Dementia (London, England)最新文献

{"title":"\"Necessity is the mother of invention\": Experiences of accessing and delivering dementia-related support services by information communication technology during the pandemic in the UK.","authors":"Thaïs Caprioli, Stephen Mason, Hilary Tetlow, Stan Limbert, Siobhan Reilly, Clarissa Giebel","doi":"10.1177/14713012241272906","DOIUrl":"10.1177/14713012241272906","url":null,"abstract":"<p><strong>Introduction: </strong>The remote delivery of dementia-related support services by information communication technology, defined as any hardware or software, including the telephone and videoconferencing software, increased during the coronavirus pandemic. To guide the future use of information communication technology, this study explored the experiences of delivering and accessing social care and support services during the pandemic in the UK.</p><p><strong>Method: </strong>Remote semi-structured interviews with social care and support providers, people with dementia and family carers were conducted between May-December 2022. Topic guides were co-developed with two public advisors (one former family carer, one person with dementia) and garnered information on delivering and accessing services during the pandemic. Audio recordings were transcribed verbatim. Employing a mixture of inductive and deductive analytic approaches, a thematic analysis was conducted.</p><p><strong>Results: </strong>Twenty-one interviews (<i>n</i> = 14 social care and support providers; <i>n</i> = 6 family carers; <i>n</i> = 2 people with dementia) were conducted. Three themes were generated: adapting to changing circumstances; responding to unmet needs by information communication technology and information communication technology should be a tool, not the default. Social care and support providers' creativity and motivation facilitated the adoption of information communication technology, however, available resources and guidance varied. While some people with dementia and family carers benefitted from accessing services by information communication technology to address some needs, the format was not suitable for everyone.</p><p><strong>Conclusions: </strong>Beyond the coronavirus pandemic, the use of information communication technology within service delivery needs to be carefully considered, to avoid disenfranchising some people with dementia and family carers, while empowering people with the option of how to access services. Digital training and guidelines advising the use of information communication technology within service delivery may facilitate its improved use during the current landscape, and amidst future pandemics.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"323-343"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11780963/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141908520","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":"Social workers' consideration of dental support for people living with dementia: Findings from interviews and care assessment documentation.","authors":"Dia Soilemezi, Kristina Wanyonyi, Valerie Hill, Jill Manthorpe","doi":"10.1177/14713012241284779","DOIUrl":"10.1177/14713012241284779","url":null,"abstract":"<p><p>Social work assessments underpin support plans for many people living with dementia in their own homes in England, but it is unclear how they acknowledge that dementia places people at greater risk of mouth and dental problems affecting their wellbeing. We explored if and how dental needs are addressed during care assessments and social workers' perceptions of this aspect of personal care. This study analysed (a) semi-structured interviews with 14 social workers providing support to people living with dementia in their own homes, (b) data from 39 care assessments and support plans from two English local authorities. Interviews were recorded online, transcribed, and thematically analysed. Documents were analysed descriptively and presented visually. Participants acknowledged that oral care may be overlooked during assessments and reflected on various reasons, including assumptions of responsibility and role restrictions, limited training, and poor links with dental services. This was further evident in the analysis of assessment documentation. Participants identified potential strategies and practice changes to better integrate oral care in social work practice. These included increased awareness and more discussions around dental needs, skills training and streamlining of support. The findings have implications for social workers, educators, and commissioners or funders engaging with people affected by dementia in social work and beyond.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"290-309"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11780968/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142302425","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":"Community health workers supporting diverse family caregivers of persons with dementia: Preliminary qualitative results from a randomized home-based study.","authors":"Jung-Ah Lee, Julie Kim, Julie Rousseau, Eilleen Sabino-Laughlin, Eunae Ju, Eunbee Angela Kim, Amir Rahmani, Lisa Gibbs, Adeline Nyamathi","doi":"10.1177/14713012241302367","DOIUrl":"10.1177/14713012241302367","url":null,"abstract":"<p><strong>Background and objectives: </strong>Culturally diverse informal caregivers of community-dwelling persons with dementia face challenges in accessing dementia care resources due to language barriers and cultural stigmas surrounding dementia. This study presents the perceived intervention experiences of a home-based approach which considers the cultural and linguistic needs of diverse family caregivers in dementia care. The intervention model includes home visits by trained bilingual, non-licensed community health workers (CHWs) whose cultural histories and understandings reflect that of the caregivers. The purpose of the present study was to understand family caregivers' experience in caregiving and their feedback on the intervention, which includes caregiver support through education and skill development.</p><p><strong>Methods: </strong>The present study thematically analyzed qualitative data from exit interviews with caregivers who participated in a CHW-led, 12-week home visit-based intervention program.</p><p><strong>Results: </strong>Among 57 caregivers (mean age = 63.5, SD = 14.3) who participated in the 3-month home-visit intervention and completed the exit interviews, 33% were Korean Americans, 28% Vietnamese Americans, 21% non-Hispanic Whites, and 17.5% Latino/Hispanic. The majority were females (81%) and spouses (51%). Main themes include, (a) Individual Level: Improvements in Caregiving Self-efficacy and Self-care Awareness, (b) Relational Level: Enhanced Communications and Relationships with Persons with Dementia, and (c) Community Level: Connection and Access to Community Resources and Support.</p><p><strong>Conclusion: </strong>Interview data show that the culturally and linguistically tailored program supported diverse caregivers by increasing self-care awareness, improving knowledge about dementia and dementia care, strengthening communication skills, and facilitating access to community resources. Strong rapport between CHWs and caregivers enhanced the effectiveness of the intervention. Future approaches can focus on supporting caregivers with especially limited resources.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"249-268"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11780965/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142670103","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":"A comparison of written case notes and the delivery of care in dementia specialist mental health wards.","authors":"Ian Davies-Abbott, Joanne Daunt, Emma Roberts","doi":"10.1177/14713012241274994","DOIUrl":"10.1177/14713012241274994","url":null,"abstract":"<p><p><b>Introduction:</b> Stigmatising language concerning people living with dementia can cause potentially harmful and dehumanising consequences. Language used about people living with dementia in mental health wards may focus on medical perspectives and suggest custodial relationships with patients rather than person-centred accounts of individuals. This language could have a devastating impact on the provision of person-centred care. This study investigated the relationship between accounts of people living with dementia written in healthcare case notes and clinical practice at three dementia specialist wards in Wales, UK. Language guidance was provided to ward staff to assess whether stigmatising language could be reduced and whether this influenced the provision of person-centred care.<b>Methodology:</b> Dementia Care Mapping was adapted to analyse case note entries for enhancing and detracting accounts of people living with dementia at three data collection points. These were compared to the results of routine DCM observations of care across the three wards. The healthcare case notes of 117 people living with dementia, encompassing 4, 522 entries over ten months were analysed. DCM observations of 38 people living with dementia within the three wards were compared against the case note results. Person-centred language guidance was shared with care staff following each data collection point.<b>Results:</b> Following the provision of person-centered language guidance, the use of personally enhancing language was observed to increase across all three wards. Non-person-centred case note entries predominantly focussed on Labelling language, whilst language concerning Invalidation and Objectification also occurred frequently compared to other DCM domains. Person centred language typically concerned Acknowledgement. A relationship between case note entries and practice was evident in some domains although findings were inconsistent.<b>Discussion and Implications:</b> The findings highlight the importance of addressing stigmatising language in healthcare and suggest that further studies to support the anti-stigma agenda in dementia care are required.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"310-322"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11780970/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141989630","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 impact of social isolation and loneliness on the well-being of carers of a person with dementia in aotearoa New Zealand.","authors":"Kirsten Robertson, Maree Thyne, Rob Thomson, Leah Watkins","doi":"10.1177/14713012241279683","DOIUrl":"10.1177/14713012241279683","url":null,"abstract":"<p><p>Dementia is a leading cause of disability, and as the population ages, there will be a greater need for friends and family to care for people with Dementia. Unfortunately, informal care for a person with dementia is associated with poor psychological and physical health and lower quality of life of the caregiver. The aim of the present study was to understand how to best support caregivers within their communities by examining their experience of loneliness, isolation, and their relationship with well-being. The study used a representative sample of the New Zealand population in terms of ethnicity, age, gender, education, and income and asked people if they were a primary caregiver of a person with Alzheimer's Disease or related disorder. Both loneliness and isolation were linked to overall well-being; however, loneliness was a stronger predictor of satisfaction with relationships and feeling part of one's community. The findings highlight the importance of examining the multi-factorial constructs of social connectedness and question research attributing loneliness solely to reduced social involvement. As such, interventions for caregivers of a person with dementia need to target feelings of loneliness as well as their social isolation.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"235-248"},"PeriodicalIF":0.0,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11780974/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142115599","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":"Exploring experiences of dementia post-diagnosis support and ideas for improving practice: A co-produced study.","authors":"Jemima Dooley, Joe Webb, Roy James, Harry Davis, Sandy Read","doi":"10.1177/14713012241312845","DOIUrl":"https://doi.org/10.1177/14713012241312845","url":null,"abstract":"<p><p>It takes time to adjust to a diagnosis of dementia. Post-diagnosis support has an important part to play in navigating this transition. However, it is often scarce and variable according to location. This co-produced study explored experiences of support across the UK. The project was co-designed and implemented with people living with dementia. Five focus groups were attended by 18 people with dementia and 10 spouses from across the UK. The aim was to find out what support people currently received, what aspects they valued, and what they would like to see done differently. Most participants reported feeling abandoned after diagnosis, with little continuity of care. Many felt the burden of navigating post-diagnosis life was on them and their loved ones, with a perceived scarcity of support, and difficulties navigating the benefits system. Peer/voluntary support was seen as vital in promoting confidence, a source of relational support, and finding out crucial information relating to benefits, healthcare, and management of symptoms. Participants felt dementia was stigmatised, receiving less support than other medical conditions. Participants identified aspects of post-diagnosis support they valued, and collaborated on ideas for support structures and services they would like to see introduced. In concluding this study, we argue that post-diagnosis support services could be improved with the input of people living with dementia. This could reduce the burden on those receiving the diagnosis to find advice and support outside of health and social care systems. For future research, the financial implications of a dementia diagnosis have rarely been discussed and warrants further exploration.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241312845"},"PeriodicalIF":0.0,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143061461","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":"\"I forgot she used to make chocolate cake\": Digital storytelling supporting person-focussed dementia care: A qualitative thematic analysis.","authors":"Stephanie Munk, Rhiannon Toohey, Aliaa Remtilla, Nathan M D'Cunha, Diane Gibson, Stephen Isbel, Aisling Smyth, Kasia Bail","doi":"10.1177/14713012251317761","DOIUrl":"https://doi.org/10.1177/14713012251317761","url":null,"abstract":"<p><p>Reminiscence is a meaningful activity for people with dementia, but research implementing digital reminiscence tools into environments with older people is not well developed. This project sought to understand the effectiveness of a digital reminiscence tool in aiding person-centred dementia care with people attending a day respite centre and a group residential home, in metropolitan eastern Australia. This study used semi-structured interviews and ethnographic observations using a qualitative reflexive thematic analysis with seventeen participants including people with dementia (<i>n</i> = 8), their loved ones (<i>n</i> = 5) and staff <i>n</i> = 4) Themes identified were: 1. Remembering myself; 2. Reminiscing the person before and with dementia; 3. Enhanced relationships through self-expression; 4. Person-centred adaptation and the art of the interview; and 5. Future potential. Findings indicate that the StoryTiling app was user-friendly, supported reminiscence activities and enhanced person-centred care. The reminiscence activity enhanced relationships between participants, families, and carers, facilitating a deeper knowing of the person with dementia. The activities supported positive memories and emotions and helped reinforce the identity of the person with dementia in both their own mind, and their loved ones. The information captured in the StoryTiling process enabled person-centred care in improving the ability to know a person and being able to relate and respond to their individual needs, wants and goals. The process was dependent on the 'art of the question' and the 'art of the interview', particularly by people who know the person with dementia and are trauma-informed in order to effectively progress interviews and utilise them within the care environment. Enabling nudge activities that promote person-centred engagement such as reminiscence through digital storytelling may help foster person-centred care in the aged care sector.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251317761"},"PeriodicalIF":0.0,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143061393","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":"\"There is always a reason why someone is doing something\": The importance of life history and personhood when supporting people with dementia to \"wander\" in care homes.","authors":"Yelena Mikhaylova-O'Connell, Alys Wyn Griffiths, Iria Cunha, Reena Devi, Karen Spilsbury, Mary Gemma Cherry","doi":"10.1177/14713012251316679","DOIUrl":"10.1177/14713012251316679","url":null,"abstract":"<p><p>Up to 60% of people living with dementia who reside in care homes will 'wander' at some point. A person-centred approach should be taken to support each person's individual needs through tailored interventions when wandering. This study aimed to identify care home staff perspectives on what supports safe wandering for people living with dementia in care home environments. As part of a larger study, and using a person-centred framework, semi-structured qualitative interviews were conducted with staff (<i>N</i> = 19) recruited from care homes in the North of England who provide care for older people. Transcripts were analysed using framework analysis. Four themes were identified, and two of these themes are presented here. Staff highlighted the importance of <b><i>ensuring that personhood is at the centre of care delivery</i></b> when supporting residents to wander. Clear leadership from management and meaningful involvement of families allowed staff to provide better support for residents. Staff also reflected on the <b><i>importance of identification of unique impacts of dementia on each individual</i></b> when providing person-centred care. The delicate balance between safety and well-being was consistently considered and reviewed. We identified a range of individual factors that contribute towards safe and supported wandering for people living with dementia. Positive risk taking, supported by policies and procedures, such as resident safety and meaningful activity, may allow staff to manage the benefits and risks associated with wandering.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251316679"},"PeriodicalIF":0.0,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143048689","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":"Social representations of dementia. A qualitative inquiry into perspectives of people with dementia, professionals, and informal caregivers.","authors":"Diego Romaioli, Edoardo Pesce, Giacomo Chiara","doi":"10.1177/14713012251316962","DOIUrl":"https://doi.org/10.1177/14713012251316962","url":null,"abstract":"<p><p>Using a theoretical framework that underscores the social dimension of meaning-making processes, this study delved into the social representations of dementia in the Italian context and the personal meanings expressed by three distinct groups of participants. The study involved ninety-two episodic interviews with people living with dementia and those who had provided care as professionals or informal caregivers. The collected data underwent various types of analysis. A hierarchical descending analysis was initially conducted using IRaMuTeQ to elucidate the lexical worlds that form the shared idea of dementia. This was followed by a more interpretative thematic analysis using Atlas.ti. The results reveal the diverse perspectives of the groups in articulating the contents of social representations, which can guide actions in the care and management of the disease.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251316962"},"PeriodicalIF":0.0,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143043687","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 accessibility to the dementia risk profile (DRP) and knowledge of dementia risk reduction (KoDeRR) measuring tools to diverse communities through translation and adaptation in the Nepali language.","authors":"Yashi Koirala, Kathleen Doherty, Claire Eccleston, James Vickers","doi":"10.1177/14713012251315329","DOIUrl":"https://doi.org/10.1177/14713012251315329","url":null,"abstract":"<p><p>Dementia is one of the fastest emerging global public health concerns today, as the World Health Organisation has predicted that the number of cases will triple from 55 million in 2023 to 152 million by 2050. Current evidence indicates that approximately 45% of dementia cases can be prevented or delayed by acting on potentially modifiable risk factors. However, public knowledge regarding this remains unknown in numerous poorly resourced countries, including Nepal, where the prevalence of dementia continues to increase. The lack of availability of dementia knowledge or risk-measuring tools in the native language may be accountable for this identified gap. Thus, our study aimed to translate and culturally adopt two significant measuring tools, KoDeRR, which measures the Knowledge of Dementia Risk Reduction and the DRP, which generates a Dementia Risk Profile focusing on 9 modifiable risk factors identified by WHO. KoDeRR and DRP have been translated and adapted into Nepali following the TRAPD protocol. Cognitive interviews were then conducted with five bilingual individuals to pre-test KoDeRR and DRP for cultural appropriateness, face validity, and appropriateness of language usage. Certain terms, including dementia, do not exist in Nepali, and some English words do not have direct translation. Similarly, some English words must be translated into multiple Nepali words to suit audiences from different literacy levels and various regions of Nepal. It is essential to be mindful of the choice of words used in the tools since intergenerational language disparities exist in Nepali-speaking communities, and the cultural appropriateness of the language used can vary from one language to another. Translating and adapting dementia survey tools into non-English languages is challenging and time-consuming. Despite these challenges, translating and adapting measuring tools such as KoDeRR and DRP in non-English languages will facilitate researchers' understanding of risk reduction knowledge and the risk profile of diverse communities.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012251315329"},"PeriodicalIF":0.0,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142985272","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}