Clinical and cost-effectiveness of DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people living with dementia and their carers: a study protocol for a parallel multicentre randomised controlled trial.

INTRODUCTION: Many people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives' sleep disturbance leads to interruption of their sleep, low mood and breakdown of care. Our team developed and delivered DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives), a multimodal non-pharmacological intervention, showing it to be feasible and acceptable. The aim of this randomised controlled trial is to establish whether DREAMS START is clinically cost-effective in reducing sleep disturbances in people living with dementia living at home compared with usual care. METHODS AND ANALYSIS: We will recruit 370 participant dyads (people living with dementia and family carers) from memory services, community mental health teams and the Join Dementia Research Website in England. Those meeting inclusion criteria will be randomised (1:1) either to DREAMS START or to usual treatment. DREAMS START is a six-session (1 hour/session), manualised intervention delivered every 1-2 weeks by supervised, non-clinically trained graduates. Outcomes will be collected at baseline, 4 months and 8 months with the primary outcome being the Sleep Disorders Inventory score at 8 months. Secondary outcomes for the person with dementia (all proxy) include quality of life, daytime sleepiness, neuropsychiatric symptoms and cost-effectiveness. Secondary outcomes for the family carer include quality of life, sleep disturbance, mood, burden and service use and caring/work activity. Analyses will be intention-to-treat and we will conduct a process evaluation. ETHICS AND DISSEMINATION: London-Camden & Kings Cross Ethics Committee (20/LO/0894) approved the study. We will disseminate our findings in high-impact peer-reviewed journals and at national and international conferences. This research has the potential to improve sleep and quality of life for people living with dementia and their carers, in a feasible and scalable intervention. TRIAL REGISTRATION NUMBER: ISRCTN13072268.

Risk assessment for people living with dementia: a systematic review.

OBJECTIVE: This systematic review identified key components of risk assessment for people with dementia, examined attitudes toward risk identification and risk assessment, and appraised existing risk assessment tools. METHODS: Systematic searches of five databases on two platforms (EBSCO, OVID) and gray literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesized using thematic synthesis. RESULTS: Our review found people with dementia, their family carers, and healthcare professionals differed in how risk is conceptualized, with views being shaped by media perceptions, personal experiences, socio-cultural influences, dementia knowledge, and dementia severity. We found that mobilization (causing falls inside and getting lost outside) is the most frequently identified risk factor. Our findings show people with dementia are generally risk-tolerant, while healthcare professionals may adopt risk-averse approaches because of organizational requirements. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute toward adverse risk events. We discovered that most studies about risk and risk assessment scales did not consider insight of the person with dementia into risks although this is important for the impact of a risk. No risk instrument identified had sufficient evidence that it was useful. CONCLUSION: Accurate risk assessment and effective communication strategies that include the perspectives of people with dementia are needed to enable risk-tolerant practice. No risk instrument to date was shown to be widely acceptable and useful in practice.

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.

Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial.

BACKGROUND: The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. AIMS: To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. METHOD: We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. RESULTS: In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35). CONCLUSIONS: START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers. DECLARATIONS OF INTEREST: G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were 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 author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

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.

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.

START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants' views about the intervention.

OBJECTIVES: To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms. DESIGN: A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically. SETTING: Three mental health and one neurology dementia clinic in South East England. PARTICIPANTS: Participants were primary family carers of a patient diagnosed with dementia who provided support at least weekly to their relative. We invited those in the treatment group remaining in the START study at 2 years postrandomisation (n=132) to participate. 75 people, comprising a maximum variation sample, responded. PRIMARY AND SECONDARY OUTCOME MEASURES: (1) Important aspects of the therapy. (2) Continued use of the intervention after the end of the therapy. (3) Unhelpful aspects of the therapy and suggestions for improvement. (4) Appropriate time for intervention delivery. RESULTS: Carers identified several different components as important: relaxation techniques, education about dementia, strategies to help manage the behaviour of the person with dementia, contact with the therapist and changing unhelpful thoughts. Two-thirds of the participants reported that they continue to use the intervention's techniques at 2-year follow up. Few participants suggested changes to the intervention content, but some wanted more sessions and others wanted the involvement of more family members. Most were happy with receiving the intervention shortly after diagnosis, although some relatives of people with moderate dementia thought it should have been delivered at an earlier stage. CONCLUSIONS: Participants' varied responses about which aspects of START were helpful suggest that a multicomponent intervention is suited to the differing circumstances of dementia carers, providing a range of potentially helpful strategies. The continued use of the strategies 2 years after receiving the intervention could be a mechanism for the intervention remaining effective.

Improving the end-of-life for people with dementia living in a care home: an intervention study.

BACKGROUND: One in three adults, most of whom are living in a care home at the time, dies with dementia. Their end-of-life is often in hospital, where they may experience uncomfortable interventions without known benefit and die rapidly with uncontrolled pain and comfort needs. This study aimed to improve end-of-life care for people with dementia in a care home by increasing the number and implementation of advanced care wishes. METHODS: We recruited staff, residents with dementia, and their relatives from a 120-bed nursing home in London, UK. The intervention was a ten-session manualized, interactive staff training program. We compared advance care wishes documentation and implementation, place of death for residents who died, and themes from staff and family carers' after-death interviews pre- and post-intervention. RESULTS: Post-intervention there were significant increases in documented advance care wishes arising from residents' and relatives' discussions with staff about end-of-life. These included do not resuscitate orders (16/22, 73% vs. 4/28, 14%; p < 0.001); and dying in the care homes as opposed to hospital (22/29, 76% vs. 14/30, 47%; p < 0.02). Bereaved relatives overall satisfaction increased from 7.5 (SD = 1.3) pre-intervention to 9.1 (SD = 2.4) post-intervention; t = 17.6, p = 0.06. Relatives reported increased consultation and satisfaction about decisions. Staff members were more confident about end-of-life planning and implementing advanced wishes. CONCLUSION: This small non-randomized study is the first end-of-life care in dementia intervention to report an increase in family satisfaction with a reduction in hospital deaths. This is promising but requires further evaluation in diverse care homes.

Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes.

OBJECTIVE: The aim of this study is to examine barriers and facilitators to care home staff delivering improved end-of-life care for people with dementia. METHOD: Individual qualitative interviews of 58 staff in a 120-bed nursing home where the staff and the residents' religion differed were carried out. Interviews continued until a maximum variation sample was achieved and theoretical saturation was reached. RESULTS: The staff felt warmly towards the residents and felt they could recognise when they were near death. Care staff, nurses and doctors did not see themselves as a team and communicated poorly with relatives about approaching death. The staff used opaque euphemisms and worried about being blamed. They were often unaware of or had concerns about the validity of advance care plans. They knew of the religious rituals around death but frequently misunderstood religious tradition. CONCLUSION: The staff require education and support about discussing and implementing plans around care at the end of life in dementia and about cultural issues around death to improve practice. This would enable the staff to implement advance care plans, knowing that they will be supported. Education would encompass communicating the complicated, unpredictable path of dementia near the time of death explicitly but sensitively, including recognising that people often do not hear difficult messages and are unable to take on large quantities of information at once. The staff need to know about the resident's religious and cultural ideas as well as ritual practice.

Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK.

OBJECTIVE: To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers. DESIGN: Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews. SETTING: Community settings in London. PARTICIPANTS: 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews. RESULTS: Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity. CONCLUSIONS: The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.

Screening for elder abuse in dementia in the LASER-AD study: prevalence, correlates and validation of instruments.

BACKGROUND: Several studies have investigated abusive behaviour by carers towards people with dementia, most using unvalidated scales; only two reported correlates of abuse after controlling for mediators and confounders, and these controlled for different factors. OBJECTIVE: To investigate the acceptability and validity of the Modified Conflict Tactics Scale (MCTS) and abuse correlates. METHODS: Eighty-six people with Alzheimer's disease and their family carers, originally recruited for a representative community study were interviewed. We asked carers about acceptability of the MCTS and investigated its validity by comparing scores to the Minimum Data Set (MDS) abuse screen (an objective measure) and testing hypotheses that MCTS score would correlate with the COPE dysfunctional coping scale but not carer education. RESULTS: Twenty-four (27.9%) were identified as abuse cases by interview. No care recipients (CRs) screened positive for abuse using the MDS screen. Seventy-two (83.7%) participants thought that the scale was acceptable, ten (11.6%) that it was neither acceptable nor unacceptable, and three (3.5%) that it was unacceptable. As hypothesised, MCTS scores correlated with dysfunctional coping scale score but not carer education. CONCLUSIONS: This is the most comprehensive study so far in this field. The MCTS was acceptable and had convergent and discriminant validity for measuring carer abuse. The MDS failed to identify cases of abuse. Carer male gender and burden, and greater CR irritability, cognitive impairment but less functional impairment predicted carer abusive behaviour. Our findings appear to refute UK government elder abuse reduction policy which assumes that few incidents of abuse arise from carer stress.

A qualitative study of the views of residents with dementia, their relatives and staff about work practice in long-term care settings.

BACKGROUND: Most people living in 24-hour care settings have dementia, and little is known about what makes long-term care a positive experience for them. METHOD: This carer-led qualitative study examined working practices in 24-hour long-term care-settings, including hospitals, nursing and residential homes, with the aim of finding out and making recommendations about such settings. Using semi-structured interviews, managers, nurses and care assistants were asked about work practices, such as how they coped with difficult behavior, about shifts, staffing levels, staff retention and training. Relatives of residents with dementia were asked about their role and perceptions of the care provided, and residents were asked for their opinions of their care. RESULTS: Staff reported that residents presented with increasingly challenging behavior compared to the past, and that sometimes staffing levels and skills were inadequate. Of all the settings, hospitals had the most problems with staffing levels and retention, staff-relative relationships and staff support systems. Relatives saw their own role as positive. People with dementia of varying severity could usefully evaluate some of the services they received. DISCUSSION: Dementia-specific training and education of staff in all long-term care-settings, including induction, should address the management of problem behavior in dementia and thereby improve staff fulfilment and relatives' satisfaction. The long-stay hospital may not be appropriate as a "home for life" for those with dementia, and we recommend that long-stay care settings should be able to cater flexibly for a range of resident needs.

Slicing the health service cake: the Islington study.

BACKGROUND: Little is known about the factors that are associated with receipt of care in older people. This study aims to describe the pattern and predictors of service usage, by a representative sample of people aged 65 and over. METHOD: We assessed psychiatric and physical morbidity, formal and informal care and prescribed medication by standardized questionnaires. RESULTS: 1085 people were interviewed at home. Having dementia was a negative predictor of GP and hospital consultation (both P<0.001). Depressed participants were most likely to consult with GPs (P<0.05); 13.1% were on antidepressants. People with dementia use health services less than their counterparts. The presence of co-resident informal caregivers predicts less use of social services but no increase in health consultations. CONCLUSIONS: Carers give compensatory care rather than act as bridges to link people with dementia with the health care system. People with dementia need advocates. Older people with depression are high users of all services. They remain under-treated pharmacologically.

Islington study of dementia subtypes in the community.

BACKGROUND: Epidemiological studies of dementia subtypes have revealed widely varying distribution rates. There are almost no published community prevalence data for dementia with Lewy bodies (DLB) or the frontal lobe dementias (FLD). AIMS: To identify the distribution of dementia subtypes in a representative community population of older people. METHOD: People aged > or = 65 years in randomised enumeration districts in Islington, north London, were screened using a reliable and valid questionnaire. People screened as having dementia were assessed in detail and diagnoses were made according to standard diagnostic criteria. RESULTS: Of 1085 people interviewed, 107 (9.86%) met screening criteria for dementia. Diagnoses were made for 72 people (67.3%). Distribution of subtypes varied according to the criteria used; the best-validated criteria yielding: Alzheimer's disease 31.3%; vascular dementia 21.9%; DLB 10.9%; and FLD 7.8%. CONCLUSIONS: Alzheimer's disease is confirmed as the most common cause of dementia in older people, followed by vascular dementia. However, DLB and FLD occur sufficiently often to be seen frequently in clinical practice and should be incorporated into future editions of standard diagnostic criteria.

Aspectos clínicos e epidemiológicos da psoríase / Clinical and epidemiological aspects of psoriasis

Os autores apresentam aspectos clínicos e epidemiológicos da psoríase. Foram analisados, a partir de um questionário de 21 itens, as informaçöes referentes aos pacientes internados com a doença, nas enfermarias do Hospital Universitário da URFJ no período de 1978-84. Apurou-se entre outros resultados que a faixa etária mais acometida à internaçäo foi a de 41-50 anos. O início da doença predominou na quarta e quinta décadas. O sexo masculino foi o mais acometido (56.5%). A raça branca apresentou alta incidência da afecçäo (69.7%). Os aspectos referentes ao acometimento articular foram analisados em relaçäo à freqüência, distribuiçäo e concomitância do acometimento ungueal. Foi criado um Banco de Dados e como ferramenta de trabalho, utilizada a linguagem d-Base II

Síndrome de imunodeficiência adquirida: lesöes cutâneas / Acquired immunodeficiency syndrome: cutaneous lesions

Os autores fizeram um levantamento de 126 prontuários de pacientes internados nas enfermarias de Doenças Infecciosas e Parasitárias do Hospital Universitário C.F.F.-UFRJ e encontraram a candidose como manifestaçäo mais frequente - 44,44%, sífilis-18.25%, eczema seborréico-17,46% e sarcoma de Kaposi-14,28%. Apresentam outros dados de natureza epidemiológica sobre a doença

Ceratodermia marginal das palmas de Ramos e Silva / Ramos e Silva's marginal Keratodermia of the palms

Os autores apresentam um caso de ceratodermia marginal das palmas de Ramos e Silva, discutindo a sua provável etiopatogenia, destacando, como principais causas da afecçäo, a irradiaçäo solar a predisposiçäo individual