Paula Sinead Donnelly, Aoife Sweeney, Emily Wilson, Anthony Peter Passmore, N. Mccorry, Marco Boeri, Joseph P. M. Kane
{"title":"Developing a person-centered stated preference survey for dementia with Lewy bodies: value of a personal and public involvement process","authors":"Paula Sinead Donnelly, Aoife Sweeney, Emily Wilson, Anthony Peter Passmore, N. Mccorry, Marco Boeri, Joseph P. M. Kane","doi":"10.3389/frdem.2024.1421556","DOIUrl":"https://doi.org/10.3389/frdem.2024.1421556","url":null,"abstract":"The development of high-quality stated preference (SP) surveys requires a rigorous design process involving engagement with representatives from the target population. However, while transparency in the reporting of the development of SP surveys is encouraged, few studies report on this process and the outcomes. Recommended stages of instrument development includes both steps for stakeholder/end-user engagement and pretesting. Pretesting typically involves interviews, often across multiple waves, with improvements made at each wave; pretesting is therefore resource intensive. The aims of this paper are to report on the outcomes of collaboration with a Lewy body dementia research advisory group during the design phase of a SP survey. We also evaluate an alternative approach to instrument development, necessitated by a resource constrained context.The approach involved conducting the stages of end-user engagement and pretesting together during a public involvement event. A hybrid approach involving a focus group with breakout interviews was employed. Feedback from contributors informed the evolution of the survey instrument.Changes to the survey instrument were organized into four categories: attribute modifications; choice task presentation and understanding; information presentation, clarity and content; and best-best scaling presentation. The hybrid approach facilitated group brainstorming while still allowing the researcher to assess the feasibility of choice tasks in an interview setting. However, greater individual exploration and the opportunity to trial iterative improvements across waves was not feasible with this approach.Involvement of the research advisory group resulted in a more person-centered survey design. In a context constrained by time and budget, and with consideration of the capacity and vulnerability of the target population, the approach taken was a feasible and pragmatic mechanism for improving the design of a SP survey.","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"7 9","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141648302","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}
Ellen Snowball, Christine Aiken, Myrna Norman, Wayne Hykaway, Zoe Dempster, Inbal Itzhak, Emily McLellan, Katherine S. McGilton, Jennifer Bethell
{"title":"Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives","authors":"Ellen Snowball, Christine Aiken, Myrna Norman, Wayne Hykaway, Zoe Dempster, Inbal Itzhak, Emily McLellan, Katherine S. McGilton, Jennifer Bethell","doi":"10.3389/frdem.2024.1421737","DOIUrl":"https://doi.org/10.3389/frdem.2024.1421737","url":null,"abstract":"This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":" 7","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141675360","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}
Ruyue Guo, Xiaoming Shen, John Ealing, Jiao Zhou, Jin Lu, Yunfan Ning
{"title":"Efficacy and safety of acupuncture for cognitive impairment in Alzheimer's disease: a systematic review and meta-analysis","authors":"Ruyue Guo, Xiaoming Shen, John Ealing, Jiao Zhou, Jin Lu, Yunfan Ning","doi":"10.3389/frdem.2024.1380221","DOIUrl":"https://doi.org/10.3389/frdem.2024.1380221","url":null,"abstract":"To systematically evaluate the efficacy of acupuncture in the treatment of cognitive impairment in Alzheimer's disease (AD) by meta-analysis, in order to provide evidence-based evidence for the application of acupuncture therapy in the clinical process of AD.From the establishment of the database to December 31, 2022, China Biomedical Literature Database (CBM), China National Knowledge Network (CNKI), VIP database, WanFang Database, Pubmed, Embase and Cochrane Library Database were systematically searched. To collect published randomized controlled clinical trials (RCTS) of acupuncture in the treatment of cognitive impairment in AD. The subjects in the intervention group were given acupuncture alone or combined with other treatments the same as the control group; the control group received conventional Western medicine treatment. The main outcome indicators of the study were cognitive function assessment of subjects, including: Simple Mental State Examination Scale (MMSE), Assessment of daily Living Ability Scale (ADL), Alzheimer's Disease Cognitive Function Assessment Scale (ADAS-Cog), TCM syndrome score (SDSD), Montreal Cognitive Test (MoCA), Secondary outcome indicators were the occurrence of adverse reactions. Literature screening, data extraction, and quality evaluation of the included literature were performed independently by two researchers, according to bias risk assessment tools recommended in the Cochrane manual. Data were analyzed by RevMan5.3 software. Dichotomous variables were represented by risk ratio (OR) and 95% CI, and continuity variables were represented by mean difference (MD) and 95% CI. For heterogeneity analysis, when P > 0.1 and I2 ≤ 50%, fixed effect model was applied. When P ≤ 0.1 and I2 > 50%, the random effects model is applied.A total of 1,172 eligible subjects were included in 18 RCTS, including 595 in the intervention group and 577 in the control group. The results of meta-analysis are as follows: acupuncture intervention group improved MMSE [MD = 1.67, 95% CI (0.94, 2.41), P < 0.00001], ADL [MD = −1.18, 95% CI (−3.09, 0.72), P = 0.22], ADAS-Cog [MD = 3.31, 95% CI (5.84, 0.78), P = 0.01], SDSD [MD = 2.40, 95% CI (3.53, 1.26), P < 0.0001], MoCA [MD = 4.80, 95% CI (3.74, 5.86), P = 0.04] were better than the control group. No serious adverse reactions related to acupuncture were observed in the intervention group, and the incidence and severity of adverse reactions were lower than those in the control group, with statistical significance [OR = 0.17, 95% CI (0.04, 0.67), P = 0.01].Existing data show that acupuncture therapy has certain advantages in improving cognitive dysfunction and improving self-care ability of patients with Alzheimer's disease. However, due to the small number of RCTS and cases evaluating the efficacy of acupuncture, and the possibility of measurement bias and selectivity bias in included studies, it is still unable to conduct high-intensity demonstration on its effectiveness. Further large-scal","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"81 5","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141682651","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":"Editorial: Navigating intimacy & sexuality in the context of dementia","authors":"Cindy Jones, Maria Horne, Christine Brown Wilson","doi":"10.3389/frdem.2024.1426327","DOIUrl":"https://doi.org/10.3389/frdem.2024.1426327","url":null,"abstract":"","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"79 12","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141348284","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A systematic review of the impact of type 2 diabetes on brain cortical thickness","authors":"Mahboubeh Motaghi, Olivier Potvin, Simon Duchesne","doi":"10.3389/frdem.2024.1418037","DOIUrl":"https://doi.org/10.3389/frdem.2024.1418037","url":null,"abstract":"Type 2 diabetes (T2D) has been linked to cognitive impairment and dementia, but its impact on brain cortical structures in individuals prior to or without cognitive impairment remains unclear.We conducted a systematic review of 2,331 entries investigating cerebral cortical thickness changes in T2D individuals without cognitive impairment, 55 of which met our inclusion criteria.Most studies (45/55) reported cortical brain atrophy and reduced thickness in the anterior cingulate, temporal, and frontal lobes between T2D and otherwise cognitively healthy controls. However, the balance of studies (10/55) reported no significant differences in either cortical or total brain volumes. A few reports also noticed changes in the occipital cortex and its gyri. As part of the reports, less than half of studies (18/55) described a correlation between T2D and hippocampal atrophy. Variability in sample characteristics, imaging methods, and software could affect findings on T2D and cortical atrophy.In conclusion, T2D appears linked to reduced cortical thickness, possibly impacting cognition and dementia risk. Microvascular disease and inflammation in T2D may also contribute to this risk. Further research is needed to understand the underlying mechanisms and brain health implications.","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"10 11","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141349151","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}
K. Atchison, Pauline Wu, Jennifer A. Watt, D. Seitz, Zahinoor Ismail, Zahra Goodarzi
{"title":"Psychosis detection in dementia: a systematic review of diagnostic test accuracy studies","authors":"K. Atchison, Pauline Wu, Jennifer A. Watt, D. Seitz, Zahinoor Ismail, Zahra Goodarzi","doi":"10.3389/frdem.2024.1377191","DOIUrl":"https://doi.org/10.3389/frdem.2024.1377191","url":null,"abstract":"Symptoms of psychosis, characterized by delusions and hallucinations, are commonly experienced by persons living with dementia. A systematic review was completed to identify tools to evaluate symptoms of psychosis compared to a reference standard in persons with dementia. Articles reporting correlation values between psychosis tools were also identified.The search concepts psychosis, dementia, and diagnostic accuracy were used to search MEDLINE, PsycINFO, and Embase. Included articles meeting the primary objective described a tool to assess symptoms of psychosis, delusions, or hallucinations in persons with dementia, a reference standard form of diagnostic assessment for psychosis, and diagnostic accuracy outcomes for the psychosis tool. Secondary objective articles reported correlation values between two or more psychosis tools in persons with dementia.One study met the primary objective and described the sensitivity and specificity of the Neuropsychiatric Inventory (NPI) and Columbia University Scale for Psychopathology in Alzheimer's Disease (CUSPAD) in identifying symptoms of psychosis, hallucinations, and delusions. The sensitivity of the NPI and CUSPAD in identifying symptoms of psychosis was 83 and 90%, respectively. Nine studies meeting the secondary objective described eleven unique tools and examined the degree to which tools used to assess psychotic symptoms in persons with dementia were related.The NPI and CUSPAD were identified in a single study as psychosis tools that have been evaluated against a reference standard of psychosis assessment in persons with dementia. Various tools to assess the burden of psychotic symptoms in persons with dementia exist, but the diagnostic accuracy of existing tools remains understudied. Further research on the comparative utility and diagnostic accuracy is required for all psychosis tools used with persons with dementia.","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"61 9","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141349361","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}
Lorraine Ng, Suzanne M. Dyer, Suzanne Dawson, Kate Laver
{"title":"Impact of an improved outdoor space on people with dementia in a hospital unit","authors":"Lorraine Ng, Suzanne M. Dyer, Suzanne Dawson, Kate Laver","doi":"10.3389/frdem.2024.1404662","DOIUrl":"https://doi.org/10.3389/frdem.2024.1404662","url":null,"abstract":"Gardens and outdoor spaces are an important part of institutional environments for people with dementia. However, evidence regarding the benefits these spaces have for people with dementia is still limited. This paper presents the evaluation of the redevelopment of an inaccessible outdoor space into a therapeutic garden on a high dependency psychogeriatric unit in an acute hospital.A Mixed methods evaluation was undertaken. An interrupted time series analysis investigated the impact of the garden on falls and challenging behaviours of patients using routinely collected data. Perspectives of the redeveloped garden were captured through (a) a staff survey and (b) semi-structured interviews with families of patients.Rates of falls and challenging behaviours dropped at the time of the garden opening but showed increasing rates each month both before and after the garden opened. Most staff believed that the garden provided benefits for patients however limited staff time and concerns over patient safety were barriers to use. Families identified four main themes related to garden use including: (1) being outside (2) occupation and identity, (3) being stimulating, and (4) barriers and facilitators.The garden was regarded positively by families and staff however, there were barriers that prevented it from being better utilised. Staff concerns over risk were not reflected in falls and challenging behaviour outcomes. Further research into how barriers to garden use may be overcome is justified.","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"13 24","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141380166","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}
Polly Kennedy, Carol Rogan, Dawn Higgins, Yao Chen, Emilia Grycuk, I. Leroi, Andrew Wormald, Miriam Galvin
{"title":"Changes and interruptions during COVID-19: caregivers of people with brain health challenges—A qualitative analysis","authors":"Polly Kennedy, Carol Rogan, Dawn Higgins, Yao Chen, Emilia Grycuk, I. Leroi, Andrew Wormald, Miriam Galvin","doi":"10.3389/frdem.2024.1360112","DOIUrl":"https://doi.org/10.3389/frdem.2024.1360112","url":null,"abstract":"The social and economic challenges of the COVID-19 pandemic greatly impacted people's physical and mental health. The majority of care for individuals with brain health challenges, including dementia and mental illness, is provided by informal family caregivers. The “Coping with Loneliness, Isolation and COVID-19” (CLIC) Global Caregiver Survey 2020 received responses from over 5,000 caregivers across 50 countries of people living with enduring brain and/or physical health conditions.This study examined English-speaking caregivers of people with brain health challenges (dementia and mental health conditions) descriptions of changes and interruptions in their ability to provide care in the context of the COVID-19 pandemic.Quantitative and qualitative data were collected as part of the large-scale CLIC Global Caregiver Survey. Data from over 900 English language respondents were analyzed using descriptive statistics and thematic content analysis. A multidisciplinary team of clinicians and health policy practitioners participated in team-based qualitative analyses.The majority of respondents were from the United States (71% USA), female (83%) and care providers to people living with dementia (81%). Respondents reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources and the limited opportunities to maintain personal wellbeing. Practical, social, psychological and emotional impacts affected their ability to offer care. There was clear evidence that the disruption to health and social care services—institutions, day care and home services impacted the ability to offer care.The pandemic may be seen as a catastrophic “event” that negatively impacted lives and livelihoods. A number of the social determinants of health were negatively impacted for the caregivers surveyed during this prolonged period. Caring for caregivers and supportive health and social care interventions are required to maintain the wellbeing of this informal workforce. This study represents the largest, cross-country survey on the impact of the COVID-19 pandemic on caregivers of people with brain health challenges to date; serving as an important resource for support agencies and to inform policy.","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"14 8","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140227198","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":"You have interrupted me again!: making voice assistants more dementia-friendly with incremental clarification","authors":"Angus Addlesee, Arash Eshghi","doi":"10.3389/frdem.2024.1343052","DOIUrl":"https://doi.org/10.3389/frdem.2024.1343052","url":null,"abstract":"In spontaneous conversation, speakers seldom have a full plan of what they are going to say in advance: they need to conceptualise and plan incrementally as they articulate each word in turn. This often leads to long pauses mid-utterance. Listeners either wait out the pause, offer a possible completion, or respond with an incremental clarification request (iCR), intended to recover the rest of the truncated turn. The ability to generate iCRs in response to pauses is therefore important in building natural and robust everyday voice assistants (EVA) such as Amazon Alexa. This becomes crucial with people with dementia (PwDs) as a target user group since they are known to pause longer and more frequently, with current state-of-the-art EVAs interrupting them prematurely, leading to frustration and breakdown of the interaction. In this article, we first use two existing corpora of truncated utterances to establish the generation of clarification requests as an effective strategy for recovering from interruptions. We then proceed to report on, analyse, and release SLUICE-CR: a new corpus of 3,000 crowdsourced, human-produced iCRs, the first of its kind. We use this corpus to probe the incremental processing capability of a number of state-of-the-art large language models (LLMs) by evaluating (1) the quality of the model's generated iCRs in response to incomplete questions and (2) the ability of the said LLMs to respond correctly after the users response to the generated iCR. For (1), our experiments show that the ability to generate contextually appropriate iCRs only emerges at larger LLM sizes and only when prompted with example iCRs from our corpus. For (2), our results are in line with (1), that is, that larger LLMs interpret incremental clarificational exchanges more effectively. Overall, our results indicate that autoregressive language models (LMs) are, in principle, able to both understand and generate language incrementally and that LLMs can be configured to handle speech phenomena more commonly produced by PwDs, mitigating frustration with today's EVAs by improving their accessibility.","PeriodicalId":408305,"journal":{"name":"Frontiers in Dementia","volume":"293 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140249236","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}