Search

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.

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

Background The effective management of agitation and other neuropsychiatric and behavioural symptoms in people with dementia is a major challenge, particularly in care home settings, where dementia severity is higher and there is limited training and support for care staff. There is evidence for the value of staff training and the use of psychosocial approaches; however, no intervention currently exists that combines these elements into an intervention that is fit for purpose and effective in these settings based on evidence from a randomised controlled trial. Objective The objective was to develop and evaluate a complex intervention to improve well-being, reduce antipsychotic use and improve quality of life in people with dementia in care homes through person-centred care, management of agitation and non-drug approaches. Design This was a 5-year programme that consisted of six work packages. Work package 1 consisted of two systematic reviews of personalised psychosocial interventions for behavioural and psychological symptoms for people with dementia in care homes. Work package 2 consisted of a metasynthesis of studies examining implementation of psychosocial interventions, in addition to developing a draft Well-being and Health for people with Dementia (WHELD) programme. Work package 3 consisted of a factorial study of elements of the draft WHELD programme in 16 care homes. Work package 4 involved optimisation of the WHELD programme based on work package 3 data. Work package 5 involved a multicentre randomised controlled trial in 69 care homes, which evaluated the impact of the optimised WHELD programme on quality of life, agitation and overall neuropsychiatric symptoms in people with dementia. Work package 6 focused on dissemination of the programme. Setting This programme was carried out in care homes in the UK. Participants Participants of this programme were people with dementia living in care homes, and the health and care professionals providing treatment and care in these settings. Results Work package 1: reviews identified randomised controlled trials and qualitative evidence supporting the use of psychosocial approaches to manage behavioural symptoms, but highlighted a concerning lack of evidence-based training manuals in current use. Work package 2: the meta-analysis identified key issues in promoting the use of interventions in care homes. The WHELD programme was developed through adaptation of published approaches. Work package 3: the factorial trial showed that antipsychotic review alone significantly reduced antipsychotic use by 50% (odds ratio 0.17, 95% confidence interval 0.05 to 0.60). Antipsychotic review plus social interaction significantly reduced mortality (odds ratio 0.36, 95% confidence interval 0.23 to 0.57), but this group showed significantly worse outcomes in behavioural and psychological symptoms of dementia than the group receiving neither antipsychotic review nor social interaction (mean difference 7.37 symptoms, 95% confidence interval 1.53 to 13.22 symptoms). This detrimental impact was reduced when combined with social interaction (mean difference –0.44 points, 95% confidence interval –4.39 to 3.52 points), but with no significant benefits for agitation. The exercise intervention significantly improved neuropsychiatric symptoms (mean difference –3.58 symptoms, 95% confidence interval –7.08 to –0.09 symptoms) but not depression (mean difference –1.21 points, 95% confidence interval –4.35 to 1.93 points). Qualitative work with care staff provided additional insights into the acceptability and feasibility of the intervention. Work package 4: optimisation of the WHELD programme led to a final version that combined person-centred care training with social interaction and pleasant activities. The intervention was adapted for delivery through a ‘champion’ model. Work package 5: a large-scale, multicentre randomised controlled trial in 69 care homes showed significant benefit to quality of life, agitation and overall neuropsychiatric symptoms, at reduced overall cost compared with treatment as usual. The intervention conferred a statistically significant improvement in quality of life (Dementia Quality of Life Scale – Proxy z-score of 2.82, mean difference 2.54, standard error of measurement 0.88, 95% confidence interval 0.81 to 4.28, Cohen’s d effect size of 0.24; p = 0.0042). There were also statistically significant benefits in agitation (Cohen-Mansfield Agitation Inventory z-score of 2.68, mean difference –4.27, standard error of measurement 1.59, 95% confidence interval –7.39 to –1.15, Cohen’s d effect size of 0.23; p = 0.0076) and overall neuropsychiatric symptoms (Neuropsychiatric Inventory – Nursing Home version z-score of 3.52, mean difference –4.55, standard error of measurement 1.28, 95% confidence interval –7.07 to –2.02, Cohen’s d of 0.30; p British Medical Journal e-learning module, an updated national best practice guideline and a portfolio of lay and care home outreach activities. Limitations Residents with dementia were not involved in the qualitative work. Conclusions The WHELD programme is effective in improving quality of life and reducing both agitation and overall neuropsychiatric symptoms in people with dementia in care homes. It provides a structured training and support intervention for care staff, with lower overall costs for resident care than treatment as usual. Future work It will be important to consider the long-term sustainability of the WHELD programme and cost-effective means of long-term implementation. Trial registration Current Controlled Trials ISRCTN40313497 and ISRCTN62237498. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 8, No. 6. See the NIHR Journals Library website for further project information.

Educating and supporting people with early-stage dementia has gained increased focus worldwide as a response to an aging population and limited advancements in the medical treatment of the condition. The aim of this study was to explore the experiences of people with early-stage dementia who were provided with support and information through a 12-week health promotion course and identify elements of the intervention potentially contributing to coping and adjustment to the condition. Data was collected through individual semi-structured interviews with 32 people with dementia after they had attended the course. For each participant, a care partner was also interviewed. The data were analyzed using systematic text condensation. Three main categories emerged from the analysis. These were: (I) bridging the post-diagnostic information gap, (II) facilitating health behavior changes, and (III) new perspectives on living with the condition. The results demonstrated that the intervention was well-received by the participants. Learning about dementia, meeting others in the same situation, and focusing on maintaining a healthy lifestyle was particularly highlighted, as was promoting family communication. publishedVersion

A major concern with COVID-19 was the impact it would have on individual health, the routine use of healthcare services, and physical activities, especially for older adults with comorbidities. To address this, we studied the association between these variables for older adults during the pandemic. To explore what policy instruments might be effective in mitigating the negative impacts, we investigated the effects of a shielding notice for those identified as vulnerable by the government and social media given it has been an important source for disseminating information of COVID-19. We employed a UK sample with 3,807 participants aged ≥50 from an online survey administered during May and June 2020. Based on numbers of comorbidities, we separated the sample into a higher comorbidity group with those in the upper quartile of the sample (n = 829) and a lower comorbidity group with the remainder (n = 2,978). Statistical methods include chi-squared analyses and cross-sectional regressions. We found that individuals with higher comorbidities were more likely to have poorer self-reported health and mental health and to receive a shielding notice from the government compared to those without (p 0.05). Decreases in physical activities were associated with poorer self-reported health and the increases were associated with better self-reported health; on the other hand, the decreases were associated with poorer mental health, but the increases did not link to better mental health. Examination of the effects of policy instruments shows that a shielding notice was positively associated with primary care use. The notice generated greater reliance on telephone/video consultations compared to in-person consultations, but the impacts were less strong for people with higher comorbidities. Frequent use of social media raised the probability of increasing physical activities and reduced that of decreasing physical activities, implying social media being an effective tool in promoting physical activities during the lockdown and subsequent restrictions.

Persons with Alzheimer's disease and related dementias (ADRD) are at particular risk of malnutrition and weight loss. Clinical research concerning the role and impact of nutritional intervention in early-stage ADRD, specifically on cognition and key symptoms such as behavior, is less straightforward. Thus, an integrative review was conducted to examine the literature pertaining to nutritional interventions for persons with ADRD and to make recommendations for priority areas for future research and practice. Findings from the studies reviewed highlight multiple potential opportunities for improving nutritional status and support for persons with ADRD living in the community. Despite the small amount of evidence, the six studies identified in the current review suggest a broad benefit may be conferred through educational approaches and nutritional supplementation. [Res Gerontol Nurs. 2019; 12(5):259–268.]

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.

Objectives To investigate if the multicomponent intervention of the COSMOS trial, combining communication, systematic pain management, medication review, and activities, improved quality of life (QoL) in nursing home patients with complex needs. Design Multicenter, cluster-randomized, single-blinded, controlled trial. Setting Thirty-three nursing homes with 67 units (clusters) from 8 Norwegian municipalities. Participants Seven hundred twenty-three patients with and without dementia (≥65 years) were cluster randomized to usual care or intervention in which health care staff received standardized education and on-site training for 4 months with follow-up at month 9. Measurements Primary outcome was change in QoL as measured by QUALIDEM (QoL dementia scale); QUALID (QoL late-stage dementia scale), and EQ-VAS (European QoL–visual analog scale) from baseline to month 4. Secondary outcomes were activities of daily living (ADL), total medication, staff distress, and clinical global impressions of change (CGIC). Results During the active intervention, all 3 QoL measures worsened, 2 significantly (QUALID P = .04; QUALIDEM P = .002). However, follow-up analysis from month 4 to 9 showed an intervention effect for EQ-VAS (P = .003) and QUALIDEM total score (P = .01; care relationship P = .02; positive affect P = .04, social relations P = .01). The secondary outcomes of ADL function, reduction of medication (including psychotropics) and staff distress, improved significantly from baseline to month 4. Intervention effects were also demonstrated for CGIC at month 4 (P = .023) and 9 (P = .009), mainly because of deterioration in the control group. Conclusion and implications Temporarily, the QoL decreased in the intervention group, leading to our hypothesis that health care staff may be overwhelmed by the work-intensive COSMOS intervention period. However, the decrease reversed significantly during follow-up, indicating a potential learning effect. Further, the intervention group improved in ADL function and received less medication, and staff reported less distress and judged COSMOS as able to bring about clinically relevant change. This suggests that nonpharmacologic multicomponent interventions require long follow-up to ensure uptake and beneficial effects.

Introduction People living with dementia in nursing homes have complex needs; impairments in cognition, communication, and daily function; neuropsychiatric symptoms (NPS); and poor quality of life (QoL). The current study examines impairments in non‐verbal communication as a potential driver of NPS and QoL. Methods One hundred nursing home residents with dementia were assessed using the Emory Dyssemia Index (EDI), Neuropsychiatric Inventory Nursing Home version (NPI‐NH), Quality of Life in Alzheimer's Disease (QoL‐AD) at baseline, 12‐, and 24‐week follow‐up. Results The quantile regression (0.5) model indicated that impairment of non‐verbal communication was independently associated with the severity of NPS (P = .001) and proxy reported QoL (P

BackgroundLoneliness 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.MethodWe analysed mental health data collected during COVID-19 from adults aged 50 and over alongside comparable annual data collected between 2015 and 2019 from the same sample. Trajectories of depression (PHQ-9) and anxiety (GAD-7) were analysed with respect to loneliness, physical activity levels and a number of socioeconomic and demographic characteristics using zero-inflated negative binomial regression.Results3,281 people completed the COVID-19 mental health questionnaire, all had at least one data point prior to 2020. In 2020, the adjusted PHQ-9 score for loneliness was 3.2. (95% CI: 3.0-3.4), an increase of one point on previous years and 2 points higher than people not rated lonely, whose score did not change in 2020 (1.2, 95% CI: 1.1-1.3). PHQ-9 was 2.6 (95% CI: 2.4-2.8) in people with decreased physical activity, an increase of 0.5 on previous years. In contrast, PHQ-9 in 2020 for people whose physical activity had not decreased was 1.7 (95% CI: 1.6-1.8), similar to previous years. A similar relationship was observed for GAD-7 though the differences were smaller and the absolute burden of symptoms lower.ConclusionsAfter 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.

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.

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.

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.

Pimavanserin is a selective 5-HTWe did a phase 2, randomised, double-blind, placebo-controlled, single-centre (with multiple affiliated nursing home sites across the UK) study. We included participants of either sex who were aged 50 years or older with possible or probable Alzheimer's disease and psychotic symptoms including visual or auditory hallucinations, delusions, or both. Participants were randomly assigned (1:1) to 12 weeks of oral treatment with either pimavanserin (two 17 mg tablets daily) or placebo, with use of permuted block sizes of four and stratified by baseline Mini-Mental State Examination (MMSE) total score (6 or ≥6) and Neuropsychiatric Inventory-Nursing Home version (NPI-NH) psychosis score (12 or ≥12). Participants, caregivers, the study sponsor, and study personnel at the clinic site were masked to treatment assignment. The primary endpoint was mean change from baseline to week 6 in the NPI-NH psychosis score for pimavanserin versus placebo in the modified intention-to-treat population. Sustained benefit and safety of pimavanserin were assessed through week 12. This study is registered at ClinicalTrials.gov, number NCT02035553.Between Jan 16, 2014, and Oct 27, 2016, 345 participants across 133 nursing homes were screened, of whom 181 were randomly assigned treatment (n=90 pimavanserin and n=91 placebo). 178 participants were included in the modified intention-to-treat population. Mean total baseline NPI-NH psychosis scores were 9·5 (SD 4·8) for the pimavanserin group and 10·0 (5·6) for the placebo group. Mean change in the NPI-NH psychosis score at week 6 was -3·76 points (SE 0·65) for pimavanserin and -1·93 points (0·63) for placebo (mean difference -1·84 [95% CI -3·64 to -0·04], Cohen's d=-0·32; p=0·045). By week 12, no significant advantage for pimavanserin versus placebo was observed for the overall study population (treatment difference -0·51 [95% CI -2·23 to 1·21]; p=0·561). Common adverse events were falls (21 [23%] of 90 participants in the pimavanserin group vs 21 [23%] of 91 in the placebo group), urinary tract infections (20 [22%] vs 25 [28%]), and agitation (19 [21%] vs 13 [14%]). Eight (9%) participants on pimavanserin and 11 (12%) on placebo discontinued treatment because of adverse events. No detrimental effect was observed on cognition or motor function in either group.Pimavanserin showed efficacy in patients with Alzheimer's disease psychosis at the primary endpoint (week 6) with an acceptable tolerability profile and without negative effect on cognition. Further follow-up to week 12 did not show significant advantage for pimavanserin versus placebo.ACADIA Pharmaceuticals.

Mind–body therapies frequently derive from Eastern philosophies and are becoming increasingly popular. These therapies, such as meditation, yoga, tai chi, qigong, biofield therapies, and guided imagery, have many reported benefits for improving symptoms and physiological measures associated with various chronic diseases. However, clinical research data concerning the effectiveness of these practices in individuals with dementia have not been evaluated using a synthesis approach. Thus, an integrative review was conducted to evaluate studies examining the efficacy of mind–body therapies as supportive care modalities for management of symptoms experienced by individuals with dementia. Findings from the studies reviewed support the clinical efficacy of mind–body practices in improving behavioral and psychological symptoms exhibited by individuals with dementia. [Res Gerontol Nurs. 2017; 10(6):288–296.]

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.

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.

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.

Background: There is no cure for dementia and appropriate care should be offered to improve or maintain quality of life for those living with dementia. Objectives: To identify groups of residents following similar trajectories of quality of life after nursing home admission, to examine which resident, staff, and organizational characteristics at baseline differ between the identified groups, and to assess the associations between the trend in quality of life and the same characteristics measured at baseline and over the study period. Design: A prospective, observational, longitudinal cohort design over 30 months. Setting: Nursing homes in Norway. Participants: Residents admitted to nursing homes. Measurements: Resident data on quality of life, dementia, pain, activities of daily living, physical health, neuropsychiatric symptoms, medication, and demographic characteristics were obtained by interviews. Unit characteristics and the staff data on person-centered care, psychosocial factors, and job satisfaction were obtained by questionnaires and interviews. The physical environment of the unit was assessed by structured observation. Results: 694 residents admitted to a nursing home and 1161 staff from 175 nursing home units participated. Three resident groups following similar trajectories in quality of life were identified by growth mixture model; good quality of life (53.6%), moderate quality of life (32.9%), and poor quality of life (13.4%). All groups’ quality of life decreased over time. More pain, more severe dementia, and more affective symptoms at baseline were associated with belonging to the poor quality of life group. Overall decline in quality of life was associated with more severe dementia, more pain, poorer function in activities of daily living, more severe neuropsychiatric symptoms among residents, and poorer job satisfaction among staff. Conclusion: Reducing pain, reducing NPS, improving activities of daily living for the residents, and improving the staff’s job satisfaction may be factors of importance to improve the residents’ quality of life. The REDIC-NH study was administrated by the Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, and was initiated by the Norwegian Health Directorate, which also provided funding for the data collection. The first author’s Ph. D. study was funded by the Research Council of Norway.

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.

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

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.

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.

This is the peer reviewed version of the following article: Terum, T. M., Testad, I., Rongve, A., Aarsland, D., Svendsboe, E., & Andersen, J. R. (2019). The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress. International Journal of Geriatric Psychiatry, 34(10), 1421-1428., which has been published in final form at https://onlinelibrary.wiley.com/doi/full/10.1002/gps.5134. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. 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.

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.

Objectives This study explored the experiences of a range of health and social care professionals employed in the role of trainer/coaches to support care home staff to implement a psychosocial intervention for residents living with dementia. It aimed to identify the factors which are pertinent to these roles, in the context of a cascade model of training. Method A focus group was convened involving dementia trainer/coaches and supervisors who had worked on Well-being and Health for people with Dementia randomised control trial. Twelve participants explored their preparedness for and experiences of their role as ‘Well-being and Health for people with Dementia therapists’. They reflected on their perceptions of the resources and support required. The data were transcribed verbatim and subjected to inductive thematic analysis. Results Three main themes emerged from the data. Within the theme of ‘skills in relationship building’ were two subthemes of developing trust and getting to know individual staff and each care home. In the second main theme of ‘making use of tangible resources’ two subthemes relating to using the Well-being and Health for people with Dementia manuals and the supervision of the therapists arose. The third theme, ‘being an agent for change’ contained three subthemes: effective training methods, creating opportunities for Dementia Champions to reflect and therapists' perceived rewards of their role. Conclusion The findings provide new insights into the trainer/coach role applicable to the practices of services recruiting, training and providing ongoing professional support to practitioners in-reaching into care homes.

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, In a cluster-randomized controlled trial, Clive Ballard and colleagues test whether a program combining staff training, social interaction, and guidance on use of antipsychotic medications improves quality of life and symptoms among people with dementia living in UK care homes., Author summary Why was this study done? People with dementia living in care homes often experience agitation and other symptoms that are difficult to treat and distressing for the individual. What did the researchers do and find? We tested the WHELD programme, which combined staff training, social interaction, and guidance on use of antipsychotic medications, in 69 UK care homes in a 9-month clinical trial. We showed that care homes receiving the WHELD programme saw improvements in quality of life as well as other important symptoms including agitation, behaviour, and pain in people with dementia. The WHELD programme was also shown to be cost-effective. What do these findings mean? The findings show that the WHELD approach is beneficial for people with dementia living in care homes. WHELD could be provided in an affordable way to improve the lives of these individuals, who often do not receive the care they need.

With the limited advancements in medical treatment, there is a growing emphasis on supporting people with early-stage dementia adjusting to their diagnosis and improve their quality of life. This study aimed to evaluate the effects and experiences of people with early-stage dementia attending a 12-week Health Promotion, consisting of 2-hour sessions at weekly intervals focusing on understanding the progression of dementia, promoting physical activity, nutrition, coping, relationships, home- and travel safety, medication and communication with health care providers. Quantitative and qualitative assessments were conducted at baseline and follow-up 1-2 months post intervention, including cognition, self-rated health and depressive symptoms and individual short interviews. A total of 90 persons with dementia participated in this study. The results demonstrated a stable cognitive function, measured by Mini Mental State Examination, of people with dementia during the 4 month follow-up, and a significant improvement in self-rated health measured by EQ VAS (95% CI 0.2 to 7.6, p=0.037). Depressive symptoms measured by Cornell Scale for Depression in Dementia, demonstrated a decline by one point, which is an improvement in depressive symptoms, although not significant. 32 of the 90 qualitative interviews with participants and their carers were included and analyzed with systematic text condensation. The results demonstrated that the intervention was well received by the participants, learning about dementia, practical strategies and focusing on remaining resources was particularly highlighted as well as improved family communication. In conclusion, the intervention had beneficial effects on the cognitive function, self-rated health and depressive symptoms of people with dementia.

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. Copyright © 2015 John Wiley & Sons, Ltd.

Aims and Objectives: To report a synthesis of the literature on the meaning of trust in the context of patients’ experiences of nursing. The review question was “How do patients describe the meaning of trust in the nursing relationship?” Background: Trust is essential in nursing as it has the potential to create opportunities for the human being to gain faith, hope and meaning in life as well as open up for new experiences. Trust is an interpersonal and essential element of all patient-nurse relationships and requires nurses to create a trusting relationship with the patients. Design: Systematic qualitative literature review. Methods: Systematic searches were conducted for the period January 2002 to December 2012, updated in January 2014. 20 papers were included. Results: Four categories emerged: Attitudes related to trust, indicating that trust is fundamental and existential; Experiences of trust, concerning how trust can be sensed; The patient-nurse relationship, revealing the qualities of the person who creates trust; and Where trust occurs, illuminating the contextual relevancies of trust. Conclusions: Patients’ experiences of trust in nursing are dependent on the nurses’ knowledge, level of commitment in the dialogue to creating and developing the relationship and contextual issues. Implications for nursing practice: Reflection on a trusting relationship with the patient is necessary for a deeper conceptual understanding of trust in nursing. Clinical nurse researchers nurse supervisors, managers and nurse educatorsshould discuss different areas of trust during nursing supervision and focus-group meetings as well as with nursing graduates to ensure that nurses develop knowledge of how to create a trusting patient-nurse relationship.

Background: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.