Social participation in the promoting activity, independence and stability in early dementia (PrAISED), a home-based therapy intervention for people living with dementia: a realist evaluation.

BACKGROUND: Interventions promoting social activity may reduce behavioural psychological symptoms and improve quality of life in people living with dementia. This study aimed to identify social benefits for participants living with dementia in the context of Promoting Activity, Independence and Stability in Early Dementia (PrAISED), an exercise intervention programme promoting physical activity and independence in participants living with dementia in England. METHODS: This was a multi-method realist evaluation undertaking secondary analysis of data collected during the PrAISED process evaluation, including qualitative interviews with participants with dementia, caregivers and therapists, personal notes of researchers, and video recordings of therapy sessions. The study consisted of four phases: (1) Setting operational definition of social outcomes in PrAISED; (2) Developing Context, Mechanisms, Outcome (CMO) configurations; (3) Testing and refining CMOs; and (4) Synthesising definitive CMOs into a middle range theory. RESULTS: Two CMOs were identified. (1) When therapists were able to make therapy sessions engaging and had the caregivers' support, the participants experienced therapy sessions as an opportunity to achieve goals in areas they were interested in. They also found the sessions enjoyable. This all led to the participants being highly engaged in their social interactions with the therapists. (2) When the participants realised that they were gaining benefits and progress through the PrAISED intervention, such as increased balance, this boosted their confidence in physical ability. It might also reduce caregivers' risk-aversion/gatekeeping attitude, which in turn would lead to participants' increased participation in social activities. CONCLUSION: The PrAISED intervention supported social participation in participants living with dementia. Under certain circumstances, home-based therapy interventions can be beneficial for social health (regardless of physical health gains). Given the limitations of currently available outcome measures to assess social participation, qualitative methods should be used to explore social health outcomes.

'Alright my lovely': The use of terms of endearment as a mitigation device in the care of people living with dementia in the acute hospital environment.

This paper examines how terms of endearment (ToE) are used as a mitigation device in interactions between staff and people living with dementia (PLWD) in the acute hospital environment. ToE are often discouraged in training for healthcare staff. However, this research demonstrates that they are still commonly used in practice. Using conversation analysis, video and audio data were examined to identify the interactional functions of ToE. Analysis showed that ToE play an important role in mitigating potentially face-threatening actions such as when patients are asked to repeat hard-to-interpret talk, or when patient agency is compromised through instruction sequences or having necessary healthcare tasks undertaken. The success of this mitigation is sensitive to the specific interactional circumstances, as well as the responsiveness of the HCP to the patient's voiced concerns. These findings have implications for healthcare practice, training and wider care of PLWD.

Establishing a research partnership to investigate functional loss and rehabilitation towards the end of life.

Background: Functional loss, the inability to perform necessary or desired tasks, is a common consequence of life-limiting illnesses and associated symptoms (pain, fatigue, breathlessness, etc.) and causes suffering for patients and families. Rehabilitation, a set of interventions designed to address functional loss, is recognised as essential within palliative care, as it can improve quality of life and reduce care costs. However, not everyone has equal access to rehabilitation. Despite limited life expectancy or uncertain ability to benefit from interventions, palliative rehabilitation services are often absent. This is partly due to a lack of high-quality research around optimal models of rehabilitation. Research in this area is methodologically challenging and requires multidisciplinary and cross-speciality collaboration. Aim and objectives: We aimed to establish and grow a United Kingdom research partnership across diverse areas, commencing with partners from Edinburgh, East Anglia, Lancashire, Leeds, London and Nottingham, around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The objectives were to (1) develop a multidisciplinary, cross-speciality research partnership, (2) generate high-priority unanswered research questions with stakeholders, (3) co-design and submit high-quality competitive research proposals, including (4) sharing topic and methodological expertise, and (5) to build capacity and capability to deliver nationally generalisable studies. Activities: The partnership was established with professionals from across England and Scotland with complementary areas of expertise including complex palliative and geriatric research, physiotherapy, nursing, palliative medicine and psychology. Research questions were generated through a modified version of the Child Health and Nutrition Research Initiative, which allowed for the collation and refinement of research questions relating to functional loss and rehabilitation towards the end of life. Partnership members were supported through a series of workshops to transform research ideas into proposals for submission to stage one calls by the National Institute for Health and Care Research. The partnership not only supported students, clinicians and public members with training opportunities but also supported clinicians in securing protected time from clinical duties to allow them to focus on developing local research initiatives. Reflections: Through our partnership we established a network that offered researchers, clinicians, students and public members the chance to develop novel skills and explore opportunities for personal and professional development around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The partnership was crucial to foster collaboration and facilitate exchange of ideas, knowledge and experiences to build joint research study proposals. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) programme as award number NIHR135171. A plain language summary of this article is available on the NIHR Journals Library website https://doi.org/10.3310/PTHC7598.

'Functional loss' describes a person becoming unable to do the everyday activities they would like or need to do. Life-limiting illnesses and their symptoms can often lead to functional loss: a common source of suffering for patients and their families. Rehabilitation aims to support a person to carry out everyday activities that have been affected by illness. This should be an important part of providing good palliative care. However, in practice, not everyone has equal access to rehabilitation and there is a lack of high-quality research in this area. The Palliative Care Rehabilitation Partnership was created to begin to address these challenges. This partnership completed activities in five key areas: Establishing the partnership ­ Brought together experts from different fields, like palliative care, care for older people and research, to improve rehabilitation for people with life-limiting illnesses. Generating research questions ­ Collected and ranked research questions about functional loss and rehabilitation from various stakeholders, including patients, to identify key research areas. Developing research proposals ­ Helped, through workshops, turn these research questions into detailed proposals for funding. This involved refining ideas, discussing how best to conduct the studies and getting feedback. Building capacity and capability ­ Provided training opportunities for its members, including clinicians, researchers and patients, to improve their research and rehabilitation skills. It also offered mentorship to people with dual roles as clinicians and researchers. Service mapping ­ Improved our understanding of services for functional loss and rehabilitation across different healthcare settings. The Palliative Care Rehabilitation Partnership has made gains in addressing the complex issues of functional loss and rehabilitation in people with life-limiting illnesses. The partnership has supported the development of at least three new research proposals that will be used to apply for future funding.

Factors influencing the commissioning and implementation of health and social care interventions for people with dementia: commissioner and stakeholder perspectives.

BACKGROUND: Despite several interventions demonstrating benefit to people living with dementia and their caregivers, few have been translated and implemented in routine clinical practice. There is limited evidence of the barriers and facilitators for commissioning and implementing health and social care interventions for people living with dementia. The aim of the current study was to explore the barriers and facilitators to commissioning and implementing health and social care interventions for people with dementia, using a dementia friendly exercise and physical activity-based intervention (PrAISED [Promoting Activity, Stability and Independence in Early Dementia and Mild Cognitive Impairment]) as a case study. METHODS: Qualitative semi-structured interviews were conducted with stakeholders from a range of backgrounds including individuals from health and social care, local government, the voluntary and community sector, universities, and research centres in England. The Consolidated Framework for Intervention Research (CFIR) was used to guide the design and analysis. RESULTS: Fourteen participants took part, including commissioning managers, service managers, partnership managers, charity representatives, commercial research specialists, academics/researchers, and healthcare professionals. Data were represented in 33 constructs across the five CFIR domains. Participants identified a need for greater support for people diagnosed with dementia and their caregivers immediately post dementia diagnosis. Key barriers included cost/financing, the culture of commissioning, and available resources. Key facilitators included the adaptability of the intervention, cosmopolitanism/partnerships and connections, external policy and incentives, and the use of already existing (and untapped) workforces. CONCLUSION: Several barriers and facilitators for commissioning and implementing health and social care interventions for people with dementia were identified which need to be addressed. Recommended actions to facilitate the commissioning and implementation of dementia friendly services are: 1) map out local needs, 2) evidence the intervention including effectiveness and cost-effectiveness, 3) create/utilise networks with stakeholders, and 4) plan required resources.

RCT-based Social Return on Investment (SROI) of a Home Exercise Program for People With Early Dementia Comparing In-Person and Blended Delivery Before and During the COVID-19 Pandemic.

Regular exercise and community engagement may slow the rate of function loss for people with dementia. However, the evidence is uncertain regarding the cost-effectiveness and social return on investment (SROI) of home exercise with community referral for people with dementia. This study aimed to compare the social value generated from the in-person PrAISED program delivered before March 2020 with a blended PrAISED program delivered after March 2020. SROI methodology compared in-person and blended delivery formats of a home exercise program. Stakeholders were identified, a logic model was developed, outcomes were evidenced and valued, costs were calculated, and SROI ratios were estimated. Five relevant and material outcomes were identified: 3 outcomes for patient participants (fear of falling, health-related quality of life, and social connection); 1 outcome for carer participants (carer strain), and 1 outcome for the National Health Service (NHS) (health service resource use). Data were collected at baseline and at 12-month follow-up. The in-person PrAISED program generated SROI ratios ranging from £0.58 to £2.33 for every £1 invested. In-person PrAISED patient participants gained social value from improved health-related quality of life, social connection, and less fear of falling. In-person PrAISED carer participants acquired social value from less carer strain. The NHS gained benefit from less health care service resource use. However, the blended PrAISED program generated lower SROI ratios ranging from a negative ratio to £0.08:£1. Compared with the blended program, the PrAISED in-person program generated higher SROI ratios for people with early dementia. An in-person PrAISED intervention with community referral is likely to provide better value for money than a blended one with limited community referral, despite the greater costs of the former.Trial registration: ISRCTN Registry ISRCTN15320670.

Adapted problem adaptation therapy for depression in mild to moderate Alzheimer's disease dementia: A randomized controlled trial.

INTRODUCTION: Trials of effectiveness of treatment options for depression in dementia are an important priority. METHODS: Randomized controlled trial to assess adapted Problem Adaptation Therapy (PATH) for depression in mild/moderate dementia caused by Alzheimer's disease. RESULTS: Three hundred thirty-six participants with mild or moderate dementia, >7 on Cornell Scale for Depression in Dementia (CSDD), randomized to adapted PATH or treatment as usual. Mean age 77.0 years, 39.0% males, mean Mini-Mental State Examination 21.6, mean CSDD 12.9. For primary outcome (CSDD at 6 months), no statistically significant benefit with adapted PATH on the CSDD (6 months: -0.58; 95% CI -1.71 to 0.54). The CSDD at 3 months showed a small benefit with adapted PATH (-1.38; 95% CI -2.54 to -0.21) as did the EQ-5D (-4.97; 95% CI -9.46 to -0.48). DISCUSSION: An eight-session course of adapted PATH plus two booster sessions administered within NHS dementia services was not effective treatment for depression in people with mild and moderate dementia. Future studies should examine the effect of more intensive and longer-term therapy.

Maintaining independence in individuals with dementia at home after a fall: a protocol for the UK pilot cluster randomised controlled trial MAINTAIN.

INTRODUCTION: Individuals with dementia face an increased risk of falls. Falls can cause a decline in the individual's overall functionality. All types of falls, including those that do not result in injury, can lead to psychosocial consequences, such as diminished confidence and a fear of falling. Projections indicate a rising trend in dementia diagnoses, implying an increase in fall incidents. Yet, there is a lack of evidence to support interventions for people living with dementia who have fallen. Our objective is to test the feasibility of a falls intervention trial for people with dementia. METHOD AND ANALYSIS: This is a UK-based two-arm pilot cluster randomised controlled trial. In this study, six collaborating sites, which form the clusters, will be randomly allocated to either the intervention arm or the control arm (receiving treatment as usual) at a 1:1 ratio. During the 6 month recruitment phase, each cluster will enrol 10 dyads, comprising 10 individuals with dementia and their respective carers, leading to a total sample size of 60 dyads. The primary outcomes are the feasibility parameters for a full trial (ie, percentage consented, follow-up rate and cost framework). Secondary outcomes include activities of daily living, quality of life, fall efficacy, mobility, goal attainment, cognitive status, occurrence of falls, carer burden and healthcare service utilisation. Outcome measures will be collected at baseline and 28 weeks, with an additional assessment scheduled at 12 weeks for the healthcare service utilisation questionnaire. An embedded process evaluation, consisting of interviews and observations with participants and healthcare professionals, will explore how the intervention operates and the fidelity of study processes. ETHICS AND DISSEMINATION: The study was approved by the NHS and local authority research governance and research ethics committees (NHS REC reference: 23/WA/0126). The results will be shared at meetings and conferences and will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ISRCTN16413728.

A rehabilitation intervention to improve recovery after an episode of delirium in adults over 65 years (RecoverED): study protocol for a multi-centre, single-arm feasibility study.

BACKGROUND: Delirium affects over 20% of all hospitalised older adults. Delirium is associated with a number of adverse outcomes following hospital admission including cognitive decline, anxiety and depression, increased mortality and care needs. Previous research has addressed prevention of delirium in hospitals and care homes, and there are guidelines on short-term treatment of delirium during admission. However, no studies have addressed the problem of longer-term recovery after delirium and it is currently unknown whether interventions to improve recovery after delirium are effective and cost-effective. The primary objective of this feasibility study is to test a new, theory-informed rehabilitation intervention (RecoverED) in older adults delivered following a hospital admission complicated by delirium to determine whether (a) the intervention is acceptable to individuals with delirium and (b) a definitive trial and parallel economic evaluation of the intervention are feasible. METHODS: The study is a multi-centre, single-arm feasibility study of a rehabilitation intervention with an embedded process evaluation. Sixty participants with delirium (aged > 65 years old) and carer pairs will be recruited from six NHS acute hospitals across the UK. All pairs will be offered the intervention, with follow-up assessments conducted at 3 months and 6 months post-discharge home. The intervention will be delivered in participants' own homes by therapists and rehabilitation support workers for up to 10 intervention sessions over 12 weeks. The intervention will be tailored to individual needs, and the chosen intervention plan and goals will be discussed and agreed with participants and carers. Quantitative data on reach, retention, fidelity and dose will be collected and summarised using descriptive statistics. The feasibility outcomes that will be used to determine whether the study meets the criteria for progression to a definitive randomised controlled trial (RCT) include recruitment, delivery of the intervention, retention, data collection and acceptability of outcome measures. Acceptability of the intervention will be assessed using in-depth, semi-structured qualitative interviews with participants and healthcare professionals. DISCUSSION: Findings will inform the design of a pragmatic multi-centre RCT of the effectiveness and cost-effectiveness of the RecoverED intervention for helping the longer-term recovery of people with delirium compared to usual care. TRIAL REGISTRATION: The feasibility study was registered: ISRCTN15676570.

Promoting Activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED): randomised controlled trial.

OBJECTIVE: To determine the effectiveness of an exercise and functional activity therapy intervention in adults with early dementia or mild cognitive impairment compared with usual care. DESIGN: Randomised controlled trial. SETTING: Participants' homes and communities at five sites in the United Kingdom. PARTICIPANTS: 365 adults with early dementia or mild cognitive impairment who were living at home, and family members or carers. INTERVENTION: The intervention, Promoting activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED), was a specially designed, dementia specific, rehabilitation programme focusing on strength, balance, physical activity, and performance of activities of daily living, which was tailored and progressive and addressed risk and the psychological needs of people with dementia. Up to 50 therapy sessions were provided over 12 months. The control group received usual care plus a falls risk assessment. Procedures were adapted during the covid-19 pandemic. MAIN OUTCOME MEASURES: The primary outcome was score on the carer (informant) reported disability assessment for dementia scale 12 months after randomisation. Secondary outcomes were self-reported activities of daily living, physical activity, quality of life, balance, functional mobility, fear of falling, frailty, cognition, mood, carer strain, service use at 12 months, and falls between months 4 and 15. RESULTS: 365 patient participants were randomised, 183 to intervention and 182 to control. The median age of participants was 80 years (range 65-95), median Montreal cognitive assessment score was 20 out of 30 (range 13-26), and 58% (n=210) were men. Intervention participants received a median of 31 therapy sessions (interquartile range 22-40) and reported completing a mean 121 minutes of PrAISED exercise each week. Primary outcome data were available for 149 intervention and 141 control participants. Scores on the disability assessment for dementia scale did not differ between groups: adjusted mean difference -1.3, 95% confidence interval -5.2 to 2.6; Cohen's d effect size -0.06, 95% confidence interval -0.26 to 0.15; P=0.51). Upper 95% confidence intervals excluded small to moderate effects on any of the range of outcome measures. Between months 4 and 15 the intervention group experienced 79 falls and the control group 200 falls (adjusted incidence rate ratio 0.78, 95% confidence interval 0.5 to 1.3; P=0.3). CONCLUSION: The intensive PrAISED programme of exercise and functional activity training did not improve activities of daily living, physical activity, or quality of life; reduce falls; or improve any other secondary health status outcomes, despite good uptake. Future research should consider alternative approaches to maintaining ability and wellbeing in people with dementia. TRIAL REGISTRATION: ISRCTN Registry ISRCTN15320670.

Should we all die asleep? The problem of the normalization of palliative sedation.

Palliative sedation is a medical intervention to manage distress in dying patients, by reducing consciousness when symptom-directed therapies fail. Continuous deep sedation is ethically sensitive because it may shorten life and completely prevents communication. But sedation short of this is also common. There has been a steady increase in the use of sedation over recent decades. Sedation may have become a means to die while sleeping, rather than a method of last resort to alleviate suffering. Sedation may be requested or expected by patients, families or staff. The need for sedation may be being interpreted more loosely. The acceptance of a 'tolerable amount of discomfort' may have lost ground to a desire to get the final phase over with quickly. Sedation is not always a bad thing. Medical care is otherwise unable to completely control all distressing symptoms in every patient. Sedation may result from other necessary symptom control drugs. Dying when sedated can be seen by as 'peaceful'. We feel it is necessary, however, to highlight three caveats: the need to manage expectations, the cost in terms of loss of communication, and the grey area between continuous deep sedation and euthanasia. We conclude that there may be good grounds for sedation in palliative care, and in some cases, continuous deep sedation may be used as a last resort. But the criteria of necessary and proportionate drug treatment should remain. The normalisation of sedation into dying while sleeping should be resisted.

The facilitators and barriers to improving functional activity and wellbeing in people with dementia: a qualitative study from the process evaluation of Promoting Activity, Independence and Stability in Early Dementia (PrAISED).

BACKGROUND: The PRomoting Activity, Independence and Stability in Early Dementia (PrAISED) study delivered an exercise and functional activity programme to participants living with dementia. A Randomised Controlled Trial showed no measurable benefits in activities of daily living, physical activity or quality of life. OBJECTIVE: To explore participants' responses to PrAISED and explain why an intervention that might be expected to have produced measurable health gains did not do so. METHODS: A process evaluation using qualitative methods, comprising interviews and researcher notes. SETTING: Data were collected in participants' homes or remotely by telephone or videoconferencing. SAMPLE: A total of 88 interviews were conducted with 44 participants living with dementia (n = 32 intervention group; n = 12 control group) and 39 caregivers. A total of 69 interviews were conducted with 26 therapists. RESULTS: Participants valued the intervention as proactively addressing health issues that were of concern to them, and as a source of social contact, interaction, information and advice. Facilitators to achieving positive outcomes included perceiving progress towards desired goals, positive expectations, therapists' skills and rapport with participants, and caregiver support. Barriers included: cognitive impairment, which prevented independent engagement and carry-over between sessions; chronic physical health problems and intercurrent acute illness and injury; 'tapering' (progressively infrequent supervision intended to help develop habits and independent activity); and the COVID-19 pandemic. CONCLUSIONS: Self-directed interventions may not be appropriate in the context of dementia, even in the mild stages of the condition. Dementia-specific factors affected outcomes including caregiver support, rapport with therapists, availability of supervision, motivational factors and the limitations of remote delivery. The effects of cognitive impairment, multimorbidity and frailty overwhelmed any positive impact of the intervention. Maintenance of functional ability is valued, but in the face of inevitable progression of disease, other less tangible outcomes become important, challenging how we frame 'health gain' and trial outcomes.

Conversation Analysis Based Simulation (CABS): A method for improving communication skills training for healthcare practitioners.

BACKGROUND: Actors portraying simulated patients are widely used in communication skills training in healthcare, but debates persist over the authenticity of these interactions. However, healthcare professionals value simulation-based training because of the opportunity to think and react in real time, which alternatives cannot provide. OBJECTIVE: To describe a method for the use of simulation which maximises authenticity by grounding training in real, observed, patterns of patient communication. DESIGN: Naturally occurring care interactions were video recorded and analysed using conversation analysis (CA) to identify communication patterns. We focused on sites of recurring interactional trouble as areas for training, and identified more and less effective ways of dealing with these. We used the CA findings to train actors portraying simulated patients, based on the observed interactional patterns. SETTINGS AND PARTICIPANTS: Patients living with dementia and healthcare practitioners (HCPs) on two acute healthcare of the elderly wards in the English East Midlands. OUTCOME MEASURES: One month later HCPs reported using the skills learned in clinical practice. Masked-ratings of before and after simulated patient encounters confirmed these self-reports in relation to one key area of training. RESULTS: The Conversation Analysis Based Simulation (CABS) method used in this setting showed positive results across a range of quantitative and qualitative outcome measures. What is significant for the transferability of the method is that qualitative feedback from trainees highlighted the ability of the method to not only illuminate their existing effective practices, but to understand why these were effective and be able to articulate them to others. DISCUSSION/CONCLUSION: While the CABS method was piloted in the dementia care setting described here, it has potential applicability across healthcare settings where simulated consultations are used in communication skills training. Grounding simulated interaction in the observed communication patterns of real patients is an important means of maximising authenticity. PATIENT AND PUBLIC CONTRIBUTION: The VideOing to Improve dementia Communication Education (VOICE) intervention which piloted the CABS method was developed by a multidisciplinary team, including three carers of people with dementia. People living with dementia were involved in the rating of the before and after video simulation assessments.

Association between pain intensity and depressive symptoms in community-dwelling adults: longitudinal findings from the Survey of Health, Ageing and Retirement in Europe (SHARE).

PURPOSE: To investigate the longitudinal associations between pain and depressive symptoms in adults. METHODS: Prospective cohort study on data from 28,515 community-dwelling adults ≥ 50 years, free from depression at baseline (Wave 5), with follow-up in Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE). Significant depressive symptoms were defined by a EURO-D score ≥ 4. The longitudinal association between baseline pain intensity and significant depressive symptoms at follow-up was analysed using logistic regression models; odds ratios (ORs) and confidence intervals (CI) were calculated, adjusting for socio-demographic and clinical factors, physical inactivity, loneliness, mobility and functional impairments. RESULTS: Mean age was 65.4 years (standard deviation 9.0, range 50-99); 14,360 (50.4%) participants were women. Mean follow-up was 23.4 (standard deviation 3.4) months. At baseline, 2803 (9.8%) participants reported mild pain, 5253 (18.4%) moderate pain and 1431 (5.0%) severe pain. At follow-up, 3868 (13.6%) participants-1451 (10.3%) men and 2417 (16.8%) women-reported significant depressive symptoms. After adjustment, mild, moderate and severe baseline pain, versus no pain, were associated with an increased likelihood of significant depressive symptoms at follow-up: ORs (95% CI) were 1.20 (1.06-1.35), 1.32 (1.20-1.46) and 1.39 (1.19-1.63), respectively. These associations were more pronounced in men compared to women, and consistent in participants aged 50-64 years, those without mobility or functional impairment, and those without loneliness at baseline. CONCLUSION: Higher baseline pain intensity was longitudinally associated with a greater risk of significant depressive symptoms at 2-year follow-up, in community-dwelling adults without baseline depression.

The use of constant observation with people with dementia in hospitals: a mixed-methods systematic review.

OBJECTIVES: Constant observation is used in hospitals with people with dementia to manage their safety. However, opportunities for proactive care are not consistently recognised or utilised. A systematic review of constant observation was conducted to understand measures of effectiveness and facilitators for person-centred approaches. METHOD: Electronic databases were searched between 2010 and 2022. Four reviewers completed screening, quality assessments and data extraction with 20% checked for consistency. Findings were presented through narrative synthesis (PROSPERO registration CRD42020221078). FINDINGS: Twenty-four studies were included. Non-registered staff without specific training were the main providers of constant observation. Assessments and processes clarifying the level of observation encouraged reviews that linked initiation and discontinuation to a patient's changing needs. Examples of person-centred care, derived from studies of volunteers or staff employed to provide activities, demonstrated meaningful engagement could reassure a person and improve their mood. Proactive approaches that anticipated distress were thought to reduce behaviours that carried a risk of harm but supporting evidence was lacking. CONCLUSION: Non-registered staff are limited by organisational efforts to reduce risk, leading to a focus on containment. Trained staff who are supported during constant observation can connect with patients, provide comfort and potentially reduce behaviours that carry a risk of harm.

Incidence of cognitive impairment and dementia after hospitalisation for pneumonia: a UK population-based matched cohort study.

Background: Survivors of common infections may develop cognitive impairment or dementia; however, the risk of these conditions in people hospitalised with pneumonia is not well established. Methods: A matched cohort study was conducted using Hospital Episode Statistics (HES) data linked to the Clinical Practice Research Database (CPRD). Adults with the first International Classification of Diseases (10th Revision) code for pneumonia recorded in the HES between 1 July 2002 and 30 June 2017 were included, and up to four controls without hospitalisation for pneumonia in the CPRD were matched by sex, age and practice. Cognitive impairment and dementia incidence rates were calculated and survival analysis was performed comparing those hospitalised with pneumonia to the general population. Results: The incidence rates of cognitive impairment and dementia were 18 (95% CI 17.3-18.7) and 13.2 (95% CI 13-13.5) per 1000 person-years among persons previously hospitalised with pneumonia and the matched cohort respectively. People previously hospitalised with pneumonia had 53% higher incidence of cognitive impairment and dementia (adjusted hazard ratio (aHR) 1.53, 95% CI 1.46-1.61) than their matched cohort. The highest incidence was observed within 1 year of hospitalisation for pneumonia compared to the general population (aHR 1.89, 95% CI 1.75-2.05). Age modified the effect of hospitalisation for pneumonia on cognitive impairment and dementia such that the size of effect was stronger in people between 45 and 60 years old (p-value for interaction <0.0001). Conclusion: Cognitive impairment and dementia are more likely to be diagnosed in people who have been hospitalised for pneumonia, especially in the first year after discharge, than in the general population.

Experiences and understanding of apathy in people with neurocognitive disorders and their carers: a qualitative interview study.

BACKGROUND: apathy, defined as reduced goal-directed activity, interests and emotion, is highly prevalent in neurocognitive disorders (NCDs). Apathy has important consequences for the individuals who experience it and their carers, yet the lived experiences of apathy in this population are not well understood. OBJECTIVE: to explore how people with NCDs and their carers understand and experience apathy. METHOD: in-depth semi-structured interviews were conducted in participants' homes. Sixteen people with NCDs (dementia or mild cognitive impairment) and 14 carers, living in four geographical areas of England, took part. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using reflexive thematic analysis. RESULTS: four themes were generated: 'Apathy is Poorly Understood'; 'Too much trouble: Mediating Effort and Outcome'; 'Preserving Identity in the Face of Loss of Capability and Autonomy' and 'Opportunity and Exclusion'. CONCLUSION: apathy is experienced as an understandable response to the everyday struggle people with NCDs face to preserve identity in the face of threats to capability and autonomy and is exacerbated by the lack of support and opportunities. Social and environmental modifications may help reduce apathy. In line with previous qualitative research, this challenges the dominant view of apathy as a neuropsychiatric symptom that excludes the social-environmental context.