Dr Theopisti (Theti) Chrysanthaki

Despite strong support for the provision of memory assessment services (MASs) in England and other countries, their effectiveness in improving patient outcomes is uncertain. We aimed to describe change in patients' health-related quality of life (HRQL) 6 months after referral to MASs and to examine associations with patient characteristics and use of postdiagnostic interventions. Data from 883 patients referred to 69 MASs and their informal caregivers (n=569) were collected at referral and 6 months later. Multivariable linear regression was used to examine associations of change in HRQL (DEMQOL, DEMQOL-Proxy) with patient characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) and use of postdiagnostic interventions (antidementia medications and nonpharmacological therapies). Mean HRQL improved, irrespective of diagnosis: self-reported HRQL increased 3.4 points (95% CI, 2.7-4.1) and proxy-reported HRQL 1.3 points (95% CI, 0.5-2.1). HRQL change was not associated with any of the patient characteristics studied. Patients with dementia (54%) receiving antidementia drugs reported greater improvement in their HRQL but those using nonpharmacological therapies reported less improvement compared with those note receiving therapy. HRQL improved in the first 6 months after referral to MASs. Research is needed to determine longer term sustainability of the benefits and the cost-effectiveness of MASs.

Abstract Background The effectiveness and efficiency of memory assessment services (MASs) is unknown. Our aim was to determine if a typology can be constructed, based on shared structural and process characteristics, as a basis for a non-randomized evaluation of their effectiveness and cost-effectiveness. Methods Survey of random sample of 73 MASs in 2015; comparison of characteristics and investigation of inter-correlation. Results It was not possible to group characteristics to form the basis of a typology of MASs. However, there was considerable variation in staff numbers (20-fold), new patients per whole-time equivalent (WTE) staff (20-fold), skill mix and the nurse:doctor ratio (1–10). The operational performance also varied: first appointments (50–120 minutes); time for first follow-up (2–12 weeks); frequency of follow-up in first year (1–5). These differences were not associated with the number of new patients per WTE staff or the accreditation status of the MAS. Post diagnosis, all MASs provided pharmacological treatment but the availability of non-pharmacological support varied, with half providing none or only one intervention while others providing four or more. Conclusions In the absence of any clear typology, evaluation of MASs will need to focus on the impact of individual structural and process characteristics on outcomes.

Since 2006 a series of government sponsored initiatives in the United Kingdom have sought to increase the adoption of remote care – telehealth and telecare. These aim to address the increased demand on health and social care services caused by an ageing population and rise in the number of people with long term chronic conditions. The scale of activity, including the world’s largest randomised controlled trial, have made the UK a test bed for learning about the potential of remote care, as well as the challenges in deploying it as a mainstream part of health and social care. The chapter discusses the scope of this activity and the lessons that can be learnt.

Abstract Objective Recent research indicates considerable heterogeneity in the provision of memory assessment services (MAS). However, little is known on the extent of variation in the costs of the services MAS provide. We investigated the costs of supporting patients with suspected dementia, including assessment and support over the following 6 months. Methods Clinic costs were estimated on the basis of an organisational survey reporting staff roll, grade and activities. Costs of primary health and social care were estimated from questionnaire data reported by carers of patients at baseline, 3 and 6 months after referral. Results Mean monthly staff costs at MAS were £73 000. Imaging at assessment costs an additional £3500 per month. Monthly clinic cost per new patient assessed varied from £320 to £5400 across clinics. Additional primary health and social care costs of £130–220 a month between baseline and 6 months were reported by carers. Costs of pharmacological and non-pharmacological treatments reported by carers were small. Informal care costs dwarfed health and social care costs when valued at a modest unit cost. The overall mean cost of supporting a patient for 6 months varied from £1600 to £2500 dependent on assumptions regarding the proportion of MAS intervention and review costs accrued at 6 months. Conclusions There is considerable variation in the intensity and associated costs of services provided by MAS. Further research should ascertain to what extent such variation is associated with differences in patient outcomes.

This paper presents managerial attempts at implementing telehealthcare. Our longitudinal, ethnographic case studies document both successful and failed implementations across five health and social care organisations in England. We draw on theories of organisational identity, sensemaking and sensegiving to highlight how managerial organisational identities can inhibit the uptake of digital health technologies. Managers who strongly identified with their current role at work felt threatened by the intended change; a telehealthcare mode of care delivery. When a strongly identified workforce agrees with this assessment, managerial and employee sensemaking and sensegiving coalesce, forming a united front of resistance that prevents further adoption of the innovation.

Pioneering advances have been made in Internet of Things technologies (IoT) in healthcare. This article describes the development and testing of a bespoke IoT system for dementia care. TIHM for dementia is part of the NHS England National Test Bed Programme and has been trailing the deployment of network enabled devices combined with artificial intelligence to improve outcomes for people with dementia and their carers. TIHM uses machine learning and complex algorithms to detect and predict early signs of ill health. The premise is if changes in a person’s health or routine can be identified early on, support can be targeted at the point of need to prevent the development of more serious complications.

Background Despite sexual expression being recognised as a fundamental human need, sexuality in old age is often ignored and frequently misunderstood, with residents with dementia in a nursing home often viewed as asexual or incapable of being sexually active. Objectives The current study aims to understand the views held by nursing care home staff towards dementia and sexuality and explore the roles they may adopt whilst responding and managing sexual needs and expression for residents with dementia. Methods Face to face, in-depth, semi structured interviews were conducted with eight staff members working in two nursing homes in Greater London, United Kingdom. Data were analysed using Interpretative Phenomenological Analysis. Results The findings suggest that representations of sexuality in dementia held by nursing home staff ranged from the perception that sexual expression in old age was part of human nature and a basic human right to others that proposed that with the loss of memory, people with dementia may also experience loss of interest in sexuality and intimacy. Based on the representation of sexuality held (personhood versus biomedical model), nursing home staff adopted a role or a combination of roles (a facilitator, an informant, a distractor, an empathiser, a safeguarder) that legitimised past and anticipated responses in managing sexual expression in the nursing home setting. Nursing home staff’s responses varied depending on the severity of the condition, level of involvement of the resident’s family and their own personal views on their duty of care, old age, sexuality and dementia. Conclusion The simplified binary labelling and classification of sexual behaviour in dementia as appropriate or inappropriate often applied in institutional settings, fails to account for complex factors that may influence staff’s decisions on the ethical dilemmas raised by dementia. A role based continuum approach could help staff move away from rigid binary judgments and train them to adopt formal carer roles that promote a more contextualised rights based approach in the provision of dementia care.

National policy in England is to encourage referral of people with suspected dementia to Memory Assessment Services (MAS). However, little is known about the characteristics of new referrals, which limits our capacity to evaluate these services. The objectives were to: describe the characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) of referred patients, and examine the relationships between these characteristics and cognitive function (tertiles of Mini-Mental State Examination score) and health-related quality of life (HRQL) (DEMQOL, DEMQOL-Proxy). We used multivariable regression methods to analyze data from 1420 patients from 73 MAS, and their lay carers (n=1020). The mean age of patients was 78 years; 42% had cognitive function equivalent to Mini-Mental State Examination

Digital stories are short personal films made up of a series of still images with voiceover, music and text. The technical barriers to creating such stories are falling with the use of mobile apps which make it easy to assemble story elements as audiophoto narratives on a smartphone or tablet. In this case study, we explored the potential of mobile digital storytelling in a care home context. It was used for four weeks as form of multimedia communication between formal and informal carers inside and outside the home, and a care home resident suffering from dementia. The home was located in São Carlos, Brazil as part of a larger international project called Time Matters (UK and Brazil), in which Time stands for ‘This is me’. Fifteen digital stories were made by participants in the trial, which is about one for every visit of the researchers to the care home. Stories focused mainly on the resident; capturing aspects of everyday life discussed in Visit conversations (4), documenting Social events (3) inside or outside the home, recording Therapy sessions (3) with the resident or Health reports (3) by professional carers, and forming Media albums (2) of the residents’ art or life. In general, the technology was most useful for facilitating richer conversations with the resident and other participants, and stimulating greater expressivity and creativity in the resident herself. The desire to document the resident’s current life and interests in the home for later reminiscence by their family, stands in contrast to conventional reminiscence therapy and related digital systems. These use media artefacts to stimulate reminiscence of residents’ past life outside the home.

Abstract There are calls for widespread scaling up of remote care – ‘telehealth’ and ‘telecare’. These are driven by an ageing population, increasing numbers of people with chronic conditions and constrained resources available for health and social services. This report is concerned with the supply-side of remote care and its ability to meet anticipated future needs. This is an important, but overlooked, question in the debate, which usually concentrates on demand-side issues such as the fragmentation of the health and social care system, or commissioning and funding issues.

ABSTRACT:

Background: Dementia has become a major public health issue due to its high prevalence and serious consequences. In this context, the use of Information and Communication Technologies (ICT) could provide support for communication between people living with dementia and their formal and informal caregivers, both locally and remotely. More specifically, multimedia communication in the form of digital story narratives might improve communication in such care networks through richer forms of expression of life experiences and care activities. Objective: To explore caregiver perspectives on the communication issues and requirements involved in caring for people with dementia at home, and their reactions to digital storytelling technology as a possible intervention. Method: Semi-structured interviews were carried out with ten community caregivers in a countryside town of Sao Paulo state, Brazil. Each involved discussion of communication issues, and feedback on a mobile digital storytelling app and associated stories. Results: Formal and informal caregivers were both concerned about how to understand and to be understood by the people they were caring for, and saw value in digital storytelling as a new kind of assistive communication tool for more visual communication. Caregivers also wanted better ways of capturing or stimulating memories and conversation in people with dementia and saw digital stories as an extension of current social media systems for sharing life experiences. Conclusion: One of the greatest challenges in caring for people with dementia is communication, especially to understand their feelings, frustrations, and language. Another major challenge is finding time to go beyond caring for their basic activities of daily living (ADL) to enhance their quality of life through more meaningful conversations and experiences. Requirements for new digital storytelling technology were suggested for each of these challenges.

Policies can fail when frontline staff feel they have limited influence on policy implementation (powerlessness) or that policy has little or no personal meaning (meaninglessness) – they become alienated from the policy – but how does this alienation develop? In this article we ask whether policy alienation might be viewed as a process that develops over time: a process that ebbs and flows, interacting with the policy landscape as it shifts, rather than a psychological state. Feelings of alienation can be shared across groups of actors, as they collectively shift and initiate change. This study uses participant observation and interviews with front-line employees as they navigate a UK government policy introducing telehealthcare to improve health management of patients with chronic conditions. We find that: (i) cumulative misalignment between different policy implementation contexts allows policy alienation to develop over time; (ii) the shared experience of alienation in co-worker groups contributes to further misalignment; and (iii) front-line staff use their discretion to respond to policy alienation, which has the power to enhance or destroy policy implementation. We offer

Personal digital media such as photos, music and films play a pervasive part in contemporary life by helping us to remember the past, communicate with each other and represent our identity to others. In this chapter we explore the value of such media for supporting wellbeing in older age, drawing on concepts from literatures on art, reminiscence and music therapy. Theoretically we argue for a new category of assistive technologies involving media creation and consumption to enhance wellbeing. We propose a framework for understanding and designing such assistive media systems which highlights the interaction between media item, author and audience. This framework is then illustrated through early attempts to explore a new kind of digital story therapy for people with dementia in a residential care setting. We conclude with recommendations for the design of future ‘assistive media’ systems and experiences that might enhance not only the lives of people with dementia, but also those around them.