Through the eyes of others - The social experiences of people with dementia: A systematic literature review and synthesis

Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts. A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have. Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia. Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia

The long-term (24-month) effect on health and well-being of the Lifestyle Matters community-based intervention in people aged 65 years and over: a qualitative study

Objectives To assess the long-term effect on health and well-being of the Lifestyle Matters programme. Design Qualitative study of a subset of intervention arm participants who participated in the Lifestyle Matters randomised controlled trial (RCT). Setting The intervention took place at community venues within two sites in the UK. Participants A purposeful sample of 13 participants aged between 66 and 88 years from the intervention arm of the RCT were interviewed at 24 months post randomisation. Interviews aimed to understand how participants had used their time in the preceding 2 years and whether the intervention had any impact on their lifestyle choices, participation in meaningful activities and well-being. Intervention Lifestyle Matters is a 4-month occupational therapy intervention, consisting of group and individual sessions, designed to enable community living older people to make positive lifestyle choices and participate in new or neglected activities through increasing self-efficacy. Results Interviews revealed that the majority of interviewed participants were reportedly active at 24 months, with daily routines and lifestyles not changing significantly over time. All participants raised some form of benefit from attending Lifestyle Matters, including an improved perspective on life, trying new hobbies and meeting new friends. A number of intervention participants spoke of adapting to their changing circumstances, but there were significant and lasting benefits for 2 of 13 intervention participants interviewed. Conclusion The majority of those who experienced the Lifestyle Matters intervention reported minor benefits and increases in self-efficacy, but they did not perceive that it significantly improved their health and well-being. The two participants who had experienced major benefits also reported having had life-changing events, suggesting that this intervention is most effective at the time when lifestyle has to be reconsidered if mental well-being is to be sustaine

Effects of robotic-assisted gait training on the central vascular health of individuals with spinal cord injury: A pilot study.

Objective: To investigate the effect of a short-term, robotic-assisted (exoskeleton) gait training (RGT) program on central and peripheral hemodynamic measures in patients with spinal cord injury (SCI). Design: Parallel group, non-randomized trial with before (baseline) and after (follow-up) assessments. Setting: Single-center, community-based neuro-physiotherapy practice. Participants: Twelve individuals with SCI (ASI A to C). Interventions: Participants completed either a 5-day RGT program plus physiotherapy (n = 6), or a usual care physiotherapy only program (control group; n = 6). The RGT program consisted of daily 60-min physiotherapy and 90-min of RGT. Outcome measures were measured before and after the rehabilitation program. Main outcome measure(s): The primary outcome measure was arterial wave reflection (Augmentation index [AIx]), with central and peripheral blood pressures also reported. Data are presented as mean (SD) and effect sizes (partial eta squared; η2 p). Results: There was a significant reduction in AIx (30 ± 18–21 ± 15%; η2 p=0.75) and mean arterial pressure (89 ± 11–82 ± 10 mmHg; η2 p=0.47) following completion of the RGT program (both P < 0.05). There were no changes in these measures for the control group. Although not significantly different, medium to large effects were observed in favor of RGT for all other central and peripheral measures (η2 p=0.06–0.21), except for heart rate and pulse pressure (η2 p<0.04). Conclusions: RGT using an exoskeleton is a promising therapy for improving cardiovascular health in patients with SCI. Specifically, this study indicates decreased arterial wave reflection and supports the need for larger randomized controlled trials

Promoting Independence in Dementia (PRIDE): A Feasibility Randomized Controlled Trial

Background: There is a need for interventions to foster and maintain independence for people with dementia to support community living, improve morale, and reduce stigma. We investigated a social intervention to promote living well and enhance independence for people with mild dementia.Methods: In this two arm parallel group, feasibility RCT at six sites in England, participants were randomized (1:1) to the PRIDE intervention (encompassing social, physical, and cognitive domains supported by a facilitator over three sessions) compared to usual care only. The main objective was to determine the feasibility of a main trial with respect to measures of recruitment, retention, and adherence to the intervention.Results: During a 7-month period, 402 people were invited to the trial, 148 were screened (37%, 95% confidence interval (CI)=32– 42%), 137 were eligible at pre-consent, 94 consented to the trial (69% of those eligible, 95% CI=60– 76%), and 92 were randomized (46 to each group). Of those allocated to the intervention, 42 (91%) received at least one of three intervention sessions. Outcome assessment follow-up visits were completed for 73 participants at 6 months (79%, 95% CI=70– 87%), and this was similar for both groups.Conclusion: A large multi-center trial of the PRIDE intervention in community-dwelling people with mild dementia is feasible using systematic recruitment strategies. The intervention was successfully delivered and well received by participants. Findings from this study will be used to refine the design and processes for a definitive RCT.Trial Registration: ISRCTN, ISRCTN11288961, registered on 23 October 2018

Single port/incision laparoscopic surgery compared with standard three-port laparoscopic surgery for appendicectomy : a randomized controlled trial

Acknowledgments The authors thank John Norrie for advice regarding the reporting of the study, and clinical staff in the Department of General Surgery, Aberdeen Royal Infirmary, for helping with the conduct of the study. This work was supported by a Grant from the Chief Scientist Office (CSO) of the Scottish Government Health Directorates (Grant Number reference CZG/2/498). Jonathan A. Cook held a Medical Research Council, UK, training fellowship (G0601938) while this research was undertaken. The Health Services Research Unit is funded by the CSO of the Scottish Government Health Directorates. The views expressed in this paper are those of the authors and may not necessarily be shared by the funding bodies. The study was overseen by an Advisory Group comprising Professor Marion Campbell (Director, Health Services Research Unit, Aberdeen), Professor John Norrie (CHaRT Director) and Professor Craig Ramsay (Health Care Assessment Programme Director, Health Services Research Unit, Aberdeen). Professor W. Alastair Chambers was the independent chair of the Trial Steering Committee. Contributing surgeons to the SCARLESS study (in alphabetical order): Bassam Alkari, Emad Aly, Norman Binnie, Duff Bruce, Jan Jansen, Peter King, Tim MacAdam, Aileen McKinley, Terry O’Kelly, Ken Park, Abdul Qadir. The National Health Service provided support through the contribution of the following research nurses: Anu Joyson, Hazel Forbes, and Julie Shotton.Peer reviewedPublisher PD

Systematic review of the agreement of tonometers with goldmann applanation tonometry

This review was part of the Surveillance for Ocular Hypertension study funded by the UK National Institute for Health Research Health Technology Assessment Programme (Project No. 07/46/02). J.C. held a Medical Research Council UK fellowship (G0601938). AA-B was a grantholder on an AstraZeneca (London, UK) funded study of a new medication for glaucoma. The Health Services Research Unit receives core funding from the Chief Scientist Office of the Scottish Government Health Directorates. Views and opinions expressed are those of the authors and do not necessarily reflect those of the Chief Scientist Office, National Institute for Health Research Health Technology Assessment Programme, or the Department of Health. None of the funders had a role in the design or conduct of this researchPeer reviewedPostprin

Delegation of insulin administration to non-registered healthcare workers in community nursing teams: a qualitative study

Aims: To explore stakeholder perspectives on the benefits and/or disadvantages of the delegation of insulin injections to healthcare support workers in community nursing services. Design: Qualitative case study. Methods: Interviews with stakeholders purposively sampled from three case sites in England. Data collection took place between October 2020 and July 2021. A reflexive thematic approach to analysis was adopted. Results: A total of 34 interviews were completed: patients and relatives (n = 7), healthcare support workers (n = 8), registered nurses (n = 10) and senior managers/clinicians (n = 9). Analysis resulted in three themes: (i) Acceptance and confidence, (ii) benefits and (iii) concerns and coping strategies. Delegation was accepted by stakeholders on condition that appropriate training, supervision and governance was in place. Continuing contact between patients and registered nurses, and regular contact between registered nurses and healthcare support workers was deemed essential for clinical safety. Services were reliant on the contribution of healthcare support workers providing insulin injections, particularly during the COVID-19 pandemic. Benefits for service and registered nurses included: flexible team working, increased service capacity and care continuity. Job satisfaction and career development was reported for healthcare support workers. Patients benefit from timely administration, and enhanced relationships with the nursing team. Concerns raised by all stakeholders included potential missed care, remuneration and task shifting. Conclusion: Delegation of insulin injections is acceptable to stakeholders and has many benefits when managed effectively. Impact: Demand for community nursing is increasing. Findings of this study suggest that delegation of insulin administration contributes to improving service capacity. Findings highlight the essential role played by key factors such as appropriate training, competency assessment and teamwork, in developing confidence in delegation among stakeholders. Understanding and supporting these factors can help ensure that practice develops in an acceptable, safe and beneficial way, and informs future development of delegation practice in community settings. Patient or Public Contribution: A service user group was consulted during the design phase prior to grant application and provided comments on draft findings. Two people with diabetes were members of the project advisory group and contributed to the study design, development of interview questions, monitoring study progress and provided feedback on study findings

Lifestyle Matters for maintenance of health and wellbeing in people aged 65 years and over: study protocol for a randomised controlled trial

Background Healthy, active ageing is strongly associated with good mental wellbeing which in turn helps to prevent mental illness. However, more investment has been made into research into interventions to prevent mental illness than into those designed to improve mental wellbeing. This applied research programme will provide high quality evidence for an intervention designed to improve and sustain mental wellbeing in older adults. Methods/Design This study was a multi-centre, pragmatic, two-arm, parallel group, individually randomised controlled trial to determine the population benefit of an occupational therapy based intervention for community living people aged 65 years or older. Participants (n = 268) will be identified in one city in the North of England and in North Wales through GP mail-outs, signposting by local authority, primary care staff and voluntary sector organisations and through community engagement. Participants will be randomised to one of two treatment arms: an intervention (Lifestyle Matters programme); or control (routine access to health and social care). All participants will be assessed at baseline, 6 and 24 months post-randomisation. The primary outcome, which is a person reported outcome, is the SF-36 Mental Health dimension at six months post randomisation. Secondary outcome measures have been selected to measure psychosocial, physical and mental health outcomes. They include other dimensions of the SF36, EQ-5D-3L, Brief Resilience Scale, General Perceived Self Efficacy Scale, PHQ-9, de Jong Gierveld Loneliness Scale, Health and Social Care Resource Use and the wellbeing question of the Integrated Household Survey 2011. A cost effectiveness analysis will investigate the incremental cost per Quality Adjusted Life Years (QALYs) of the Lifestyle Matters intervention compared with treatment as usual. Discussion The questions being posed through this research are important given the increasing numbers of older people, pressure on the public purse and the associated need to support good health in the extended lifespan. The proposed trial will determine the clinical and cost effectiveness of the intervention delivered in a UK context. The results will support commissioners and providers with decisions about implementation.</p

Promoting Independence in Dementia (PRIDE): protocol for a feasibility randomised controlled trial.

BACKGROUND: Memory services often see people with early stage dementia who are largely independent and able to participate in community activities but who run the risk of reducing activities and social networks. PRIDE is a self-management intervention designed to promote living well and enhance independence for people with mild dementia. This study aims to examine the feasibility of conducting a definitive randomised trial comparing the clinical and cost-effectiveness of the PRIDE intervention offered in addition to usual care or with usual care alone. METHODS/DESIGN: PRIDE is a parallel, two-arm, multicentre, feasibility, randomised controlled trial (RCT). Eligible participants aged 18 or over who have mild dementia (defined as a score of 0.5 or 1 on the Clinical Dementia Rating Scale) who can participate in the intervention and provide informed consent will be randomised (1:1) to treatment with the PRIDE intervention delivered in addition to usual care, or usual care only. Participants will be followed-up at 3 and 6 month's post-randomisation. There will be an option for a supporter to join each participant. Each supporter will be provided with questionnaires at baseline and follow-ups at 3 to 6 months. Embedded qualitative research with both participants and supporters will explore their perspectives on the intervention investigating a range of themes including acceptability and barriers and facilitators to delivery and participation. The feasibility of conducting a full RCT associated with participant recruitment and follow-up of both conditions, intervention delivery including the recruitment, training, retention of PRIDE trained facilitators, clinical outcomes, intervention and resource use costs and the acceptability of the intervention and study related procedures will be examined. DISCUSSION: This study will assess whether a definitive randomised trial comparing the clinical and cost-effectiveness of whether the PRIDE intervention offered in addition to usual care is feasible in comparison to usual care alone, and if so, will provide data to inform the design and conduct of a future trial. TRIAL REGISTRATION: ISRCTN, ISRCTN11288961, registered on 23 October 2019, http://www.isrctn.com/ISRCTN12345678 Protocol V2.1 dated 19 June 2019

Patterns of relapse following hippocampal avoidance prophylactic cranial irradiation for small cell lung carcinoma

Background: Hippocampal avoidance techniques are an evolving standard of care for patients undergoing cranial irradiation. Our aim was to  assess the oncological outcomes and patterns of failure following hippocampal avoidance prophylactic cranial irradiation (HA-PCI) as a standard of care in unselected patients with both limited and extensive stage small cell lung carcinoma. Materials and methods: Consecutive patients with small cell lung carcinoma with a complete (limited stage) or good partial (extensive stage) response following chemotherapy were eligible to receive HA-PCI, with a total dose of 25 Gray in 10 fractions. All patients had a negative baseline MRI brain scan with gadolinium prior to HA-PCI. Patients had baseline and follow up Common Toxicity Criteria Adverse Event assessments. Following completion of HA-PCI, all patients had three-monthly MRI brain scans with gadolinium until confirmation of intracranial relapse, as well as three-monthly CT of the chest, abdomen and pelvis. Overall and progression-free survival were calculated using the Kaplan-Meier method.   Results: A total of 17 consecutive patients, 9 men and 8 women, with a mean age of 70 years received HA-PCI between May 2016 and June 2020 after completion of their initial chemotherapy. There were no Grade 4 or greater adverse events. No patient had an isolated hippocampal avoidance zone relapse alone; three of 17 patients had multifocal relapses that included the hippocampal avoidance zone. Conclusion: In our series, there were no hippocampal only relapses and we conclude that HA-PCI is a safe alternative to standard PCI in the setting of small cell lung cancer