Dementia (London, England)最新文献

{"title":"Communication Strategies Used in Primary Progressive Aphasia: A Scoping Review.","authors":"Inês Cadório, Daniela Vieira","doi":"10.1177/14713012251356588","DOIUrl":"https://doi.org/10.1177/14713012251356588","url":null,"abstract":"<p><p>Primary progressive aphasia describes a group of language-led dementias that affects an individual's ability to speak, comprehend, read and write. While post-stroke aphasia has been the subject of extensive research, particularly in the domain of communication strategies, the same level of research interest has not been observed in PPA. This is indicative of a significant knowledge gap regarding effective communication strategies in PPA. The present review aims to outline the current research evidence related to the range of communication strategies employed within PPA individuals and their effectiveness. A series of studies were considered, encompassing patients diagnosed with PPA, their spouses and/or other communication partners, provided that data on the utilization and training of communication strategies was addressed. A total of 26 non-experimental and experimental studies met the inclusion criteria. Communication strategies retrieved varied from verbal, to non-verbal, environmental modification strategies and partner adaptation strategies. The findings demonstrate that assistive augmented communication strategies have a positive impact on communication interactions. Furthermore, the multiple use of different modalities ensures the optimal conveyance of messages. Consequently, the degree of independence exhibited by the subjects increases, as does their overall quality of life.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251356588"},"PeriodicalIF":0.0,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144602428","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":"Preliminary Implementation of a Dementia-Focused Risk Negotiation Conversation Tool Into Aged Care Practice.","authors":"Claudia Meyer, Linda Schnitker, Arti Appannah, Kate Laver, Fleur O'Keefe, Judy Lowthian","doi":"10.1177/14713012251356007","DOIUrl":"https://doi.org/10.1177/14713012251356007","url":null,"abstract":"<p><p>A key principle of best practice dementia care is providing access to support for making, communicating and participating in decisions affecting a person's life, whether for day-to-day activities or more complex decisions. Implementing a fit-for-purpose tool into routine care has challenges and requires careful planning to ensure success and sustainability. This project aimed to utilise implementation science principles to embed a dementia-focused risk negotiation conversation tool (<i>Enabling Choices)</i>, into an Australian community aged care service. A mixed methods exploratory design was employed. Co-design workshops identified contextual barriers and enablers, and developed behaviour change strategies for implementation support. Following training to build knowledge and skills in <i>Enabling Choices</i>, community aged care workers were expected to use the tool three times over 4-months with people with dementia and care-partners. Two geographic regions received formal implementation support while another two did not. Implementation outcomes of feasibility, acceptability and appropriateness, reach and adoption, were evaluated via interviews and audit of clinical records. Contextual barriers and enablers were identified. Implementation strategies aligned with capability, opportunity and motivation for behaviour change. Training was delivered to 62 care managers who used the tool with people with dementia or care-partners (<i>n</i> = 31). Interview themes for care managers (across all regions) were (1) augmenting care; (2) flexible and supportive training; (3) articulating target audience; and (4) overcoming hesitancy. Interviews with people with dementia/care-partners provided further insights. Synthesised findings highlighted that implementation support was beneficial, and feasibility of <i>Enabling Choices</i> likely impacted reach and adoption. Implementation of <i>Enabling Choices</i> into routine community aged care practice offered valuable insights into the critical role of inner and outer contextual barriers and enablers. Sufficient attention on capability, opportunity and motivational components of behaviour change was important, with the link identified between acceptability, feasibility and appropriateness, for reach and adoption of an innovation.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251356007"},"PeriodicalIF":0.0,"publicationDate":"2025-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144562146","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 \"Made a Huge Difference when He had a Dry Bed in the Morning\": Impacts of Dementia-Related Incontinence on Unpaid Carers' Sleep, Health, and Quality of Life.","authors":"Rosemary Gibson, Jaime Fearn, Vanessa Burholt","doi":"10.1177/14713012251356825","DOIUrl":"https://doi.org/10.1177/14713012251356825","url":null,"abstract":"<p><p>Incontinence is a common consequence of dementia. Incidence is more likely at night, having repercussions for sleep quality and the exacerbation of waking symptoms of dementia as well as negative carer affect. However, the person-centred experience is underrepresented. A thematic analysis was conducted on continence-related comments from a pool of 94 carers participating in a postal sleep survey. Then, a narrative analysis was used on interview transcripts from 13 participants who took part in follow-up interviews after their care recipient had transitioned into aged residential care. Themes illustrate how promoting continence or managing incontinence impacts unpaid caregivers in terms of sleep disruptions and subsequent wellbeing. These are presented alongside overarching narratives of sleep, continence, and caregiving. Including the physical nature of continence-related support and its impact on sleep practices, as well as the emotional impact of balancing sleep needs alongside caregiving responsibilities and overall wellbeing with ageing. Toilet use and (in)continence needs can have profound impacts on sleep and wellbeing within dementia care, having the potential to jeopardise the overall home care situation. Findings will inform future research in the field of sleep and ageing as well as strategies for supporting families affected by dementia. In particular, the results will inform the production of a core outcome set comprising appropriate quality indicators for people living with dementia, their caregivers, and family so that adequate continence care can be assessed and supported in future interventions.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251356825"},"PeriodicalIF":0.0,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144556063","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":"Pain Management in People With Dementia Living in Nursing Homes: A Focused Ethnographic Study.","authors":"Caroline Kreppen Overen, Siren Eriksen, Maria Larsson, Adelheid Hummelvoll Hillestad","doi":"10.1177/14713012251358003","DOIUrl":"https://doi.org/10.1177/14713012251358003","url":null,"abstract":"<p><p>The literature on pain management for people with dementia in nursing homes places significant emphasis on the limitations dementia imposes on their ability to describe and express their pain. Little is known about how healthcare personnel can support and use the individual resources people with dementia have in pain management. Thus, this study aimed to explore pain management in people with dementia in nursing homes, focusing on the resources people with dementia have and how healthcare personnel can support and integrate these resources into their clinical practice. We applied an exploratory design with a focused ethnographic approach and collected data through participatory observations and field conversations, as well as notes from residents' medical charts. The study setting was a nursing home unit specializing in dementia care in a larger city in Norway. The study included residents with moderate- to severe stage dementia (<i>n</i> = 18) and nurses caring for them (<i>n</i> = 12). The data were analysed in line with qualitative content analysis. The analysis identified two categories: (a) Residents' pain narratives and (b) Nurses' interpretation and support. Within each category, several subcategories were identified. The categories are linked together in one overarching, latent theme describing how people with dementia express themselves in the moment and nurses integrate these moments into a coherent whole. Findings also indicate that people with dementia have individual resources and strengths that are important for pain management. With support from healthcare personnel, they can be active participants in pain management processes, in accordance with their individual abilities.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251358003"},"PeriodicalIF":0.0,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144556064","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":"Participation of persons living with dementia in research: A means to address epistemic injustice.","authors":"Ulla Halonen, Mari Aaltonen, Lina Van Aerschot, Jari Pirhonen","doi":"10.1177/14713012241299015","DOIUrl":"10.1177/14713012241299015","url":null,"abstract":"<p><p>Epistemic injustice refers to wronging or mistreating individuals in terms of their capacity as knowers, based on prejudices or negative attitudes. Excluding people with dementia from research is a form of epistemic injustice. In this article, we discuss epistemic injustice associated with data collection processes and the participation of people with dementia in scientific research. The challenges of participation that we discuss pertain to the role of gatekeepers and ethical research perspectives. The arguments presented are based on previous research, experiences from our current project, and critical self-assessment regarding the latter. The aim is to shed light on what enables or prevents people living with dementia from participating in research, and how this is connected to epistemic injustice. It is known that prejudices related to dementia affect both researchers and people living with dementia: the former tend to exclude people with dementia, and the latter may practice self-silencing due to dementia-related stigma. In addition to these individual issues, we argue that epistemic injustice occurs at a structural level, where a major role is played by gatekeepers and research ethics panels. As close family members, health officials, and dementia-related associations are the main gatekeepers, their attitudes and perceptions are highlighted. In terms of ethical issues, the concept of informed consent needs to be elaborated. If the research is not expected to harm participants and may contribute to improving the lives of those with dementia, the perspective should be shifted from informed consent to ongoing consent assessment. While acknowledging the features and symptoms of dementia, researchers should be more courageous, trust in the good cause, and enable persons living with dementia to participate in research that concerns them. This is the only way for researchers to genuinely understand the social world, experiences, and needs of those with dementia and to address epistemic injustice.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"850-865"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12171031/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142607678","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":"\"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":"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":"902-918"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","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":"Comparing two caregiver-delivered music listening interventions for community-dwelling people with dementia: A randomised controlled crossover pilot trial.","authors":"Lena M Hofbauer, Pd Francisca S Rodriguez","doi":"10.1177/14713012251334185","DOIUrl":"10.1177/14713012251334185","url":null,"abstract":"<p><p><b>Objectives:</b> To facilitate access to music-based interventions (MBIs) for people with dementia in the community, it is necessary to develop MBIs that can be used by people with dementia and their informal caregivers at home. In this pilot trial, we aimed to establish whether using slow and fast music of positive valence in a caregiver-delivered MBI results in differential effects. <b>Methods:</b> 17 person-with-dementia-and-caregiver dyads were randomised. Dyads underwent 6-week periods of two music listening interventions, 'MBI A' (consisting of fast, positively valenced music) and 'MBI B' (slow, positively valenced music). The order of these was crossed-over. Half of the dyads also completed a control intervention (6-week care-as-usual). People with dementia listened on tablets or CDs provided. Quantitative assessments included person with dementia outcomes (cognition, well-being, quality of life) and caregiver-reported outcomes (behavioural and psychiatric symptom severity and related distress). Dyads' descriptions of experiences were also recorded. <b>Results:</b> MBI A was associated with superior delayed recall compared to MBI B (MBI A- B: 1.04 [95% CI: 0.16, 1.92], <i>p = .028, Hedge's g</i>_<i>av</i> <i>= 0.70</i>). Dyads' descriptions highlight 'in-the-moment' effects of the MBIs. Positive effects of MBI A included heightened mood and movement (e.g. clapping), MBI B was associated with relaxation. <b>Conclusions:</b> The positive effect of MBI A on delayed recall performance suggests that fast, positively valenced music may be explored further to support cognition in people with dementia. Dyads' reports underline the value of music listening to the momentary well-being of people with dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"938-954"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12171056/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143998985","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":"Music in Mind Training: Producing a theory of change model to evaluate the implementation of an improvisation-based music-making training programme for care home staff working with people with dementia.","authors":"Dougal Henry James McPherson, Robyn Dowlen, Caroline Bithell, Alexander Gagatsis, Alys Young, Lizzie Hoskin, Max Thomas, Cathy Riley, John Keady","doi":"10.1177/14713012251319589","DOIUrl":"10.1177/14713012251319589","url":null,"abstract":"<p><p>BackgroundIn the UK, care home staff are often involved in musical practices as part of their professional activities. However, to date there is a lack of relational evidence that underpins improvisational music-making programmes in care homes, as related to the wellbeing of care home staff and musicians who deliver such work. This process evaluation accesses Manchester Camerata's 20-week 'Music in Mind Training' programme for care home staff working with people living with dementia in care homes, with a focus on care home staff.Aims(i) To produce a Theory of Change model outlining the core mechanisms of change for Music in Mind Training; (ii) To evaluate the 'in-the-moment' and prospective impact of Music in Mind Training on participating care home staff practice and wellbeing.MethodsConducted in two care homes, the study employed online observation of hour-long training sessions (<i>n</i> = 18), semi structured interviews with participating staff and musicians (<i>n</i> = 4), and oral histories interviews with stakeholders involved in programme development (<i>n</i> = 18).FindingsParticipating care home staff reported a general increase in their motivation, wellbeing, and confidence through taking part in the training programme, while indicating a drop in confidence related to future delivery at the programme end. The study also indicated how care home staff implemented change to their day-to-day practice by incorporating their learning into interactions with residents in structured music sessions, and more broadly in daily interactions.ConclusionThe presented Theory of Change model details core interpersonal mechanisms of change for this musical training programme, centred on (1) collaboration, (2) shared values, (3) respect and validation, and (4) openness and reflection, outlining pathways for impact regarding practice change and staff wellbeing. Subject to further refinement and testing, the model could be applied to other contexts to help provide a more rounded account of education and training in dementia care settings.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"866-883"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12171039/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143400836","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":"Impact evaluation of a dementia-friendly community mural: Planting a seed for change.","authors":"Laura Garcia Diaz, Evelyne Durocher, Paula Gardner, Carrie McAiney, Lori Letts","doi":"10.1177/14713012251333864","DOIUrl":"10.1177/14713012251333864","url":null,"abstract":"<p><p>Stigma against persons living with dementia negatively impacts their quality of life. One of the aims of dementia-friendly community initiatives is to reconstruct public perceptions of dementia through dementia awareness campaigns. In this paper we present the findings of an evaluation of the impact of a Canadian dementia-friendly community mural on raising awareness about dementia, and lessons learned from the process undertaken to create the mural. Using a practical participatory evaluation research approach, the research questions and data collection methods were co-created with the team that led the community mural, which was comprised of four people living with dementia. Numerous data collection methods were used to support this outcome evaluation including observations, interviews and focus groups, and social media tracking. Findings indicate that while the process of creating the mural, and the mural itself, have planted a seed for increased dementia awareness and inclusion of persons living with dementia in the community, to create social change complementary awareness raising efforts are needed.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"919-937"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12171068/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144045639","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":"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":"835-849"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","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}