Respite services for people with dementia and their carers: perspectives of key stakeholders

Thesis Title: Respite Services for People with Dementia and their Carers: Perspectives of Key Stakeholders Introduction: Respite services are intended to provide a temporary break in caregiving for carers. The international evidence for the effectiveness and acceptability of respite services is mixed in relation to dementia. Non-carer stakeholders have been under-represented in the existing literature, especially people with dementia. This thesis explores the perspectives of multiple stakeholders on respite services for dementia, with a view to informing service development in the Irish context. Methods: The overarching approach is pragmatic, qualitative and guided by Kitwood’s theory of ‘person-centred care’. Firstly, a concept analysis of ‘respite’ was conducted. Secondly, a qualitative systematic literature review was undertaken, synthesizing key stakeholders’ perspectives on respite services. Finally, semi-structured interviews were conducted with multiple stakeholders, including carers/people with dementia (n=15) and respite service providers/policy-makers/academics (n=20) regarding their perspectives on respite services in Ireland. Findings: The term ‘respite’ encompasses only the carer’s experience and is discordant with the principles of person-centred care. Negotiating timely access to respite services is challenging, due to under/inequitable provision, poor sign-posting, and the ambiguous legitimacy of respite needs in a biomedical-oriented health system. People with dementia sometimes experience malignant social psychologies which diminish personhood. This is partially due to deficit-based constructions of dementia and the task-focused care approach in respite settings. Many stakeholders advocate a move towards a social model of respite, with a 1) homecare orientation and 2) the capacity to support personhood for people with dementia, along with carer support. Conclusions: ‘Restorative care’ is presented as alternative nomenclature to ‘respite’, to signify an aim of restoring psychosocial wellbeing for dyads. Collaborative partnership across government departments is necessary to actualise a paradigm shift towards a social model of provision. Staff require education focused on 1) identifying and addressing psychosocial needs for dyads, and 2) supporting personhood in people with dementia. Strengths, limitations and implications are discussed

Multiple stakeholders' perspectives on respite service access for people with dementia and their carers

Background and Objectives: People with dementia and carers do not always access respite services in a timely manner, or in some cases, at all. Although carers’ perspectives on respite access have been explored, other stakeholder perspectives, especially providers and people with dementia, are underrepresented in the existing literature. The aim of this study was to synthesize multiple stakeholders’ perspectives, including people with dementia, on accessing respite services in the context of dementia. Research Design and Methods: Purposive maximum variation sampling was used. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n = 6), carers (n = 9), respite frontline staff (n = 4), respite managers (n = 8), primary care professionals (n = 3), and policy-makers/academics (n = 5). The process of consent is outlined. Data were interpreted inductively using thematic analysis. Reflexivity was considered throughout the research process. Results: Three themes (“Service Acceptability,” “Navigational Knowledge and Skills,” “Constructing and Adjudicating Respite Need”) were identified that relate to how access to respite services is negotiated between service providers and dyads. Discussion and Implications: A number of the findings support previous research; however, novel findings discussed relating to the access negotiation process include (a) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers nonmedical care as a family responsibility, and (b) the constraining effects of disparate conceptualizations of “respite” between carers and providers. Future research should interrogate the appropriate boundaries of public responsibility in relation to respite service planning/delivery for dementia, with particular reference to client preferences for community and in-home provision

Respite in dementia: an evolutionary concept analysis

Aim: There is a lack of conceptual clarity around ‘respite’ as it relates to people with dementia and their carers. This study provides clarification on the use and meaning of the term and considers the concept in relation to the dominant care paradigm in dementia, i.e. person-centred care. Methods: Rodgers’ (1989) evolutionary framework was employed. A systematic search was conducted on the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science and Cochrane databases (1980–2016, English) with fixed search terms relating to ‘respite’ and ‘dementia’. Papers with primary qualitative data and literature reviews were included. This search was supplemented with snowballing techniques (back/forward searching, generic search engines). Data were analysed thematically, through an iterative process of constant comparison. Results: Respite is understood both as a service that provides a physical break for the carer and as a psychological outcome, i.e. a mental break for the carer, which can be facilitated by formal services, under certain conditions. The conceptual model outlines how client factors (dyadic relations, recognising/accepting need, carer psychosocial issues, restorative occupation, and stigma) and service factors (model/characteristics, care quality, staff expertise, meaningful occupation for people with dementia and communication and support), interact to influence a respite outcome. The key antecedent for a positive respite experience is that the carer perceives that mutual benefit is garnered from service use. Conclusion: The term respite can be interpreted as both a service and an outcome. However, it is clear that ‘respite’, as currently understood, acknowledges the relational experience of the carer only; it is, therefore, potentially damaging to the planning and delivery of person-centred dementia care. We suggest ‘restorative care’ as a potential alternative nomenclature to respite care, thereby highlighting the importance of providing mutual, personalised health and social care services that serve to enhance care relationships rather than diminish them

Key stakeholders' experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review

Background: Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders' experiences of respite services for people with dementia, with a view to informing respite service development. Methods: A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia', following PRISMA guidelines. Noblit and Hare's approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a 'line-of-argument' was developed. Results: In total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 'service providers', 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad's needs and preferences. Conclusion: Respite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward

Examination of the molecular control of ruminal epithelial function in response to dietary restriction and subsequent compensatory growth in cattle

Background The objective of this study was to investigate the effect of dietary restriction and subsequent compensatory growth on the relative expression of genes involved in volatile fatty acid transport, metabolism and cell proliferation in ruminal epithelial tissue of beef cattle. Sixty Holstein Friesian bulls (mean liveweight 370 ± 35 kg; mean age 479 ± 15 d) were assigned to one of two groups: (i) restricted feed allowance (RES; n = 30) for 125 d (Period 1) followed by ad libitum access to feed for 55 d (Period 2) or (ii) ad libitum access to feed throughout (ADLIB; n = 30). Target growth rate for RES was 0.6 kg/d during Period 1. At the end of each dietary period, 15 animals from each treatment group were slaughtered and ruminal epithelial tissue and liquid digesta harvested from the ventral sac of the rumen. Real-time qPCR was used to quantify mRNA transcripts of 26 genes associated with ruminal epithelial function. Volatile fatty acid analysis of rumen fluid from individual animals was conducted using gas chromatography. Results Diet × period interactions were evident for genes involved in ketogenesis (BDH2, P = 0.017), pyruvate metabolism (LDHa, P = 0.048; PDHA1, P = 0.015) and cellular transport and structure (DSG1, P = 0.019; CACT, P = 0.027). Ruminal concentrations of propionic acid (P = 0.018) and n-valeric acid (P = 0.029) were lower in RES animals, compared with ADLIB, throughout the experiment. There was also a strong tendency (P = 0.064) toward a diet × period interaction for n-butyric with higher concentrations in RES animals, compared with ADLIB, during Period 1. Conclusions These data suggest that following nutrient restriction, the structural integrity of the rumen wall is compromised and there is upregulation of genes involved in the production of ketone bodies and breakdown of pyruvate for cellular energy. These results provide an insight into the potential molecular mechanisms regulating ruminal epithelial absorptive metabolism and growth following nutrient restriction and subsequent compensatory growth

Validation of the 6-Item Cognitive Impairment Test and the 4AT test for combined delirium and dementia screening in older Emergency Department attendees

Background screening for cognitive impairment in Emergency Department (ED) requires short, reliable tools. Objective to validate the 4AT and 6-Item Cognitive Impairment Test (6-CIT) for ED dementia and delirium screening. Design diagnostic accuracy study. Setting/subjects attendees aged ≥70 years in a tertiary care hospital’s ED. Methods: trained researchers assessed participants using the Standardised Mini Mental State Examination, Delirium Rating Scale-Revised 98 and Informant Questionnaire on Cognitive Decline in the Elderly, informing ultimate expert diagnosis using Diagnostic and Statistical Manual of Mental Disorders (DSM-V) criteria for dementia and delirium (reference standards). Another researcher blindly screened each participant, within 3 h, using index tests 4AT and 6-CIT.Resultof 419 participants (median age 77 years), 15.2% had delirium and 21.5% had dementia. For delirium detection, 4AT had positive predictive value (PPV) 0.68 (95% confidence intervals: 0.58–0.79) and negative predictive value (NPV) 0.99 (0.97–1.00). At a pre-specified 9/10 cut-off (9 is normal), 6-CIT had PPV 0.35 (0.27–0.44) and NPV 0.98 (0.95–0.99). Importantly, 52% of participants had no family present. A novel algorithm for scoring 4AT item 4 where collateral history is unavailable (score 4 if items 2–3 score ≥1; score 0 if items 1–3 score is 0) proved reliable; PPV 0.65 (0.54–0.76) and NPV 0.99 (0.97–1.00). For dementia detection, 4AT had PPV 0.39 (0.32–0.46) and NPV 0.94 (0.89–0.96); 6-CIT had PPV 0.46 (0.37–0.55) and NPV 0.94 (0.90–0.97). Conclusion: 6-CIT and 4AT accurately exclude delirium and dementia in older ED attendees. 6-CIT does not require collateral history but has lower PPV for delirium

“Anteaters” under the airport: a slender new species of blindsnake, genus Indotyphlops, from Timor-Leste (Scolecophidia: Typhlopidae: Asiatyphlopinae)

This is an accepted manuscript of an article published by Canadian Science Publishing on 08/06/2023. The published version of the article can be freely accessed on the journal website at: https://doi.org/10.1139/cjz-2022-0097 The accepted manuscript may differ from the final published version.We describe a slender immature female blindsnake from the main airport in Dili, Timor-Leste, as a new species of Indotyphlops, adding a third species to the country's known blindsnake fauna of Sundatyphlops polygrammicus (Schlegel, 1839) and Virgotyphlops braminus (Daudin, 1803). The new species has the following combination of characteristics: small size (snout–vent length = 119 mm), slender body (relative body thickness 71), T-V supralabial imbrication pattern, relative rostral width 0.36, 434 middorsal scales, relative tail length 1.7%, absence of enlarged occipital scales, and apical spine absent. The snake was found in an ant nest under several flat rocks near the fuel depot of Nicolau Lobato International Airport, and this habitat and the discovery in a busy location with heavy human impacts indicate that the species is likely a primarily subterranean myrmeco- or termitophage.Published versio

Older adults’ experiences with using wearable devices:Qualitative systematic review and meta-synthesis

Background: Older adults may use wearable devices for various reasons, ranging from monitoring clinically relevant health metrics or detecting falls to monitoring physical activity. Little is known about how this population engages with wearable devices, and no qualitative synthesis exists to describe their shared experiences with long-term use. Objective: This study aims to synthesize qualitative studies of user experience after a multi-day trial with a wearable device to understand user experience and the factors that contribute to the acceptance and use of wearable devices. Methods: We conducted a systematic search in CINAHL, APA PsycINFO, PubMed, and Embase (2015-2020; English) with fixed search terms relating to older adults and wearable devices. A meta-synthesis methodology was used. We extracted themes from primary studies, identified key concepts, and applied reciprocal and refutational translation techniques; findings were synthesized into third-order interpretations, and finally, a “line-of-argument” was developed. Our overall goal was theory development, higher-level abstraction, and generalizability for making this group of qualitative findings more accessible. Results: In total, we reviewed 20 papers; 2 evaluated fall detection devices, 1 tested an ankle-worn step counter, and the remaining 17 tested activity trackers. The duration of wearing ranged from 3 days to 24 months. The views of 349 participants (age: range 51-94 years) were synthesized. Four key concepts were identified and outlined: motivation for device use, user characteristics (openness to engage and functional ability), integration into daily life, and device features. Motivation for device use is intrinsic and extrinsic, encompassing many aspects of the user experience, and appears to be as, if not more, important than the actual device features. To overcome usability barriers, an older adult must be motivated by the useful purpose of the device. A device that serves its intended purpose adds value to the user’s life. The user’s needs and the support structure around the device—aspects that are often overlooked—seem to play a crucial role in long-term adoption. Our “line-of-argument” model describes how motivation, ease of use, and device purpose determine whether a device is perceived to add value to the user’s life, which subsequently predicts whether the device will be integrated into the user’s life. Conclusions: The added value of a wearable device is the resulting balance of motivators (or lack thereof), device features (and their accuracy), ease of use, device purpose, and user experience. The added value contributes to the successful integration of the device into the daily life of the user. Useful device features alone do not lead to continued use. A support structure should be placed around the user to foster motivation, encourage peer engagement, and adapt to the user’s preferences

Internationalization of the curriculum through student-led climate change teaching activity

Internationalization of the curriculum is important in today's globalized environment, with the increasingly interdisciplinary nature of complex issues, such as climate change, requiring students to think beyond their disciplinary and cultural boundaries. Here we introduce a novel cross-discipline and cross-country activity with the overall goal to expose students to an international environmental problem (climate change) that requires an awareness of different perspectives, so as to contribute to their development of responsible global citizenship through internationalization of the curriculum. Students studying in Australia and the United States of America completed an anonymous survey on their climate change perceptions, and then the students discussed the results via a live video link. The survey results provided the catalyst for students to reflect on the ecological impact of their different lifestyles. The students could demonstrate their critical thinking skills and develop cross disciplinary thinking by exploring the vexed issue of climate change science, perceptions, and culture. Overall, the survey was simple to implement and the tutorial was successful despite the different time zones. Our activity achieved the broader goal of internationalization of student learning and enhanced our students' ability to view problems from different angles and helped foster boundary-crossing skills

Advancing operational flood forecasting, early warning and risk management with new emerging science: Gaps, opportunities and barriers in Kenya

Kenya and the wider East African region suffer from significant flood risk, as illustrated by major losses of lives, livelihoods and assets in the most recent years. This is likely to increase in future as exposure rises and rainfall intensifies under climate change. Accordingly, flood risk management is a priority action area in Kenya's national climate change adaptation planning. Here, we outline the opportunities and challenges to improve end-to-end flood early warning systems, considering the scientific, technical and institutional/governance dimensions. We demonstrate improvements in rainfall forecasts, river flow, inundation and baseline flood risk information. Notably, East Africa is a ‘sweetspot’ for rainfall predictability at sub-seasonal to seasonal timescales for extending forecast lead times beyond a few days and for ensemble flood forecasting. Further, we demonstrate coupled ensemble flow forecasting, new flood inundation simulation, vulnerability and exposure data to support Impact based Forecasting (IbF). We illustrate these advances in the case of fluvial and urban flooding and reflect on the potential for improved flood preparedness action. However, we note that, unlike for drought, there remains no national flood risk management framework in Kenya and there is need to enhance institutional capacities and arrangements to take full advantage of these scientific advances