Visual hallucinations are common in older people and are especially associated with ophthalmological and neurological disorders, including dementia and Parkinson's disease. Uncertainties remain ...whether there is a single underlying mechanism for visual hallucinations or they have different disease-dependent causes. However, irrespective of mechanism, visual hallucinations are difficult to treat. The National Institute for Health Research (NIHR) funded a research programme to investigate visual hallucinations in the key and high burden areas of eye disease, dementia and Parkinson's disease, culminating in a workshop to develop a unified framework for their clinical management. Here we summarise the evidence base, current practice and consensus guidelines that emerged from the workshop.Irrespective of clinical condition, case ascertainment strategies are required to overcome reporting stigma. Once hallucinations are identified, physical, cognitive and ophthalmological health should be reviewed, with education and self-help techniques provided. Not all hallucinations require intervention but for those that are clinically significant, current evidence supports pharmacological modification of cholinergic, GABAergic, serotonergic or dopaminergic systems, or reduction of cortical excitability. A broad treatment perspective is needed, including carer support. Despite their frequency and clinical significance, there is a paucity of randomised, placebo-controlled clinical trial evidence where the primary outcome is an improvement in visual hallucinations. Key areas for future research include the development of valid and reliable assessment tools for use in mechanistic studies and clinical trials, transdiagnostic studies of shared and distinct mechanisms and when and how to treat visual hallucinations.
Liraglutide is a glucagon-like peptide-1 (GLP-1) analogue currently approved for type 2 diabetes and obesity. Preclinical evidence in transgenic models of Alzheimer's disease suggests that ...liraglutide exerts neuroprotective effects by reducing amyloid oligomers, normalising synaptic plasticity and cerebral glucose uptake, and increasing the proliferation of neuronal progenitor cells. The primary objective of the study is to evaluate the change in cerebral glucose metabolic rate after 12 months of treatment with liraglutide in participants with Alzheimer's disease compared to those who are receiving placebo.
ELAD is a 12-month, multi-centre, randomised, double-blind, placebo-controlled, phase IIb trial of liraglutide in participants with mild Alzheimer's dementia. A total of 206 participants will be randomised to receive either liraglutide or placebo as a daily injection for a year. The primary outcome will be the change in cerebral glucose metabolic rate in the cortical regions (hippocampus, medial temporal lobe, and posterior cingulate) from baseline to follow-up in the treatment group compared with the placebo group. The key secondary outcomes are the change from baseline to 12 months in z scores for clinical and cognitive measures (Alzheimer's Disease Assessment Scale-Cognitive Subscale and Executive domain scores of the Neuropsychological Test Battery, Clinical Dementia Rating Sum of Boxes, and Alzheimer's Disease Cooperative Study-Activities of Daily Living) and the incidence and severity of treatment-emergent adverse events or clinically important changes in safety assessments. Other secondary outcomes are 12-month change in magnetic resonance imaging volume, diffusion tensor imaging parameters, reduction in microglial activation in a subgroup of participants, reduction in tau formation and change in amyloid levels in a subgroup of participants measured by tau and amyloid imaging, and changes in composite scores using support machine vector analysis in the treatment group compared with the placebo group.
Alzheimer's disease is a leading cause of morbidity worldwide. As available treatments are only symptomatic, the search for disease-modifying therapies is a priority. If the ELAD trial is successful, liraglutide and GLP-1 analogues will represent an important class of compounds to be further evaluated in clinical trials for Alzheimer's treatment.
ClinicalTrials.gov, NCT01843075 . Registration 30 April 2013.
This study investigates family carers experiences of inpatient mental health care for people with dementia. A mental health inpatient admission for a person with dementia is usually considered when a ...person is distressed and this distress leads to behaviours that are assessed to be risky for the person or others.
Participants included seven family carers whose relative with dementia had been cared for within a mental health ward in the United Kingdom UK within the last 5 years. Interviews were used to explore the circumstances that led to the admission, expectations of mental health care, and perceptions of care during the admission and support received by family carers.
Participants described their distress at the time of admission and how the process of admission sometimes added to their distress. Carers often felt excluded from their relatives care in hospital and many felt a loss of their rights. Participants felt that the mental health admission had a negative impact on their relative with dementia. Mental health law and legislation was difficult to navigate and carers were concerned about how much knowledge and understanding of dementia staff have.
Findings suggest that family carers may benefit from targeted support during their relatives admission. Mental health wards could do more to recognise the expertise in care and knowledge of the person with dementia of family carers and involve them in planning care. More research is needed to explore the experiences and outcomes of people with dementia during such admissions.
Aims and method Dementia in-patient units (DIU) are mental health wards that care for people living with dementia (PLWD) whose symptoms are causing severe distress or potential risk. DIUs look after ...some of the most vulnerable and unwell people in society, yet they are environments that are underresearched: a recent systematic review revealed only 36 articles worldwide relating to DIUs. To better understand research priorities in DIUs, we undertook a two-round online Delphi survey of PLWD with experience of DIUs, their carers and professionals who work in DIUs. Results Ten research priorities were described and ranked. The top three were how to use non-pharmacological techniques to manage non-cognitive symptoms of dementia, supporting families and better understanding of how to discharge PLWD safely and healthily. Clinical implications This is the first Delphi consensus to describe DIU research priorities. This paper will help researchers focus on the areas that matter most to people who use DIUs.
People with dementia (PWD) are vulnerable to abrupt changes to daily routines. The lockdown enforced on the 23rd of March 2020 in the UK to contain the expansion of the COVID-19 pandemic limited ...opportunities for PWD to access healthcare services and socialise. The SOLITUDE study explored the potential long-term effects of lockdown on PWD's symptoms and carers' burden.
Forty-five carers and 36 PWD completed a telephone-based assessment at recruitment (T0) and after 3 (T1) and 6 months (T2). PWD completed measures validated for telephonic evaluations of cognition and depression. Carers completed questionnaires on their burden and on PWD's health and answered a customised interview on symptom changes observed in the initial months of lockdown. Longitudinal changes were investigated for all outcome variables with repeated-measures models. Additional
multiple regression analyses were carried out to investigate whether several objective factors (i.e., demographics and time under social restrictions) and carer-reported symptom changes observed following lockdown before T0 were associated with all outcomes at T0.
No significant changes were observed in any outcomes over the 6 months of observations. However,
analyses showed that the length of social isolation before T0 was negatively correlated with episodic and semantic memory performance at T0. Carers reporting worsening of neuropsychiatric symptoms and faster disease progression in PWD also reported higher burden. Moreover, carer-reported worsening of cognitive symptoms was associated with poorer semantic memory at T0.
PWD's symptoms and carers' burden remained stable over 6 months of observation. However, the amount of time spent under social restrictions before T0 appears to have had a significant detrimental impact on cognitive performance of patients. In fact, carer-reported cognitive decline during social isolation was consistent with the finding of poorer semantic memory, a domain sensitive to progression in Alzheimer's disease. Therefore, the initial stricter period of social isolation had greater detrimental impact on patients and their carers, followed then by a plateau. Future interventions may be designed to maintain an optimal level of social and cognitive engagement for PWD in challenging times, to prevent abrupt worsening of symptoms and associated detrimental consequences on patients' carers.
Increasing attention is being given to the analysis of large health datasets to derive new clinical decision support systems (CDSS). However, few data-driven CDSS are being adopted into clinical ...practice. Trust in these tools is believed to be fundamental for acceptance and uptake but to date little attention has been given to defining or evaluating trust in clinical settings.
A scoping review was conducted to explore how and where acceptability and trustworthiness of data-driven CDSS have been assessed from the health professional’s perspective.
Medline, Embase, PsycInfo, Web of Science, Scopus, ACM Digital, IEEE Xplore and Google Scholar were searched in March 2022 using terms expanded from: “data-driven” AND “clinical decision support” AND “acceptability”. Included studies focused on healthcare practitioner-facing data-driven CDSS, relating directly to clinical care. They included trust or a proxy as an outcome, or in the discussion. The preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) is followed in the reporting of this review.
3291 papers were screened, with 85 primary research studies eligible for inclusion. Studies covered a diverse range of clinical specialisms and intended contexts, but hypothetical systems (24) outnumbered those in clinical use (18). Twenty-five studies measured trust, via a wide variety of quantitative, qualitative and mixed methods. A further 24 discussed themes of trust without it being explicitly evaluated, and from these, themes of transparency, explainability, and supporting evidence were identified as factors influencing healthcare practitioner trust in data-driven CDSS.
There is a growing body of research on data-driven CDSS, but few studies have explored stakeholder perceptions in depth, with limited focused research on trustworthiness.
Further research on healthcare practitioner acceptance, including requirements for transparency and explainability, should inform clinical implementation.
to inform development of a core outcome set, we evaluated outcomes, definitions, measures and measurement time points in clinical trials of interventions to prevent and/or treat delirium in older ...adults resident in long-term care (LTC).
we searched electronic databases, systematic review repositories and trial registries (1980 to 10 December 2021).
we included randomised, quasi-randomised and non-randomised intervention studies. We extracted data on study characteristics, outcomes and measurement features. We assessed outcome reporting quality using the MOMENT study scoring system. We categorised outcomes using the Core Outcome Measures in Effectiveness Trials taxonomy.
we identified 18 studies recruiting 5,639 participants. All evaluated non-pharmacological interventions; most (16 studies, 89%) addressed delirium prevention. We identified 12 delirium-specific outcomes (mean SD 2.4 1.5 per study), of which delirium incidence (14 studies, 78%) and severity (6 studies, 33%) were most common. We found heterogeneity in description of outcomes and measurement time points. The Confusion Assessment Method (three versions) was the most common measure used to ascertain delirium incidence (7 of 14 studies, 50%). We identified 25 non-delirium specific outcomes (mean SD 4.0 2.3 per study), with hospital admission the most commonly reported (9 studies, 50%).
we identified few studies of interventions for the prevention or treatment of delirium in older adults resident in LTC. These studies were heterogeneous in the outcomes reported and measures used. These data inform the consensus-building stage of a core outcome set.
Background
Public health restrictions due to the COVID‐19 (SARS CoV‐2) pandemic have disproportionately affected informal caregivers of people living with long term health conditions. We aimed to ...explore levels of care burden, loneliness, and social isolation among caregivers of people with enduring physical and brain health conditions in English‐speaking regions worldwide, by investigating outcomes before and during the COVID‐19 pandemic.
Methods
A cross‐sectional anonymous online survey data from 2287 English‐speaking caregivers of people with long term health conditions from four English‐speaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID‐19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden.
Results
Compared to pre‐pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care).
Conclusions
Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for the significant additional burden of care, loneliness, and isolation resulting from pandemic‐related restrictions.
Key points
This study highlights the significant negative impact that COVID‐19‐related restrictions have had on informal caregivers of people with enduring health conditions in four English speaking regions, globally.
Heightened levels of burden, loneliness, and social isolation occurred during the pandemic compared to pre‐pandemic in caregivers of people with enduring physical and brain health or physical health conditions.
The increase in burden in caregivers of people with brain health conditions was associated with caregiver factors (including gender, emotional loneliness, and increase in social isolation) and pandemic‐related external factors, such as cohabitation with the care recipient and the impact of COVID‐19‐related restrictions on the ability to provide care.
These findings have implications for policy development and healthcare interventions to target care circumstances and psychosocial outcomes of informal caregivers and ensure their equitable access to social support, taking into consideration pandemic‐related changes.
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