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Background: As the number of people with dementia increases, more families will be affected by the daily challenges of providing effective support, given its current incurable status. Once individuals are diagnosed with dementia, the earlier they access support, the more effective the outcome. However, once people receive a diagnosis, how they make sense of their dementia can impact on their help-seeking intentions. Exploring the illness beliefs of people with dementia and their caregivers and this relationship to help seeking may identify how best to facilitate early support. Aims: To systematically obtain and critically review relevant studies on the relationship between illness perceptions and help seeking of people with dementia and their caregivers. Method: A systematic search was conducted and included both quantitative and qualitative studies. The initial search was conducted in October 2018, with an adjacent search conducted in April 2020. Findings: A total of 14 articles met the inclusion criteria. Conceptually, the studies examined the association of illness perceptions and help-seeking post-diagnosis and revealed that people living with dementia and their caregivers sought help when symptoms became severe. Components of illness perceptions revealed that lack of knowledge, cultural beliefs, complexity of the healthcare system, threat to independence and acceptance were identified as major factors for delaying help seeking. Conclusion: Although research interest in the area of illness perceptions and their impact on help seeking for dementia is increasing, further work is needed to understand this area, particularly regarding the influence of the relationship between the person with dementia and their caregiver.

Accelerometry data has been widely used to measure activity and the circadian rhythm of individuals across the health sciences, in particular with people with advanced dementia. Modern accelerometers can record continuous observations on a single individual for several days at a sampling frequency of the order of one hertz. Such rich and lengthy data sets provide new opportunities for statistical insight, but also pose challenges in selecting from a wide range of possible summary statistics, and how the calculation of such statistics should be optimally tuned and implemented. In this paper, we build on existing approaches, as well as propose new summary statistics, and detail how these should be implemented with high frequency accelerometry data. We test and validate our methods on an observed data set from 26 recordings from individuals with advanced dementia and 14 recordings from individuals without dementia. We study four metrics: Interdaily stability (IS), intradaily variability (IV), the scaling exponent from detrended fluctuation analysis (DFA), and a novel nonparametric estimator which we call the proportion of variance (PoV), which calculates the strength of the circadian rhythm using spectral density estimation. We perform a detailed analysis indicating how the time series should be optimally subsampled to calculate IV, and recommend a subsampling rate of approximately 5 minutes for the dataset that has been studied. In addition, we propose the use of the DFA scaling exponent separately for daytime and nighttime, to further separate effects between individuals. We compare the relationships between all these methods and show that they effectively capture different features of the time series., Competing Interests: The authors have declared that no competing interests exist.

Introduction: Many people living with advanced dementia live and die in nursing care homes. The quality of life, care and dying experienced by these people is variable. Namaste Care is a multisensory programme of care developed for people with advanced dementia. While there is emerging evidence that Namaste Care may be beneficial for people with dementia, there is a need to conduct a feasibility study to establish the optimum way of delivering this complex intervention and whether benefits can be demonstrated in end-of-life care, for individuals and service delivery. The aim of the study is to ascertain the feasibility of conducting a full trial of the Namaste Care intervention., Methods and Analysis: A feasibility study, comprising a parallel, two-arm, multicentre cluster controlled randomised trial with embedded process and economic evaluation. Nursing care homes (total of eight) who deliver care to those with advanced dementia will be randomly allocated to intervention (delivered at nursing care home level) or control. Three participant groups will be recruited: residents with advanced dementia, informal carers of a participating resident and nursing care home staff. Data will be collected for 6 months. Feasibility objectives concern the recruitment and sampling of nursing homes, residents, informal carers and staff; the selection and timing of primary (quality of dying and quality of life) and secondary clinical outcome measures (person centredness, symptom presence, agitation, quality of life, resource use and costs and residents' activity monitored using actigraphy). Acceptability, fidelity and sustainability of the intervention will be assessed using semistructured interviews with staff and informal carers., Ethics and Dissemination: This protocol has been approved by NHS Wales Research Ethics Committee 5 (ref: 17/WA0378). Dissemination plans include working with a public involvement panel, through a website (http://www.namastetrial.org.uk), social media, academic and practice conferences and via peer reviewed publications., Trial Registration Number: ISRCTN14948133; Pre-results., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY. Published by BMJ.)