RSS 1.0Dementia
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Transcriptome-wide alternative splicing and transcript-level differential expression analysis of post-mortem lewy body dementia brainsLewy body dementias (LBD) are the second most common dementia. Several genes have been associated with LBD, but little is known about their contributions to LBD pathophysiology. Each gene may transcribe multiple RNA, and LBD brains have extensive RNA splicing dysregulation. Hence, we completed the first transcriptome-wide transcript-level differential expression analysis of post-mortem LBD brains for gaining more insights into LBD molecular pathology that are essential for facilitating discovery of novel therapeutic targets and biomarkers for LBD. We completed transcript-level quantification of next-generation RNA-sequencing data from post-mortem anterior cingulate (ACC) and dorsolateral prefrontal cortices (DLPFC) of people with pathology-verified LBD (LBD = 14; Controls = 7) using Salmon. We identified differentially expressed transcripts (DET) using edgeR and investigated their functional implications using DAVID. We performed transcriptome-wide alternative splicing analysis using DRIMseq. We identified 74 DET in ACC and 96 DET in DLPFC after Benjamini-Hochberg false discovery rate (FDR) correction (5%). There were 135 and 98 FDR-corrected alternatively spliced genes in ACC and DLPFC of LBD brains, respectively. Identified DET may contribute to LBD pathology by altering DNA repair, apoptosis, neuroplasticity, protein phosphorylation, and regulation of RNA transcription. We confirm widespread alternative splicing and absence of chronic neuroinflammation in LBD brains. Transcript-level differential expression analysis can reveal specific DET that cannot be detected by gene-level expression analyses. Therapeutic and diagnostic biomarker potential of identified DET, especially those from TMEM18, MICB, MPO, and GABRB3, warrant further investigation. Future LBD blood-based biomarker studies should prioritise measuring the identified DET in small extracellular vesicles.
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"I want to get out … I've got a child at home": Intersubjectivity, reality disjunctures and distress in the care of people living with dementia in the acute hospitalThe pivotal role of language in achieving and maintaining intersubjectivity in interaction creates particular problems where one party has a medical condition affecting language use. Dementia can have significant impact on language comprehension, expression and memory; this creates challenges not only for people living with dementia (PLWD) but also those who care for them. In UK hospitals approximately 25% of beds are occupied by PLWD (Alzheimer's Society, 2009) and the need for improved care is widely acknowledged. One specific challenge is the issue of competing realities, where a PLWD may not be oriented to time or place, and may produce what appear to healthcare professionals (HCPs) to be inaccurate, untrue or even bizarre statements. As part of a wider UK-based study identifying ways to avoid, de-escalate or resolve distress for PLWD in the acute hospital setting, and prompted by their co-occurrence with distress, we used conversation analysis to examine interactions involving these 'reality disjunctures' (Pollner, 1975). We analysed 54 HCP/PLWD interactions collected across four acute wards in two large teaching hospitals. We found that responses to reality disjunctures fell into four categories across a continuum: challenging the competing reality expressed by the PLWD; diverting the interaction to an alternative aspect of reality that could be shared; finding a commonality in the PLWD's reality; and co-constructing the PLWD's reality. Our findings show similarities with Lindholm's (2015) analysis of 'confabulation' by a single PLWD in a day-care centre; however the range, distribution and detail of the practices differed in ways that reflected the contingencies of the acute care setting. Approaches in the middle of our continuum, which work to create some kind of shareable world or experience, are one way in which skilled staff support PLWD not only to manage distress, but also to maintain a social self rather than a subjective one. Identifying these approaches makes them available to others to improve patient care.
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The cellular and extracellular proteomic signature of human dopaminergic neurons carrying the LRRK2 G2019S mutationBACKGROUND: Extracellular vesicles are easily accessible in various biofluids and allow the assessment of disease-related changes in the proteome. This has made them a promising target for biomarker studies, especially in the field of neurodegeneration where access to diseased tissue is very limited. Genetic variants in the LRRK2 gene have been linked to both familial and sporadic forms of Parkinson's disease. With LRRK2 inhibitors entering clinical trials, there is an unmet need for biomarkers that reflect LRRK2-specific pathology and target engagement. METHODS: In this study, we used induced pluripotent stem cells derived from a patient with Parkinson's disease carrying the LRRK2 G2019S mutation and an isogenic gene-corrected control to generate human dopaminergic neurons. We isolated extracellular vesicles and neuronal cell lysates and characterized their proteomic signature using data-independent acquisition proteomics. Then, we performed differential expression analysis to identify dysregulated proteins in the mutated line. We used Metascape and gene ontology enrichment analysis on the dysregulated proteomes to identify changes in associated functional networks. RESULTS: We identified 595 significantly differentially regulated proteins in extracellular vesicles and 3,205 in cell lysates. We visualized functionally relevant protein-protein interaction networks and identified key regulators within the dysregulated proteomes. Using gene ontology, we found a close association with biological processes relevant to neurodegeneration and Parkinson's disease. Finally, we focused on proteins that were dysregulated in both the extracellular and cellular proteomes. We provide a list of ten biomarker candidates that are functionally relevant to neurodegeneration and linked to LRRK2-associated pathology, for example, the sonic hedgehog signaling molecule, a protein that has tightly been linked to LRRK2-related disruption of cilia function. CONCLUSION: In conclusion, we characterized the cellular and extracellular proteome of dopaminergic neurons carrying the LRRK2 G2019S mutation and proposed an experimentally based list of biomarker candidates for future studies.
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Supporting a family member with dementia to live at home: The experiences of caregiversBACKGROUND: In the United Kingdom, specialist teams managing crises in dementia make efforts to reduce inpatient admissions by supporting people to live for longer in their own homes. However, fluctuations in the health and social circumstances of both the person with dementia and/or their family caregiver can lead to 'crisis': a breakdown in home care often leading to inpatient admissions. At this point, a team managing crises in dementia (TMCD) might become involved. These multidisciplinary teams begin with a rapid assessment to establish the needs of the person with dementia and their caregiver(s), followed by intensive but short-term interventions to reduce the risk of inpatient admission. There is little evidence as to how family caregiver experience input from a TMCD. METHODS: A thematic analysis of qualitative interviews with caregivers supporting a family member with dementia to live at home and who have received support from a TMCD. RESULTS: The personal troubles of family caregivers are intertwined with their experience of engaging with and trying to gain support from human services, particularly TMCDs. While respondents describe how specific individuals have addressed or added to the troubles they face, the most impactful interventions from their perspectives are medication for managing challenging behaviour and knowing that there is a service they can telephone in a crisis. CONCLUSIONS: Efforts to reduce inpatient admissions by supporting people to live in their own homes for as long as is practicable, even when carers may have reached the limits of their caring capacities, can, at best, only delay inpatient to long-stay residential accommodation. This is because when one frail older person has the responsibility of caring for another frail older person, even with support from TMCD and other health and social care services, crises are difficult to manage.
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Risk of dementia associated with anticholinergic drugs for overactive bladder in adults aged ≥55 years: Nested case-control studyOBJECTIVE: To investigate whether different anticholinergic drug treatments for overactive bladder have differential risks for incident dementia, in a large representative population of older adults in England. DESIGN: Nested case-control study. SETTING: General practices in England providing data to the Clinical Practice Research Datalink (CPRD) GOLD database, with linked patient admission records from secondary care (Hospital Episode Statistics), 1 January 2006 and 16 February 2022. PARTICIPANTS: 170 742 patients aged ≥55 years, with a first reported diagnosis of dementia during the study period, matched by age, sex, and general practice with 804 385 individuals without dementia (controls). INTERVENTIONS: Cumulative drug use (defined using total standardised daily dose) of different anticholinergic drugs used for the treatment of an overactive bladder, and a non-anticholinergic drug, mirabegron, in the period 3-16 years before a diagnosis of dementia (or equivalent date in matched controls). MAIN OUTCOME MEASURES: Odds ratios for onset of dementia associated with the different anticholinergic drugs used for the treatment of an overactive bladder, adjusted for sociodemographic characteristics, clinical comorbidities, and use of other anticholinergic drug treatments. RESULTS: The study population comprised 62.6% women, and median age was 83 (interquartile range 77-87) years. 15 418 (9.0%) patients with dementia and 63 369 (7.9%) controls without dementia had used anticholinergic drugs for the treatment of an overactive bladder in the 3-16 years before diagnosis (or equivalent date for controls). The adjusted odds ratio for dementia associated with the use of any anticholinergic drug used to treat an overactive bladder was 1.18 (95% confidence interval (CI) 1.16 to 1.20), and was higher in men (1.22, 1.18 to 1.26) than women (1.16, 1.13 to 1.19). The risk of dementia was substantially increased with the use of oxybutynin hydrochloride (adjusted odds ratio 1.31, 95% CI 1.21 to 1.42 and 1.28, 1.15 to 1.43 for use of 366-1095 and >1095 total standardised daily doses, respectively), solifenacin succinate (1.18, 1.09 to 1.27 and 1.29, 1.19 to 1.39), and tolterodine tartrate (1.27, 1.19 to 1.37 and 1.25, 1.17 to 1.34). No significant increases in the risk of dementia associated with darifenacin, fesoterodine fumarate, flavoxate hydrochloride, propiverine hydrochloride, and trospium chloride were found. The association between mirabegron, a non-anticholinergic drug, and dementia was variable across the dose categories and might be caused by previous use of anticholinergic drugs for the treatment of an overactive bladder in these individuals. CONCLUSIONS: Of the different anticholinergic drugs used to treat an overactive bladder, oxybutynin hydrochloride, solifenacin succinate, and tolterodine tartrate were found to be most strongly associated with the risk of dementia in older adults. This finding emphasises the need for clinicians to take into account the possible long term risks and consequences of the available treatment options for an overactive bladder in older adults, and to consider prescribing alternative treatments that might be associated with a lower risk of dementia.
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Dementia risk prediction modelling in low- and middle-income countries: Current state of evidenceDementia is a leading cause of death and disability with over 60% of cases residing in low- and middle-income countries (LMICs). Therefore, new strategies to mitigate risk are urgently needed. However, despite the high burden of disease associated with dementia in LMICs, research into dementia risk profiling and risk prediction modelling is limited. Further, dementia risk prediction models developed in high income countries generally do not transport well to LMICs suggesting that context-specific models are instead needed. New prediction models have been developed, in China and Mexico only, with varying predictive accuracy. However, none has been externally validated or incorporated variables that may be important for predicting dementia risk in LMIC settings such as socio-economic status, literacy, healthcare access, nutrition, stress, pollutants, and occupational hazards. Since there is not yet any curative treatment for dementia, developing a context-specific dementia prediction model is urgently needed for planning early interventions for vulnerable groups, particularly for resource constrained LMIC settings.
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Development of a best practice guidance on online peer support for people with young-onset dementiaThis work aimed to develop a Best Practice Guidance on online peer support for people with young-onset dementia (YOD). The Best Practice Guidance was developed through a systematic literature review, focus groups, an online survey, and interviews and consultations with people with YOD and professionals. The Best Practice Guidance consists of two parts. Part 1 contains information for people with YOD about what online peer support entails, what to expect from it, and how to get involved. Part 2 is aimed at those who facilitate or moderate online peer support (professionals or people with lived experience) and includes guidelines on how to optimize online peer support for people with YOD. The Best Practice Guidance on online peer support provides (1) people with YOD with evidence-based, relevant, and accessible information about what online peer support entails and how it could help them, (2) providers and facilitators with guidelines on how to optimize online peer support for people with YOD, and (3) healthcare professionals with a concise and accessible tool for signposting. Future research is needed to implement and disseminate the Best Practice Guidance among dementia organizations and healthcare practices and should include rigorous studies on the implementation and sustainability of online peer support for people with YOD.
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Attitudes and preferences towards screening for dementia with a focus on ethnic minority and low socio-economic groups: A systematic review of research studies written in the english languageBACKGROUND: Increased understanding of dementia risk-reduction and early detection of Alzheimer's disease and related disorders has spurred interest in the identification of risks for dementia, underlying putative biologies, or dementia itself. Implementation of such approaches require acceptability to the public. Research prior to 2012 indicated limited acceptability for population dementia screening. The changing landscape of dementia prevention research may influence recent perceptions. Additionally, perspectives from underserved populations, such as ethnic minorities and low socio-economic groups, are lacking. OBJECTIVE: In this systematic review, we sought published studies since 2012 on attitudes and preferences of people with dementia, carers and the general public from ethnic minorities and low socio-economic groups regarding dementia screening. METHODS: This review was preregistered on PROSPERO (CRD42023384115) and followed PRISMA guidelines. Key search terms were entered into five databases. Articles were included if they focused on population or risk screening for dementia via primary/community care-based assessments, and which included majority ethnic minority or low socio-economic groups or discretely considered these groups in data analysis. Data were synthesized narratively. RESULTS: Seven studies reported perspectives of ethnic minorities regarding dementia screening; one study included people from low socio-economic groups. Results indicated that participants from ethnic minorities were willing to undergo dementia screening. Predictors of willingness included belief in benefits, desire to boost diversity, and to implement lifestyle changes. Unwillingness was associated with anxiety regarding results. CONCLUSIONS: Although there seems to be high acceptability for screening in the studied groups, more research is necessary to explore the practical considerations for screening such as cultural and economic barriers, trust, and post-screening actions.
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Towards establishing quality standards on human rights for services in dementia careBACKGROUND: People with dementia often experience violations of fundamental human rights and impeded access to healthcare. This study aims to investigate the views of experts regarding the use of the United Nations Convention on the Rights of People with Disabilities (CRPD) principles as quality standards for human rights-based care. METHODS: A single-round Delphi e-consultation with 15 dementia experts was designed to evaluate each CRPD principle and collect feedback on their views about the application of the CRPD principles in dementia care. RESULTS: The CRPD principles were fully endorsed as quality standards; however, several experts commented on the complexities of the use of CRPD principles in relation to information disclosure, capacity assessment, stakeholders' involvement in decision-making, respecting needs and preferences, holistic approaches in care practice, and protection against abuse, neglect and discrimination. CONCLUSIONS: These findings indicate the CRPD quality standards were fully applicable for people with dementia although some clarification around interpretation could assist in their use. Future research should elaborate on further points of support and guidance for dementia care providing examples of good practice from across the globe, and develop a concordant, human rights-based scheme for the implementation and evaluation of dementia services. IMPLICATIONS FOR PRACTICE: This study suggests that the CRPD can serve as a benchmark for human rights-based practices in dementia services globally that could enhance nursing care practice. Nursing staff are encouraged to consider human rights in relation to the complexities associated with people with dementia, their caregivers, and other services involved in their care.
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Impact of Apolipoprotein E ε4 in alzheimer's disease: A meta-analysis of voxel-based morphometry studiesBACKGROUND AND PURPOSE: Alzheimer's disease (AD) is the most-prevalent form of dementia and imposes substantial burdens at the personal and societal levels. The apolipoprotein E (APOE) ε4 allele is a genetic factor known to increase AD risk and exacerbate brain atrophy and its symptoms. We aimed to provide a comprehensive review of the impacts of APOE ε4 on brain atrophy in AD as well as in mild cognitive impairment (MCI) as a transitional stage of AD. METHODS: We performed a coordinate-based meta-analysis of voxel-based morphometry studies to compare gray-matter atrophy patterns between carriers and noncarriers of APOE ε4. We obtained coordinate-based structural magnetic resonance imaging data from 1,135 individuals who met our inclusion criteria among 12 studies reported in PubMed and Google Scholar. RESULTS: We found that atrophy of the hippocampus and parahippocampus was significantly greater in APOE ε4 carriers than in noncarriers, especially among those with AD and MCI, while there was no significant atrophy in these regions in healthy controls who were also carriers. CONCLUSIONS: The present meta-analysis has highlighted the significant link between the APOE ε4 allele and hippocampal atrophy in both AD and MCI, which emphasizes the critical influence of the allele on neurodegeneration, especially in the hippocampus. These findings improve the understanding of AD pathology, potentially facilitating progress in early detection, targeted interventions, and personalized care strategies for individuals at risk of AD who carry the APOE ε4 allele.
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What's new in dementia risk prediction modelling? An updated systematic reviewINTRODUCTION: Identifying individuals at high risk of dementia is critical to optimized clinical care, formulating effective preventative strategies, and determining eligibility for clinical trials. Since our previous systematic reviews in 2010 and 2015, there has been a surge in dementia risk prediction modelling. The aim of this study was to update our previous reviews to explore, and critically review, new developments in dementia risk modelling. METHODS: MEDLINE, Embase, Scopus, and Web of Science were searched from March 2014 to June 2022. Studies were included if they were population- or community-based cohorts (including electronic health record data), had developed a model for predicting late-life incident dementia, and included model performance indices such as discrimination, calibration, or external validation. RESULTS: In total, 9,209 articles were identified from the electronic search, of which 74 met the inclusion criteria. We found a substantial increase in the number of new models published from 2014 (>50 new models), including an increase in the number of models developed using machine learning. Over 450 unique predictor (component) variables have been tested. Nineteen studies (26%) undertook external validation of newly developed or existing models, with mixed results. For the first time, models have also been developed in low- and middle-income countries (LMICs) and others validated in racial and ethnic minority groups. CONCLUSION: The literature on dementia risk prediction modelling is rapidly evolving with new analytical developments and testing in LMICs. However, it is still challenging to make recommendations about which one model is the most suitable for routine use in a clinical setting. There is an urgent need to develop a suitable, robust, validated risk prediction model in the general population that can be widely implemented in clinical practice to improve dementia prevention.
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Chatting: Family carers' perspectives on receiving support from dementia crisis teamsFamily caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person's changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate 'chatting' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team's involvement with them.
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Population attributable fractions of modifiable risk factors for dementia: A systematic review and meta-analysisBACKGROUND: More than 57 million people have dementia worldwide. Evidence indicates a change in dementia prevalence and incidence in high-income countries, which is likely to be due to improved life-course population health. Identifying key modifiable risk factors for dementia is essential for informing risk reduction and prevention strategies. We therefore aimed to estimate the population attributable fraction (PAF) for dementia associated with modifiable risk factors. METHODS: In this systematic review and meta-analysis, we searched Embase, MEDLINE, and PsycINFO, via Ovid, from database inception up to June 29, 2023, for population-derived or community-based studies and reviews reporting a PAF value for one or more modifiable risk factor for later-life dementia (prevalent or incident dementia in people aged ≥60 years), with no restrictions on dementia subtype, the sex or baseline age of participants, or the period of study. Articles were independently screened for inclusion by four authors, with disagreements resolved through consensus. Data including unweighted and weighted PAF values (weighted to account for communality or overlap in risk) were independently extracted into a predefined template by two authors and checked by two other authors. When five or more unique studies investigated a given risk factor or combination of the same factors, random-effects meta-analyses were used to calculate a pooled PAF percentage estimate for the factor or combination of factors. The review protocol was registered on PROSPERO, CRD42022323429. FINDINGS: 4024 articles were identified, and 74 were included in our narrative synthesis. Overall, PAFs were reported for 61 modifiable risk factors, with sufficient data available for meta-analysis of 12 factors (n=48 studies). In meta-analyses, the highest pooled unweighted PAF values were estimated for low education (17·2% [95% CI 14·4-20·0], p<0·0001), hypertension (15·8% [14·7-17·1], p<0·0001), hearing loss (15·6% [10·3-20·9], p<0·0001), physical inactivity (15·2% [12·8-17·7], p<0·0001), and obesity (9·4% [7·3-11·7], p<0·0001). According to weighted PAF values, low education (9·3% [6·9-11·7], p<0·0001), physical inactivity (7·3% [3·9-11·2], p=0·0021), hearing loss (7·2% [5·2-9·7], p<0·0001), hypertension (7·1% [5·4-8·8], p<0·0001), and obesity (5·3% [3·2-7·4], p=0·0001) had the highest pooled estimates. When low education, midlife hypertension, midlife obesity, smoking, physical inactivity, depression, and diabetes were combined (Barnes and Yaffe seven-factor model; n=9 studies), the pooled unweighted and weighted PAF values were 55·0% (46·5-63·5; p<0·0001) and 32·0% (26·6-37·5; p<0·0001), respectively. The pooled PAF values for most individual risk factors were higher in low-income and middle-income countries (LMICs) versus high-income countries. INTERPRETATION: Governments need to invest in a life-course approach to dementia prevention, including policies that enable quality education, health-promoting environments, and improved health. This investment is particularly important in LMICs, where the potential for prevention is high, but resources, infrastructure, budgets, and research focused on ageing and dementia are limited. FUNDING: UK Research and Innovation (Medical Research Council).
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Usability of web-based tools designed for communication and decision-making in dementia: Systematic review and design briefINTRODUCTION: There is an increased number of web-based tools designed for people with dementia and their family caregivers and addressing communication and decision-making. The loss of cognitive functions associated with dementia can impact individuals' experiences and use of web-based tools. There is a need for high quality and user-friendly web-based tools that support communication and decision-making for people with dementia and their family caregivers. OBJECTIVE: To identify usability requirements, usability testing methods, and design suggestions from studies focusing on web-based tools for communication and decision-making support in dementia care. METHODS: We conducted a systematic review with narrative synthesis. Five databases were systematically searched in February 2023. The quality of the included studies was assessed using the Mixed Methods Appraisal Tool. RESULTS: A total of 1,032 articles were identified and 7 fulfilled inclusion criteria. Web-based tools addressed technology usage, health promotion, home modification information, shared decision-making facilitation, information needs and social isolation. Methods to test usability included surveys, interviews, focus groups, cognitive walkthroughs and think-aloud procedures. Findings suggested reducing cognitive load, enhancing readability, providing clear language, and emphasising the need for additional support for people with dementia. Design recommendations include optimising information delivery and presentation, enhancing visual elements, streamlining navigation, providing concrete examples, using clear language, and offering training and tailored support. CONCLUSION: Usability requirements ranged from visual appearance and navigation to delivery of content and support needed. This review contributes to efforts to improve design and development of web-based tools targeting communication and decision-making in dementia care. Further research should address tailored support to enhance usability for people with dementia.
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Develop, implement and evaluate technology for social health in dementia: Lessons in best practice from the European DISTINCT networkObjective: DISTINCT is a Marie Sklodowska-Curie Innovative Training Network. Supported by the INTERDEM network and European Association of Geriatric Psychiatry, DISTINCT aimed to establish a multi-disciplinary, multi-professional and intersectorial European research framework, for assistive technologies to support social health in dementia. In this symposium, we present research associated with the maturity lifecycle (development to evaluation) of four technologies: the ROADMAP online self-management intervention; online peer support for people with young onset dementia; online acceptance and commitment therapy for caregivers (ACT); and the FindMyApps tablet-based intervention for people with dementia and their caregiver. Method(s): In 2019, 15 ESRs were recruited to 13 research organizations across 8 European countries. Research projects were launched in collaboration with people living with dementia and caregivers, and industry partners. Projects were adapted to meet challenges and opportunities due to the COVID-19 pandemic. The projects presented in this symposium employed a variety of research paradigms (user-centred design, feasibility and implementation studies, randomized controlled trials). Key insights from each project were combined into best practice guidance for developers, researchers, healthcare professionals and people living with dementia, covering the full innovation lifecycle. Result(s): All DISTINCT research projects are now in the final stages, having so far resulted in more than 35 peer reviewed publications and many contributions to international conferences. Insights were incorporated into the Best Practice Guidance for Human Interaction with Technology in Dementia, published in December 2022, which will be updated by the end of 2023 with further insights from completed projects. Key findings presented in this symposium concern: development of ROAD MAP online; best practices for, and barriers to, online peer support; acceptability and preliminary effectiveness of online ACT; effectiveness and cost effectiveness of FindMyApps. Conclusion(s): There is growing evidence that assistive technologies are feasible and effective for supporting social health of people with dementia and caregivers. People living with dementia, formal and informal caregivers, policymakers, designers, and researchers can refer to the DISTINCT Best Practice Guidance to inform their approach to assistive technology. Future research can build on these results, to further understand and improve usability, (cost-)effectiveness, and implementation of assistive technology in dementia.
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User experience and analytics inform the development of an innovative telehealth curriculum: ROAD MAP (Recovery- Oriented Approach to Dementia through Meaningful Activity Participation)Objective: To user-test a recovery-oriented, clinician-facilitated, web-based, self-management intervention accessible via mobile device: ROAD MAP. The initial programme theory underlying this research is that supporting the experiences of CHIME (connectedness, hope and optimism, identity, meaning in life and empowerment), in persons living with dementia (PLWD) will have health-promoting benefits for the PLWD. Method(s): The intervention will be delivered to 20 dyads of community-dwelling PLWDs and their carers via a five-week, online, recovery-based curriculum. Five convenience-sampled occupational therapists (OT) will be trained online in a 10- hour training programme to deliver the intervention. All data collection instruments are informed by realist evaluation (RE) methodology and enquire into initial programme theories (IPTs) used to develop the curriculum and the ROAD MAP digital tool. Data collection, between January and March 2023, will occur during both the OT training and the five-week pilot study. The OT facilitators will provide qualitative feedback on the ROAD MAP technology. Data will be collected via pre-post self-completion forms, semi-structured interviews, a focus group, and weekly guided reflective journal. PLWD's self-reported, user experience will be live polled within the weekly one-hour long sessions of the pilot. Their digital usage analytics will be generated by the MyGuide platform on which the ROAD MAP intervention is built. These data will be manually screened for IPT relevance and used to test emerging programme theories. Result(s): All data will be collected by end of March 2023 and analysed by end of May 2023. NVivo will be used to generate refined programme theories according to RE methodology. This will provide evidence of plausible, causal context-mechanism-outcome configurations which may optimize the refined version of the ROAD MAP digital intervention, curriculum and facilitator training methods. Conclusion(s): This study will increase knowledge of a methodology for developing useable and acceptable recoveryoriented telehealth tools for PLWD. This intervention could directly enhance the education of health care professionals and improve the equitable delivery of dementia services.
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The 2022 symposium on dementia and brain aging in low- and middle-income countries: Highlights on research, diagnosis, care, and impactTwo of every three persons living with dementia reside in low- and middle-income countries (LMICs). The projected increase in global dementia rates is expected to affect LMICs disproportionately. However, the majority of global dementia care costs occur in high-income countries (HICs), with dementia research predominantly focusing on HICs. This imbalance necessitates LMIC-focused research to ensure that characterization of dementia accurately reflects the involvement and specificities of diverse populations. Development of effective preventive, diagnostic, and therapeutic approaches for dementia in LMICs requires targeted, personalized, and harmonized efforts. Our article represents timely discussions at the 2022 Symposium on Dementia and Brain Aging in LMICs that identified the foremost opportunities to advance dementia research, differential diagnosis, use of neuropsychometric tools, awareness, and treatment options. We highlight key topics discussed at the meeting and provide future recommendations to foster a more equitable landscape for dementia prevention, diagnosis, care, policy, and management in LMICs. HIGHLIGHTS: Two-thirds of persons with dementia live in LMICs, yet research and costs are skewed toward HICs. LMICs expect dementia prevalence to more than double, accompanied by socioeconomic disparities. The 2022 Symposium on Dementia in LMICs addressed advances in research, diagnosis, prevention, and policy. The Nairobi Declaration urges global action to enhance dementia outcomes in LMICs.
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Delirium is more common and associated with worse outcomes in Parkinson's disease compared to older adult controls: Results of two prospective longitudinal cohort studiesBACKGROUND: Inpatient prevalence of Parkinson's disease (PD) delirium varies widely across the literature. Delirium in general older populations is associated with adverse outcomes, such as increased mortality, dementia, and institutionalisation. However, to date there are no comprehensive prospective studies in PD delirium. This study aimed to determine delirium prevalence in hospitalised PD participants and the association with adverse outcomes, compared to a control group of older adults without PD. METHODS: Participants were hospitalised inpatients from the 'Defining Delirium and its Impact in Parkinson's Disease' and the 'Delirium and Cognitive Impact in Dementia' studies comprising 121 PD participants and 199 older adult controls. Delirium was diagnosed prospectively using the Diagnostic and Statistical Manual of Mental Disorders 5th Edition criteria. Outcomes were determined by medical note reviews and/or home visits 12 months post hospital discharge. RESULTS: Delirium was identified in 66.9% of PD participants compared to 38.7% of controls (p < 0.001). In PD participants only, delirium was associated with a significantly higher risk of mortality (HR = 3.3 (95% confidence interval [CI] = 1.3-8.6), p = 0.014) and institutionalisation (OR = 10.7 (95% CI = 2.1-54.6), p = 0.004) 12 months post-discharge, compared to older adult controls. However, delirium was associated with an increased risk of developing dementia 12 months post-discharge in both PD participants (OR = 6.1 (95% CI = 1.3-29.5), p = 0.024) and in controls (OR = 13.4 (95% CI = 2.5-72.6), p = 0.003). CONCLUSION: Delirium is common in hospitalised PD patients, affecting two thirds of patients, and is associated with increased mortality, institutionalisation, and dementia. Further research is essential to understand how to accurately identify, prevent and manage delirium in people with PD who are in hospital.
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EmpRess: An eHealth implementation readiness checklist for dementia developed through an interview study of stakeholder needsOBJECTIVE: This study aimed to create a tool to assess eHealth interventions for dementia by adapting an existing implementation readiness (ImpRess) checklist that assessed manualised interventions. METHODS: In Part 1, online semi-structured interviews with individual stakeholders (N = 9) with expertise in eHealth and dementia were conducted (response rate 83%). The Nonadoption, Abandonment, and challenges to the Scale-Up, Spread, and Sustainability of Health and care technologies (NASSS) framework was applied, both to guide the construction of the interview guide, as well as to use its subdomains as codes in the deductive qualitative thematic analysis. Respondents were industry professionals (n = 3), researchers (n = 3), policy officers (n = 2), and a clinician (n = 1). In Part 2, the items of the original ImpRess checklist were supplemented by items that covered determinants discussed in the interviews, that were not included in the original checklist. RESULTS: The main findings from the interviews included: Participants' preference for a non-dementia-specific, more general approach to the checklist; the importance of searching for shared values with implementers; and the need for more systematic monitoring of implementation. CONCLUSIONS: The EmpRess checklist applies an inclusive design approach. The checklist will help evaluate the implementation determinants of eHealth interventions for dementia and provide up-to-date information on what is, and is not, working in eHealth for dementia care.
