Self-reported sleep fragmentation and sleep duration and their association with cognitive function in PROTECT, a large digital community-based cohort of people over 50.

OBJECTIVE: Sleep is vital for normal cognitive function in daily life, but is commonly disrupted in older adults. Poor sleep can be detrimental to mental and physical health, including cognitive function. This study assessed the association between self-reported short (<6 h) and long (>9 h) sleep duration and sleep fragmentation (3≥ nightly awakenings) in cognitive function. METHODS: Cross-sectional data from 8508 individuals enroled in the PROTECT study aged 50 and above formed the basis of the univariate linear regression analysis conducted on four cognitive outcomes assessing visuospatial episodic memory (VSEM), spatial working memory, verbal working memory (VWM), and verbal reasoning (VR). RESULTS: Short (ß = -0.153, 95% CI [-0.258, -0.048], p = 0.004) and long sleep duration (ß = -0.459, 95% CI [-0.826, -0.091], p = 0.014) were significantly associated with poorer cognitive performance in VWM. Long sleep duration (ß = -2.986, 95% CI [-5.453, -0.518], p = 0.018) was associated with impaired VR. Short sleep (ß = -0.133, 95% CI [-0.196, -0.069], p = <0.001) and sleep fragmentation (ß = -0.043, 95% CI [-0.085, -0.001], p = 0.043) were associated with reduced VSEM. These associations remained significant when including other established risk factors for dementia and cognitive decline (e.g., depression, hypertension). CONCLUSIONS: Our findings suggest that short and long sleep durations and fragmented sleep, may be risk factors for a decline in cognitive processes such as working memory, VR and episodic memory thus might be potential targets for interventions to maintain cognitive health in ageing.

The association between aspects of carer distress and time until nursing home admission in persons with Alzheimer's disease and dementia with Lewy bodies.

OBJECTIVE: The aim of this study was to explore the association between specific aspects of carer distress and time until nursing home admission (NHA) in people with mild dementia. DESIGN: Prospective cohort study. SETTING: Participants were recruited from the Dementia Study of Western Norway (DemVest). PARTICIPANTS: This study included 107 participants admitted to a nursing home who were diagnosed with Alzheimer's disease (AD, n = 64) and dementia with Lewy bodies (DLB, n = 43) and their primary carers. MEASUREMENTS: The Relative Stress Scale (RSS) was used to assess the level of reported distress in carers. Adjusted partial least square (PLS) prediction analysis of baseline items of the RSS was used to study the associations between individual items of the RSS and time until NHA. RESULTS: Carer distress is an important contributor to early NHA, explaining 19.3% of the total variance of time until NHA in the model without covariates. In the adjusted PLS model, the most important RSS predictors of time until NHA were feeling frustrated (estimate = -137; CI, -209, -64.5), having limitations on social life (estimate = -118; CI, -172, -64), not being able to get away on vacation (estimate -116; CI, -158.3, -73.7), and feeling unable to cope with the situation (estimate = -63; CI, -122.6, -3.4). CONCLUSIONS: Preservation of the informal care capacity represents important steps for improving the management of resources in dementia care. This study identifies aspects of carer distress associated with a shorter time until NHA. Looking beyond the sum score of the RSS helps promote the development of flexible and tailored interventions and perhaps delay NHA.

Loneliness, physical activity, and mental health during COVID-19: a longitudinal analysis of depression and anxiety in adults over the age of 50 between 2015 and 2020.

OBJECTIVE: Loneliness and physical activity are important targets for research into the impact of COVID-19 because they have established links with mental health, could be exacerbated by social distancing policies, and are potentially modifiable. In this study, we aimed to identify whether loneliness and physical activity were associated with worse mental health during a period of mandatory social distancing in the UK. DESIGN: Population-based observational cohort study. SETTING: Mental health data collected online during COVID-19 from an existing sample of adults aged 50 and over taking part in a longitudinal study of aging. All had comparable annual data collected between 2015 and 2019. PARTICIPANTS: Three-thousand two-hundred and eighty-one participants aged 50 and over. MEASUREMENTS: Trajectories of depression (measured by PHQ-9) and anxiety (measured by GAD-7) between 2015 and 2020 were analyzed with respect to loneliness, physical activity levels, and a number of socioeconomic and demographic characteristics using zero-inflated negative binomial regression. RESULTS: In 2020, PHQ-9 score for loneliness, adjusted for covariates, was 3.23 (95% CI: 3.01-3.44), an increase of around 1 point on all previous years in this group and 2 points higher than people not rated lonely, whose score did not change in 2020 (1.22, 95% CI: 1.12-1.32). PHQ-9 was 2.60 (95% CI: 2.43-2.78) in people with decreased physical activity, an increase of .5 on previous years. In contrast, PHQ-9 in 2020 for people whose physical activity had not decreased was 1.66, 95% CI: 1.56-1.75, similar to previous years. A similar relationship was observed for GAD-7 though the absolute burden of symptoms lower. CONCLUSION: After accounting for pre-COVID-19 trends, we show that experiencing loneliness and decreased physical activity are risk factors for worsening mental health during the pandemic. Our findings highlight the need to examine policies which target these potentially modifiable risk factors.

Self-management and HeAlth Promotion in Early-stage dementia with e-learning for carers (SHAPE): study protocol for a multi-centre randomised controlled trial.

BACKGROUND: With an increasing number of people with dementia worldwide and limited advancement in medical treatments, the call for new and cost-effective approaches is crucial. The utility of self-management has been proven in certain chronic conditions. However, very little work has been undertaken regarding self-management in people with dementia. METHODS: The SHAPE trial will include 372 people with mild to moderate dementia to evaluate the effectiveness and cost-effectiveness of an educational programme combining approaches of self-management, health promotion, and e-learning for care partners. The study is a multi-site, single-randomised, controlled, single-blinded trial with parallel arms. The intervention arm is compared with treatment as usual. The intervention comprises a 10-week course delivered as group sessions for the participants with dementia. The sessions are designed to develop self-management skills and to provide information on the nature of the condition and the development of healthy behaviours in a supportive learning environment. An e-learning course will be provided for care partners which covers similar and complementary material to that discussed in the group sessions for the participant with dementia. DISCUSSION: This trial will explore the effect of the SHAPE group intervention on people with mild to moderate dementia in terms of self-efficacy and improvement in key health and mental health outcomes and cost-effectiveness, along with carer stress and knowledge of dementia. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04286139, registered prospectively February 26, 2020, https://clinicaltrials.gov/ct2/show/NCT04286139.

Health Care Personnel's Perspective on Potential Electronic Health Interventions to Prevent Hospitalizations for Older Persons Receiving Community Care: Qualitative Study.

BACKGROUND: The use of electronic health (eHealth) interventions is suggested to help monitor and treat degenerative and chronic diseases through the use of sensors, alarms, and reminders and can potentially prevent hospitalizations for home-dwelling older persons receiving community care. It is increasingly recognized that the health care personnel's acceptance of a technological application remains a key challenge in adopting an intervention, thus interventions must be perceived to be useful and fit for purpose by the actual users. OBJECTIVE: The aim of this study was to identify and explore the perspectives of managers and health care personnel in community care regarding the use of eHealth interventions in terms of prevention of hospitalizations for home-dwelling older persons receiving community care. METHODS: A case study with a qualitative approach was carried out in community care in a Norwegian municipality, comprising individual interviews and focus group interviews. A total of 5 individual interviews and 2 focus group interviews (n=12) were undertaken to provide the health care personnel's and managers' perspective regarding the use of eHealth interventions, which could potentially prevent hospitalizations for home-dwelling older persons receiving community care. Data were analyzed by way of systematic text condensation, as described by Malterud. RESULTS: The data analysis of focus group interviews and individual interviews resulted in 2 categories: potential technological applications and potential patient groups. Discussions in the focus groups generated several suggestions and wishes related to technical applications that they could make use of in their day-to-day practice. The health care personnel warranted tools and measures to enhance and document their clinical observations in contact with patients. They also identified patient groups, such as patients with chronic obstructive pulmonary disease or dehydration or urinary tract infections, for whom hospitalizations could potentially have been prevented. CONCLUSIONS: We have shown that the health care personnel in community care warrant various technological applications that have the potential to improve quality of care and resource utilization in the studied municipality. We have identified needs and important matters in practice, which are paramount for acceptance and adoption of an intervention in community care.

"We should see her like part of the team": an investigation into care home staff's experiences of being part of an RCT of a complex psychosocial intervention.

Objectives: To contribute to improvements in the design and delivery of intervention research in care homes by adopting a collaborative approach that listens to the experiences of care home staff who had participated in a clinical trial aimed at optimising and evaluating a psychosocial intervention package for people with dementia.Methods: Qualitative study involving focus group discussions (FGDs) involving 41 staff across 6 care homes with the UK. Inductive thematic analysis was used to identify themes and interpret the data.Results: Three overarching themes emerged as influential: Recognising preparedness; working together and learning more than expected. The findings highlighted the need to be attentive in addressing staff expectations, the value of sustained relationships and recognition of good practice. The FGDs also identified areas of unanticipated learning that staff and managers adopted.Conclusions: The FGDs showed the importance of considering the overall experience of care home staff who are involved in research and the importance of valuing the skills and experience they hold through positive affirmation. There are often unanticipated consequences of research involvement both on staff practice and on relationships which if promoted could help sustain effective ways of working together.

The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress.

OBJECTIVE: Neuropsychiatric symptoms (NPSs) are identified as important care-recipient variables in terms of the impact on carer distress. The aim of this study was to determine whether specific neuropsychiatric disturbances in people with Alzheimer disease (AD) and dementia with Lewy bodies (DLB) differentially impact carer distress. METHODS: This was a cross-sectional study of people diagnosed with AD and DLB and their primary carers. The Relatives' Stress Scale (RSS) was used to assess the level of reported distress in carers, and the Neuropsychiatric Inventory (NPI) was used to assess NPSs. The effect of NPSs on carer distress was analyzed using correlation analysis and partial least squares regression. RESULTS: This study included 159 participants diagnosed with AD (n = 97) and DLB (n = 62) and their primary carers (spouses and adult children). The majority of people diagnosed with dementia were women (64.2%), with a mean age of 75.9 years (SD, 7.4) and a mean Mini-Mental State Examination (MMSE) score of 23.5 (SD, 2.9). The main analysis identified apathy as the most important NPS contributing to carer distress. Compared with AD, the explained variance in the DLB group was higher (r2  = 37.3 vs r2  = 53.7). In addition, more NPSs were considered clinically important in the DLB group. CONCLUSION: The findings of this study identify apathy as the most important NPS contributing to carer distress among carers of people with AD and DLB. These findings help us identify the support needs of families dealing with dementia.

What influences the sustainability of an effective psychosocial intervention for people with dementia living in care homes? A 9 to 12-month follow-up of the perceptions of staff in care homes involved in the WHELD randomised controlled trail.

OBJECTIVES: The study aims to understand the factors that care home staff felt enabled or hindered them in continuing to use the well-being and health for people with dementia (WHELD) psychosocial approach in their care home and investigate whether there was sustained activity 9 to 12 months after the study ended. METHODS: This qualitative study is part of a wider clinical trial, which demonstrated effectiveness of a psychosocial intervention on quality of life outcomes and neuropsychiatric symptoms for residents. Forty-seven care home staff within nine care homes in the United Kingdom participated in focus groups, between 9 and 12 months after the intervention had finished. Inductive thematic analysis was used to identify themes and interpret the data. RESULTS: The findings highlighted that staff continued to use a range of activities and processes acquired through the research intervention, after the study had ended. Three overarching themes were identified as influential: "recognising the value" of the approach for residents and staff, "being well practiced" with sufficient support and opportunity to consolidate skills prior to the withdrawal of the researchers, and "taking ownership of the approach" to incorporate it as usual care. CONCLUSIONS: The WHELD approach can be sustained where the value of the approach is recognised, and sufficient support is provided during initial implementation for staff to build skills and confidence for it to become routine care. Further follow-up is required to understand longer term use and the impact for residents.

Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial.

BACKGROUND: Agitation is a common, challenging symptom affecting large numbers of people with dementia and impacting on quality of life (QoL). There is an urgent need for evidence-based, cost-effective psychosocial interventions to improve these outcomes, particularly in the absence of safe, effective pharmacological therapies. This study aimed to evaluate the efficacy of a person-centred care and psychosocial intervention incorporating an antipsychotic review, WHELD, on QoL, agitation, and antipsychotic use in people with dementia living in nursing homes, and to determine its cost. METHODS AND FINDINGS: This was a randomised controlled cluster trial conducted between 1 January 2013 and 30 September 2015 that compared the WHELD intervention with treatment as usual (TAU) in people with dementia living in 69 UK nursing homes, using an intention to treat analysis. All nursing homes allocated to the intervention received staff training in person-centred care and social interaction and education regarding antipsychotic medications (antipsychotic review), followed by ongoing delivery through a care staff champion model. The primary outcome measure was QoL (DEMQOL-Proxy). Secondary outcomes were agitation (Cohen-Mansfield Agitation Inventory [CMAI]), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version [NPI-NH]), antipsychotic use, global deterioration (Clinical Dementia Rating), mood (Cornell Scale for Depression in Dementia), unmet needs (Camberwell Assessment of Need for the Elderly), mortality, quality of interactions (Quality of Interactions Scale [QUIS]), pain (Abbey Pain Scale), and cost. Costs were calculated using cost function figures compared with usual costs. In all, 847 people were randomised to WHELD or TAU, of whom 553 completed the 9-month randomised controlled trial. The intervention conferred a statistically significant improvement in QoL (DEMQOL-Proxy Z score 2.82, p = 0.0042; mean difference 2.54, SEM 0.88; 95% CI 0.81, 4.28; Cohen's D effect size 0.24). There were also statistically significant benefits in agitation (CMAI Z score 2.68, p = 0.0076; mean difference 4.27, SEM 1.59; 95% CI -7.39, -1.15; Cohen's D 0.23) and overall neuropsychiatric symptoms (NPI-NH Z score 3.52, p < 0.001; mean difference 4.55, SEM 1.28; 95% CI -7.07,-2.02; Cohen's D 0.30). Benefits were greatest in people with moderately severe dementia. There was a statistically significant benefit in positive care interactions as measured by QUIS (19.7% increase, SEM 8.94; 95% CI 2.12, 37.16, p = 0.03; Cohen's D 0.55). There were no statistically significant differences between WHELD and TAU for the other outcomes. A sensitivity analysis using a pre-specified imputation model confirmed statistically significant benefits in DEMQOL-Proxy, CMAI, and NPI-NH outcomes with the WHELD intervention. Antipsychotic drug use was at a low stable level in both treatment groups, and the intervention did not reduce use. The WHELD intervention reduced cost compared to TAU, and the benefits achieved were therefore associated with a cost saving. The main limitation was that antipsychotic review was based on augmenting processes within care homes to trigger medical review and did not in this study involve proactive primary care education. An additional limitation was the inherent challenge of assessing QoL in this patient group. CONCLUSIONS: These findings suggest that the WHELD intervention confers benefits in terms of QoL, agitation, and neuropsychiatric symptoms, albeit with relatively small effect sizes, as well as cost saving in a model that can readily be implemented in nursing homes. Future work should consider how to facilitate sustainability of the intervention in this setting. TRIAL REGISTRATION: ISRCTN Registry ISRCTN62237498.

Current practice and challenges in night-time care for people with dementia living in care homes: a qualitative study.

OBJECTIVE: To explore the current practices and challenges in night-time care for people with dementia living in care homes in the UK. METHODS: Focus group discussions (FGD) were held with care staff and family carers from five care homes in South London. To supplement the FGD data, an online survey was circulated to family carers (n = 16), and informal interviews were conducted with night-time care staff and nurses (n = 19). The questions for the online survey were designed to specifically explore the themes that emerged from the FGD. RESULTS: Thematic analysis revealed eight key themes in the management of sleep disturbance in people with dementia living in care homes: current night-time care practices, dissonance in perceived causes of sleep disturbances, inconsistencies in treatment options, insufficient staffing levels, working relationships between shifts, nurse burden and responsibility, communication as a critical challenge, connecting with residents and one overarching theme of balance. CONCLUSIONS: The findings of this study highlight the need for an evidence-based sleep disturbance management programme designed for use in care homes and informed by stakeholders. The key themes identified represent the major barriers to good quality care and areas which future programmes will need to address to improve the quality of night-time care in care homes. There are clearly opportunities for future examination of non-pharmacological night-time care management programmes for use in the population. Copyright © 2017 John Wiley & Sons, Ltd.

Patterns of carer distress over time in mild dementia.

OBJECTIVE: To study the level of carer reported distress in mild dementia, over a 3-year period. METHODS: This study is part of the Norwegian DemVest-study and utilises data from carers of people with mild dementia (n = 223). Those diagnosed with dementia with Lewy bodies (DLB, n = 63) and Alzheimer's disease (AD, n = 97) were included together with other dementia types (n = 63). The Relatives' Stress Scale was used to assess the level of reported distress in carers. Descriptive and a linear mixed effects models including diagnosis, time, and the interaction between time and diagnosis were performed. RESULTS: Carer distress in mild dementia increased significantly over time (P = 0.011), particularly from baseline until 2 (P = 0.001) years follow-up. Carer distress in people caring for those with AD increased significantly, from baseline until 2 (P = 0.047) and 3 (P = 0.019) years follow-up. Distress in carers of people with DLB was high at baseline and remained relatively stable across the 3-year period. However, admission to a nursing home during the first year of follow-up was associated with a significantly lower reported carer distress in those caring for a person with DLB (P = 0.002), compared with those caring for a person with DLB living at home. CONCLUSION: Being a carer to a person with mild dementia is associated with increasing distress. However, the burden of distress changes with the diagnosis, time, and situation, which highlights the dynamic nature of the caring role. Findings have important implications for health services for people diagnosed with mild dementia and their carers.

Feasibility of a staff training and support programme to improve pain assessment and management in people with dementia living in care homes.

OBJECTIVES: The objective of this study was to establish the feasibility and initial effectiveness of training and support intervention for care staff to improve pain management in people with dementia living in care homes (PAIN-Dem). METHODS: PAIN-Dem training was delivered to care staff from three care homes in South London, followed by intervention support and resources to encourage improved pain management by staff over 4 weeks. Feasibility was assessed through fidelity to intervention materials and qualitative approaches. Focus group discussions with staff explored the use of the PAIN-Dem intervention, and interviews were held with six residents and family carers. Pain was assessed in all residents at baseline, 3 and 4 weeks, and goal attainment scaling was assessed at 4 weeks. RESULTS: Delivery of training was a key driver for success and feasibility of the PAIN-Dem intervention. Improvements in pain management behaviour and staff confidence were seen in homes where training was delivered in a care home setting across the care team with good manager buy-in. Family involvement in pain management was highlighted as an area for improvement. Goal attainment in residents was significantly improved across the cohort, although no significant change in pain was seen. CONCLUSIONS: This study shows good initial feasibility of the PAIN-Dem intervention and provides valuable insight into training and support paradigms that deliver successful learning and behaviour change. There is a need for a larger trial of PAIN-Dem to establish its impact on resident pain and quantifiable staff behaviour measures. Copyright © 2017 John Wiley & Sons, Ltd.

Person-centered care in Norwegian nursing homes and its relation to organizational factors and staff characteristics: a cross-sectional survey.

ABSTRACTBackground:Person-centered care (PCC) is regarded as good quality care for persons with dementia. This study aimed to explore and understand the association between PCC and organizational, staff and unit characteristics in nursing homes (NHs). METHODS: Staff from 175 NH units in Norway (n = 1,161) completed a survey, including measures of PCC and questions about staff characteristics and work-related psychosocial factors. In addition, data about organizational and structural factors and assessment of the physical environment in the units were obtained. The distribution of these factors in regular units (RUs) and special care units (SCUs) is described, and the differences between the two types of units are analyzed. Furthermore, multilevel linear regression analyses explored the extent to which variables were associated with PCC. RESULTS: Higher levels of PCC were associated with a greater job satisfaction, three years or more of health-related education, a lower level of quantitative demands and role conflict, a higher level of perception of mastery, empowering leadership, innovative climate and perception of group work, in addition to the type of unit and the physical environment in the NH unit designed for people with dementia. SCU and staff job satisfaction explained most of the variation in PCC. CONCLUSION: This study shows an association between PCC and organizational, staff and unit characteristics in NH. These findings indicate that providing PCC in NH care is closely linked to how the staff experiences their job situation in addition to both organizational and structural factors and the physical environment. Attention needs to be given to such factors when planning NH care.

Characteristics and predictors for hospitalizations of home-dwelling older persons receiving community care: a cohort study from Norway.

BACKGROUND: Older persons are substantial consumers of both hospital- and community care, and there are discussions regarding the potential for preventing hospitalizations through high quality community care. The present study report prevalence and factors associated with admissions to hospital for community-dwelling older persons (> 67 years of age), receiving community care in a Norwegian municipality. METHODS: This was a cohort study of 1531 home-dwelling persons aged ≥67 years, receiving community care. We retrospectively scrutinized admissions to hospital for the study cohort over a one-year period in 2013. The frequency of admissions was evaluated with regard to association with age (age groups 67-79 years, 80-89 years and ≥ 90 year) and gender. The hospital admission incidence was calculated by dividing the number of admissions by the number of individuals included in the study cohort, stratified by age and gender. The association between age and gender as potential predictors and hospitalization (outcome) was first examined in univariate analyses followed by multinomial regression analyses in order to investigate the associations between age and gender with different causes of hospitalization. RESULTS: We identified a total of 1457 admissions, represented by 739 unique individuals, of which 64% were women, and an estimated mean age of 83 years. Mean admission rate was 2 admissions per person-year (95% confidence interval (CI): 1.89-2.11). The admission rate varied with age, and hospital incidents rates were higher for men in all age groups. The overall median length of stay was 4 days. The most common reason for hospitalization was the need for further medical assessment (23%). We found associations between increasing age and hospitalizations due to physical general decline, and associations between male gender and hospitalizations due to infections (e.g., airways infections, urinary tract infections). CONCLUSIONS: We found the main reasons for hospitalizations to be related to falls, infections and general decline/pain/unspecified dyspnea. Men were especially at risk for hospitalization as they age. Our study have identified some clinically relevant factors that are vital in understanding what health care personnel in community care need to be especially aware of in order to prevent hospitalizations for this population.

Porcelain for All - a nursing home study.

PURPOSE: The Porcelain for All project was an initiative by Figgjo AS, a porcelain factory in Norway, which needed more research on different coloured porcelains. The paper aims to discuss this issue. DESIGN/METHODOLOGY/APPROACH: The study aimed to gain new knowledge about how different décor and dinner plate colours can positively influence dementia sufferer food intake and appetite. The intervention period lasted three weeks. Four days were randomly picked during that period. Each plate was photographed before and after the resident had eaten, researchers conducted observations during mealtimes. Two CurroCus® group interviews were used to collect additional empirical data. In total, 12 dementia sufferers (five females) between 65 and 85 years were observed during dinnertime. FINDINGS: Plates with a white well, yellow lip and red rim seemed to be preferred regarding food intake. Three main categories were noted from the observations and group interviews: mealtime dignity, porcelain design and appetite. RESEARCH LIMITATIONS/IMPLICATIONS: Future research could incorporate well-being in people with dementia regarding food weight, testing different meal room environments, user involvement, food presentation and should include more nursing homes and residents. PRACTICAL IMPLICATIONS: This study only encompasses a small sample (12 residents), all diagnosed with dementia. SOCIAL IMPLICATIONS: Outcomes may help to prevent undernutrition among elderly people. ORIGINALITY/VALUE: Combined coloured porcelain, food intake and residents with dementia is scarcely investigated.

The relationship of specific items on the Neuropsychiatric Inventory to caregiver burden in dementia: a systematic review.

OBJECTIVE: Neuropsychiatric symptoms (NPSs) are common in dementia, and they have been identified as important care-recipient variables in terms of their impact on caregiver burden. The aim of this review was to describe how individual NPSs in dementia, assessed using the Neuropsychiatric Inventory, are associated with caregiver burden. METHODS: We performed a systematic review of English language, peer-reviewed articles retrieved from MEDLINE, PSYCINFO, and EMBASE. RESULTS: A total of 13 studies met the inclusion criteria. Four studies examined the association between individual NPSs and caregiver burden using the Spearman rank correlation test, while three used Pearson's correlation test. Of the remaining studies, five used multiple regression analyses and one the chi-squared test. The majority of included studies did not differentiate between dementia subtypes in the analysis or mainly included only caregivers of people with Alzheimer's disease. The Clinical Dementia Rating score and mean Mini-Mental State Examination score indicate mild to moderate dementia. The majority of caregivers were women, most of whom were children (53.8%) or spouses (36%). The data indicated that irritability, followed by agitation, sleep disturbances, anxiety, apathy, and delusion seem to impact caregiver burden the most. CONCLUSION: Our principal finding is that irritability, agitation, sleep disturbances, anxiety, apathy, and delusion seem to exert the most impact on caregiver burden. Heterogeneity in the measures and statistical analyses used, however, makes it difficult to make conclusive interpretations. Future research in this field would benefit from standardization of the scientific methodology in use. Copyright © 2017 John Wiley & Sons, Ltd.

Impact of antipsychotic review and non-pharmacological intervention on health-related quality of life in people with dementia living in care homes: WHELD-a factorial cluster randomised controlled trial.

BACKGROUND: Very few interventional studies have directly examined the impact of treatment approaches on health-related quality of life (HRQL) in people with dementia. This is of particular importance in therapies to address behavioural symptoms, where HRQL is often severely affected. METHODS: Analysis within the WHELD cluster randomised factorial study in 16 UK care homes examining the impact of person-centred care in combination with antipsychotic review, social interaction and exercise interventions. This study analysed impact on HRQL through the DEMQOL-Proxy. RESULTS: Data on HRQL were available for 187 participants. People receiving antipsychotic review showed a significant worsening in two DEMQOL-Proxy domains (negative emotion: p = 0.02; appearance: p = 0.04). A best-case scenario analysis showed significant worsening for total DEMQOL-Proxy score. Social interaction intervention resulted in a significant benefit to HRQL (p = 0.04). There was no deterioration in HRQL in groups receiving both antipsychotic review and social interaction (p = 0.62). CONCLUSIONS: This demonstrates an important detrimental impact of discontinuation of antipsychotics in dementia on HRQL, highlighting the need for careful review of best practice guidelines regarding antipsychotic use and emphasising the importance of providing evidence-based non-pharmacological interventions in conjunction with antipsychotic review. Copyright © 2016 John Wiley & Sons, Ltd.

Resourse Use and Disease Couse in dementia - Nursing Home (REDIC-NH), a longitudinal cohort study; design and patient characteristics at admission to Norwegian nursing homes.

BACKGROUND: Earlier studies of nursing home patients show a high prevalence of dementia, neuropsychiatric symptoms (NPS), pain, and dependency in activities of daily living. The REDIC-NH cohort was set up to study the disease course and the resources used in patients with dementia in Norway. The aim of this paper was to describe the methods and the data collection, and to present selected data about patients at admission to a nursing home. METHODS: We included 696 patients at admission to a nursing home and followed them with biannual assessments until death. Baseline data were collected between March 2012 and November 2014. In October 2016, patients had either completed an 18-month follow-up (n = 349), passed 18 months without assessments (n = 22), or left the study (n = 324). Data on demographics, cognition, NPS, activities of daily living (ADL) functioning, physical health, medication, Quality of Life (QoL), resource use, and caregiver burden, in addition to DNA samples were collected. RESULTS: Mean age of the participants at inclusion was 84.5 years (SD 7.5, range 50 - 105), 63.9% were women. According to data collected in the study, 83.8% had dementia, but only 55.9% of them had a diagnosis of dementia registered in their records. The most frequent dementia diagnosis was Alzheimer's disease, which was present in 71% of those with dementia. Patients with dementia more often experienced delusions, hallucinations, agitation, anxiety, disinhibition, irritability, and aberrant motor behaviour compared to patients without dementia. Depression and anxiety were the most common NPS symptoms. CONCLUSIONS: Dementia and NPS were highly prevalent among persons admitted to nursing homes. Only 55.9% of the patients with dementia had a diagnosis of dementia registered in their records.

Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease.

OBJECTIVE: To characterise the differences in caregiver distress between carers of people diagnosed with dementia with Lewy bodies (DLB) and people with Alzheimer's disease (AD), with a view to differentiating and improving support for caregivers. METHODS: This study is a part of two larger Norwegian studies, DemVest (n = 265) and The Norwegian Dementia Register (n = 2220), with data from caregivers and people diagnosed with AD (n = 100) and DLB (n = 86) between 2005 and 2013. The average age was 74.9 years (SD = 7.8). Caregiver distress was rated by the Relative Stress Scale. Diagnosis of the person receiving care was based on a comprehensive standardised assessment program (International Classification of Diseases, Revision 10 or Diagnostic and Statistical Manual for Mental Disorders, fourth edition). Additional data collected from people receiving care were neuropsychiatric symptoms, comorbidity and activities of daily living (ADL) score. Linear regression analyses were applied, first unadjusted and then in stepwise-adjusts in addition to descriptive analyses. RESULTS: Caregivers to people with AD (20.2%) and 40% of caregivers for people with DLB experienced moderate or high caregiver burden with an increased risk of psychiatric disorders in the early stage of dementia. High Relative Stress Scale (RSS) total scores in caregivers was significantly associated with neuropsychiatric symptoms (Neuropsychiatric Inventory, p = 0.004) and also with impaired ADL functioning (Rapid Disability Rating Scale-2, p < 0.0005). CONCLUSION: Caregiver distress differed (RSS total, p = 0.005) between people caring for someone with AD (15.0) and those caring for someone with DLB (19.9). These findings have direct implications for the needs and resources that could be available for these individuals and indicate the need for further research into caregiver burden in carers to people with DLB. Copyright © 2016 John Wiley & Sons, Ltd. ETHICS AND DISSEMINATION: Cohorts were ethically approved by the Regional Ethics Committee for Medical Research Ethics in Eastern and Western Norway.

Modeling and evaluating evidence-based continuing education program in nursing home dementia care (MEDCED)--training of care home staff to reduce use of restraint in care home residents with dementia. A cluster randomized controlled trial.

OBJECTIVE: The aim of this study was to evaluate the effectiveness of a tailored 7-month training intervention "Trust Before Restraint," in reducing use of restraint, agitation, and antipsychotic medications in care home residents with dementia. METHODS: This is a single-blind cluster randomized controlled trial in 24 care homes within the Western Norway Regional Health Authority 2011-2013. RESULTS: From 24 care homes, 274 residents were included in the study, with 118 in the intervention group and 156 in the control group. Use of restraint was significantly reduced in both the intervention group and the control group despite unexpected low baseline, with a tendency to a greater reduction in the control group. There was a significant reduction in Cohen-Mansfield Agitation Inventory score in both the intervention group and the follow-up group with a slightly higher reduction in the control group, although this did not reach significance and a small nonsignificant increase in use of antipsychotics (14.1-17.7%) and antidepressants (35.9-38.4%) in both groups. CONCLUSIONS: This study reports on the statistically significant reduction in use of restraint in care homes, both prior and during the 7-month intervention periods, in both intervention and control groups. When interpreted within the context of the current climate of educational initiatives to reduce restraint and a greater focus on the importance of person-centered care, the study also highlights the potential success achieved with national training programs for care staff and should be further evaluated to inform future training initiatives both in Norway and internationally.