Dementia UK

Inquiries, National Health Service serious incident reviews and media reports identify people living with dementia at significant risk of experiencing restrictive practices during an unscheduled acute hospital admission. However, to date, this has not been the true focus of substantive empirical research. To explore the use of restrictive practices in the care of people living with dementia during an unscheduled acute hospital admission. To identify evidence-based (and alternative) strategies in the care of people living with dementia that are achievable, safe and transferrable. An ethnographic study (observation, ethnographic interviews, documentary analysis) in the symbolic interactionist research tradition, with the goal to deliver an in-depth empirically driven analysis of everyday acute care. This ethnography was carried out for 225 days over an 18-month period between 2023 and 2024. In total, nine wards were observed across six National Health Service trusts in England, covering six acute wards (assessment and older peoples care) and three mental health wards (specialist older people mental health). Sites were chosen for diversity of demographic, geographic and practice variables. One hundred and sixty-eight individuals consented to participate directly in this study, also contributing to 1116 ethnographic interviews. Our analysis identified a culture of containment within acute wards. The use of restrictive practice in the care of people living with dementia was an embedded aspect of routine ward care, within all shifts observed within acute wards, regardless of the ward, time of day and day of the week. Raised bedside rails, ward furniture and verbal commands were most frequently used, often quickly escalating to the use of enhanced observation, typically carried out at pace, to contain and restrict movement to the bedside. Recordable methods included the use of physical force and sedation. Our analysis demonstrates these apparently diverse range of practices cannot be understood in isolation but were utilised multiply in the care of individuals and cohorts of people living with dementia. Because their use was embedded within timetabled care, ward staff found defining and identifying restrictive interventions in their routine practices challenging, meaning these forms of restrictive practices were typically unrecognised and unrecorded. Staff experienced significant emotional impacts from using restrictive practices in patient care. We identified a range of practices to support the reduction of restrictive practice within the acute setting. These included engagement with people living with dementia, making full use of the activity resources available to the ward, and supporting people living with dementia to leave the bedside to walk within their bay or ward. The potential for the Hawthorne effect was considered within the study design with the duration of the observation period within each ward designed to minimise this. Post-admission follow-up interviews with people living with dementia and their family partners were not possible due to low number of family visitors across all ward settings during the observation period. Cultures of containment were embedded within routine organisation and delivery of care within acute wards, viewed as necessary for care delivery, required to increase patient safety, minimise risk of falls, absconding, or violence. Staff felt unable to practise in other ways for fear of risks to people living with dementia and reprisal. De-escalation approaches to reduce distress, as observed in appropriately resourced specialist units, are recommended over containment. Development and translation of findings into open access training and National Health Service organisational tools to support best practice and alternative approaches in the care of people living with dementia at ward level will be coproduced in collaboration with our patient and public involvement participants, Improvement Cymru, and Dementia UK. This study is registered as ISRCTN11797465. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR132903) and is published in full in Health and Social Care Delivery Research; Vol. 14, No. 7. See the NIHR Funding and Awards website for further award information.

IntroductionFrontotemporal lobar degeneration (FTLD) encompasses heterogeneous clinical syndrome within the frontotemporal spectrum, where clinicopathological associations may be misleading. This case series illustrates clinicopathological variability and mismatches.MethodsA retrospective case series was conducted within the brain donation program at the Golgi Cenci Foundation. Cases presenting at onset with a frontotemporal-spectrum phenotype, longitudinal clinical data, and post-mortem neuropathological characterization were included.ResultsFive cases (mean age at onset 65.4 years) were clinically diagnosed with major neurocognitive disorder due to frontotemporal dementia (FTD). Neuropathological examination revealed clinicopathological heterogeneity: two cases showed FTLD-TDP-A associated with GRN mutations, including a classic case and one with posterior (parieto-occipital) involvement; one non-fluent variant primary progressive aphasia (nfvPPA) case demonstrated FTLD-TDP-A with multiple co-pathologies; one semantic-variant-like case was driven by high Alzheimer’s disease neuropathological changes; and one behavioral variant FTD-like case corresponded to frontal-variant Alzheimer’s disease (fvAD) with extensive mixed pathology, including Lewy body disease, LATE-NC, and vascular pathology.DiscussionFindings indicate that clinical phenotypes are more influenced by the anatomical distribution of pathology than by the specific molecular substrate. Frequent coexisting proteinopathies and asymmetric involvement contribute to phenotypic variability, reinforcing the role of neuropathological examination of both hemispheres for accurate clinicopathological correlations and definitive etiological diagnosis.

Abstract Background: With myelosuppressive chemotherapy still extensively used and many antibody drug conjugates showing similar cytotoxic properties, complete blood counts (CBCs) continue to be a cornerstone of clinical decision making in cancer therapy. Historically, the need for in-clinic testing has presented logistical challenges for patients, reduced the efficiency of service delivery and delayed identification of complications such as febrile neutropenia, anemia and thrombocytopenia. To address this, the world’s first CBC analyzer has been developed for accessible use by cancer patients in the home (Liberty). The analyzer enables convenient patient self-testing from a single drop of capillary blood (16µL) through use of microfluidic consumables, centrifugation and fluorescent spectroscopy. The results are shared remotely to healthcare professional dashboards directly from the analyzer, providing the opportunity for more convenient and frequent CBC monitoring. Research Population and Methods: A cohort of breast cancer patients receiving systemic anti-cancer therapy (SACT) were selected for a qualitative sub-study from a larger multi-center, multi-indication comparator study evaluating at-home self-testing with Liberty versus standard of care venous blood testing at a health center. The primary endpoint was preference for at-home self-testing with Liberty versus standard of care venous blood testing at a health center. The secondary endpoint was healthcare resource utilisation across both monitoring pathways. Exploratory endpoints included patient experience of training, self-testing, ease of use and recommendation to other patients. Primary and exploratory endpoints were determined via questionnaires issued after at least two tests had been completed. Questionnaires asked participants their preference for self-testing compared to standard testing and to rate on a scale of 1-5, their experience of training, self-testing, acceptability of testing cadence, sense of control, perceived time savings, overall patient experience, likelihood to recommend Liberty to other patients and any additional comments. Results: Patients receiving a range of SACT (paclitaxel, ribociclib, abemaciclib, trastuzumab deruxtecan, sacituzumab govitecan) were recruited over 9 months to this sub-study (n=10). The mean score on participant preference for self-testing with Liberty versus the standard of care was 4.2/5 with 5 representing a strong preference for self-testing with Liberty (median 4.5). Self-testing with Liberty was shown to reduce the need for routine in-clinic blood tests by 96%. Scored out of a maximum of 5, the mean patient score for patient training was 5 (median: 5), experience of self-testing with Liberty 4.9 (median: 5), perceived sense of control 4 (median: 4.5), willingness to keep testing at the defined cadence 4.6 (median: 5), perceived time savings 4.6 (median: 5), overall experience 4.6 (median: 5) and likelihood to recommend Liberty to other patients was 4.9 (median: 5). No adverse events were reported. Conclusions: Liberty was the preferred pathway for blood monitoring and may help to reduce the significant burden faced by patients and healthcare systems for cancer treatment. Subsequent real-world usage of Liberty has demonstrated reductions of up to 91% of routine in-clinic blood tests and shown its utility in avoiding unnecessary emergency room attendance. Citation Format: S. Howell, S. Taylor, D. Ramanujam, T. Basey-Fisher, A. Brufsky. At-home complete blood count monitoring: enhancing care pathways and improving patient experience [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2025; 2025 Dec 9-12; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2026;32(4 Suppl):Abstract nr PS1-05-05.

Neurological diseases, including Alzheimer's disease, depression, and Parkinson's disease, pose a growing public health challenge. Dietary patterns, particularly the Mediterranean diet (MD), have been proposed as modifiable factors for prevention. The aim of this systematic review and meta-analysis was to evaluate the association between adherence to the MD and the risk or progression of neurological conditions. This review was conducted in accordance with PRISMA 2020 and MOOSE guidelines. A comprehensive search of PubMed/MEDLINE, Scopus, Embase, and Cochrane Library was performed up to February 28, 2024. Study quality was assessed using the Newcastle-Ottawa Scale, and the certainty of evidence was evaluated with the NUTRIGRADE approach. Pooled effect sizes were computed using a random-effects model and expressed as risk ratios (RR), hazard ratios, or odds ratios, as appropriate. Forty-five studies involving over 730 000 participants were included. Higher MD adherence was associated with reduced risk or prevalence of Alzheimer's disease (odds ratios = 0.92), mild cognitive impairment (RR = 0.93), depression (RR = 0.96), and Parkinson's disease (RR = 0.90), with moderate certainty of evidence. Limited evidence suggested reduced anxiety and lower mortality among patients with Alzheimer's disease. No significant associations were observed for dementia prevalence or progression from mild cognitive impairment to dementia. Greater adherence to the MD is consistently associated with a lower risk of several neurological and mental health conditions. These findings support the promotion of MD-based dietary patterns in clinical and public health strategies to prevent cognitive decline and enhance healthy aging.

In long-term dementia care, simulative technology such as robotic pets and virtual reality is increasingly used to support psychosocial well-being. While their ethical use has been debated in the literature, the voices of stakeholders, including people living with dementia, family members and care staff have not been meaningfully represented. This protocol paper describes a two-phase qualitative study that aims to identify stakeholders’ perceptions of ethical issues relating to simulative technology use and ways to navigate these issues in long-term care contexts. In Phase 1, a constructivist grounded theory approach will be used to explore stakeholders’ perceptions of ethical issues; in-depth interviews or focus group discussions will be conducted with people living with dementia, their family members, long-term care staff, and managers. Discussions will be audio-recorded, transcribed verbatim, and analyzed. In Phase 2, a virtual Nominal Group Technique will be used to explore means in which ethical dilemmas can be navigated. Participants will include stakeholders as described in Phase 1, along with ethics experts and decision-makers. Participants will review the ethical issues and ways to navigate dilemmas as identified in Phase 1, suggest additional issues and strategies to navigate dilemmas, and a mixed-methods analysis will be applied to prioritize strategies, and a qualitative content analysis will be used to analyze free-text comments to identify rationales behind prioritization. The findings will inform the development of a resource guide that integrates the lived experiences and expert knowledge to support ethically informed technology use in long-term dementia care.

BackgroundAs the population of people living with dementia (PLWD) increases, the need for scalable, high‐quality, and personalised patient care will increase as well. A key consideration during dementia care planning is a patient's ability to perform activities of daily living (ADL), as this not only determines the level of care they require, but also directly impacts their independence and overall quality of life. However, despite considerable variability in trajectories of functional decline across PLWD, clinicians currently rely on experience and generalised statistics to inform care decisions. Thus, there is a need for more tailored approaches that predict how each patient's functional abilities will change over time. A data‐driven decision support tool could address this gap by anticipating care needs, improving resource allocation, and supporting patient autonomy and quality of life.MethodLongitudinal, observational data from 118 PLWD (761 assessments total) including clinical assessment, demographic, and medical history information was used. Clinical assessments included the Mini‐Mental State Exam (MMSE), Alzheimer's Disease Assessment Scale‐Cognitive Subscale (ADAS‐Cog), and Bristol Activities of Daily Living questionnaire (BADL), and comorbidities were classified according to ICD‐10 chapters. A regression model was developed to predict functional decline over a 12‐month period, as measured by BADL, in PLWD. To support explainability and use of this model in clinical settings, a digital consultation tool was developed.ResultOn average, participants declined at a rate of 4.2 (SD 5.7) BADL score‐points per year. The best‐performing machine learning model was a ridge regression model that predicted BADL scores 12 months in the future with a mean absolute error (MAE) of 4.0 (SD 0.4). Ability to prepare food and drink, presence of a cardiovascular or oncological comorbidity, and language abilities at baseline were found to be most predictive of 12‐month functional decline in PLWD.ConclusionOur model, developed using readily available clinical features, is well‐suited for implementation into UK memory clinics. A digital consultation tool was designed to enhance their clinical utility. Given the critical importance of predicting a person's future functional ability during care planning, this tool has the potential to augment care pathways by providing personalised prognostic insights into future care needs.

BackgroundDespite a proliferation of computerised and remote monitoring assessments offering opportunities to provide valuable data to researchers and clinicians, there are significant concerns about feasibility of such tools within a clinical population. A patient‐centred design is essential to ensure these tools are effective and well tolerated by a memory clinic population, whilst producing high quality data. Our aim was to integrate Patient and Public Involvement (PPI) systematically in the development of a remote monitoring study for patients of the Oxford Brain Health Clinic (OBHC; O'Donoghue et al., 2023).MethodA comprehensive approach was taken to engage people living with dementia and mild cognitive impairment, their relatives, as well as volunteers interested in dementia research. This was achieved through a workshop and survey to explore the relevance of the research and potential assessments, by user‐testing methods to refine study design, by co‐producing the study aims and documents with a lay member, and through regular consultations with a PPI panel to review progress and practical considerations (Table 1).ResultPPI activities were instrumental in shaping the research, with two key themes emerging: relevance of outcome measures and choice. The need for clear, relevant, prognostic information was stressed, alongside high‐priority outcome measures such as daily activity, memory, relationships, and care needs. Contributors highlighted the importance of choice in the types of assessments, the means of participation, and to what extent there should be relative involvement. Contributors suggested improvements to digital tasks including increasing device compatibility and the need for analogue alternatives. This resulted in a study design which maximises patient/relative choice while collecting data relating to high‐priority outcome measures. This study design was found by our PPI consultants to be generally acceptable and feasible.ConclusionBy integrating PPI, we have created a patient‐centred remote monitoring study that is reflective of the needs and preferences of patients and their relatives. Although embedding PPI requires time and resources, it is invaluable for studies involving digital assessments within clinical populations and significantly shaped this research, challenged existing assumptions, and led to more acceptable outcomes, which should ultimately result in greater inclusion.

Abstract Background Dementia is preventable and deferrable yet remains a major cause of disability and dependency and the seventh leading cause of death worldwide. The Lancet Commission on dementia published a report in July 2024, identifying 14 modifiable dementia risk factors and estimating a 45% reduction in dementia cases with risk factor elimination. The aim of this study is to assess the prevalence of modifiable dementia risk factors, providing crucial context for the delivery of dementia prevention in Ireland. Methods This is a longitudinal study using data from three waves of the Irish Longitudinal Study on Ageing (TILDA) to quantify the prevalence of modifiable dementia risk factors in Ireland over a 10·93 (±0·37) year follow-up. TILDA is a population-based prospective cohort study, representative of community-dwelling adults aged 50 years and older, living in Ireland. Data were analysed using Stata 15·1 applying inverse probability weighting. Results 8,171, 6,615 and 4,318 participants were included in wave one, three and six analyses. 70·6%, 61·1% and 54·2% of the population had 4 or more modifiable risk factors for dementia at consecutive waves amounting to over 500,000 people with 4 or more modifiable risk factors for dementia on weighted population analysis at wave six.77% of those with severe decline in cognitive performance during follow-up had 4 or more risk factors at baseline. An estimated 32,480 cases of severe decline in cognitive performance during follow-up were potentially preventable if risk factors were eliminated. Conclusion This study identifies a high prevalence of modifiable dementia risk factors in Ireland and highlights the need for public education on the concept of brain health and the development of a clinical framework focused on delivering on the opportunity of dementia prevention. Preventing and delaying dementia onset has the potential to compress morbidity and increase healthy lifespan in older age.

a:2:{s:4:"lang";s:2:"en";s:7:"content";s:1606:"<h3></h3> Systemic infection such as urinary tract infection (UTI) causes delirium and faster cognitive decline in patients with Alzheimer’s disease (AD). Changes in brain cytokine levels in response to systemic infection influence amyloid-β/tau and glial pathology. Here we investigate the relationships between blood cytokines and neurodegenerative biomarkers, UTIs and disease progression in AD. We analysed blood samples from 84 AD patients and 29 elderly controls using two platforms: OLINK®Target-48 Inflammation and ultrasensitive single-molecule array(Simoa®) assay. We stratified AD patients according to the presence/absence of chronic UTIs confirmed on longitudinal urine sampling for urine microscopy and culture. AD patients had elevated NfL, GFAP, p-tau217, and a range of inflammatory proteins. NfL, a marker of axonal injury, correlated with multiple cytokines, including IL-17A, which was also associated with ADAS-Cog scores in mixed-effect models analysis. IL-17A was elevated in AD patients with both, acute and chronic UTIs. The presence of chronic UTIs was associated with higher GFAP, and faster rates of cognitive decline despite matching for age and disease stage (mean ADAS-Cog change 10.6points/year versus 4.81points/year respectively, t=2.31, p&lt;0.05). AD mouse models support the mechanistic link between IL-17A accumulation, cognitive deficits and neurodegeneration. These findings highlight systemic infection as an important contributor to dementia, requiring early identification and treatment in this vulnerable population. m.a.kolanko{at}gmail.com ";}

Abstract Study Objectives Our study introduced the 2023 UK Biobank sleep questionnaire and described variation in sleep health dimensions and prevalence of disordered sleep. Methods A questionnaire comprising validated measures and bespoke items was developed to capture key self-reported domains of sleep health and symptoms of sleep disorders. We quantified cohort prevalence of operationally defined sleep disorders and assessed patterning of sleep health dimensions across key sociodemographic and clinically relevant variables. Results 327,752 individuals were invited of whom 185,056 (56.5%) completed at least one module and were included in the analysis. Respondents were predominately from a White ethnic background (96.8%), had a mean age of 69.9 (SD, 7.5) years, 57.9% were female, and 25.5% were in employment. Compared to non-respondents, respondents were more likely to be female, tended to be better educated, healthier, and exhibit lower levels of socioeconomic deprivation, although baseline sleep variables were similar between respondents and non-respondents. Around 40% of respondents reported sleep duration less than 7 hours and 49% reported poor sleep quality (Pittsburgh Sleep Quality Index &gt; 5). Approximately one-quarter (25.2%) met criteria for at least one operationally defined sleep disorder, with insomnia being the most common (14.4%) followed by obstructive sleep apnoea (8.0%), restless legs syndrome (4.1%), and frequent nightmares (3.7%). Sleep disorders were associated with higher levels of anxiety, depression, fatigue, and cognitive complaints. Conclusions Poor sleep quality and operationally defined sleep disorders are common in the UK Biobank cohort. Sleep questionnaire data can now be integrated with a range of biomedical information to advance understanding of sleep. Statement of significance A comprehensive sleep questionnaire was introduced to the UK Biobank, with over 185,000 participants providing data. Overall, respondents reported relatively poor sleep quality; 40% reported sleep duration less than 7 hours, and 25% met criteria for at least one sleep disorder. Enhanced assessment of sleep in UK Biobank now enables integration with extensive biomedical data, including genetic, wearable, imaging, lifestyle, biomarker, and electronic health record data, offering opportunities to investigate the biological and environmental factors that influence sleep and circadian systems, and their impact on health.