Dementia (London, England)最新文献

{"title":"The relationship at the heart of the experience of daughter caregivers of a parent with dementia: An interpretative phenomenological analysis.","authors":"Elena Ruyant Belabbas, Charlotte Manceau, Emilie Wawrziczny","doi":"10.1177/14713012231220223","DOIUrl":"10.1177/14713012231220223","url":null,"abstract":"<p><strong>Background: </strong>Parents with dementia require emotional, physical, psychological and financial support from their child caregivers to continue living at home. Daughter caregivers have been shown to be more involved in self-care and household tasks and to experience higher levels of distress than son caregivers.</p><p><strong>Objective: </strong>The aim of this study was to investigate the experience of daughter caregivers who provide informal care for a parent with dementia living in their own home.</p><p><strong>Method: </strong>Semi-structured interviews were conducted with 11 daughter caregivers of a parent with Alzheimer's disease. Interviews were analysed using Interpretative Phenomenological Analysis.</p><p><strong>Results: </strong>Three axes emerged from the analyses: [1] <i>the before conditions the after</i>: the quality of the previous relationship with the parent with Alzheimer's disease is a determining factor and allows the identification of three profiles of daughter caregivers: 'the grateful', 'the resentful' and 'the ambivalent', [2] <i>when the relationship protects against the sense of burden</i>: the feeling of being invaded by the caregiving situation is influenced by the quality of the relationship with the parent with Alzheimer's disease, and [3] <i>alone or almost</i>: the support network is desired when it is absent but kept at arm's length when it is present.</p><p><strong>Discussion: </strong>The results underline the importance of assessing the quality of attachment and supporting the relationship with the parent (especially when the relationship prior to the disease was difficult). Daughter caregivers should also be encouraged to delegate tasks and refocus their actions related to their values. Family mediation sessions may be planned to improve the organisation of care and set up an efficient collaboration.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"175-190"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813535","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":"Interventions for mitigating occupational stress for professional dementia caregivers in residential aged care: A systematic review with meta-analysis.","authors":"Hayley Antipas, Jeanette Tamplin, Tanara Vieira Sousa, Felicity A Baker","doi":"10.1177/14713012231220963","DOIUrl":"10.1177/14713012231220963","url":null,"abstract":"<p><strong>Objective: </strong>Occupational stress in professional dementia caregivers in residential aged care facilities has adverse effects on care quality, caregivers' health, and workforce sustainability. The purpose of this study was to examine the evidence regarding interventions to mitigate occupational stress for this population.</p><p><strong>Methods: </strong>A systematic review of CINAHL, PsycINFO, PubMed and MEDLINE databases was conducted to identify original RCT research reporting on stress interventions, published in English between 1995 and March 2022. Search results were screened by two independent reviewers. Quality and risk of bias were appraised using the Downs and Black Checklist and Risk of Bias by two reviewers. Meta-analysis and subgroup analysis examined the pooled intervention effects on stress compared to control.</p><p><strong>Results: </strong>10 studies met the inclusion criteria, and these reported on 15 interventions and 28 outcomes from 92 facilities, involving 1,397 caregivers. We found a small and insignificant effect of interventions on caregiver stress (g = -.27, <i>p</i> = .16). Heterogeneity was partially explained by subgroup analysis. Interventions can mitigate stress and burden not attributed to client behaviour (<i>n</i> = 3) (g = -.85, <i>p</i> < .001), and improve caregivers' self-efficacy (<i>n</i> = 4) (g = -.35, <i>p</i> = .07). We were unable to determine the most effective type of intervention, although organisation focused interventions showed the greatest potential (g = -.58, <i>p</i> = .08).</p><p><strong>Conclusion: </strong>Interventions that improve caregivers' personal and organisational resources can reduce non-client associated stress and burden and increase self-efficacy. Aged care providers are recommended to prioritise education with organisational support interventions. Research on longitudinal effects and high-risk caregivers is required. Limitations are discussed.</p><p><strong>Prospero registration number: </strong>CRD42022313715 (registered April 2022).</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"292-311"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10807264/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813584","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 experiences of people living with dementia and their care partners participating in an online therapeutic songwriting program.","authors":"Imogen Clark, Neha Christopher, Phoebe Stretton-Smith, Kathleen Lawson","doi":"10.1177/14713012231224069","DOIUrl":"10.1177/14713012231224069","url":null,"abstract":"<p><strong>Background and aim: </strong>Despite the impact of dementia on close care relationships, accessible therapeutic services for people living with dementia and their care partners remain scarce. Further, there is an increasing demand for online services, highlighting the need for ongoing telehealth research. This study aimed to explore the experiences of people living with dementia and their informal and formal care partners following participation in a 10-week online therapeutic songwriting program.</p><p><strong>Methods: </strong>The songwriting program included four duo and six group sessions facilitated by a music therapist. Post-program semi-structured interviews were analysed using thematic analysis.</p><p><strong>Findings: </strong>Nine people with dementia and six care partners (nine duos) participated in the program. Five duos were in spousal relationships and four people with dementia participated with a formal care partner. Participants attended an average of four duo sessions and three group sessions. Six people with dementia and five care partners participated in post-program interviews. Four themes were developed: (1) No one else does this; (2) It's all about us as people; (3) After the sessions we'd come out buzzing; and (4) The journey was as important as the product.</p><p><strong>Conclusions: </strong>Participants highlighted songwriting as a unique opportunity to connect with music, experience welcomed challenges, and spend 'real time' together. The program drew on participants' lived experience and promoted connection with others, resulting in feelings of enjoyment, enhanced mood, and achievement. Participants valued both the songwriting process and song product, emphasising the importance of sensitive and skilful facilitation. Our findings suggest that these distinct benefits were not available through other support services. Further, online songwriting is a viable option for people living with dementia and their care partners where in-person sessions are not available or accessible.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"251-271"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10807188/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138833320","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 lot of people think it's just a Mickey Mouse role': Role ambiguity among dementia support workers within secondary care and community hospital settings.","authors":"Louise Margaret Prendergast, Ceryl Teleri Davies, Tracey Williamson","doi":"10.1177/14713012231220461","DOIUrl":"10.1177/14713012231220461","url":null,"abstract":"<p><p><b>Purpose:</b> Dementia support workers (DSWs) are employed to improve the hospital care for patients living with dementia. An evaluation sought to understand the perspectives and experiences of DSWs and related healthcare practitioners within one health board, to identify any role ambiguity and inform future role development.<b>Design/methodology/approach:</b> Framework analysis was used to synthesise data from semi-structured interviews and focus groups with dementia support workers, and a wider group of related healthcare practitioners.<b>Findings:</b> Thirteen semi-structured interviews were conducted with DSWs. Two focus groups were held with DSWs (<i>n</i> = 2 and 4) and two with associated healthcare practitioners (<i>n</i> = 3 and 5). Participants described inconsistencies in the understanding and delivery of the DSW role. Role ambiguity was identified as a key theme.<b>Originality/value:</b> This paper offers insight into challenges experienced by DSWs and addresses factors that could help improve and support the DSW role, and potentially the experience of other staff, and patients/people living with dementia. Overall, this evaluation highlights both the value of the DSW role in supporting the needs of patients/people living with dementia and the potential for person-centred activities to be used as therapeutic interventions.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"191-209"},"PeriodicalIF":0.0,"publicationDate":"2024-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10807186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813573","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":"Enhancing post-diagnostic care in Australian memory clinics: Health professionals' insights into current practices, barriers and facilitators, and desirable support.","authors":"Slađana Pavković, Lynette Ruth Goldberg, Maree Farrow, Jane Alty, Melissa Abela, Sharon Naismith, Perminder Sachdev, Lee-Fay Low","doi":"10.1177/14713012231213419","DOIUrl":"10.1177/14713012231213419","url":null,"abstract":"<p><strong>Introduction: </strong>Providing integrated and evidence-based support to individuals and families following a diagnosis of dementia is essential in order to optimise their quality of life and assist them to live well. Memory clinics provide multidisciplinary services specialising in the assessment and post-diagnostic treatment of people with dementia. This study sought to identify current practices, barriers and facilitators to provision of postdiagnostic support and to obtain health professionals' opinion of ideal post-diagnostic support to be offered in Australian memory clinics.</p><p><strong>Methodology: </strong>This was a cross-sectional qualitative exploratory study. Data was collected from health professionals familiar with the process of diagnosis and post-diagnostic support through two expert panel meetings (<i>n</i> = 22). In addition, 5 focus groups (<i>n</i> = 22) were conducted including health professionals who are employed in Australian memory clinics. Data was collected between October 2020 and November 2021. Reflexive thematic analysis was undertaken.</p><p><strong>Results: </strong>Seven themes and three subthemes were identified under the three topics: Current Practices, Barriers and Facilitators, and Desirable Support. Themes relating to Current Practices were: Tailored Communication and feedback about diagnosis; Prescription of medications and follow-up; and Referrals to health and community services. Themes relating to Barriers and Facilitators were: The structure of the current system; Lack of funding; Lack of resources; Call for government investment. Themes relating to Desirable support were: A key/single point of support; Cognitive interventions; and Counselling and education.</p><p><strong>Conclusion: </strong>Post-diagnostic support in Australian memory clinics focused primarily on ensuring people understood their diagnosis, information about postdiagnostic support was provided, and dementia medications were prescribed. There were notable differences in practices in metropolitan compared to regional areas. A key concern was the need for increased funding, particularly to support the establishment of a single point of contact to facilitate continuity of care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"109-131"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10797845/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813577","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":"Connecting, learning, supporting: Caregivers' experiences of a stress and distress biopsychosocial group intervention.","authors":"Craig F Wilson, Sue Turnbull, Lisa Gadon","doi":"10.1177/14713012231207946","DOIUrl":"10.1177/14713012231207946","url":null,"abstract":"<p><strong>Background: </strong>Family caregivers are fundamental in supporting people living with dementia to remain at home, however, psychological distress can occur as a result of their caring role. Research into interventions for caregivers of people living with young-onset dementia, including their experience of and the mediating processes of such interventions, remains limited.</p><p><strong>Methods: </strong>An Interpretative Phenomenological Analysis explored caregiver experiences and influence on caregiving of participating in a \"Responding to Distress in Dementia\" group. Five family caregivers were interviewed with discussions covering the period from first noticing symptoms to the interview session.</p><p><strong>Results: </strong>Within the group experience, four superordinate themes were identified: <i>'connecting to other caregivers'</i>, 'l<i>earning about caregiving'</i>, '<i>group factors'</i> and '<i>reduced caregiver distress'</i>. During the post-group period, three superordinate themes were recognised: <i>'maintaining support'</i>, <i>'applying learning'</i>, and <i>'normalising caregiving'.</i></p><p><strong>Conclusions: </strong>The study highlighted several interrelated themes involving creating connections amongst caregivers with similar experiences, social learning, and supportive learning through group structure and facilitation. Many of the processes reflected those found in existing dementia caregiver intervention research. Recommendations included facilitating peer support groups and exploring whole-family approaches.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"23-40"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"61566720","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":"An exploration of the cultural appropriateness of the family-centered function-focused care intervention.","authors":"Rhonda BeLue, Ashley Kuzmik, Michaila Dix, Camille Luckett, Anju Paudel, Barbara Resnick, Marie Boltz","doi":"10.1177/14713012231206288","DOIUrl":"10.1177/14713012231206288","url":null,"abstract":"<p><p>The Family-centered Function Focused Care (Fam-FFC) intervention, is a nurse-family care partnership model aimed to improve the physical and cognitive recovery in hospitalized persons living with Alzheimer's Disease Related Dementias (ADRD) while improving the care partner's experiences. Discussions of patients' needs and preferences between nurses and the patient's close family members have been found to be useful in preventing excessive stress in persons with dementia, while lessening the anxiety of care partners. However, the efficacy of dementia-specific interventions is influenced in part by the degree to which the interventions are flexible and sensitive to the patient's and care-partner's condition, needs, and preferences, including cultural preferences. Therefore, the purpose of this study is to assess the cultural appropriateness of Fam-FFC using the Ecological Validity Model (EVM). This qualitative, descriptive study included 28 consented care partners drawn from a sample of 455 dyads enrolled in the Fam-FFC intervention. An interview guide was created based on the EVM. Participants provided demographic data. Thematic analysis was conducted to analyze transcribed interviews. The majority of the sample was female (79%), Non-Hispanic (96%) and half were married. One-half of the sample represented Black care partners and one-half were White. Seventy-nine percent lived with their family member with ADRD. Three major themes were identified from the thematic analysis including Care Partner Identity, Care Partner Preferences, and Goals of Care for functional recovery of their family member living with dementia. In this study care partners wanted more social services as well as home care that supported not just physical needs but also social and recreational needs. Findings from the study offer guidance on improving the Fam-FFC intervention including strengthening education and resources on partner self-care.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"7-22"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71415690","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":"Better spiritual support for people living with early stage dementia: Developing the diamond conversation model.","authors":"Marc Haufe, Carlo Leget, Marieke Potma, Saskia Teunissen","doi":"10.1177/14713012231213907","DOIUrl":"10.1177/14713012231213907","url":null,"abstract":"<p><strong>Background: </strong>People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support. The Diamond conversation model used in palliative care could provide such a support. <b>Aims:</b> To develop the Diamond model for early-stage dementia so that professionals can provide better spiritual support.</p><p><strong>Methods: </strong>Participatory research was conducted. Reflective interviews with chaplains, case managers and health psychologists identified frequently occurring existential and spiritual issues of clients and family members. A core participatory group consisting of chaplains, a psychologist and a researcher further analysed these issues thematically and co-developed the Diamond model for early stage dementia over three co-creation sessions. Researchers with Diamond model expertise provided feedback to the core participatory group in between these sessions based on the session output.</p><p><strong>Findings: </strong>Central existential and spiritual issues were found to be: self-confidence and -worth, adaptability and capacity, security and loss, burden and enrichment of memory and faith and meaning. The five polarities of the Diamond model were found helpful to understand tensions surrounding these issues. Specific tensions were identified between maintaining a self and being valued, finding direction in what to do and a way to bear changes in ability, a strong need for attachment and letting go of past ways to relate to one another, the renewed intensity of long term memories and decline of the short term ones and surrendering to one's life situation and wanting certainty and meaning.</p><p><strong>Conclusions: </strong>The newly developed Diamond model for people with early-stage dementia offers a valuable framework to help professionals provide conversational support. More research needs to be done to further test and develop the model in practice.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"91-108"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10797830/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71489634","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":"Toward community-centered dementia care: Indigenous ethics in research publishing.","authors":"Pamela Roach, Jordan P Lewis","doi":"10.1177/14713012231223608","DOIUrl":"10.1177/14713012231223608","url":null,"abstract":"","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"5-6"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138813536","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 culturally and linguistically tailored Community-Engaged Dementia Education Program (CEDEP) for the Houston Vietnamese American community.","authors":"Christina E Miyawaki, Angela McClellan, Kim N Nguyen, Tuong-Vi Ho","doi":"10.1177/14713012231213911","DOIUrl":"10.1177/14713012231213911","url":null,"abstract":"<p><p>Data from the Vietnamese Aging and Care Survey (VACS) showed the high prevalence of disability, depressive symptoms, and cognitive impairment in older Vietnamese immigrants and refugees. We proposed a <i>Community-Engaged Dementia Education Program</i> to examine the Houston Vietnamese American community's literacy on dementia and develop a one-pager educational material. This is a cross-sectional, qualitative study (interviews and focus groups) using the Cultural Exchange Model as a conceptual framework. We interviewed fourteen Vietnamese key informants and assessed the community's knowledge of dementia based on Edwards' 9-stage Community Readiness Model. The community's low literacy on dementia (Stages 2-3: Denial/resistance to vague awareness) was revealed. Approaches to introducing dementia conversations to the community and what to include in the one-pager were discussed. Based on the key informants' insight, we developed a dementia one-pager tailored to the community by using lay language with a representative image of the target population, indicating warning signs of dementia, and encouraging them to see their doctors for cognitive check-ups. The plan for the next steps includes utilizing the local ethnic media, collaborating with the existing pillars of the Cultural Exchange model, leveraging the university students' learning opportunities, and disseminating the culturally and linguistically tailored one-pager.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"132-151"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138453181","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}