Dementia (London, England)最新文献

{"title":"\"How will I ever know I didn't bring it on myself?\": Navigating personal responsibility in public health messaging on dementia risk.","authors":"Allie Peckham, Molly Maxfield, Dara L James","doi":"10.1177/14713012241270756","DOIUrl":"10.1177/14713012241270756","url":null,"abstract":"<p><strong>Background and objectives: </strong>Public health messaging increasingly emphasizes the importance of \"lifestyle interventions\" to reduce dementia risk. Our study aimed to understand how people interpret and respond to information about dementia risk. In a second sub-aim, we examined how these interpretations may contribute to dementia-related lifestyle stigma.</p><p><strong>Research design and methods: </strong>We engaged in a secondary analysis of 50 semi-structured interviews using a framework approach to understand, from the perspective of community-dwelling middle-aged and older adults, how they may interpret, make sense of, and respond to information about dementia risk and risk reduction. During the interpretive and narrative phase, the authors began to elucidate participant responses analytically and identified that these responses could be interpreted within the health locus of control literature.</p><p><strong>Results: </strong>Of the 23 participants who discussed dementia risk, 13 felt some sense of personal responsibility and control over their dementia risk. Of those 13, four participants believed they had personal responsibility and control and actively engaged in lifestyle interventions. The remaining nine participants also engaged in lifestyle interventions, aiming to find comfort in knowing they had done what they could to reduce their risk and working to alleviate self-attribution of blame <i>if</i> diagnosed with dementia.</p><p><strong>Discussion and implications: </strong>The tendency to internalize responsibility may inadvertently contribute to the stigmatization of dementia as a 'lifestyle disease' creating dementia-related lifestyle stigma. Recognizing the multifaceted nature of dementia risk, including environmental and external factors beyond individual control, is essential to combatting the 'lifestyle stigma' increasingly associated with the condition.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1292-1306"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141977352","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":"Exploring confidence in financial planning topics among care partners of persons living with dementia.","authors":"Anna Jolliff, Beth Fields, Justin Boutilier, Alex Dudek, Christian Elliott, Matthew Zuraw, Nicole E Werner","doi":"10.1177/14713012241270730","DOIUrl":"10.1177/14713012241270730","url":null,"abstract":"<p><strong>Objective: </strong>Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. However, research is scarce on care partners' confidence and experiences with financial planning. The purpose of this study was, first, to quantify care partners' confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of experience are related to care partners' level of confidence in financial planning. Second, we sought to better understand the reasons for these confidence ratings by examining care partners' experiences of financial planning.</p><p><strong>Methods: </strong>We conducted an online survey that asked a combination of quantitative and qualitative questions to understand care partners' confidence and experiences with financial planning. Participants were nationally recruited care partners of persons living with dementia. Multivariate linear regression was used to understand different subgroups' levels of confidence in each financial planning topic. Inductive thematic analysis was used to understand qualitative data.</p><p><strong>Results: </strong>The financial planning topics in which participants (<i>N</i> = 318) felt the least confident were: options when there is not enough money to provide care; tax deductions available to cut care costs; and sources of money from government programs for which the care recipient is eligible. Differences in confidence were observed among care partners with lower incomes, less experience, and caring for a parent. Qualitatively, participants described the challenges of care budgeting and protecting personal finances; confusion about long-term care insurance and accessing resources; and, among confident care partners, reasons for this sense of preparedness.</p><p><strong>Conclusions: </strong>These results underscore the need for tailored interventions and technologies that increase care partners' confidence in specific aspects of financial planning, including long-term care insurance, available financial support, and what to do when money runs out.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1307-1326"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141895006","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":"Effectiveness of interventions to prevent abuse in people living with dementia in community settings: A systematic review.","authors":"Seelia Peter A, M Mukhyaprana Prabhu, Debbie Tolson, Baby S Nayak, Rajeshkrishna P Bhandary, Binil V, Elsa Sanatombi Devi","doi":"10.1177/14713012241260476","DOIUrl":"10.1177/14713012241260476","url":null,"abstract":"<p><strong>Objectives: </strong>This review examined the evidence for interventions to prevent the abuse of people living with dementia in the community.</p><p><strong>Methods: </strong>The articles were retrieved from 2000 to 2023 from six databases, including MEDLINE via PubMed, CINAHL Plus via EBSCO, EMBASE, ProQuest Medical Library, Web of Science, and Scopus. The research articles that focused on finding the effectiveness of interventions for preventing abuse of people living with dementia in community settings were included in this review. The review included randomized controlled trials and pre-test post-test trials only. The quality appraisal of the eligible studies was done using ROB 2 and ROBINS II. The findings were tabulated and narratively synthesised.</p><p><strong>Results: </strong>Out of 1831 articles, only three were included in this review. Only two RCTs were included in this efficacy review. Both the studies showed that the interventions were not effective in reducing abuse. The studies utilised family caregiver interventions like psychological interventions and online supportive education. The review identified psychological interventions with some evidence. Another study was a quasi-experimental study that used dialectical behaviour therapy as an intervention to reduce abuse occurrence. The study showed low evidence and focused only on reporting of elder abuse as an outcome.</p><p><strong>Conclusion: </strong>This review found very few studies and was not able to draw a conclusion on the effectiveness of interventions for abuse in people living with dementia. Given the paucity of research, there is a clear need to identify how to overcome the challenges faced in elder abuse research and further refine the development of approaches to reduce elder abuse among people living with dementia in community settings.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1327-1353"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11491043/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141433519","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":"Application, understanding, and appropriation of the Montessori method for persons with dementia: A qualitative pilot study.","authors":"Méryl Donadey, Guillaume Broc, Jérôme Erkes, Marie Lembach, Cameron Camp, Sophie Bayard","doi":"10.1177/14713012241264910","DOIUrl":"10.1177/14713012241264910","url":null,"abstract":"<p><p>The Montessori method applied in nursing homes is a person-centered approach targeting the enhancement of autonomy, well-being, and quality of life for older adults with dementia. Despite its potential in the aging field, its operationalization remains unclear in the context of institutionalization. This study aims to outline the method's components and adoption factors using a behavior change intervention framework among professionals from a French institution demonstrating a high level of method application. We employed a qualitative descriptive approach based on thematic analysis. Nine professionals from the same institution underwent a semi-structured individual interview within the facility. The findings were modeled using the Behavior Change Intervention Ontology. We obtained a final framework defining the intervention, mechanisms of action, exposure, contextual factors, and behavioral outcomes. The method is based on values, principles, and techniques such as facilitation, choice, meaningful activities, environmental adjustments, and specific tools. Applied continuously to residents, families, and professionals, its implementation is influenced by several contextual factors leading to practice changes at various levels. This study constitutes both a theoretical and practical contribution, providing a better definition of the method and the key factors influencing its appropriation.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1245-1262"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141763027","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":"Relationship quality perceived by family caregivers of people with dementia in the context of a psychoeducational intervention: A qualitative exploration.","authors":"Stephanie Kipfer, Cedric Mabire, Jean Vézina, Andrea Koppitz, Sandrine Pihet","doi":"10.1177/14713012241264611","DOIUrl":"10.1177/14713012241264611","url":null,"abstract":"<p><strong>Background: </strong>Caring for a person with dementia can be a challenging experience, often associated with chronic stress and a heavy burden on family caregivers. Dementia also impacts the relationship between the caregiver and the person with dementia. The quality of this relationship is, in turn, an important factor influencing the well-being of both dyad members. The psychoeducational intervention \"Learning to feel better . . . and help better\" has shown positive results regarding family caregivers' subjective burden, psychological distress, and self-efficacy. However, relationship quality has not been addressed in the context of this intervention.</p><p><strong>Methods: </strong>A longitudinal constructivist grounded theory approach was used to explore relationship quality as perceived by caregivers, possible changes and intervention components facilitating or preventing such changes. Three qualitative, semi-structured interviews (before, during and after the intervention) were performed with 13 family caregivers from three different intervention groups. The resulting 39 interviews were analysed regarding individual caregiver trajectories, per time point for all caregivers and regarding specific caregiver subgroups.</p><p><strong>Findings: </strong>A model focusing on sustaining relationship quality in dementia was developed. It shows strategies that family caregivers develop and apply to facilitate positive interactions and feelings of connectedness with their family members with dementia. It also indicates that mastering such strategies requires reflective skills based on specific knowledge of dementia and coping strategies, which can be enhanced through active skills training, in which caregivers are guided to work on their individual stressful situations. Factors hampering change included difficulties in accepting dementia-related changes.</p><p><strong>Conclusion: </strong>Findings suggest that psychoeducation, with active skills training based on caregivers' current daily life situations, providing systematic procedures to handle daily challenges and specific knowledge about the impact of the disease, could support them in developing and applying supportive strategies to sustain or improve their relationship to their family member with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1263-1291"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11475760/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894931","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":"Enabling work for people with dementia - Recommendations for interventions: A mixed-methods review.","authors":"Hanne Peoples, Jesper Larsen Maersk, Hanne K Kristensen","doi":"10.1177/14713012241267122","DOIUrl":"10.1177/14713012241267122","url":null,"abstract":"<p><p>Worldwide, 50 million people are living with dementia. As more individuals develop dementia while still working, dementia will increasingly become a workplace issue and a societal concern. Interventions targeted at work retainment, can reduce, and postpone the loss of cognitive functioning following dementia. However, there is a small body of research focused on recommendations for work interventions for people with dementia. The aim of this mixed-methods review was to investigate experiences of work following a dementia diagnosis from the perspective of people with dementia, their relatives, employers, co-workers and HR-professionals, with the objective of formulating recommendations for work interventions for people with dementia. A mixed-method approach guided the review. 16 original studies published between 1989 to 2023 were included, with a collective sample of 684 participants. The review shows that it is possible to live and work well with dementia, if collaborative solutions are continuously negotiated to meet the needs of the person with dementia and the workplace, and with attention to possible contextual enablers and barriers. The review highlights four key elements for successful work interventions for people with dementia: 1) Person-centered Approach, 2) Contextual Relevance, 3) Knowledge-based and 4) Dynamic Approach.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1382-1415"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141749904","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":"Patient-reported experience measures for people living with dementia: A scoping review.","authors":"Madison Chapman, Rachel Milte, Suzanne Dawson, Kate Laver","doi":"10.1177/14713012241272823","DOIUrl":"10.1177/14713012241272823","url":null,"abstract":"<p><p>The prevalence of dementia is increasing globally, with an estimated 139 million people expected to be living with dementia by 2050. Across numerous countries, substandard care for people with dementia is evident, with quality improvement needed. Recently, a focus on patient-reported experience measures (PREMs) has been utilised in healthcare services as a method of evaluating the care experiences provided and determining areas of improvement. The literature is scarce regarding the feasibility and acceptability of implementing PREMs with people with moderate to advanced dementia. This scoping review aimed to identify PREMs that have been used with vulnerable populations including people with cognitive impairment, mental health concerns, and children, outline dimensions included, and determine adaptions made to the PREMs to improve acceptability of the instruments for vulnerable populations. A database search of Medline was conducted to identify 36 studies including 32 PREMs. The PREMs identified covered a range of dimensions, most frequently care effectiveness, care environment, and patient involvement. The most common adaption to the PREMs was simplification of wording and sentence structure. Several measures conflated patient outcomes and patient satisfaction with patient experience, limiting utility for improving patient experience specifically. While several PREMs have been used with people with dementia, challenges in their implementation and their applicability to specific settings limit their use more broadly. Evidently, there is a need for development of a PREM for people with moderate to advanced dementia that is applicable across healthcare settings and is appropriately adapted for varying cognitive and communicative barriers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1354-1381"},"PeriodicalIF":0.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11475968/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141908521","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":"Nature nourishes the feeling of being - A walking interview study exploring the meaning of participation in nature-based activities for people living with dementia.","authors":"Annemarie G Toubøl, Trine Holt Clemmensen, Laila M Busted","doi":"10.1177/14713012241297211","DOIUrl":"https://doi.org/10.1177/14713012241297211","url":null,"abstract":"<p><p>This study aims to explore the meaning of participating in nature-based activities as seen from the perspective of people living with dementia. Being in a natural environment in contrast to a constructed environment has not previously been investigated, even though several studies have shown that nature-based activities may impact people's well-being, feelings of happiness, and a feeling of maintaining selfhood. A qualitative design was applied in this study, using walking-interviews to explore the meaning of participating in nature-based activities. Interviews have been conducted with 15 people with mild to moderate dementia in three municipalities. The analytical process using reflexive thematic analysis resulted in an overall theme that participation in nature-based activity nourishes the person by creating a feeling of having value as a person. Further, three subthemes were identified: Oasis for being, linking to the past, present, and future, and feeling capable. The findings of this study indicate that sensory stimulation when being in nature promotes embodied narratives and experiences, which contributes to the feeling of connecting to oneself, and to feeling valuable as a capable human being. This provides an important implication for practice that accessible nature-based activities may provide an overlooked opportunity to support self-identity for people living with dementia. However, it is time for a cultural and discursive shift in nature-based activities, where a delicate balance ensures that people living with dementia can derive inherent value from simply being in nature.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241297211"},"PeriodicalIF":0.0,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559625","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 experiences of unpaid carers of people living with dementia during the cost-of-living crisis: A reflexive thematic analysis.","authors":"Daniel Herron, Lisa Kyte, Lilli Clewes","doi":"10.1177/14713012241296188","DOIUrl":"https://doi.org/10.1177/14713012241296188","url":null,"abstract":"<p><p>Some carers have reported struggling to manage the additional costs of caring for someone with dementia, which has negatively impacted upon their financial resilience. Since 2021, this has been compounded by the cost-of-living crisis experienced in the United Kingdom. This crisis has been driven by sharp increases in energy prices and the prices of everyday basics such as food. This study aimed to better understand how unpaid carers, supporting and co-habiting with people living with dementia, experience the cost-of-living crisis, and the impact this has on their ability to provide care for the person living with dementia. Eleven carers supporting and co-habiting with people living with dementia in England, took part in two semi-structured interviews approximately 3 months apart between November 2022 and February 2023. All transcripts were analysed using reflexive thematic analysis. Carers reported having to make difficult and sometimes drastic decisions in reaction to the cost-of-living crisis and the uncertainty of future cost-of-living increases, such as using blankets and extra lays of clothing for them and the person living with dementia in place of using the heating system in their home, going without food so their loved one can eat, or even missing social opportunities. Some carers described aspects which they felt mitigated some of the negative impact of the cost-of-living crisis, such as being able to draw upon financial resources or their local authority providing social events which included a heated space with food. The cost-of-living crisis has led to carers having to make difficult decisions which created worry and anxiety. Findings indicate that many carers need financial support, and it would be beneficial for free social events to be organised which provide a heated space and food, where carers and people living with dementia can socialise with others.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241296188"},"PeriodicalIF":0.0,"publicationDate":"2024-10-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142514047","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":"Exploring perceived helpfulness of health services in men and women with dementia and care partners: A cross-sectional analysis.","authors":"Geneviève Arsenault-Lapierre, Maria Alejandra Rodriguez Duarte, Laura Rojas-Rozo, Yun-Hee Jeon, Maud Hevink, Marta Ciułkowicz, Dorota Szczesniak, Greta Rait, Louise Robinson, Jane Wilcock, Marie Poole, Carrie McAiney, Shelley Doucet, Alison Luke, Amy E Reid, Isabelle Vedel","doi":"10.1177/14713012241289471","DOIUrl":"https://doi.org/10.1177/14713012241289471","url":null,"abstract":"<p><p><b>Introduction:</b> The aim of this study was to examine the association of sex/gender and other factors with the perceived helpfulness of the diagnostic process and post-diagnostic services by persons with dementia and care partners.<b>Methods:</b> We conducted secondary cross-sectional analysis of surveys from the 'Cognisance' project. Sex/gender and other factors (e.g., demographic variables, help seeking behaviours, healthcare professional consulted) of persons with dementia and care partners from four countries were considered. Main outcomes were perceived helpfulness of diagnostic process and post-diagnostic services. We conducted descriptive and multivariate analyses.<b>Results:</b> Compared to men, more women with dementia perceived post-diagnostic services as helpful though not statistically significant. Sex/gender was not associated with perceived helpfulness of diagnostic process and post-diagnostic services among care partners. Satisfaction with and awareness of services were associated with perceived helpfulness among care partners.<b>Discussion:</b> These findings underscore the necessity for sex/gender-based research to enhance dementia care and for tailored interventions.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241289471"},"PeriodicalIF":0.0,"publicationDate":"2024-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142395713","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}