The person, interactions and environment programme to improve care of people with dementia in hospital: a multisite study

Background: Improving care of people with dementia on acute hospital wards is a policy priority. Person-centred care is a marker of care quality; delivering such care is a goal for service improvement. Objectives: PIE (Person: Interaction; Environment) comprises an observation tool and systematic approach to implement and embed a person-centred approach in routine care for hospitalised patients with dementia. The study aims were to: evaluate PIE as a method to improve the care of older people with dementia on acute hospital wards; and develop insight into what person-centred care might look like in practice in this setting. Methods: We performed a longitudinal comparative case study design in ten purposively selected wards in five Trusts in three English regions; alongside an embedded process evaluation. Data was collected from multiple sources: staff, patients, relatives, organisational aggregate information and documents. Mixed methods were employed: ethnographic observation; interviews and questionnaires; patient case studies (patient observation and conversations ‘in the moment’, interviews with relatives and case records), patient and ward aggregate data. Data was synthesised to create individual case studies of PIE implementation and outcomes in context of ward structure, organisation, patient profile and process of care delivery. Cross case comparison facilitated a descriptive and explanatory account of PIE implementation in context, the pattern of variation, what shaped it and the consequences flowing from it. Quantitative data was analysed using simple descriptive statistics. Qualitative data analysis employed grounded theory methods. Results: The study furthered understanding of dimensions of care quality for older people with dementia on acute hospital wards and the environmental, organisational and cultural factors that shaped delivery. Only two wards fully implemented PIE, sustaining and embedding change over 18 months. The remaining wards either did not install PIE (‘non-implementers’); or were ‘partial implementers’. The interaction between micro-level contextual factors (aspects of leadership (drivers, facilitators, team, networks), fit with strategic initiatives and salience with valued goals) and miso and macro level organisational factors, were the main barriers to PIE adoption. Where implemented, evidence suggests that the programme directly affected improvement in ward practice with positive impact on the experience of patients and caregivers, although the heterogeneity of need and severity of impairment meant that some of the more visible changes did not affect everyone equally. Limitations: Although PIE has potential to improve the care of people with dementia when implemented, findings are indicative only: data on clinical outcomes was not systematically collected; and PIE was not adopted on most study wards. Research implications: Further research is required to identify more precisely the skill-mix and resources necessary to provide person-focused care to hospitalised people with dementia, across the spectrum of need, including those with moderate and severe impairment. Implementing innovations to change practices in complex organisations requires more in-depth understanding of contextual factors that impact the capacity of organisations to absorb and embed new practices

Optimising Intervention Implementation in the EPIC trial

The DCM™ EPIC trial requires participating care homes to identify two staff members willing to be trained in the DCM™ intervention and thereafter implement three DCM ‘mapping cycles’ during the trial. These staff are known as ‘mappers’. This is no small undertaking, and early pilot work highlighted the need to include additional measures to enhance adherence to some elements of intervention uptake and delivery. Various strategies were thus implemented which comprise: a) provision of enhanced information to prospective staff mappers, b) requirement for staff to detail their understanding of DCM™, c) DCM™ expert contact with mappers ahead of randomisation to ensure eligibility and suitability, d) an expert-supported first cycle of mapping, e) review of mapper and expert feedback after the first cycle to ensure areas of concern can be addressed prior to the next cycle, f) CTU contact with mappers to flag the timing of the next mapping cycle, and address any concerns. To achieve the above, trials unit staff act as a central point of contact, reviewing mapper consent and materials, monitoring each stage of the process and contacting DCM™ experts and the Chief Investigator to flag issues and problems in a timely manner. Although enhancing intervention compliance in this way can be seen to be altering the implementation of the intervention and thus reducing its generalizability, it will be discussed that intervention optimisation is necessary to minimise the likelihood of negative results attributable to poor implementation rather than intervention ineffectiveness

Pro re nata prescribing and administration for neuropsychiatric symptoms and pain in long-term care residents with dementia and memory problems: a cross-sectional study

Background: Prescribing, dispensing and administering pro re nata (PRN; as needed or necessary, as determined by an individual) medicines to people with intermittent or short-term conditions is a potential area for medication errors and inappropriate prescribing and administration. In people with dementia, regular PRN medicines use can demonstrate good practice when appropriate or poor in situations where their use is not recommended. However, the frequency of PRN prescription and administration within long-term care settings (care homes) for people with dementia is largely unknown. A limited number of studies worldwide suggest variation between countries. Objective: To describe the prescription and administration rates of PRN medicines for people with dementia in UK care homes. Setting: Fifty UK care homes. Method: Medication details were collected from review of residents’ medicines records within the care home for the previous month. Main outcome measure: Prescription and administration of PRN medicines for the treatment of behaviours associated with neuropsychiatric symptoms and pain. Results: The most commonly prescribed PRN medicines were analgesics (35.3%), although lower levels of PRN prescription were observed compared to recent studies. The percentage of residents receiving PRN administrations varied, with 20% for antipsychotics, 50% for benzodiazepines, 59% for analgesics, and 85.7% for nonbenzodiazepine hypnotics being administered. Conclusion: Further research is needed to understand the decision making in PRN prescription and administration within long-term care. The prescribing of potentially inappropriate medicines remains a problem in long-term care settings and pharmacists have a key role in reducing inappropriate polypharmacy by undertaking medication reviews that consider both regular and PRN medicines

The Person, Interactions and Environment Programme to improve care of people with dementia in hospital: a multisite study

Background: Improving the care of people with dementia on acute hospital wards is a policy priority. Person-centred care is a marker of care quality; delivering such care is a goal of service improvement. Objectives: The Person, Interactions and Environment (PIE) Programme comprises an observation tool and a systematic approach to implement and embed a person-centred approach in routine care for hospitalised patients with dementia. The study aims were to evaluate PIE as a method to improve the care of older people with dementia on acute hospital wards, and develop insight into what person-centred care might look like in practice in this setting. Methods: We performed a longitudinal comparative case study design in 10 purposively selected wards in five trusts in three English regions, alongside an embedded process evaluation. Data were collected from multiple sources: staff, patients, relatives, organisational aggregate information and documents. Mixed methods were employed: ethnographic observation; interviews and questionnaires; patient case studies (patient observation and conversations ‘in the moment’, interviews with relatives and case records); and patient and ward aggregate data. Data were synthesised to create individual case studies of PIE implementation and outcomes in context of ward structure, organisation, patient profile and process of care delivery. A cross-case comparison facilitated a descriptive and explanatory account of PIE implementation in context, the pattern of variation, what shaped it and the consequences flowing from it. Quantitative data were analysed using simple descriptive statistics. A qualitative data analysis employed grounded theory methods. Results: The study furthered the understanding of the dimensions of care quality for older people with dementia on acute hospital wards and the environmental, organisational and cultural factors that shaped delivery. Only two wards fully implemented PIE, sustaining and embedding change over 18 months. The remaining wards either did not install PIE (‘non-implementers’) or were ‘partial implementers’. The interaction between micro-level contextual factors [aspects of leadership (drivers, facilitators, team, networks), fit with strategic initiatives and salience with valued goals] and meso- and macro-level organisational factors were the main barriers to PIE adoption. Evidence suggests that the programme, where implemented, directly affected improvements in ward practice, with a positive impact on the experiences of patients and caregivers, although the heterogeneity of need and severity of impairment meant that some of the more visible changes did not affect everyone equally. Limitations: Although PIE has the potential to improve the care of people with dementia when implemented, findings are indicative only: data on clinical outcomes were not systematically collected, and PIE was not adopted on most study wards. Research implications: Further research is required to identify more precisely the skill mix and resources necessary to provide person-focused care to hospitalised people with dementia, across the spectrum of need, including those with moderate and severe impairment. Implementing innovations to change practices in complex organisations requires a more in-depth understanding of the contextual factors that have an impact on the capacity of organisations to absorb and embed new practices

Complexities of trial recruitment in the care home setting: an illustration via the EPIC trial

Conducting trials in care homes is complex on multiple levels. Here, we focus on recruitment issues surrounding: a) care home selection to participate in research, b) selection and involvement of participants fulfilling various roles (residents, relatives, staff), c) consent in the context of the Mental Capacity Act, and d) scheduling researcher time to undertake complex recruitment processes across multiple care homes. To ensure generalizability of results, DCM™ EPIC care homes were selected to form a stratified random sample of a known sampling frame. This was done by first defining catchment areas around each of three participating UK hubs. Randomly ordered listings of all eligible care homes within those areas were then produced, with batches of care homes sent trial information and followed up by researchers. Trial participation for a home requires agreement to take part from residents and their relatives (as personal consultees and providers of proxy data), as well as staff involvement to provide data (proxy and self) and be trained to deliver the DCMTM intervention. This requires complex, lengthy discussions with all parties, provision of tailored information sheets specific to intended role and capacity, and involvement of trial experts to explain DCMTM in more detail to staff. The trial aims to recruit 50 care homes (750 residents) by the end of 2015. Thus there is the need to balance the complexity of processes with required speed of recruitment – a task which is achieved by detailed monitoring of projected researcher workload in relation to care home commitments and availability

The influence of care home managers on the implementation of a complex intervention: Findings from the process evaluation of a randomised controlled trial of Dementia Care Mapping

Background: Many people with dementia live in care homes, where staff can struggle to meet their complex needs. Successful practice improvement interventions in these settings require strong managerial support, but little is known about how managers can support implementation in practice, or what factors support or hinder care home managers in providing this support. Using Dementia Care Mapping™ (DCM) as an example, this study explored how care home managers can support the implementation of complex interventions, and identified factors affecting their ability to provide this support. Methods: We undertook interviews with 48 staff members (managers and intervention leads) from care homes participating in the intervention arm of the DCM EPIC trial of DCM implementation. Results: Managerial support played a key role in facilitating the implementation of a complex intervention in care home settings. Managers could provide practical and financial support in many forms. However, managerial support and leadership approaches towards implementation were highly variable in practice, and implementation was easily de-stabilised by management changes or competing managerial priorities. How well managers understood, valued and engaged with the intervention, alongside the leadership style they adopted to support implementation, were key influences on implementation success. Conclusions: For care home managers to effectively support interventions they must fully understand the proposed intervention and its potential value. This is especially important during times of managerial or practice changes, when managers lack the skills required to effectively support implementation, or when the intervention is complex. It may be unfeasible to successfully implement new interventions during times of managerial or practice instability

Cancer care for people with dementia: literature overview and recommendations for practice and research

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families

Gabapentin for tinnitus: a systematic review.

PURPOSE: The main aim of this study was to assess the effect of gabapentin on tinnitus via a systematic review. METHOD: An electronic search of literature as well as a hand search were conducted. Only double-blind randomized controlled trials (RCTs) that met all of the inclusion criteria were included in this review. The Cochrane Collaboration tool for risk of bias assessment was used to investigate the validity of the included studies. Meta-analysis was not appropriate due to inadequate details in reporting the data in the included studies. Hence, qualitative synthesis and interpretation of the data were carried out. RESULTS: Two studies that met the inclusion criteria were included in the review. Fourteen studies were excluded. There were substantive within-study clinical heterogeneities with regard to the baseline tinnitus handicap scores, duration of tinnitus, and severity of hearing loss in the included double-blind RCTs. CONCLUSION: The authors of both studies reported that gabapentin was not superior to placebo in their primary outcomes. However, following the assessment of risk of bias and within-study clinical heterogeneities, this review concludes that there is insufficient evidence regarding the effect of gabapentin on tinnitus

Effective dementia education and training for the health and social care workforce: A systematic review of the literature

Ensuring an informed and effective dementia workforce is of international concern, however there remains limited understanding of how this can be achieved. This systematic review aimed to identify factors associated with effective dementia educational programmes. Critical Interpretive Synthesis underpinned by Kirkpatrick’s return on investment model for evaluation of education was applied. One hundred and fifty-two papers of variable quality were included in the review. Common features of more efficacious educational programmes included the need for educational programmes to: be relevant to participants’ role and experience; involve active face-to-face participation; underpin practice-based learning with theory; be delivered by an experienced facilitator; have a total duration of at least eight hours with individual sessions of 90 minutes or more; support application of learning in practice; and provide a structured tool or practice guideline to underpin care practice. Further robust research is required to develop the evidence base; however, the findings of this review have relevance for all working in workforce education

Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations.

BACKGROUND: There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. METHODS AND FINDINGS: We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer's disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer's society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. LIMITATIONS: Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. INTERPRETATION: This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value. TRIAL REGISTRATION: PROSPERO no. CRD42015027346.GL was (in part) supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart’s Health NHS Trust. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. JTC is funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health