Long-term implementation of the Managing Agitation and Raising QUality of lifE intervention in care homes: A qualitative study

OBJECTIVES: The dementia care home workforce receive little specific training. There are successful interventions, improving care outcomes, but it is unclear whether or how to sustain these effects. The Managing Agitation and Raising Quality of Life (MARQUE) intervention aimed to train care home staffto reduce resident's agitation and improve their quality of life. It was designed for sustainability, with implementation plans agreed with managers. MARQUE improves quality of life. In this separate study, we aimed to examine implementation around two years later. METHODS: and design: We explored practice change since the intervention and considered current implementation of home specific action plans, enablers or barriers, and perceived benefits or harms of implementation using semi-structured interviews with staff working in the trial homes who received the MARQUE intervention. RESULTS: 6/10 intervention homes participated. We interviewed 25 staff, 20-30 months after the MARQUE study. In all homes, staff reported that at least one MARQUE component was sustained. Three themes emerged about sustained practice change: (i) communication, (ii) respect and understanding of roles, and (iii) ability to try new things. Notable changes included improved team working and feelings of competence, positive attitude to residents rather than blame for agitation and avoidance, and more pleasant activities. Leadership support was important. CONCLUSIONS: It is possible to sustain some change over years in care homes. This study indicates factors which help or impede. These factors individually and together could lead to long-term improved quality of life of residents in homes where it is implemented and sustained. This article is protected by copyright. All rights reserved

Becoming or remaining agitated: the course of agitation in people with dementia living in care homes: the English longitudinal Managing Agitation and Raising Quality of Life (MARQUE) study

Care home residents with dementia often have accompanying agitation. We investigated agitation’s course at 5 time-points in 1,424 people with dementia over 16 months in 86 English care homes. We categorized baseline agitation symptoms on the Cohen-Mansfield Agitation Inventory (CMAI) into none (CMAI = 29; 15%), subclinical (CMAI = 30–45; 45%), or clinically-significant (CMAI > 45; 40%). 88% of those with no agitation at baseline remained free of clinically-significant agitation at all follow-ups. Seventy percent of those exhibiting clinically-significant agitation at baseline had clinically-significant agitation at some follow-ups. Over a 16-month observation period, this study finds many care home residents with dementia never develop clinically significant agitation and interventions should be for treatment not prevention

A guide to research with care homes

Purpose - A growing older population with complex care needs, including dementia, are living in care homes. It is important to support researchers in conducting ethical and appropriate work in this complex research environment. The purpose of this paper is to discuss key issues in care homes research including examples of best practice. The intention is to inform researchers across disciplines, leading to more sensitive and meaningful care home research practice. Design/methodology/approach - Experienced care homes researchers were invited to provide methodological insights and details not already reported in their publications. These have been analysed, creating key themes and linked to project publications. Findings - The need for reflexivity was a key finding. In particular, researchers need to: appreciate that the work is complex; see participants as potential research partners; and consider how cognitive and physical frailty of residents, staffing pressures and the unique environments of care homes might impact upon their research. Other challenges include recruitment and consenting people who lack mental capacity. Research limitations/implications - As the care homes research landscape continues to develop and grow, there still remains limited reflection and discussion of methodological issues with a need for a "safe space" for researchers to discuss challenges. Originality/value - This review is an updated methodological guide for care homes researchers, also highlighting current gaps in the mechanisms for continuing to share best research practice

Agitation near the end of life with dementia: An ethnographic study of care

Background and objectives Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care. Research design Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as “structured observations”) of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017. Methods Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate. Results We identified two main ‘ideal types’ of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person’s “moral judgement”, making them prone to rejecting or punitive responses. In the second staff adopt a more “needs-based” approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values. Conclusions Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected

Development, feasibility, and acceptability of an intervention to improve care for agitation in people living in nursing homes with dementia nearing the end-of-life

OBJECTIVES: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted. DESIGN: Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups. SETTING: Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location. PARTICIPANTS: Residents with a dementia diagnosis or scoring ≥2 on the Noticeable Problems Checklist, rated as "severe" on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses). INTERVENTION: Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework. MEASUREMENTS: Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident's agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers' views on the intervention. RESULTS: The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended ≥3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful. CONCLUSIONS: The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted

Carer coping and resident agitation as predictors of quality of life in care home residents living with dementia: Managing Agitation and Raising Quality of Life (MARQUE) English national care home prospective cohort study

OBJECTIVES: The objectives of the study are (1) to test our primary hypothesis that carers using more dysfunctional coping strategies predict lower quality of life in care home residents living with dementia, and this is moderated by levels of resident agitation, and (2) to explore relationships between carer dysfunctional coping strategy use, agitation, quality of life, and resident survival. METHODS: In the largest prospective cohort to date, we interviewed carers from 97 care home units (baseline, 4, 8, 12, 16 months) about quality of life (DEMQOL-Proxy) and agitation (Cohen-Mansfield Agitation Inventory) of 1483 residents living with dementia. At baseline, we interviewed 1566 carers about coping strategies (Brief COPE), averaging scores across care home units. RESULTS: Carer dysfunctional coping strategies did not predict resident quality of life over 16 months (0.03, 95% CI -0.40 to 0.46). Lower resident quality of life was longitudinally associated with worse Cohen-Mansfield Agitation Inventory score (-0.25, 95% CI -0.26 to -0.23). Survival was not associated with carer dysfunctional coping, resident quality of life, or agitation scores. CONCLUSIONS: Carer dysfunctional coping did not predict resident quality of life. Levels of resident agitation were consistently high and related to lower quality of life, over 16 months. Lack of association between carer dysfunctional coping and resident quality of life may reflect the influence of the care home or an insensitivity of aggregated coping strategy scores. The lack of relationship with survival indicates that agitation is not explained mainly by illness. Scalable interventions to reduce agitation in care home residents living with dementia are urgently needed

Clinical and cost-effectiveness of the Managing Agitation and Raising Quality of Life (MARQUE) intervention for agitation in people with dementia in care homes: a single-blind, cluster-randomised controlled trial

BACKGROUND: Many people with dementia living in care homes have distressing and costly agitation symptoms. Interventions should be efficacious, scalable, and feasible. METHODS: We did a parallel-group, cluster-randomised controlled trial in 20 care homes across England. Care homes were eligible if they had 17 residents or more with dementia, agreed to mandatory training for all eligible staff and the implementation of plans, and more than 60% of eligible staff agreed to participate. Staff were eligible if they worked during the day providing face-to-face care for residents with dementia. Residents were eligible if they had a known dementia diagnosis or scored positive on screening with the Noticeable Problems Checklist. A statistician independent of the study randomised care homes (1:1) to the Managing Agitation and Raising Quality of Life (MARQUE) intervention or treatment as usual (TAU) using computer-generated randomisation in blocks of two, stratified by type of home (residential or nursing). Care home staff were not masked to the intervention but were asked not to inform assessors. Residents with dementia, family carers, outcome assessors, statisticians, and health economists were masked to allocation until the data were analysed. MARQUE is an evidence-based manualised intervention, delivered by supervised graduate psychologists to staff in six interactive sessions. The primary outcome was agitation score at 8 months, measured using the Cohen-Mansfield Agitation Inventory (CMAI). Analysis of the primary outcome was done in the modified intention-to-treat population, which included all randomly assigned residents for whom CMAI data was available at 8 months. Mortality was assessed in all randomly assigned residents. This study is registered with the ISRCTN registry, number ISRCTN96745365. FINDINGS: Between June 14, 2016, and July 4, 2017, we randomised ten care homes (189 residents) to the MARQUE intervention and ten care homes (215 residents) to TAU. At 8 months, primary outcome data were available for 155 residents in the MARQUE group and 163 residents in the TAU group. At 8 months, no significant differences in mean CMAI scores were identified between the MARQUE and TAU groups (adjusted difference -0·40 [95% CI -3·89 to 3·09; p=0·8226]). In the intervention care homes, 84% of all eligible staff completed all sessions. The mean difference in cost between the MARQUE and TAU groups was £204 (-215 to 623; p=0·320) and mean difference in quality-adjusted life-years was 0·015 (95% CI -0·004 to 0·034; p=0·127). At 8 months, 27 (14%) of 189 residents in the MARQUE group and 41 (19%) of 215 residents in the TAU group had died. The prescription of antipsychotic drugs was not significantly different between the MARQUE group and the TAU group (odds ratio 0·66; 95% CI 0·26 to 1·69, p=0·3880). INTERPRETATION: The MARQUE intervention was not efficacious for agitation although feasible and cost-effective in terms of quality of life. Addressing agitation in care homes might require resourcing for delivery by professional staff of a more intensive intervention, implementing social and activity times, and a longer time to implement change. FUNDING: UK Economic and Social Research Council and the National Institute of Health Research

Neuromarketing and consumer neuroscience:contributions to neurology

Background: 'Neuromarketing' is a term that has often been used in the media in recent years. These public discussions have generally centered around potential ethical aspects and the public fear of negative consequences for society in general, and consumers in particular. However, positive contributions to the scientific discourse from developing a biological model that tries to explain context-situated human behavior such as consumption have often been neglected. We argue for a differentiated terminology, naming commercial applications of neuroscientific methods 'neuromarketing' and scientific ones 'consumer neuroscience'. While marketing scholars have eagerly integrated neuroscientific evidence into their theoretical framework, neurology has only recently started to draw its attention to the results of consumer neuroscience.Discussion: In this paper we address key research topics of consumer neuroscience that we think are of interest for neurologists; namely the reward system, trust and ethical issues. We argue that there are overlapping research topics in neurology and consumer neuroscience where both sides can profit from collaboration. Further, neurologists joining the public discussion of ethical issues surrounding neuromarketing and consumer neuroscience could contribute standards and experience gained in clinical research.Summary: We identify the following areas where consumer neuroscience could contribute to the field of neurology:. First, studies using game paradigms could help to gain further insights into the underlying pathophysiology of pathological gambling in Parkinson's disease, frontotemporal dementia, epilepsy, and Huntington's disease.Second, we identify compulsive buying as a common interest in neurology and consumer neuroscience. Paradigms commonly used in consumer neuroscience could be applied to patients suffering from Parkinson's disease and frontotemporal dementia to advance knowledge of this important behavioral symptom.Third, trust research in the medical context lacks empirical behavioral and neuroscientific evidence. Neurologists entering this field of research could profit from the extensive knowledge of the biological foundation of trust that scientists in economically-orientated neurosciences have gained.Fourth, neurologists could contribute significantly to the ethical debate about invasive methods in neuromarketing and consumer neuroscience. Further, neurologists should investigate biological and behavioral reactions of neurological patients to marketing and advertising measures, as they could show special consumer vulnerability and be subject to target marketing

Managing agitation and raising quality of life (MARQUE) qualitative interviews

These data are 22 semi-structured interviews with health care professionals in both hospital and care home setting focusing on dementia care. Caring for people living with severe dementia was the focus. The aim of the research to enhance our understanding of agitation in people with dementia who may also be unwell. Interviews show how staff interpret agitation in people nearing the end of life, how this impacted on how they responded and on the quality of care received by the individual. Data were gathered using a semi-structured interview schedule, all face-to-face at their place of work

Managing agitation and raising quality of life: semi structured interviews with family carers of people living with dementia

18 face-to-face semi-structured interviews with family carers of people living with moderate to severe dementia still living at home. Respondents were asked to describe their experiences of caring for the person living with dementia and especially coping around agitation or distress behaviours. 11 respondents had a spousal relationship with the person living with dementia; 6 were children or children-in-laws; and 1 was a sibling. The age range of respondents is 35 to 84 years old. 14 recorded their ethnicity as white, one as Asian, three as black. 11 respondents were women. Two had been caring for the person living with dementia for more than 10 years; 6 for 1-3 years; 4 for 5-10 years; and 4 for 3- 5 years. 2 had been carers for less than a year at the time of interviewing. Interview schedule: Looking back, when did you first notice the signs of the memory problems? So, how were things ok before that? How have you found the experience of caring for …….? Was there any help or support available to you at those times? Could you tell me a bit/ a bit more about situations related to your relative/friend’s symptoms of agitation and dementia? When did your relative/friend start to show symptoms of agitation? How did this affect your experience as a carer What symptoms of agitation did you observe? What was it like for you? What was it like for your relative/friend? Were/ are there any particular ways you dealt/ deal with your experiences of agitated behaviour then/ now? Did you seek any help for managing the agitated behaviour? Looking back how do you feel about the episodes of agitated behaviour that occurred? Do you have any advice that you could give to people going through the same difficulties? Is there anything else that you want to mention about how you coped with your relative/friend’s agitation