Alarm pendants and the technological shaping of older people's care: Between (intentional) help and (irrational) nuisance

Alarm pendant use among older people is often framed as one of the rational responses needed to alleviate the escalating costs of an aging population. This paper draws on qualitative data with older people and their carers to explore the effect that supplementing, and in some cases substituting, ‘traditional’ forms of care with this technology, has on the lives of its users. While advocates argue that alarm pendants can support independence and ‘aging in place’, our analysis focuses on how social relations both mediates the functions of this device and in turn are mediated by them. In this we draw upon key theories in Science and Technology Studies (STS) and George Ritzer's McDonaldization of Society Thesis, specifically his conception of the ‘irrationality of rationalization’, to illustrate how rational systems often produce unanticipated and adverse outcomes. Our research reveals that in the case of alarm pendants, these can include low levels of efficacy, increased work for older people and their carers and feelings of dehumanization. We conclude by discussing the capacity of older people to resist processes of McDonaldization and irrationalization in later life

The everyday use of assistive technology by people with dementia and their family carers: a qualitative study

Background: Assistive Technology (AT) has been suggested as a means by which people with dementia can be helped to live independently, while also leading to greater efficiencies in care. However little is known about how AT is being used by people with dementia and their carers in their daily routines. This paper reports on a qualitative study exploring the everyday use of AT by people with dementia and their families. Methods: The research employed a qualitative methodology. Semi structured interviews took place with 39 participants, 13 people with dementia and 26 carers. Key themes were identified using thematic analysis and the constant comparative method. Results: Three categories of AT use in everyday settings were identified; formal AT, accessed via social care services, ‘off the shelf AT' purchased privately, and ‘do it yourself' AT, everyday household products adapted by families to fulfil individual need in the absence of specific devices. Access to AT was driven by carers, with the majority of benefits being experienced by carers. Barriers to use included perceptions about AT cost; dilemmas about the best time to use AT; and a lack of information and support from formal health and social care services about how to access AT, where to source it and when and how it can be used. Conclusions: It has been argued that the ‘mixed economy' landscape, with private AT provision supplementing state provision of AT, is a key feature for the mainstreaming of AT services. Our data suggests that such a mixed economy is indeed taking place, with more participants using ‘off the shelf' and ‘DIY' AT purchased privately rather than via health and social care services. However this system has largely arisen due to an inability of formal care services to meet client needs. Such findings therefore raise questions about just who AT in its current provision is working for and whether a mixed market approach is the most appropriate provider model. Everyday technologies play an important role in supporting families with dementia to continue caring; further research is needed however to determine the most effective and person-centred models for future AT provision

Challenges for the cataract surgeon treating people with dementia: a qualitative study exploring anesthetic choices

Background: In light of the growing number of people with dementia and age-related cataract, as well as changing anesthetic practices for cataract surgery, this study aimed to explore the experiences of cataract surgeons in managing patients with dementia and making anesthetic decisions. Methods: This was a qualitative study using semistructured interviews with senior cataract surgeons from two centers in England. Fourteen surgeons were interviewed, and a thematic approach informed by grounded theory was used for the analysis. Results: Choice of anesthesia for people with dementia was a central theme arising from the data. Surgeons varied in their thresholds for using general anesthesia. Decisions about suitability for local anesthesia were limited by time constraints and generally made rapidly and based on instinct; dementia was not always apparent at the point of preassessment. Surgeons used a variety of topical, sub-Tenon’s, and sharp needle blocks for people with dementia. Surgeons discussed techniques to help patients tolerate local anesthesia, such as clear communication, a primary nurse, hand-holding, and support from an anesthetist. However, within our sample, some surgeons had had negative experiences of operating on people with dementia, where an incorrect judgment had been made that they could tolerate local anesthetic cataract surgery. Conclusion: This study highlights the differing practices of cataract surgeons when making anesthetic choices for people with dementia and the challenges they face. In order to avoid the situation of a patient with dementia becoming distressed during awake surgery, increased time at preassessment and anesthetic support may be beneficial

Coping with cognitive impairment in people with Parkinson’s disease and their carers: a qualitative study

Cognitive impairment is common in Parkinson’s disease (PD). However, the psychosocial impact of living and coping with PD and cognitive impairment in people with PD and their carers have not been explored. This paper draws on a qualitative study that explores the subjective impact of cognitive impairment on people with PD and their carers. Thirty-six one-to-one interviews were completed; people with PD were from three groups: normal cognition, mild cognitive impairment and dementia. Data collection and analysis were iterative and verbatim transcripts were analysed using thematic analysis. Themes were interpreted in consultation with coping and adaptation theory. The analysis revealed four main themes: threats to identity and role, pre-death grief and feelings of loss in carers, success and challenges to coping in people with PD, and problem focused coping and finding meaning in caring. Our data highlights how cognitive impairment can threaten an individual’s self-perception and their perceived role; the ostensible effects depended on the impact individual’s perceived cognitive impairment on their daily lives. For carers, cognitive impairment had a greater emotional impact compared to the physical symptoms of PD. The discussion that developed around protective factors provides possible opportunities for future interventions, such as psychological therapies to improve successful adjustment

Describing transitions in residential status over 10 years in the very old:Results from the Newcastle 85+ Study

BACKGROUND: the very old (aged ≥ 85) are the fastest growing subpopulation of many developed countries but little is known about how their place of residence changes over time. We investigated transitions in residential status in an inception cohort of 85-year-olds over 10 years. METHODS: data were drawn from the Newcastle 85+ Study, a population-based longitudinal study of individuals aged 85 in 2006 (i.e. born in 1921) and permanently registered with a Newcastle or North Tyneside general practice (n = 849). RESULTS: 76.3% lived in standard (non-supported) housing at baseline (age = 85) and few moved into a care home. The majority either remained in standard housing or died over the study period. A significant number who lived in standard housing had dependency and frailty at baseline. DISCUSSION: given the undersupply of care homes, and preference of older people to remain in their own homes as they age, the questions posed by this analysis are how to survive to 85 and remain in standard housing until the age of 85? And how, and by whom, are such a group being supported to remain at home? We need qualitative research to explore the informal-formal care networks of the very old

Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice

The association between multimorbidity and mobility disability-free life expectancy in adults aged 85 years and over:A modelling study in the Newcastle 85+ cohort

BACKGROUND: Mobility disability is predictive of further functional decline and can itself compromise older people’s capacity (and preference) to live independently. The world’s population is also ageing, and multimorbidity is the norm in those aged ≥85. What is unclear in this age group, is the influence of multimorbidity on (a) transitions in mobility disability and (b) mobility disability-free life expectancy (mobDFLE). METHODS AND FINDINGS: Using multistate modelling in an inception cohort of 714 85-year-olds followed over a 10-year period (aged 85 in 2006 to 95 in 2016), we investigated the association between increasing numbers of long-term conditions and (1) mobility disability incidence, (2) recovery from mobility disability and (3) death, and then explored how this shaped the remaining life expectancy free from mobility disability at age 85. Models were adjusted for age, sex, disease group count, BMI and education. We defined mobility disability based on participants’ self-reported ability to get around the house, go up and down stairs/steps, and walk at least 400 yards; participants were defined as having mobility disability if, for one or more these activities, they had any difficulty with them or could not perform them. Data were drawn from the Newcastle 85+ Study: a longitudinal population-based cohort study that recruited community-dwelling and institutionalised individuals from Newcastle upon Tyne and North Tyneside general practices. We observed that each additional disease was associated with a 16% increased risk of incident mobility disability (hazard ratio (HR) 1.16, 95% confidence interval (CI): 1.07 to 1.25, p < 0.001), a 26% decrease in the chance of recovery from this state (HR 0.74, 95% CI: 0.63 to 0.86, p < 0.001), and a 12% increased risk of death with mobility disability (HR: 1.12, 95% CI: 1.07- to .17, p < 0.001). This translated to reductions in mobDFLE with increasing numbers of long-term conditions. However, residual and unmeasured confounding cannot be excluded from these analyses, and there may have been unobserved transitions to/from mobility disability between interviews and prior to death. CONCLUSIONS: We suggest 2 implications from this work. (1) Our findings support calls for a greater focus on the prevention of multimorbidity as populations age. (2) As more time spent with mobility disability could potentially lead to greater care needs, maintaining independence with increasing age should also be a key focus for health/social care and reablement services

Personalisation, customisation and bricolage: how people with dementia and their families make assistive technology work for them

Assistive technologies (ATs) are being 'mainstreamed' within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers. Readily available household technologies were used in conjunction with and instead of AT to address diverse needs, replicating AT functions when doing so. Successful technology use was characterised by ‘bricolage’ or the non-conventional use of tools or methods to address local needs. Carers drove AT use by engaging creatively with both assistive and everyday technologies, however, carers were not routinely supported in their creative engagements with technology by statutory health or social care services, making bricolage a potentially frustrating and wasteful process. Bricolage provides a useful framework to understand how technologies are used in the everyday practice of dementia care, and how technology use can be supported within care. Rather than implementing standardised AT solutions, AT services and AT design in future should focus on how technologies can support more personalised, adaptive forms of care

Exploring and understanding the scope and value of the Parkinson’s nurse in the UK (The USP Project): a realist economic evaluation protocol

Introduction There are multiple configurations of specialist nurses working in the field of Parkinson’s. Parkinson’s Nurse Specialists (PNSs) are recognised as playing a pivotal role; however, there is little published evidence to demonstrate their effectiveness. Further evidence is needed to establish which aspects of the PNSs provide the greatest benefit to people with Parkinson’s and their families, and the cost-effectiveness of different models of care. Methods and analysis Realist approaches explain how and why programmes work (or not) through striving to answer the question: what works, for whom and under what circumstances. This research uses a realist evaluation and aims to integrate an economic analysis within the realist framework. We refer to this as ‘realist economic evaluation’. It comprises four phases: (1) developing resource-sensitive initial programme theories (IPTs) using surveys to gain a better understanding of the role and impact (costs and benefits) of the PNSs; (2) testing the IPTs through qualitative interviews and quantitative data analysis; (3) evaluating the cost and resource use implications alongside the benefits associated with the role of the PNSs and (4) iteratively refining the IPTs throughout the project. The IPTs will draw on both quantitative and qualitative data. The result of the study will be a series of refined programme theories, which will explain how specialist nurses work in the field of Parkinson’s in the UK, what impact they have on people with Parkinson’s and their families and carers, and at what cost. Ethics and dissemination Northumbria University, the Health Research Authority and Health and Care Research Wales have approved this study. Key findings will be disseminated throughout the duration of the project online and through social media, and via annual and regional Parkinson’s meetings and the Parkinson’s UK Excellence Network. Academic dissemination will occur through publication and conference presentations