Dementia (London, England)最新文献

{"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":"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":"1077-1091"},"PeriodicalIF":2.2,"publicationDate":"2025-08-01","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":"Post-diagnostic support in Australia: Perspectives of people recently diagnosed with dementia and their carers.","authors":"Slađana Pavković, Lynette R Goldberg, Maree Farrow, Jane Alty, Melissa Abela, Lee-Fay Low","doi":"10.1177/14713012251333880","DOIUrl":"10.1177/14713012251333880","url":null,"abstract":"<p><p><i>Introduction:</i> Timely post-diagnostic support is necessary to help people with dementia and those who provide care adapt to the diagnosis and optimise independence and quality of life. However, evidence from people with dementia and carers regarding the support they need is scarce. <i>Aim:</i> To explore the perspectives of people with dementia and their carers regarding the support they had been offered, barriers and facilitators to accessing such support, and support they viewed as desirable or ideal. <i>Method:</i> This was a cross-sectional qualitative exploratory study. Data were collected from individual interviews with 13 people recently diagnosed with dementia at nine Australian memory clinics and 17 carers. Interviews were conducted between September 2021 and October 2022. Reflexive thematic analysis was used to examine participants' comments under four topics: Current Care and Support, Barriers, Facilitators, and Desirable Care and Support. <i>Results:</i> Current Care and Support: Four themes emerged: Communication with empathy; Written information valuable but could be overwhelming; Referrals provided but not necessarily followed; A focus on prescribed anti-dementia medications. Under the topic of Barriers, three themes were derived: Dementia stigma restricts life after diagnosis; Disapointment in Health and Aged Care systems; Limited insight into and/or difficulty expressing own needs. Under the topic of Facilitators, comments focused on Support from family and friends is crucial. Under the topic of Desirable Care and Support, three themes emerged: A single person guiding ongoing post-diagnostic support; Support with driving concerns; Engaging and tailored information. <i>Conclusion:</i> Perspectives of people recently diagnosed with dementia and their carers identified the need to ensure that post-diagnostic support addressed their individual needs, was clear, ongoing and involved the support of family and friends to reduce barriers and facilitate access. The importance of guidance by a trusted professional support person was considered key in facilitating more effective post-diagnostic dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1134-1155"},"PeriodicalIF":2.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12276395/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059984","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":"The context, mechanisms and outcomes of intergenerational programmes involving people living with dementia in scotland: A realist, qualitative study.","authors":"Heather Emond, Fiona Kelly","doi":"10.1177/14713012251317767","DOIUrl":"10.1177/14713012251317767","url":null,"abstract":"<p><p>Intergenerational programmes, involving activity-based interventions designed to promote mutually beneficial interactions between participants, have been used in Scotland and further afield as a means of generating social inclusion between different age groups. There is growing interest in the potential outcomes of intergenerational programmes for people living with dementia in particular, with policy in Scotland recognising that people living with dementia and their carers may be at greater risk of loneliness and social isolation. Given this interest, there is a need to explore what 'intergenerational best practice' may look like for people living with dementia. Using data from semi-structured interviews with thirteen stakeholders involved in intergenerational practice and/or dementia policymaking, this study explored the contextual factors, mechanisms, and outcomes of intergenerational programmes in the Scottish context. Stakeholders perceived the concerns of carers, perceptions of risk, along with inaccessible venues and transportation to be important contextual factors. Mechanisms that helped ensure programmes offered full and appropriate participation opportunities included ongoing, flexible programme planning; the provision of purpose and roles; and the use of older participants' preferences, lived experience, and personhood. Overall intergenerational programmes were perceived to have the potential to promote beneficial outcomes for older participants living with dementia in Scotland.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1059-1076"},"PeriodicalIF":2.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12276388/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143415871","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":"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":"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":"1196-1222"},"PeriodicalIF":2.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12276406/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143426755","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":"The Importance of the Social Environment for People Living With Dementia and Their Carers: Qualitative Evidence From DETERMIND and PriDem on the Impact of COVID-19 Service Changes and Restrictions in England and Wales.","authors":"Kate Gridley, Marie Poole, Yvonne Birks, Ben Hicks, Josie Dixon, Alison Wheatley, Louise Robinson, Sube Banerjee","doi":"10.1177/14713012251361189","DOIUrl":"https://doi.org/10.1177/14713012251361189","url":null,"abstract":"<p><p>This paper presents evidence from multiple perspectives on the impact of changes to health and social care service delivery, and the related social environment, for people living with dementia and their carers during the COVID-19 pandemic. Qualitative interview data from 130 people living with dementia, family carers and health and social care professionals in England and Wales were collected for the DETERMIND and PriDem studies during the height of the COVID-19 pandemic (2020-2021). These were analysed abductively by members of both teams, applying the lens of person-centred dementia theory. The lack of in-person social and professional contact was of great concern during the pandemic to people living with dementia, family carers and health and social care professionals. Our overarching finding that service changes degraded the social environment of the person living with dementia had five sub-themes: (1) A state of limbo; (2) Social environment overlooked as a priority; (3) Effects on family carers; (4) Tensions between a medical versus person-centred approach; (5) Maintaining or regaining a focus on personhood. Crosscutting these was a risk that people who were already disadvantaged by isolation and impairment were most affected by service changes. Pressures on carers to facilitate and/or directly provide social stimulation in the absence of previous opportunities might explain the concurrent deterioration of carers' quality of life. Professionals worked hard to find ways to tailor support and facilitate social contact within the limits of pandemic restrictions, demonstrating that this is possible and should be prioritised. A further suggestion was to delineate dementia social groups as 'necessary care' in future, given their importance to the wellbeing of people living with dementia and their carers. We conclude that person-centred delivery can be achieved in even the most challenging of circumstances and should be a core consideration of future planning for crises, prioritising social wellbeing alongside medical need.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251361189"},"PeriodicalIF":2.2,"publicationDate":"2025-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144755252","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":"Having Their Cake and Eating it Too: An Exploratory Mixed-Methods Study on the Dietary Behaviours of Family Carers of Persons With Dementia.","authors":"Michael Smith, Natalie Dickinson, Nicholas Sculthorpe, Louise Ritchie, Rachel Kimble","doi":"10.1177/14713012251355832","DOIUrl":"https://doi.org/10.1177/14713012251355832","url":null,"abstract":"<p><p><b>Introduction:</b> While dementia caregiving is known to place considerable demands on carers, its impact on carers' own dietary behaviours and nutritional health remains poorly understood. Understanding how caregiving impacts carers' diet quality is essential to inform supportive interventions. Purpose: This study aimed to explore the diet quality of family carers of persons with dementia and identify caregiving-related factors influencing their nutrition. <b>Methods:</b> A concurrent mixed-methods design was employed with 30 family carers completing a quantitative online survey and 10 participating in qualitative semi-structured interviews to provide contextual depth. The online survey included demographic data, dietary intake via a validated 24-h recall, diet quality using the 14-Item Mediterranean Diet Adherence Screener (MEDAS), and food insecurity using the Food Insecurity Experience Scale (FIES). <b>Results:</b> Family carers were food secure according to the FIES, and their overall diet quality was moderate, with a mean MEDAS score of 6.6 ± 2.1. Eighty percent exceeded saturated fat and 43% exceeded free sugar intake recommendations. Only 33% of carers reported eating ≥5 portions of fruit and vegetables, with 23% meeting intake of dietary fibre. The findings from the semi-structured interviews demonstrated that caring for a family member with dementia could influence their own dietary behaviours, due to the practical aspects of caregiving and the evolving palates and capabilities of the person with dementia. <b>Conclusion:</b> Family carers of persons with dementia often fail to meet dietary recommendations despite moderate diet quality, with emotional burden, time scarcity, and competing priorities significantly influencing their own eating behaviours. These findings highlight the need for flexible, personalised interventions, such as digital tools, meal delivery services, embedded nutrition support, and peer network, that address carers' emotional stress, time constraints, and caregiving roles to improve their dietary behaviours.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251355832"},"PeriodicalIF":0.0,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144692602","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":"Corrigendum to \"Changing Care Practices and Culture in a Specialised Unit for People With Behavioural and Psychological Symptoms of Dementia\".","authors":"","doi":"10.1177/14713012251362028","DOIUrl":"https://doi.org/10.1177/14713012251362028","url":null,"abstract":"","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251362028"},"PeriodicalIF":0.0,"publicationDate":"2025-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144661155","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":"Qualitative Perspectives of Young-Onset Dementia Care in Australia: A Thematic Analysis From the Joint Solutions Project.","authors":"Clare Beard, Priscilla Tjokrowijoto, Debbie Stange, Nathan M D'Cunha, Naomi Moylan, Monica Cations, Adrienne Withall, Jade Cartwright, Samantha M Loi","doi":"10.1177/14713012251360600","DOIUrl":"https://doi.org/10.1177/14713012251360600","url":null,"abstract":"<p><p>People with young-onset dementia in Australia face significant challenges due to inconsistencies in diagnostic and post-diagnostic care. These challenges stem from a general lack of knowledge of young-onset dementia, limited age-appropriate supports, and inconsistent services that are available for people with young-onset dementia. The lack of awareness, insufficient professional training, and inadequacies in services exacerbate these challenges, and geographic disparities exist. In 2024, the J<i>oint Solutions Young-onset Dementia</i> project aimed to explore the care experiences of people with young-onset dementia in Australia, highlighting gaps, barriers, and positive aspects of the care pathway This paper presents the emergent themes derived from the <i>Joint Solutions</i> project. Using qualitative methodology, we gathered optional free-text data from a pool of 313 survey participants and feedback from 47 focus group participants, including individuals with young-onset dementia, caregivers, general practitioners, and community service providers. A thematic analysis generated six key recurring themes and patterns underscoring the needs of this population. These themes highlight the necessity to (1) increase <i>knowledge, information, and education</i> relating to young-onset dementia; (2) improve services to manage the <i>psychosocial implications</i> associated with young-onset dementia; (3) ensure sufficient <i>requisites</i> are in place to provide necessary support and preparedness; (4) enhance the <i>accessibility and availability</i> of age-relevant services; (5) consider the impact young-onset dementia has on personal <i>finances</i>; (6) reduce <i>bureaucracy</i> to obtaining support. These findings emphasise the urgent need for a nationally consistent care pathway to address young-onset diagnostic and post-diagnostic care. A comprehensive framework must be developed, offering a diverse range of resources and services tailored to meet the unique needs of individuals diagnosed with young-onset dementia and their families.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251360600"},"PeriodicalIF":0.0,"publicationDate":"2025-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144621507","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 Systematic Review of Communication-Focused Dementia Interventions for Indigenous Communities.","authors":"Megan Eustace, Campbell Le Heron, Jeanette King, Katrina McGarr, Catherine Theys","doi":"10.1177/14713012251358912","DOIUrl":"https://doi.org/10.1177/14713012251358912","url":null,"abstract":"<p><p>Dementia is a significant challenge for many Indigenous peoples who face inequities in risk factors, prevalence, progression rates, and access to quality healthcare. Culturally relevant interventions are needed across the care pathway, however, little evidence exists to guide culturally relevant communication support. This systematic review aims to understand dementia communication interventions developed for Indigenous populations and explore factors relating to their effectiveness. A systematic search of databases, repositories, and search engines was conducted. We took a comprehensive approach to communication, considering the communication skills and abilities of people with dementia, their communication partners, healthcare providers, and community-level information sharing. Studies were required to evaluate an intervention targeting communicative skills, communicative ability, or health communication and include a cultural focus on one or more Indigenous communities. Quality was appraised using an adapted Well Living House Quality Appraisal Tool. Six studies met inclusion criteria, with most studies (<i>n</i> = 5) conducted from 2019 onwards. No studies evaluated an intervention targeting communicative skills and abilities for people with dementia, their communication partners, or healthcare providers. All included studies evaluated a health communication intervention. Interventions utilised various resources, including storybooks, videos, flipcharts, posters, handouts, worksheets, fact sheets, and training modules, tailored towards Indigenous communities across Canada, the United States, and Australia. Content about dementia and dementia management varied across interventions. Analysis identified key benefits of the interventions and three factors influencing their effectiveness: (1) representation of Indigenous people, cultures, and languages in resources, (2) methods and settings for knowledge sharing, and (3) communication, connection, and collaboration. While content within resources and methods for information sharing should be tailored to local communities, common elements may support health communication developments across Indigenous contexts. Further research is needed to develop interventions specifically targeting communication skills and conduct methodologically strong evaluations.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251358912"},"PeriodicalIF":0.0,"publicationDate":"2025-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144612360","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Challenges in the Dementia Care Triad: A Qualitative Study From a Danish Day Care Center.","authors":"Sofie Smedegaard Skov, Rodrigo Serrat, Anja M B Jensen, Anna Paldam Folker, Sigurd Lauridsen","doi":"10.1177/14713012251360596","DOIUrl":"https://doi.org/10.1177/14713012251360596","url":null,"abstract":"<p><p>While research on the ethical challenges of dementia care has advanced significantly in recent years, research gaps remain that require further exploration. First, research has focused on specific ethical principles, such as autonomy. Second, it has largely examined ethical issues from a single perspective, focusing primarily on professional caregivers. Finally, research has been conducted in institutional settings, overlooking the challenges that arise in other contexts, such as day care centers (DCCs). This study investigates perceived ethical challenges in dementia care within a DCC from a triadic perspective, incorporating the voices of people with dementia, family caregivers, and professional caregivers. Using an exploratory qualitative approach, data were collected through participant observation and semi-structured interviews. Thematic analysis was employed to identify main themes, with the analyses informed by a combination of principlism and a narrative approach to ethics. The study, conducted at a Danish DCC, highlights three main ethical challenges: professionals' management of people with dementia's varying functional levels, collaboration between family and professional caregivers, and relationship dynamics between people with dementia and their family caregivers at home. These challenges are co-constructed, shaped by both individual and shared narratives, underscoring the need to consider all perspectives involved. Moreover, ethical challenges are context-dependent, varying across different care settings. This study emphasizes the importance of integrating a narrative care approach to ethics to fully capture the complexity of ethical dilemmas in dementia care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251360596"},"PeriodicalIF":0.0,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144602429","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}