Public and patient involvement in research on ageing and dementia

Purpose: This paper aims to assess the current state, and various methods, of public and patient involvement, particularly but not exclusively in research on ageing and dementia. Design/methodology/approach: Interviews were carried out with a researcher, who has had a leading role in research on dementia; a public contributor with extensive relevant experience; and a member of the research design service with responsibility for patient and public involvement. Findings: All those involved in the research can benefit considerably from public and patient involvement and it can make a significant difference to the course of a project. The importance of choosing an appropriate method of involvement is discussed and planning for it in both financial terms and time allowed. Examples are given of successful studies. Research limitations/implications: Those who took part in the interviews were chosen for their record in furthering public and patient involvement in research. There is no attempt to compare their views with those of the wider research community. Practical implications: The various ways in which patients and the public are involved in relevant research is a guide to those designing projects and those who may want to explore opportunities for involvement. Social implications: Social implications include being able to influence research projects, contributors of all ages find they are valued. Originality/value: The format of the paper is original, eliciting material from three viewpoints on research and involvement

Systematic review of the health and societal effects of medication organisation devices

Background: Suboptimal medication adherence is a significant threat to public health and resources. Devices that organise weekly doses by time and day are commonly used to reduce unintentional non-adherence. However, there is limited evidence to support their use. This systematic review was conducted to evaluate current evidence for their efficacy, safety and costs. Methods: A pre-defined search of electronic databases from inception to January 2013 augmented with hand-searching was conducted. No limits were placed on publication date. Studies that compared organisation devices used by patients administering their own medication with standard medication packaging regardless of study design were eligible for inclusion. Studies that solely explored dispensing aspects of organisation devices were included whether or not they compared this to standard care. Screening of articles for inclusion and data extraction were completed independently by two reviewers with disagreements resolved by discussion. Outcomes were categorised into impact on health, medication adherence, healthcare utilisation, dispensing errors, supply procedures and costs. Risk of bias was also assessed. Results: Seventeen studies met the inclusion criteria. Health outcomes were investigated in seven studies of which three reported a positive effect associated with organisation devices. Medication adherence was reported in eight studies of which three reported a positive effect. Three studies reported health care utilisation data but overall results are inconclusive. No optimal dispensing or supply procedures were identified. Economic assessment of the impact of organisation devices is lacking. All studies were subject to a high risk of bias. Conclusions: Evidence regarding the effects of medication organisation devices was limited, and the available evidence was susceptible to a high risk of bias. Organisation devices may help unintentional medication non-adherence and could improve health outcomes. There is a strong need for more studies that explore the impact of such devices on patients, and an equally pressing need for studies that explore the impacts on healthcare services. Registration: This systematic review is registered with PROSPERO (Registration number CRD42011001718). Keywords Compliance aid, medication organiser, multi-compartment device, adherence, cost, pill organiser

The challenges of training, support and assessment of healthcare support workers: A qualitative study of experiences in three English acute hospitals

Background: Ever-growing demands on care systems have increased reliance on healthcare support workers. In the UK, their training has been variable, but organisation-wide failures in care have prompted questions about how this crucial section of the workforce should be developed. Their training, support and assessment has become a policy priority. Objectives: This paper examines: healthcare support workers’ access to training, support and assessment; perceived gaps in training provision; and barriers and facilitators to implementation of relevant policies in acute care. Design and settings: We undertook a qualitative study of staff caring for older inpatients at ward, divisional or organisational-level in three acute National Health Service hospitals in England in 2014. Participants: 58 staff working with older people (30 healthcare support workers and 24 staff managing or working alongside them) and 4 healthcare support worker training leads. Methods: One-to-one semi-structured interviews included: views and experiences of training and support; translation of training into practice; training, support and assessment policies and difficulties of implementing them. Transcripts were analysed to identify themes. Results: Induction training was valued, but did not fully prepare healthcare support workers for the realities of the ward. Implementation of hospital policies concerning supervision and formal assessment of competencies varied between and within hospitals, and was subject to availability of appropriate staff and competing demands on staff time. Gaps identified in training provision included: caring for people with cognitive impairment; managing the emotions of patients, families and themselves; and having difficult conversations. Access to ongoing training was affected by: lack of time; infrequent provision; attitudes of ward managers to additional support workforce training, and their need to balance this against patients’ and other staff members’ needs; and the use of e-learning as a default mode of training delivery. Conclusions: With the current and unprecedented policy focus on training, support and assessment of healthcare support workers, our study suggests improved training would be welcomed by them and their managers. Provision of training, support and assessment could be improved by organisational policy that promotes and protects healthcare support worker training; formalising the provision and availability of on-ward support; and training and IT support provided on a drop-in basis. Challenges in implementation are likely to be faced in all international settings where there is increased reliance on a support workforce. While recent policies in the UK offers scope to overcome some of these challenges there is a risk that some will be exacerbated

In-PREP: a new learning design framework and methodology applied to a relational care training intervention for healthcare assistants

BACKGROUND: 'Older People's Shoes' is a training intervention designed for healthcare assistants (HCAs) to improve the relational care of older people in hospital. The intervention formed part of a broader evaluation, in this paper we describe its development from a learning design and methodological perspective. METHODS: Learning theory and an instructional design model were key components of the In-PREP (Input, Process, Review and Evaluation, Product) development methodology used in the design of the 'Older People's Shoes' training intervention to improve the delivery of relational care by front-line hospital staff. An expert panel, current evidence, and pedagogical theory were used to co-design a training programme tailored to a challenging work environment and taking account of trainees' diverse educational experience. Peer review and process evaluation were built into the development model. RESULTS: In-PREP provided a methodological scaffold for producing evidence-based, peer-reviewed, co-designed training. The product, 'Older People's Shoes', involved a one-day Train the Trainers event, followed by delivery of a two-day, face-to-face training programme by the trainers, with accompanying handbooks underpinned by a range of digital resources. Evaluation found the approach met learner needs, was applicable in practice and won approval from trainers. DISCUSSION: In-PREP enables high quality learning content, alignment with learner needs and a product that is relevant, practical and straightforward to implement

Undiagnosed dementia in primary care: A record linkage study

BackgroundThe number of people living with dementia is greater than the number with a diagnosis of dementia recorded in primary care. This suggests that a significant number are living with dementia that is undiagnosed. Little is known about this group and there is little quantitative evidence regarding the consequences of diagnosis for people with dementia.ObjectivesThe aims of this study were to (1) describe the population meeting the criteria for dementia but without diagnosis, (2) identify predictors of being diagnosed and (3) estimate the effect of diagnosis on mortality, move to residential care, social participation and well-being.DesignA record linkage study of a subsample of participants (n = 598) from the Cognitive Function and Ageing Study II (CFAS II) (n = 7796), an existing cohort study of the population of England aged ≥ 65 years, with standardised validated assessment of dementia and consent to access medical records.Data sourcesData on dementia diagnoses from each participant’s primary care record and covariate and outcome data from CFAS II.SettingA population-representative cohort of people aged ≥ 65 years from three regions of England between 2008 and 2011.ParticipantsA total of 598 CFAS II participants, which included all those with dementia who consented to medical record linkage (n = 449) and a stratified sample without dementia (n = 149).Main outcome measuresThe main outcome was presence of a diagnosis of dementia in each participant’s primary care record at the time of their CFAS II assessment(s). Other outcomes were date of death, cognitive performance scores, move to residential care, hospital stays and social participation.ResultsAmong people with dementia, the proportion with a diagnosis in primary care was 34% in 2008–11 and 44% in 2011–13. In both periods, a further 21% had a record of a concern or a referral but no diagnosis. The likelihood of having a recorded diagnosis increased with severity of impairment in memory and orientation, but not with other cognitive impairment. In multivariable analysis, those aged ≥ 90 years and those age

Testing for SARS-CoV-2 infection in care home residents and staff in English care homes: A service evaluation

Context COVID-19 is especially dangerous to older adults living in residential care. Objective To evaluate the usefulness of a nurse-led Enhanced Care Home Team (ECHT) SARS-CoV-2 testing strategy to identify resident cases early, identify typical illness presentation residents, and correctly attribute cause of death in care home settings in Norfolk, UK. Method Residents and staff received nose and throat swab tests (7 April to 29 June 2020). Resident test results were linked with symptoms on days 0-14 after test and mortality to 13 July 2020. The data collected were used to evaluate service performance. Findings Residents (n=521) and staff (estimated n=340) in 44 care homes were tested in the ECHT service. SARS-CoV-2 positivity was identified in 103 residents in 14 homes and 49 staff in seven homes. Of 103 SARS-CoV-2+ residents, just 37 had what were understood to be typical COVID-19 symptom(s). Among 51 residents without symptoms when initially tested, 13 (25%) developed symptoms within 14 days. Many SARS-CoV-2+ residents lacked typical symptoms but presented rather as ‘generally unwell’ (n=16). Of 39 resident deaths during the monitoring period, 20 (51%) were initially attributed to SARS-CoV-2, all of whom tested SARS-CoV-2+. One deceased person not initially attributed to SARS-CoV-2 tested positive through a different monitoring programme. 9% of all staff tests were positive. Implications A locally designed and integrated joint nursing and social care team approach successfully identified asymptomatic and pre-symptomatic SARS-CoV-2+ residents and staff. Being ‘generally unwell’ was common amongst symptomatic residents and indicated SARS-CoV-2 infection in older people in the absence of more ‘typical’ symptoms. The service supported correct attribution of cause of death

Adverse effects of Z-drugs for sleep disturbance in people living with dementia:a population-based cohort study

Background: Sleep disturbance is common in dementia and often treated with Z-drugs (zopiclone, zaleplon, and zolpidem). While some observational studies suggest that Z-drugs are associated with adverse events such as falls and fracture risks in older people, this has not been studied in dementia. Methods: We used data from 27,090 patients diagnosed with dementia between January 2000 and March 2016 from the Clinical Practice Research Datalink linked to Hospital Episodes Statistics data in England. We compared adverse events for 3532 patients newly prescribed Z-drugs by time-varying dosage to (1) 1833 non-sedative-users with sleep disturbance; (2) 10,214 non-sedative-users with proximal GP consultation matched on age, sex, and antipsychotic use; and (3) 5172 patients newly prescribed benzodiazepines. We defined higher dose Z-drugs and benzodiazepines as prescriptions equivalent to ≥ 7.5 mg zopiclone or > 5 mg diazepam daily. Cox regression was used to estimate hazard ratios (HRs) for incident fracture, hip fracture, fall, mortality, acute bacterial infection, ischaemic stroke/transient ischaemic attack, and venous thromboembolism over a 2-year follow-up, adjusted for demographic- and health-related covariates. Results: The mean (SD) age of patients was 83 (7.7) years, and 16,802 (62%) were women. Of 3532 patients prescribed Z-drugs, 584 (17%) were initiated at higher doses. For patients prescribed higher dose Z-drugs relative to non-users with sleep disturbance, the HRs (95% confidence interval) for fractures, hip fractures, falls, and ischaemic stroke were 1.67 (1.13–2.46), 1.96 (1.16–3.31), 1.33 (1.06–1.66), and 1.88 (1.14–3.10), respectively. We observed similar associations when compared to non-sedative-users with proximal GP consultation. Minimal or inconsistent excess risks were observed at ≤ 3.75 mg zopiclone or equivalent daily, and for mortality, infection, and venous thromboembolism. We observed no differences in adverse events for Z-drugs compared to benzodiazepines, except lower mortality rates with Z-drugs (HR [95% confidence interval] of 0.73 [0.64–0.83]). Conclusions: Higher dose Z-drug use in dementia is associated with increased fracture and stroke risks, similar or greater to that for higher dose benzodiazepines. Higher dose Z-drugs should be avoided, if possible, in people living with dementia, and non-pharmacological alternatives preferentially considered. Prescriptions for higher dose Z-drugs in dementia should be regularly reviewed. Trial registration: ENCePP e-register of studies, EUPAS18006

Non-benzodiazepine hypnotic use for sleep disturbance in people aged over 55 years living with dementia:a series of cohort studies

BACKGROUND: Sleep disturbance affects around 60% of people living with dementia and can negatively affect their quality of life and that of their carers. Hypnotic Z-drugs (zolpidem, zopiclone and zaleplon) are commonly used to treat insomnia, but their safety and efficacy have not been evaluated for people living with dementia. OBJECTIVES: To estimate the benefits and harms of Z-drugs in people living with dementia with sleep disturbance. DESIGN: A series of observational cohort studies using existing data from (1) primary care linked to hospital admission data and (2) clinical cohort studies of people living with dementia. DATA SOURCES: Primary care study - Clinical Practice Research Datalink linked to Hospital Episode Statistics and Office for National Statistics mortality data. Clinical cohort studies - the Resource Use and Disease Course in Dementia - Nursing Homes (REDIC) study, National Alzheimer's Coordinating Centre (NACC) clinical data set and the Improving Well-being and Health for People with Dementia (WHELD) in nursing homes randomised controlled trial. SETTING: Primary care study - 371 primary care practices in England. Clinical cohort studies - 47 nursing homes in Norway, 34 Alzheimer's disease centres in the USA and 69 care homes in England. PARTICIPANTS: Primary care study - NHS England primary care patients diagnosed with dementia and aged > 55 years, with sleep disturbance or prescribed Z-drugs or low-dose tricyclic antidepressants, followed over 2 years. Clinical cohort studies - people living with dementia consenting to participate, followed over 3 years, 12 years and 9 months, for REDIC, NACC and WHELD, respectively. INTERVENTIONS: The primary exposure was prescription or use of Z-drugs. Secondary exposures included prescription or use of benzodiazepines, low-dose tricyclic antidepressants and antipsychotics. MAIN OUTCOME MEASURES: Falls, fractures, infection, stroke, venous thromboembolism, mortality, cognitive function and quality of life. There were insufficient data to investigate sleep disturbance. RESULTS: The primary care study and combined clinical cohort studies included 6809 and 18,659 people living with dementia, with 3089 and 914 taking Z-drugs, respectively. New Z-drug use was associated with a greater risk of fractures (hazard ratio 1.40, 95% confidence interval 1.01 to 1.94), with risk increasing with greater cumulative dose (p = 0.002). The hazard ratio for Z-drug use and hip fracture was 1.59 (95% confidence interval 1.00 to 2.53) and for mortality was 1.34 (95% confidence interval 1.10 to 1.64). No excess risks of falls, infections, stroke or venous thromboembolism were detected. Z-drug use also did not have an impact on cognition, neuropsychiatric symptoms, disability or quality of life. LIMITATIONS: Primary care study - possible residual confounding because of difficulties in identifying patients with sleep disturbance and by dementia severity. Clinical cohort studies - the small numbers of people living with dementia taking Z-drugs and outcomes not necessarily being measured before Z-drug initiation restricted analyses. CONCLUSIONS: We observed a dose-dependent increase in fracture risk, but no other harms, with Z-drug use in dementia. However, multiple outcomes were examined, increasing the risk of false-positive findings. The mortality association was unlikely to be causal. Further research is needed to confirm the increased fracture risk. Decisions to prescribe Z-drugs may need to consider the risk of fractures, balanced against the impact of improved sleep for people living with dementia and that of their carers. Our findings suggest that when Z-drugs are prescribed, falls prevention strategies may be needed, and that the prescription should be regularly reviewed. FUTURE WORK: More research is needed on safe and effective management strategies for sleep disturbance in people living with dementia. STUDY REGISTRATION: This study is registered as European Union electronic Register of Post-Authorisation Studies (EU PAS) 18006. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 1. See the NIHR Journals Library website for further project information

Can Healthcare Assistant Training (CHAT) improve the relational care of older people? Study protocol for a pilot cluster-randomised controlled trial

Background People aged 75 years and over account for one in four of all hospital admissions. There has been increasing recognition of problems in the care of older people, particularly in hospitals. Evidence suggests that older people judge the care they receive in terms of kindness, empathy, compassion, respectful communication and being seen as a person not just a patient. These are aspects of care to which we refer when we use the term 'relational care'. Healthcare assistants deliver an increasing proportion of direct care to older people, yet their training needs are often overlooked. Methods/design This study will determine the acceptability and feasibility of a cluster randomised controlled trial of 'Older People's Shoes' a two-day training intervention for healthcare assistants caring for older people in hospital. Within this pilot, two-arm, parallel, cluster randomised controlled trial, healthcare assistants within acute hospital wards are randomised to either the two-day training intervention or training as usual. Registered nurses deliver 'Older People's Shoes' over two days, approximately one week apart. It contains three components: experiential learning about ageing, exploration of older people's stories, and customer care. Outcomes will be measured at the level of patient (experience of emotional care and quality of life during their hospital stay), healthcare assistant (empathy and attitudes towards older people), and ward (quality of staff/patient interaction). Semi-structured interviews of a purposive sample of healthcare assistants receiving the intervention, and all trainers delivering the intervention, will be undertaken to gain insights into the experiences of both the intervention and the trial, and its perceived impact on practice. Trial registration The study was registered as an International Standard Randomised Contolled Trial (ISRCTN10385799) on 29 December 2014