Pub Date : 2024-10-04DOI: 10.1177/14713012241283860
Tara P Sani, Gary Cheung, Kathy Peri, Susan Yates, Ngaire Kerse, Hēmi Whaanga, Sarah Cullum
Introduction: The World Health Organisation (WHO) has developed iSupport for Dementia, a self-paced online training programme for caregivers of people with dementia which is adaptable to different cultural contexts. This scoping review aims to understand the iSupport adaptation process in different countries and provide recommendations for future adaptations.
Methods: A systematic search was done in electronic databases such as Pubmed, MEDLINE, APA PsycINFO, and EMBASE to obtain relevant publications up to 18 February 2024. Only full-text publications describing iSupport cultural adaptation process were included. The publications obtained were reviewed using the Cultural Adaptation Process framework.
Results: Thirteen publications from ten studies were eligible for inclusion. Based on the Cultural Adaptation Process framework, the steps undertaken in the studies were grouped into: (i) setting the stage, (ii) initial adaptation, and (iii) adaptation iterations. The three significant players in this process are the intervention developer (researchers), the cultural adaptation specialist (researchers, caregivers, and dementia care professionals), and the target community (caregivers). In the publications reviewed, cultural adaptation was mostly undertaken using a co-design process between researchers, caregivers, and dementia care professionals deciding on necessary modifications.
Conclusion: iSupport for Dementia is a versatile programme to support caregivers and is readily available for adaptation to different cultural settings. It is essential to engage caregivers early in co-designing its cultural adaptations to ensure their needs can be met by this online tool.
{"title":"Cultural adaptations of the WHO iSupport for dementia: A scoping review.","authors":"Tara P Sani, Gary Cheung, Kathy Peri, Susan Yates, Ngaire Kerse, Hēmi Whaanga, Sarah Cullum","doi":"10.1177/14713012241283860","DOIUrl":"https://doi.org/10.1177/14713012241283860","url":null,"abstract":"<p><strong>Introduction: </strong>The World Health Organisation (WHO) has developed iSupport for Dementia, a self-paced online training programme for caregivers of people with dementia which is adaptable to different cultural contexts. This scoping review aims to understand the iSupport adaptation process in different countries and provide recommendations for future adaptations.</p><p><strong>Methods: </strong>A systematic search was done in electronic databases such as Pubmed, MEDLINE, APA PsycINFO, and EMBASE to obtain relevant publications up to 18 February 2024. Only full-text publications describing iSupport cultural adaptation process were included. The publications obtained were reviewed using the Cultural Adaptation Process framework.</p><p><strong>Results: </strong>Thirteen publications from ten studies were eligible for inclusion. Based on the Cultural Adaptation Process framework, the steps undertaken in the studies were grouped into: (i) setting the stage, (ii) initial adaptation, and (iii) adaptation iterations. The three significant players in this process are the intervention developer (researchers), the cultural adaptation specialist (researchers, caregivers, and dementia care professionals), and the target community (caregivers). In the publications reviewed, cultural adaptation was mostly undertaken using a co-design process between researchers, caregivers, and dementia care professionals deciding on necessary modifications.</p><p><strong>Conclusion: </strong>iSupport for Dementia is a versatile programme to support caregivers and is readily available for adaptation to different cultural settings. It is essential to engage caregivers early in co-designing its cultural adaptations to ensure their needs can be met by this online tool.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241283860"},"PeriodicalIF":0.0,"publicationDate":"2024-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142376333","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}
Pub Date : 2024-10-01Epub Date: 2024-07-22DOI: 10.1177/14713012241263712
Katherine A Kennedy, A Lynn Snow, Whitney L Mills, Sylvia Haigh, Amy Mochel, Kimberly Curyto, Teddy Bishop, Christine W Hartmann, Cameron J Camp, Michelle M Hilgeman
Background: This paper uses Normalization Process Theory (NPT) to examine staff impressions of Montessori-based program training and implementation at Veterans Affairs Community Living Centers (VA CLCs; nursing homes). Methods: We conducted a mixed-methods evaluation of Montessori Approaches to Person-Centered Care (MAP-VA) at eight VA CLCs. Trainings were conducted as either a live virtual course or a pre-recorded asynchronous class. Two NPT constructs, coherence building and cognitive participation, informed qualitative interview questions, surveys, and analyses focused on staff movement from knowledge to action during initial implementation. Data collection included staff-completed standardized post-training exams (N = 906), post-training evaluations (N = 761), and optional validated surveys on perceptions of Montessori training (N = 307). Champions (peer-leaders) from each CLC completed semi-structured qualitative interviews post-training (N = 22). Findings: The majority of staff (83%-90%) passed all courses. Staff evaluated the training highly (80%+ agreement) on learning relevant new knowledge and confidence applying new skills. On average, staff felt MAP-VA would become a normal part of their work (7.68/10 scale), and reported increased familiarity with Montessori approaches after training (p = .002). Qualitative interview data from staff trained in Montessori supported three themes concordant with the NPT dimensions of coherence building and cognitive participation. (1) Coherence regarding Montessori: staff demonstrated an understanding of the program and mentioned the benefits of Montessori compared to their previous usual routines. Cognitive participation or engagement with Montessori: (2) staff had positive feelings about Montessori principles/applications and demonstrated a willingness to try the Montessori approach, and (3) staff made sense of the new intervention through early rehearsal of Montessori principles/practices and recognized opportunities for using Montessori in future interactions. Conclusions: Montessori virtual training resulted in high levels of coherence and cognitive participation among multidisciplinary staff, evidenced by high knowledge, self-efficacy, and readiness to act. The asynchronous and synchronous trainings were accessible, relevant, and supported diverse learners.
{"title":"Implementing Montessori approaches after training: A mixed methods study to examine staff understanding and movement toward action.","authors":"Katherine A Kennedy, A Lynn Snow, Whitney L Mills, Sylvia Haigh, Amy Mochel, Kimberly Curyto, Teddy Bishop, Christine W Hartmann, Cameron J Camp, Michelle M Hilgeman","doi":"10.1177/14713012241263712","DOIUrl":"10.1177/14713012241263712","url":null,"abstract":"<p><p><b>Background:</b> This paper uses Normalization Process Theory (NPT) to examine staff impressions of Montessori-based program training and implementation at Veterans Affairs Community Living Centers (VA CLCs; nursing homes). <b>Methods:</b> We conducted a mixed-methods evaluation of Montessori Approaches to Person-Centered Care (MAP-VA) at eight VA CLCs. Trainings were conducted as either a live virtual course or a pre-recorded asynchronous class. Two NPT constructs, coherence building and cognitive participation, informed qualitative interview questions, surveys, and analyses focused on staff movement from knowledge to action during initial implementation. Data collection included staff-completed standardized post-training exams (<i>N</i> = 906), post-training evaluations (<i>N</i> = 761), and optional validated surveys on perceptions of Montessori training (<i>N</i> = 307). Champions (peer-leaders) from each CLC completed semi-structured qualitative interviews post-training (<i>N</i> = 22). <b>Findings:</b> The majority of staff (83%-90%) passed all courses. Staff evaluated the training highly (80%+ agreement) on learning relevant new knowledge and confidence applying new skills. On average, staff felt MAP-VA would become a normal part of their work (7.68/10 scale), and reported increased familiarity with Montessori approaches after training (<i>p</i> = .002). Qualitative interview data from staff trained in Montessori supported three themes concordant with the NPT dimensions of coherence building and cognitive participation. (1) Coherence regarding Montessori: staff demonstrated an understanding of the program and mentioned the benefits of Montessori compared to their previous usual routines. Cognitive participation or engagement with Montessori: (2) staff had positive feelings about Montessori principles/applications and demonstrated a willingness to try the Montessori approach, and (3) staff made sense of the new intervention through early rehearsal of Montessori principles/practices and recognized opportunities for using Montessori in future interactions. <b>Conclusions:</b> Montessori virtual training resulted in high levels of coherence and cognitive participation among multidisciplinary staff, evidenced by high knowledge, self-efficacy, and readiness to act. The asynchronous and synchronous trainings were accessible, relevant, and supported diverse learners.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1126-1151"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141749905","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}
Pub Date : 2024-10-01Epub Date: 2024-05-31DOI: 10.1177/14713012241257299
Natasha L Gallant, Chelsea L Russill, Natasha C Taylor, Sarah Nakonechny, Amara Kohlert, Kyley Ewing
Dementia often manifests with profound alterations in perception, but it is unclear if and to what extent time perception is altered among people living with dementia compared to those experiencing normal aging. Thus, this scoping review aimed to answer the following research questions: (1) What study designs, participants, time intervals, paradigms, tests, and scores have been employed and in which countries were these methods employed to study time perception in dementia? (2) In which ways do time perception differ across individuals living with and without dementia? (3) In which ways do time perception differ across individuals living with different types of dementia? After deduplication, title and abstract screening, and full-text review, a total of 12 studies were included in this scoping review. Findings generally indicated that people living with dementia perceive time differently than people living without dementia, and that some differences across dementia diagnoses may exist, but the body of literature on time perception in dementia was quite limited. Future research should focus on replicating findings while extending the research to look beyond the dementia versus non-dementia dichotomy as differences across dementia diagnoses may exist. Moreover, if people living with dementia (and, in particular, living with different dementia diagnoses) experience time differently from those experiencing normal aging, we need to begin to address these differences in dementia-friendly initiatives to improve well-being for this population.
{"title":"Time perception among people living with and without dementia: A scoping review.","authors":"Natasha L Gallant, Chelsea L Russill, Natasha C Taylor, Sarah Nakonechny, Amara Kohlert, Kyley Ewing","doi":"10.1177/14713012241257299","DOIUrl":"10.1177/14713012241257299","url":null,"abstract":"<p><p>Dementia often manifests with profound alterations in perception, but it is unclear if and to what extent time perception is altered among people living with dementia compared to those experiencing normal aging. Thus, this scoping review aimed to answer the following research questions: (1) What study designs, participants, time intervals, paradigms, tests, and scores have been employed and in which countries were these methods employed to study time perception in dementia? (2) In which ways do time perception differ across individuals living with and without dementia? (3) In which ways do time perception differ across individuals living with different types of dementia? After deduplication, title and abstract screening, and full-text review, a total of 12 studies were included in this scoping review. Findings generally indicated that people living with dementia perceive time differently than people living without dementia, and that some differences across dementia diagnoses may exist, but the body of literature on time perception in dementia was quite limited. Future research should focus on replicating findings while extending the research to look beyond the dementia versus non-dementia dichotomy as differences across dementia diagnoses may exist. Moreover, if people living with dementia (and, in particular, living with different dementia diagnoses) experience time differently from those experiencing normal aging, we need to begin to address these differences in dementia-friendly initiatives to improve well-being for this population.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1183-1211"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141184614","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}
Pub Date : 2024-10-01Epub Date: 2024-06-21DOI: 10.1177/14713012241263151
Samantha M Loi Franzcp PhD Mbbs, Claire J Cadwallader, Phoebe A Stretton-Smith, Libby Flynn, Anne Pf Wand, Christina Bryant, Felicity A Baker
Introduction: People living with young-onset dementia and their care-partners are at risk of a range of adverse mental health outcomes and social isolation. There are few interventions aimed at supporting couples affected by young-onset dementia, which poses unique psychosocial challenges for younger people.
Methodology: This pre-post interventional mixed methods pilot study aimed to assess the feasibility and acceptability of an online group program for people with young-onset dementia and their care-partners living at home in Australia. The Music And Psychology and Social connections (MAPS) program aimed to address: (1) the challenges and changes associated with young-onset dementia; and (2) coping and wellbeing. The program involved six weekly two-hour sessions co-facilitated by a psychologist and music therapist, and a private Facebook group. The primary outcomes of feasibility and acceptability were assessed through a post-program focus group, separate individual feedback sessions with each couple, and a program evaluation questionnaire. Thematic analysis was conducted on the focus group transcripts and field notes from couple feedback sessions. We also examined the preliminary utility of MAPS in improving mental health and social connectedness, using quantitative pre-post-measures.
Results: Five couples completed the MAPS program. The most common dementia type was Alzheimer's Disease. Participant attendance was 87% across all sessions. Qualitative findings supported acceptability of the program with four emergent themes: being connected to others with shared experiences; reframing thoughts and feelings about dementia; music as a therapeutic tool; and benefits of MAPS.
Conclusion: The high retention rate, qualitative findings and positive program evaluation suggest MAPS may be a promising, feasible and acceptable program for couples affected by young-onset dementia.
{"title":"A mixed methods evaluation of the music and psychology and social connections (MAPS) pilot - A dyadic intervention for couples affected by young-onset dementia.","authors":"Samantha M Loi Franzcp PhD Mbbs, Claire J Cadwallader, Phoebe A Stretton-Smith, Libby Flynn, Anne Pf Wand, Christina Bryant, Felicity A Baker","doi":"10.1177/14713012241263151","DOIUrl":"10.1177/14713012241263151","url":null,"abstract":"<p><strong>Introduction: </strong>People living with young-onset dementia and their care-partners are at risk of a range of adverse mental health outcomes and social isolation. There are few interventions aimed at supporting couples affected by young-onset dementia, which poses unique psychosocial challenges for younger people.</p><p><strong>Methodology: </strong>This pre-post interventional mixed methods pilot study aimed to assess the feasibility and acceptability of an online group program for people with young-onset dementia and their care-partners living at home in Australia. The Music And Psychology and Social connections (MAPS) program aimed to address: (1) the challenges and changes associated with young-onset dementia; and (2) coping and wellbeing. The program involved six weekly two-hour sessions co-facilitated by a psychologist and music therapist, and a private Facebook group. The primary outcomes of feasibility and acceptability were assessed through a post-program focus group, separate individual feedback sessions with each couple, and a program evaluation questionnaire. Thematic analysis was conducted on the focus group transcripts and field notes from couple feedback sessions. We also examined the preliminary utility of MAPS in improving mental health and social connectedness, using quantitative pre-post-measures.</p><p><strong>Results: </strong>Five couples completed the MAPS program. The most common dementia type was Alzheimer's Disease. Participant attendance was 87% across all sessions. Qualitative findings supported acceptability of the program with four emergent themes: being connected to others with shared experiences; reframing thoughts and feelings about dementia; music as a therapeutic tool; and benefits of MAPS.</p><p><strong>Conclusion: </strong>The high retention rate, qualitative findings and positive program evaluation suggest MAPS may be a promising, feasible and acceptable program for couples affected by young-onset dementia.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1103-1125"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141433489","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}
Pub Date : 2024-10-01Epub Date: 2024-07-21DOI: 10.1177/14713012241267137
Yuanjin Zhou, Nirali Thakkar, Elizabeth A Phelan, Emily Ishado, Chih-Ying Li, Soo Borson, Tatiana Sadak
Background and objectives: Previous studies have found that falls among community-dwelling older people with dementia negatively impact the health and well-being of their relative/friend care partners. Limited studies have explored the challenges care partners experience because of older people's falls (including fall incidents and fall risks). We sought to investigate care partners' experiences of these challenges and how care partners responded.
Methods: We conducted an inductive thematic analysis of 48 dementia care partner interviews (age range: 33-86, mean: 61, 70.8% women; 58.3% adult children; 29.2% spouse; 62.5% completed college; 25% people of color), conducted after a health crisis of older people with dementia from three local university-affiliated hospitals in the United States.
Findings: Care partners reported that falls in older people with dementia can intensify overall care demands and lead to self-sacrificing behaviors, dissatisfaction with healthcare providers, conflicts with care recipients, and intense emotions. Care partners described several adaptations to mitigate these impacts, including practicing acceptance, approaching falls as an opportunity for learning, facilitating collaborations within formal/informal care networks, collaborating with older people with dementia to balance autonomy and safety, and modifying the physical environment.
Discussions and implications: Falls among older people with dementia are a significant stressor and an important activation stimulus for their care partners. Our findings suggest that care partners are "second clients" and "competent collaborators." As they provide important insights about fall prevention, care partners should be engaged to co-design new multi-level interventions to facilitate collaborations among care networks, older people with dementia, and service providers.
{"title":"How do care partners overcome the challenges associated with falls of community-dwelling older people with dementia? A qualitative study.","authors":"Yuanjin Zhou, Nirali Thakkar, Elizabeth A Phelan, Emily Ishado, Chih-Ying Li, Soo Borson, Tatiana Sadak","doi":"10.1177/14713012241267137","DOIUrl":"10.1177/14713012241267137","url":null,"abstract":"<p><strong>Background and objectives: </strong>Previous studies have found that falls among community-dwelling older people with dementia negatively impact the health and well-being of their relative/friend care partners. Limited studies have explored the challenges care partners experience because of older people's falls (including fall incidents and fall risks). We sought to investigate care partners' experiences of these challenges and how care partners responded.</p><p><strong>Methods: </strong>We conducted an inductive thematic analysis of 48 dementia care partner interviews (age range: 33-86, mean: 61, 70.8% women; 58.3% adult children; 29.2% spouse; 62.5% completed college; 25% people of color), conducted after a health crisis of older people with dementia from three local university-affiliated hospitals in the United States.</p><p><strong>Findings: </strong>Care partners reported that falls in older people with dementia can intensify overall care demands and lead to self-sacrificing behaviors, dissatisfaction with healthcare providers, conflicts with care recipients, and intense emotions. Care partners described several adaptations to mitigate these impacts, including practicing acceptance, approaching falls as an opportunity for learning, facilitating collaborations within formal/informal care networks, collaborating with older people with dementia to balance autonomy and safety, and modifying the physical environment.</p><p><strong>Discussions and implications: </strong>Falls among older people with dementia are a significant stressor and an important activation stimulus for their care partners. Our findings suggest that care partners are \"second clients\" and \"competent collaborators.\" As they provide important insights about fall prevention, care partners should be engaged to co-design new multi-level interventions to facilitate collaborations among care networks, older people with dementia, and service providers.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1152-1171"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141735861","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}
Pub Date : 2024-10-01Epub Date: 2024-07-26DOI: 10.1177/14713012241262384
Steven Owen, Stephen Page, Katie Ledingham, Stephan Price, Joanne Connell, Catherine Quinn, Linda Clare
Purpose: This article adopts an embodiment lens to explore the individual leisure experiences of people living with dementia when engaging in nature-based pursuits. It focuses on how people living with dementia frame their everyday experiences of nature and how these are shaped by any cognitive challenges and/or other comorbidities affecting physical health.
Design/methodology/approach: Taking a phenomenological research approach, we interviewed 15 people living with dementia and 15 family carers of people with dementia to explore how people with dementia engage with nature as a subjective leisure experience. We analysed their accounts using reflexive thematic analysis.
Findings: The findings reveal how people living with dementia frame their experiences of nature-based pursuits through three interlinked themes of 'bodily feelings and emotions', 'sense of self and identity' and 'connectivity to others'.
Originality/value: The paper contributes to knowledge by examining through the lens of embodiment a neglected and overlooked dimension of everyday leisure: how nature is encountered, negotiated and enjoyed. The paper illustrates how nature and the outdoors may help people living with dementia to continue to enjoy prior leisure pursuits and thus achieve a degree of continuity in their everyday lives.
{"title":"Embodied leisure experiences of nature-based activities for people living with dementia.","authors":"Steven Owen, Stephen Page, Katie Ledingham, Stephan Price, Joanne Connell, Catherine Quinn, Linda Clare","doi":"10.1177/14713012241262384","DOIUrl":"10.1177/14713012241262384","url":null,"abstract":"<p><strong>Purpose: </strong>This article adopts an embodiment lens to explore the individual leisure experiences of people living with dementia when engaging in nature-based pursuits. It focuses on how people living with dementia frame their everyday experiences of nature and how these are shaped by any cognitive challenges and/or other comorbidities affecting physical health.</p><p><strong>Design/methodology/approach: </strong>Taking a phenomenological research approach, we interviewed 15 people living with dementia and 15 family carers of people with dementia to explore how people with dementia engage with nature as a subjective leisure experience. We analysed their accounts using reflexive thematic analysis.</p><p><strong>Findings: </strong>The findings reveal how people living with dementia frame their experiences of nature-based pursuits through three interlinked themes of 'bodily feelings and emotions', 'sense of self and identity' and 'connectivity to others'.</p><p><strong>Originality/value: </strong>The paper contributes to knowledge by examining through the lens of embodiment a neglected and overlooked dimension of everyday leisure: how nature is encountered, negotiated and enjoyed. The paper illustrates how nature and the outdoors may help people living with dementia to continue to enjoy prior leisure pursuits and thus achieve a degree of continuity in their everyday lives.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1081-1102"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11440788/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141768270","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}
Pub Date : 2024-10-01Epub Date: 2024-08-09DOI: 10.1177/14713012241270758
Digisie M Jemere, Julie Ratcliffe, Jyoti Khadka, Kiri Lay, Rachel Milte
More than half of older people in long-term care facilities have dementia. Little is currently known about the methods and instruments which can be used to capture the perspectives of older people, including those with dementia, regarding the quality of care provided in such facilities. The main aims of this scoping review were two-fold. Firstly, to identify quality of care instruments that have been applied in long-term care settings. Secondly, to evaluate how these instruments have been developed and validated, particularly in terms of their applicability among older people with dementia. Seven databases (Medline, Web of Science, Scopus, ProQuest, Ageline, CINHAL and google scholar) were searched for relevant literature without any date limit. We used quality criteria adapted from COSMIN (Consensus-based Standards for the selection of health status Measurement Instruments) guidelines to assess the psychometric properties of the instruments. The search identified 16 quality of care instruments which had been used in long-term care settings. Of which, two (12.5%) were specifically designed for older people with dementia, and three instruments (18.7%) were modified for use with older people with mild to moderate dementia. A variety of methods were used to develop the identified instruments including literature reviews, qualitative interviews, expert panel reviews, pre-testing and piloting with older people. None of the identified instruments had been subjected to comprehensive psychometric assessment. Most instruments for assessing quality of care in long term care settings lack alternative communication techniques tailored to people with dementia. This review highlights the need for more rigorous psychometric testing of existing instruments for assessing quality of care in long-term care settings. Several existing measures show promise and may be taken forward for further testing and development for widespread application with older people, including those living with dementia, in long term care settings.
长期护理机构中一半以上的老年人患有痴呆症。目前,人们对可用于了解老年人(包括痴呆症患者)对此类机构所提供护理质量的看法的方法和工具知之甚少。本次范围界定研究的主要目的有两个。首先,确定已应用于长期护理机构的护理质量工具。其次,评估这些工具是如何开发和验证的,尤其是在老年痴呆症患者中的适用性。我们在七个数据库(Medline、Web of Science、Scopus、ProQuest、Ageline、CINHAL 和 google scholar)中搜索了相关文献,没有任何日期限制。我们使用改编自 COSMIN(基于共识的健康状况测量工具选择标准)指南的质量标准来评估工具的心理测量特性。搜索发现了 16 种用于长期护理环境的护理质量工具。其中,有两份(12.5%)是专门为老年痴呆症患者设计的,有三份(18.7%)是为轻度至中度痴呆症患者设计的。在开发所确定的工具时使用了多种方法,包括文献综述、定性访谈、专家小组审查、预先测试以及在老年人中试用。所有确定的工具都没有经过全面的心理测量评估。大多数用于评估长期护理环境中护理质量的工具都缺乏针对痴呆症患者的替代性沟通技巧。本综述强调了对现有长期护理环境中护理质量评估工具进行更严格心理测试的必要性。一些现有的测量方法显示出了良好的前景,可以进行进一步的测试和开发,以便在长期护理环境中广泛应用于老年人,包括痴呆症患者。
{"title":"Are quality of care instruments inclusive of older people living with dementia? A scoping review in long-term care settings.","authors":"Digisie M Jemere, Julie Ratcliffe, Jyoti Khadka, Kiri Lay, Rachel Milte","doi":"10.1177/14713012241270758","DOIUrl":"10.1177/14713012241270758","url":null,"abstract":"<p><p>More than half of older people in long-term care facilities have dementia. Little is currently known about the methods and instruments which can be used to capture the perspectives of older people, including those with dementia, regarding the quality of care provided in such facilities. The main aims of this scoping review were two-fold. Firstly, to identify quality of care instruments that have been applied in long-term care settings. Secondly, to evaluate how these instruments have been developed and validated, particularly in terms of their applicability among older people with dementia. Seven databases (Medline, Web of Science, Scopus, ProQuest, Ageline, CINHAL and google scholar) were searched for relevant literature without any date limit. We used quality criteria adapted from COSMIN (Consensus-based Standards for the selection of health status Measurement Instruments) guidelines to assess the psychometric properties of the instruments. The search identified 16 quality of care instruments which had been used in long-term care settings. Of which, two (12.5%) were specifically designed for older people with dementia, and three instruments (18.7%) were modified for use with older people with mild to moderate dementia. A variety of methods were used to develop the identified instruments including literature reviews, qualitative interviews, expert panel reviews, pre-testing and piloting with older people. None of the identified instruments had been subjected to comprehensive psychometric assessment. Most instruments for assessing quality of care in long term care settings lack alternative communication techniques tailored to people with dementia. This review highlights the need for more rigorous psychometric testing of existing instruments for assessing quality of care in long-term care settings. Several existing measures show promise and may be taken forward for further testing and development for widespread application with older people, including those living with dementia, in long term care settings.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1212-1237"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11440791/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141910191","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}
Pub Date : 2024-10-01Epub Date: 2024-08-17DOI: 10.1177/14713012241272817
Christina R Victor, Eleanor van den Heuvel, Claire Pentecost, Catherine Quinn, Catherine Charlwood, Linda Clare
Future populations of older adults in the UK, those aged 65+, will demonstrate increased diversity in terms of their ethnic identity resultant from the ageing of the post-war migrants from India, Pakistan, Bangladesh, and the Caribbean. As a consequence, there will be an increase in the numbers of older adults from these communities living with age-related chronic diseases such as dementia. In response to these demographic changes, we need to develop a research, policy and practice agenda that is inclusive and provides evidence for the development of culturally diverse and effective models of service delivery. This requires engagement with three key stakeholder groups: (a) people with dementia; (b) their carers; and (c) the wider community. As part of the IDEAL research programme on living well with dementia, we undertook semi-structured interviews with twelve community leaders, defined as known and trusted individuals active in their respective communities, and six community members (two people living with dementia and four carers). We explored their understandings, experiences, and views of about dementia. Our analysis identified two overarching themes. The migrant lifecourse highlighted issues of not belonging, discrimination and racism. This framed our second theme, the cultural context of dementia, which addressed dementia knowledge and attitudes, service provision and service access, and how being part of a minority ethnic community made a difference to these experiences. Our study highlights how lifecourse experiences of negative hostile social and policy environments and services can be profound and long-lasting and provide a prism through which accessing dementia care is experienced. Our findings argue for the inclusion of diverse views and lifecourse experiences within the context of developing a dementia strategy for research, policy and practice that is appropriate for a multicultural and heterogenous society.
{"title":"Understanding dementia in minority ethnic communities: The perspectives of key stakeholders interviewed as part of the IDEAL programme.","authors":"Christina R Victor, Eleanor van den Heuvel, Claire Pentecost, Catherine Quinn, Catherine Charlwood, Linda Clare","doi":"10.1177/14713012241272817","DOIUrl":"10.1177/14713012241272817","url":null,"abstract":"<p><p>Future populations of older adults in the UK, those aged 65+, will demonstrate increased diversity in terms of their ethnic identity resultant from the ageing of the post-war migrants from India, Pakistan, Bangladesh, and the Caribbean. As a consequence, there will be an increase in the numbers of older adults from these communities living with age-related chronic diseases such as dementia. In response to these demographic changes, we need to develop a research, policy and practice agenda that is inclusive and provides evidence for the development of culturally diverse and effective models of service delivery. This requires engagement with three key stakeholder groups: (a) people with dementia; (b) their carers; and (c) the wider community. As part of the IDEAL research programme on living well with dementia, we undertook semi-structured interviews with twelve community leaders, defined as known and trusted individuals active in their respective communities, and six community members (two people living with dementia and four carers). We explored their understandings, experiences, and views of about dementia. Our analysis identified two overarching themes. The migrant lifecourse highlighted issues of not belonging, discrimination and racism. This framed our second theme, the cultural context of dementia, which addressed dementia knowledge and attitudes, service provision and service access, and how being part of a minority ethnic community made a difference to these experiences. Our study highlights how lifecourse experiences of negative hostile social and policy environments and services can be profound and long-lasting and provide a prism through which accessing dementia care is experienced. Our findings argue for the inclusion of diverse views and lifecourse experiences within the context of developing a dementia strategy for research, policy and practice that is appropriate for a multicultural and heterogenous society.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"1172-1182"},"PeriodicalIF":0.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437690/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141997009","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}
Pub Date : 2024-09-27DOI: 10.1177/14713012241286559
Elien Van Hout, Milena Contreras, Eneida Mioshi, Naoko Kishita
Background: Dementia does not merely affect individuals, the carer and the person living with dementia, but also has a profound impact on their spousal relationship. As such, this study aimed to gain a deeper understanding of how dementia affects spousal relationships with a focus on interpersonal (i.e. relationship adjustment, communication engagement and emotional connection between two individuals) and intrapersonal (i.e. loss of self within the context of relationships) dynamics using a qualitative approach. The study also explored how carers adapt to such relationship challenges in the context of dementia care.Methods: A phenomenological approach was used to capture the subjective experiences of female spousal carers, who regularly support their partner living with dementia. A total of nine semi-structured interviews were conducted.Results:Relationship adjustment theme highlighted how learning to acknowledge role shifts from a spouse to a carer is critical for carers to manage relationship difficulties. Emotional connection theme demonstrated the importance of reminiscing about the shared history between dyads to cope with feelings of loss of affective intimacy. Communication engagement theme revealed carers' need to learn a new way of communicating due to the decrease in meaningful communication and two-way interaction. Sense of self theme highlighted the importance of self-compassion to overcome feelings of self-loss and isolation.Conclusion: Findings suggest that improving the relationship between female spousal carers and their partner living with dementia may require targeted interventions addressing different factors. Such interventions can include a couple's life story approach to enable couples to reminisce about their shared experiences, interactive communication training to enhance meaningful engagements, and a psychological approach such as compassion-focused therapy to overcome emotional challenges and facilitate self-compassion.
{"title":"Understanding the impact of dementia on spousal relationships: A qualitative study with female spousal carers of people living with dementia.","authors":"Elien Van Hout, Milena Contreras, Eneida Mioshi, Naoko Kishita","doi":"10.1177/14713012241286559","DOIUrl":"https://doi.org/10.1177/14713012241286559","url":null,"abstract":"<p><p><b>Background:</b> Dementia does not merely affect individuals, the carer and the person living with dementia, but also has a profound impact on their spousal relationship. As such, this study aimed to gain a deeper understanding of how dementia affects spousal relationships with a focus on interpersonal (i.e. relationship adjustment, communication engagement and emotional connection between two individuals) and intrapersonal (i.e. loss of self within the context of relationships) dynamics using a qualitative approach. The study also explored how carers adapt to such relationship challenges in the context of dementia care.<b>Methods:</b> A phenomenological approach was used to capture the subjective experiences of female spousal carers, who regularly support their partner living with dementia. A total of nine semi-structured interviews were conducted.<b>Results:</b> <i>Relationship adjustment</i> theme highlighted how learning to acknowledge role shifts from a spouse to a carer is critical for carers to manage relationship difficulties. <i>Emotional connection</i> theme demonstrated the importance of reminiscing about the shared history between dyads to cope with feelings of loss of affective intimacy. <i>Communication engagement</i> theme revealed carers' need to learn a new way of communicating due to the decrease in meaningful communication and two-way interaction. <i>Sense of self</i> theme highlighted the importance of self-compassion to overcome feelings of self-loss and isolation.<b>Conclusion:</b> Findings suggest that improving the relationship between female spousal carers and their partner living with dementia may require targeted interventions addressing different factors. Such interventions can include a couple's life story approach to enable couples to reminisce about their shared experiences, interactive communication training to enhance meaningful engagements, and a psychological approach such as compassion-focused therapy to overcome emotional challenges and facilitate self-compassion.</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241286559"},"PeriodicalIF":0.0,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142333685","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}
Pub Date : 2024-09-21DOI: 10.1177/14713012241285525
Catharine Jenkins, Analisa Smythe
Aim: to explore the range of cultural understandings of dementia held by people providing nursing care globally.Background: There is a worldwide shortage of nurses and healthcare workers, resulting in extensive global mobility among the workforce. Cultural competence is expected of nurses who serve diverse populations and although self-awareness is recognised as crucial in developing this ability, the focus has tended to be on the identity of the patient and adjusting care according to their specific needs. However, taken-for-granted assumptions drive unconscious judgements and therefore behaviour so nurses' dementia-related understandings are worthy of exploration.Design: An integrative literature review, comprising five stages: problem identification; literature search; data evaluation; data analysis; and presentation of the findings.Methods: Six databases were searched for original research published between 1997 and 2023. Studies which focus on qualified/registered and unqualified/unregistered healthcare workers' cultural understandings of dementia were included. Studies were evaluated using a tool designed for the critical assessment of qualitative research. Data was extracted using a bespoke spreadsheet. Conventional content analysis was undertaken to develop a synthesised summary of the findings of the studies.Findings: 11 papers met the inclusion criteria. Content analysis led to identification of two main themes: 'Stigma as a common factor in cultural perceptions of dementia', and 'Stigma derived from cultural perceptions has consequences for people living with dementia'.Conclusion: An international perspective facilitated insight into alternative perceptions of the nature of dementia and care responses. A version of the 'Relationship Centred Care' model, expanded to include the wider community, could support theoretical and practical recommendations for culturally congruent approaches to care. Further research is required to examine the usefulness of incorporating this approach internationally.Reporting Method: The authors followed the ENTREQ reporting guidelines (Tong et al., 2012).
{"title":"'What are nurses' and healthcare workers' cultural understandings of dementia?' An integrative literature review.","authors":"Catharine Jenkins, Analisa Smythe","doi":"10.1177/14713012241285525","DOIUrl":"https://doi.org/10.1177/14713012241285525","url":null,"abstract":"<p><p><b>Aim:</b> to explore the range of cultural understandings of dementia held by people providing nursing care globally.<b>Background:</b> There is a worldwide shortage of nurses and healthcare workers, resulting in extensive global mobility among the workforce. Cultural competence is expected of nurses who serve diverse populations and although self-awareness is recognised as crucial in developing this ability, the focus has tended to be on the identity of the patient and adjusting care according to their specific needs. However, taken-for-granted assumptions drive unconscious judgements and therefore behaviour so nurses' dementia-related understandings are worthy of exploration.<b>Design:</b> An integrative literature review, comprising five stages: problem identification; literature search; data evaluation; data analysis; and presentation of the findings.<b>Methods:</b> Six databases were searched for original research published between 1997 and 2023. Studies which focus on qualified/registered and unqualified/unregistered healthcare workers' cultural understandings of dementia were included. Studies were evaluated using a tool designed for the critical assessment of qualitative research. Data was extracted using a bespoke spreadsheet. Conventional content analysis was undertaken to develop a synthesised summary of the findings of the studies.<b>Findings:</b> 11 papers met the inclusion criteria. Content analysis led to identification of two main themes: 'Stigma as a common factor in cultural perceptions of dementia', and 'Stigma derived from cultural perceptions has consequences for people living with dementia'.<b>Conclusion:</b> An international perspective facilitated insight into alternative perceptions of the nature of dementia and care responses. A version of the 'Relationship Centred Care' model, expanded to include the wider community, could support theoretical and practical recommendations for culturally congruent approaches to care. Further research is required to examine the usefulness of incorporating this approach internationally.<b>Reporting Method:</b> The authors followed the ENTREQ reporting guidelines (Tong et al., 2012).</p>","PeriodicalId":72778,"journal":{"name":"Dementia (London, England)","volume":" ","pages":"14713012241285525"},"PeriodicalIF":0.0,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142302426","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}