credible advice could reduce uncertainty, but many found seeking resources overwhelming. Balancing their own well-being with caregiving highlights the need for support systems addressing the requirements of both care partners and people with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251329545"},"PeriodicalIF":0.0,"publicationDate":"2025-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143674168","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":"Enhancing healthcare professionals' confidence in ethical decision-making when caring for people with dementia: A qualitative evaluation of the CARE intervention.","authors":"Frederik Schou-Juul, Tine Tjørnhøj-Thomsen, Sigurd Lauridsen","doi":"10.1177/14713012251327704","DOIUrl":"https://doi.org/10.1177/14713012251327704","url":null,"abstract":"<p><p><b>Aim(s):</b> To evaluate the impact of the CARE intervention on healthcare professionals' perceived confidence levels and understand the factors influencing confidence in ethical decision-making in dementia care. <b>Design:</b> Thematic analysis of post-intervention focus-group interviews. <b>Methods:</b> Twelve focus-group interviews were conducted post-intervention with nurses and other healthcare professionals providing direct caregiving for people with dementia in a Danish municipality. Braun and Clarke's framework guided thematic analysis, which assessed the participants' perceived influence of the CARE intervention on their confidence and gained insights into the factors perceived by participants as impacting confidence in ethical decision-making. <b>Results:</b> Analysis revealed five themes across two overarching domains: the perceived influence of the CARE intervention on healthcare professionals' confidence and factors impacting their confidence. While the intervention reinforced confidence for many, some reported no change due to pre-existing high confidence levels. Factors contributing to confidence included reassurance of ethical practice, peer dialogue, family interaction, and critical reflection, underscoring the importance of peer support and dialogue in bolstering ethical confidence in dementia care. <b>Conclusion:</b> This study presents findings on the CARE intervention's impact on enhancing healthcare professionals' confidence in ethical decision-making in dementia care and offers insights on the potential of peer interaction and support in bolstering ethical confidence.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251327704"},"PeriodicalIF":0.0,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626701","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 Co-design of the Dementia Lifestyle Intervention to get healthy together (DELIGHT) program: An authentic partnership approach.","authors":"Laura E Middleton, Lauren Bechard, William Heibein, Lloyd Schneider, Marg Shoemaker, Gail Roth, Cindy Wei, Melissa Koch, Heather Keller, Carrie McAiney","doi":"10.1177/14713012251325928","DOIUrl":"https://doi.org/10.1177/14713012251325928","url":null,"abstract":"<p><p>Improving supports to enhance wellbeing of people living with dementia is a priority. Engaging people living with dementia, care partners, and other stakeholders in development of interventions increases the likelihood they will be relevant and impactful. We describe the participatory approach used to co-design the Dementia Lifestyle Intervention for Getting Healthy Together (DELIGHT) program, which aims to promote the health and wellbeing of people living with dementia and care partners. The DELIGHT project was guided by a team of researchers, people living with dementia, care partners, and an Alzheimer Society representative. The co-design team included additional people living with dementia, care partners, exercise professionals, dietitians, health care professionals, and community service providers (<i>n</i> = 29). The co-design was planned for in-person but was transitioned to six online, 1.5-h sessions due to COVID-19 related restrictions. We used breakout rooms for discussion, with people living with dementia in each breakout room. Co-design meetings focused on identifying target population and outcomes and developing program components and structure. Two or three guiding questions focused discussion in each meeting. The final co-design session focused on the overall structure of the DELIGHT program. Program resources were iteratively designed with the research team, co-design team, and other external stakeholders. The result of the co-design process was the DELIGHT program, an 8-week, twice weekly program designed to promote living well with dementia for people living with dementia and care partners. Each session includes 50-60 minutes of exercise and 20-30 minutes of facilitated, shared learning with an associated resource. A healthy snack may be offered. Shared learning focuses on healthy eating, sleeping well, mental well-being, social connection, and physical activity. Our vision is that the co-designed DELIGHT program will promote the health and wellbeing of people living with dementia and care partners, increasing the likelihood of living well with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251325928"},"PeriodicalIF":0.0,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626786","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":"\"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}

{"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}

{"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}

{"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}

{"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}

{"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}