Journal articles
Creese B, Khan Z, Henley W, O'Dwyer S, Corbett A, Vasconcelos Da Silva M, Mills K, Wright N, Testad I, Aarsland D, et al (In Press). Loneliness, physical activity and mental health during Covid-19: a longitudinal analysis of depression and anxiety in adults over 50 between 2015 and 2020. International Psychogeriatrics
Fossey J, Garrod L, Lawrence V, Testad I, Stafford J, Murray J (2020). "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.
Aging Ment Health,
24(1), 178-185.
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"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.
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Fossey J, Garrod L, Guzman A, Testad I (2020). A qualitative analysis of trainer/coach experiences of changing care home practice in the Well-being and Health in Dementia randomised control trial.
Dementia (London),
19(2), 237-252.
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Testad I, Kajander M, Froiland CT, Corbett A, Gjestsen MT, Anderson JG (2019). Nutritional Interventions for Persons with Early-Stage Dementia or Alzheimer's Disease: an Integrative Review.
Res Gerontol Nurs,
12(5), 259-268.
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Nutritional Interventions for Persons with Early-Stage Dementia or Alzheimer's Disease: an Integrative Review.
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.].
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Husebø BS, Ballard C, Aarsland D, Selbaek G, Slettebo DD, Gulla C, Aasmul I, Habiger T, Elvegaard T, Testad I, et al (2019). The Effect of a Multicomponent Intervention on Quality of Life in Residents of Nursing Homes: a Randomized Controlled Trial (COSMOS).
J Am Med Dir Assoc,
20(3), 330-339.
Abstract:
The Effect of a Multicomponent Intervention on Quality of Life in Residents of Nursing Homes: a Randomized Controlled Trial (COSMOS).
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.
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Terum TM, Testad I, Rongve A, Aarsland D, Svendsboe E, Andersen JR (2019). The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress.
Int J Geriatr Psychiatry,
34(10), 1421-1428.
Abstract:
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.
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Fossey J, Garrod L, Tolbol Froiland C, Ballard C, Lawrence V, Testad I (2019). 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.
Int J Geriatr Psychiatry,
34(5), 674-682.
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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.
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Gjestsen MT, Brønnick K, Testad I (2018). Characteristics and predictors for hospitalizations of home-dwelling older persons receiving community care: a cohort study from Norway.
BMC Geriatr,
18(1).
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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.
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Nunez KM, Khan Z, Testad I, Lawrence V, Creese B, Corbett A (2018). Current practice and challenges in night-time care for people with dementia living in care homes: a qualitative study.
Int J Geriatr Psychiatry,
33(1), e140-e149.
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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.
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Ballard C, Banister C, Khan Z, Cummings J, Demos G, Coate B, Youakim JM, Owen R, Stankovic S, Tomkinson EB, et al (2018). Evaluation of the safety, tolerability, and efficacy of pimavanserin versus placebo in patients with Alzheimer's disease psychosis: a phase 2, randomised, placebo-controlled, double-blind study.
The Lancet Neurology,
17(3), 213-222.
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Evaluation of the safety, tolerability, and efficacy of pimavanserin versus placebo in patients with Alzheimer's disease psychosis: a phase 2, randomised, placebo-controlled, double-blind study
Background: Pimavanserin is a selective 5-HT2A receptor inverse agonist and antagonist approved in the USA for the treatment of hallucinations and delusions associated with Parkinson's disease psychosis. No safe or effective pharmacological treatment is approved for psychosis in patients with Alzheimer's disease. Therefore, we aimed to evaluate the safety, tolerability, and efficacy of pimavanserin versus placebo in patients with Alzheimer's disease psychosis. Methods: We 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 (
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Petyaeva A, Kajander M, Lawrence V, Clifton L, Thomas AJ, Ballard C, Leroi I, Briggs M, Closs J, Dening T, et al (2018). Feasibility of a staff training and support programme to improve pain assessment and management in people with dementia living in care homes.
Int J Geriatr Psychiatry,
33(1), 221-231.
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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.
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Ballard C, Corbett A, Orrell M, Williams G, Moniz-Cook E, Romeo R, Woods B, Garrod L, Testad I, Woodward-Carlton B, et al (2018). 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.
PLoS Med,
15(2).
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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.
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Svendsboe EJ, Testad I, Terum T, Jörg A, Corbett A, Aarsland D, Rongve A (2018). Patterns of carer distress over time in mild dementia.
Int J Geriatr Psychiatry,
33(7), 987-993.
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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.
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Røen I, Kirkevold Ø, Testad I, Selbæk G, Engedal K, Bergh S (2018). Person-centered care in Norwegian nursing homes and its relation to organizational factors and staff characteristics: a cross-sectional survey.
Int Psychogeriatr,
30(9), 1279-1290.
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Person-centered care in Norwegian nursing homes and its relation to organizational factors and staff characteristics: a cross-sectional survey.
UNLABELLED: 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.
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Hansen KV, Frøiland CT, Testad I (2018). Porcelain for all - a nursing home study.
Int J Health Care Qual Assur,
31(7), 662-675.
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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.
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Ballard C, Testad I (2018). TIME in the Context of Emerging Evidence Regarding Training Interventions for Dementia in Nursing Homes.
Am J Geriatr Psychiatry,
26(1), 39-41.
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Austbø Holteng LB, Frøiland CT, Corbett A, Testad I (2017). Care staff perspective on use of texture modified food in care home residents with dysphagia and dementia.
Ann Palliat Med,
6(4), 310-318.
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Care staff perspective on use of texture modified food in care home residents with dysphagia and dementia.
BACKGROUND: Dysphagia and dementia are conditions, which combined, can lead to complications for the person and require good nutritional care. There is very little evidence-based literature regarding nutritional care for people with dysphagia and dementia. It is clear that care staff plays a vital role, and that communication and informed decision-making are critical to the process, yet little is known regarding the use of available interventions such as texture modified food (TMF), and their acceptability and feasibility for care staff and residents. Therefore the aim of this study was to investigate the experiences of care staff when providing nutritional care for people with dysphagia and dementia, and their impressions and experience of using TMF as a new intervention for nutrition. METHODS: This was a qualitative study with an inductive approach, which aimed to explore the experience of care staff using TMF in a care home setting. Data were collected using focus group interviews, an approach which is validated as a means of supporting and developing the understanding of a phenomenon, through interactions and discussions in the group. Participants were care staff working in a care home setting in Norway. RESULTS: Twelve participants were recruited to this study across two focus groups. The cohort included four nurses, six practical nurses, one nurse assistants and one student nurse. Four main categories emerged from the focus group discussions regarding the use of TMF. These were: (I) emotional strain; (II) deficient nutritional care; (III) increased self-efficacy with use of TMF; (IV) better nutritional care with TMF. CONCLUSIONS: Use of TMF to improve nutritional care for people with dysphagia appears to have merit for both residents and care staff, and should be considered as a means of improving nutritional care for people with dementia in care homes. Minimizing feeding difficulties and increasing nutritional intake is an important goal when caring for this vulnerable group of people, and there is a need to provide better training and support for care staff to ensure they feel confident and empowered to provide high quality nutritional care. The existing Norwegian Directorate of Health checklist for nutritional care may provide a helpful basis for improvements to guidance that accounts for the needs of staff and institutions. Further research and evaluation of an intervention for tailored nutritional care is warranted to improve this critical aspect of dementia care.
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Svendsboe E, Terum T, Testad I, Aarsland D, Ulstein I, Corbett A, Rongve A (2017). Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease (vol 31, pg 1075, 2016).
INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY,
32(4), 470-470.
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Ballard C, Orrell M, Sun Y, Moniz-Cook E, Stafford J, Whitaker R, Woods B, Corbett A, Banerjee S, Testad I, et al (2017). 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.
Int J Geriatr Psychiatry,
32(10), 1094-1103.
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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.
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Anderson JG, Rogers CE, Bossen A, Testad I, Rose KM (2017). Mind-Body Therapies in Individuals with Dementia: an Integrative Review.
Res Gerontol Nurs,
10(6), 288-296.
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Mind-Body Therapies in Individuals with Dementia: an Integrative Review.
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.].
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Røen I, Selbæk G, Kirkevold Ø, Engedal K, Testad I, Bergh S (2017). 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.
BMC Health Serv Res,
17(1).
Abstract:
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.
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Terum TM, Andersen JR, Rongve A, Aarsland D, Svendsboe EJ, Testad I (2017). The relationship of specific items on the Neuropsychiatric Inventory to caregiver burden in dementia: a systematic review.
Int J Geriatr Psychiatry,
32(7), 703-717.
Abstract:
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.
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Gjestsen MT, Wiig S, Testad I (2017). What are the key contextual factors when preparing for successful implementation of assistive living technology in primary elderly care? a case study from Norway.
BMJ Open,
7(9).
Abstract:
What are the key contextual factors when preparing for successful implementation of assistive living technology in primary elderly care? a case study from Norway.
OBJECTIVE: to identify contextual factors at different organisational levels to guide the implementation of an assistive living technology intervention in Norwegian primary home care. DESIGN: a single embedded case study design was carried out in an urban municipality in Western Norway to get an overview of key contextual factors from the municipality's perspective. DATA COLLECTION AND ANALYSIS: the data collection was based on a triangulation of methods involving document analysis, semi-structured individual interviews and focus group interviews to get a broad insight when preparing for an intervention. Data were collected on three levels of the healthcare system: (1) national policy documents and regulations (macro), (2) five individual interviews with senior managers and municipal strategy documents (meso) and (3) two focus group interviews with nurses and nurse managers in direct patient care (micro). The Model for Understanding Success in Quality framework was used as a guide in the data analysis. RESULTS: the main contextual factors identified were external motivators and project sponsorship (macro level); leadership, workforce focus and maturity (meso level);and motivation to change and maturity (micro level). Strategies developed in policy documents affected upper management in the municipality, but healthcare personnel at the micro level were not so familiar with strategies and emphasis on assistive living technologies. Healthcare personnel in our study were motivated to use technological solutions, but lack of data infrastructure and resource availability hindered this. CONCLUSIONS: Aligning interests across multiple stakeholders remain a challenge when planning for an assistive living technology intervention in primary care. In the studied municipality, integration of technological solutions into healthcare services was more a vision than a reality because of a low level of organisational readiness.
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Rajkumar AP, Ballard C, Fossey J, Corbett A, Woods B, Orrell M, Prakash R, Moniz-Cook E, Testad I (2016). Apathy and its Response to Antipsychotic Review and Nonpharmacological Interventions in People with Dementia Living in Nursing Homes: WHELD, a Factorial Cluster Randomized Controlled Trial.
Journal of the American Medical Directors Association,
17(8), 741-747.
Abstract:
Apathy and its Response to Antipsychotic Review and Nonpharmacological Interventions in People with Dementia Living in Nursing Homes: WHELD, a Factorial Cluster Randomized Controlled Trial
Objectives Apathy is common, impactful, and difficult to manage in people with dementia. We evaluated the efficacy of nonpharmacological interventions, exercise, and social interaction, in combination with antipsychotic review, to reduce apathy in people with dementia living in nursing homes in a cluster randomized controlled trial (RCT). Methods Well-being and health for people with dementia (WHELD) program included a 2 × 2 × 2 factorial cluster RCT involving people with dementia living in 16 nursing homes in the United Kingdom. All homes received training in person-centered care, and were randomized to receive antipsychotic review, social interaction, and exercise, either alone or in combinations. Apathy was one of the secondary outcomes of the WHELD trial, and it was measured by the Neuropsychiatric Inventory–nursing home version at baseline and 9 months (n = 273). We used multilevel mixed effects linear regression models to assess the impact of the interventions on apathy. Results Prevalence of apathy was 44.0% (n = 120; 95% confidence interval [CI] 38.1%–49.9%) at baseline. Severity of apathy had significant positive correlations with dementia severity, neuropsychiatric symptoms, depressive symptoms, agitation, and the needs of the people with dementia (P
Abstract.
Svendsboe E, Terum T, Testad I, Aarsland D, Ulstein I, Corbett A, Rongve A (2016). Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease.
Int J Geriatr Psychiatry,
31(9), 1075-1083.
Abstract:
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
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Testad I, Mekki TE, Førland O, Øye C, Tveit EM, Jacobsen F, Kirkevold Ø (2016). 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.
Int J Geriatr Psychiatry,
31(1), 24-32.
Abstract:
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.
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Corbett A, Nunez K-M, Smeaton E, Testad I, Thomas AJ, Closs SJ, Briggs M, Clifton L, Gjestsen MT, Lawrence V, et al (2016). The landscape of pain management in people with dementia living in care homes: a mixed methods study.
Int J Geriatr Psychiatry,
31(12), 1354-1370.
Abstract:
The landscape of pain management in people with dementia living in care homes: a mixed methods study.
OBJECTIVES: the aim of this study is to explore the current landscape of pain management in people with dementia living in care home settings. Pain is extremely common in this patient group, yet there is very limited guidance for healthcare professionals. METHODS: Triangulation of stakeholder consultation and quality review of pain management guidance were performed. A review of existing pain management guidance was conducted using published quality criteria adapted for the field. Three focus group discussions were held with care home staff and two focus group discussions and an online survey with family carers. Data were subjected to thematic analysis to identify themes and sub-themes. Outcomes were reviewed by an expert panel, which gave recommendations. RESULTS: Fifteen existing guidelines were identified, of which three were designed for use in dementia and none were tailored for care home settings. Thematic analysis revealed six major themes in current pain management in dementia: importance of person-centredness, current lack of pain awareness in staff, communication as a core element, disparities in staff responsibility and confidence, the need for consistency of care and current lack of staff training. In addition to the needs for practice, the expert panel identified promising pharmacological treatment candidates, which warrant clinical evaluation. CONCLUSIONS: the findings of this study clearly articulate a need for an evidence-based pain management programme for care homes, which is informed by stakeholder input and based within a conceptual framework for this setting. There are novel opportunities for clinical trials of alternative analgesics for use in this patient group. Copyright © 2016 John Wiley & Sons, Ltd.
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Dyrstad DN, Testad I, Aase K, Storm M (2015). A review of the literature on patient participation in transitions of the elderly.
COGNITION TECHNOLOGY & WORK,
17(1), 15-34.
Author URL.
Husebo BS, Flo E, Aarsland D, Selbaek G, Testad I, Gulla C, Aasmul I, Ballard C (2015). COSMOS--improving the quality of life in nursing home patients: protocol for an effectiveness-implementation cluster randomized clinical hybrid trial.
Implement Sci,
10Abstract:
COSMOS--improving the quality of life in nursing home patients: protocol for an effectiveness-implementation cluster randomized clinical hybrid trial.
BACKGROUND: Nursing home patients have complex mental and physical health problems, disabilities and social needs, combined with widespread prescription of psychotropic drugs. Preservation of their quality of life is an important goal. This can only be achieved within nursing homes that offer competent clinical conditions of treatment and care. COmmunication, Systematic assessment and treatment of pain, Medication review, Occupational therapy, Safety (COSMOS) is an effectiveness-implementation hybrid trial that combines and implements organization of activities evidence-based interventions to improve staff competence and thereby the patients' quality of life, mental health and safety. The aim of this paper is to describe the development, content and implementation process of the COSMOS trial. METHODS/DESIGN: COSMOS includes a 2-month pilot study with 128 participants distributed among nine Norwegian nursing homes, and a 4-month multicenter, cluster randomized effectiveness-implementation clinical hybrid trial with follow-up at month 9, including 571 patients from 67 nursing home units (one unit defined as one cluster). Clusters are randomized to COSMOS intervention or current best practice (control group). The intervention group will receive a 2-day education program including written guidelines, repeated theoretical and practical training (credited education of caregivers, physicians and nursing home managers), case discussions and role play. The 1-day midway evaluation, information and interviews of nursing staff and a telephone hotline all support the implementation process. Outcome measures include quality of life in late-stage dementia, neuropsychiatric symptoms, activities of daily living, pain, depression, sleep, medication, cost-utility analysis, hospital admission and mortality. DISCUSSION: Despite complex medical and psychosocial challenges, nursing home patients are often treated by staff possessing low level skills, lacking education and in facilities with a high staff turnover. Implementation of a research-based multicomponent intervention may improve staff's knowledge and competence and consequently the quality of life of nursing home patients in general and people with dementia in particular. TRIAL REGISTRATION: ClinicalTrials.gov NCT02238652.
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Dyrstad DN, Testad I, Storm M (2015). Older patients' participation in hospital admissions through the emergency department: an interview study of healthcare professionals.
BMC Health Serv Res,
15Abstract:
Older patients' participation in hospital admissions through the emergency department: an interview study of healthcare professionals.
BACKGROUND: Patient participation is an important aspect of healthcare quality and may be one way to improve the quality of transitional care for older patients. Research reveals minimal awareness about patient participation in hospital admissions. Hospital admissions require attention to individuals' specific needs beyond patient frailty, and to involve patients and their families in shared decision-making. The aim of this study was to identify factors influencing patient participation by exploring healthcare professionals' views on patient participation during the hospital admission of older patients through the emergency department (ED). METHODS: the study used a qualitative and descriptive design with face-to-face interviews. A total of 27 interviews were conducted with 15 healthcare professionals from one hospital and 12 from another. The data were analyzed using systematic text condensation. RESULTS: Healthcare professionals thought that patient participation in hospital admissions was influenced by five main factors: 1) routine treatment and care during hospital admission, and in particular certain procedures such as medical examinations; 2) the frail and thankful older patients, and the overall picture of their medical needs; 3) hospital resources, such as available staff and beds; 4) healthcare professionals' attitude towards finding out about older patients' experiences; and 5) the presence of a supportive and demanding next of kin acting as an advocate for the patient. CONCLUSIONS: Patient participation in hospital admissions of older patients is dependent on the way the service is organized, the patients' condition, hospital resources, healthcare professionals' attitudes, and support from patients' next of kin. Some of the participants had high expectations of themselves and actively involved patients, but others did not find patient participation relevant in the emergency department. Some used crowded wards as a reason not to engage older patients in their own care.
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Testad I, Corbett A, Aarsland D, Lexow KO, Fossey J, Woods B, Ballard C (2014). Erratum: the value of personalized psychosocial interventions to address behavioral and psychological symptoms in people with dementia living in care home settings: a systematic review (International Psychogeriatrics (2014) DOI; 10.1017/S1041610214000131)). International Psychogeriatrics, 26(7).
Whitaker R, Fossey J, Ballard C, Orrell M, Moniz-Cook E, Woods RT, Murray J, Stafford J, Knapp M, Romeo R, et al (2014). Improving Well-being and Health for People with Dementia (WHELD): study protocol for a randomised controlled trial.
Trials,
15Abstract:
Improving Well-being and Health for People with Dementia (WHELD): study protocol for a randomised controlled trial.
BACKGROUND: People with dementia living in care homes often have complex mental health problems, disabilities and social needs. Providing more comprehensive training for staff working in care home environments is a high national priority. It is important that this training is evidence based and delivers improvement for people with dementia residing in these environments. Well-being and Health for People with Dementia (WHELD) combines the most effective elements of existing approaches to develop a comprehensive but practical staff training intervention. This optimised intervention is based on a factorial study and qualitative evaluation, to combine: training on person-centred care, promoting person-centred activities and interactions, and providing care home staff and general practitioners with updated knowledge regarding the optimal use of psychotropic medications for persons with dementia in care homes. DESIGN: the trial will be a randomised controlled two-arm cluster single blind trial that will take place for nine months across 80 care homes in the United Kingdom. DISCUSSION: the overarching goal of this trial is to determine whether this optimised WHELD intervention is more effective in improving the quality of life and mental health than the usual care provided to people with dementia living in nursing homes. This study will be the largest and best powered randomised controlled trial (RCT) evaluating the benefits of an augmented person-centred care training intervention in care homes worldwide. TRIAL REGISTRATION: Current controlled trials ISRCTN62237498 Date registered: 5 September 2013.
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Storm M, Groene O, Testad I, Dyrstad DN, Heskestad RN, Aase K (2014). Quality and safety in the transitional care of the elderly (phase 2): the study protocol of a quasi-experimental intervention study for a cross-level educational programme.
BMJ Open,
4(7).
Abstract:
Quality and safety in the transitional care of the elderly (phase 2): the study protocol of a quasi-experimental intervention study for a cross-level educational programme.
INTRODUCTION: Transitional care and patient handover are important areas to ensure quality and safety in elderly healthcare services. Previous studies showed that healthcare professionals have little knowledge of the setting they are transferring patients to and a limited understanding of roles and functions; these constitute barriers to effective communication and shared care responsibilities across levels of care. AIM: the main objective is to implement a cross-level education-based intervention programme with healthcare professionals aimed at (1) increasing professionals' awareness and competencies about quality and safety in the transitional care of the elderly; (2) creating a discussion platform for knowledge exchange and learning across levels and units of care and (3) improving patient safety culture, in particular, in transitional care. METHODS AND ANALYSIS: a quasi-experimental control group study design with an intervention group and a control group; this includes a pretest, post-test and 1-year follow-up test assessment of patient safety culture. Qualitative data will be collected during the intervention programme and between the measurements. The study design will be beneficial for addressing the effects of the cross-level educational intervention programme on reports of patient safety culture and for addressing the feasibility of the intervention measures. ETHICS AND DISSEMINATION: the study has been approved by the Regional Committees for Medical and Health Research Ethics in Norway, Ref. No. 2011/1978. The study is based on informed written consent; informants can withdraw from the study at any point in time. The results will be disseminated at research conferences, in peer review journals and through public presentations outside the scientific community.
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Wiig S, Guise V, Anderson J, Storm M, Lunde Husebø AM, Testad I, Søyland E, Moltu KL (2014). Safer@home-Simulation and training: the study protocol of a qualitative action research design.
BMJ Open,
4(7).
Abstract:
Safer@home-Simulation and training: the study protocol of a qualitative action research design.
INTRODUCTION: While it is predicted that telecare and other information and communication technology (ICT)-assisted services will have an increasingly important role in future healthcare services, their implementation in practice is complex. For implementation of telecare to be successful and ensure quality of care, sufficient training for staff (healthcare professionals) and service users (patients) is fundamental. Telecare training has been found to have positive effects on attitudes to, sustained use of, and outcomes associated with telecare. However, the potential contribution of training in the adoption, quality and safety of telecare services is an under-investigated research field. The overall aim of this study is to develop and evaluate simulation-based telecare training programmes to aid the use of videophone technology in elderly home care. Research-based training programmes will be designed for healthcare professionals, service users and next of kin, and the study will explore the impact of training on adoption, quality and safety of new telecare services. METHODS AND ANALYSIS: the study has a qualitative action research design. The research will be undertaken in close collaboration with a multidisciplinary team consisting of researchers and managers and clinical representatives from healthcare services in two Norwegian municipalities, alongside experts in clinical education and simulation, as well as service user (patient) representatives. The qualitative methods used involve focus group interviews, semistructured interviews, observation and document analysis. To ensure trustworthiness in the data analysis, we will apply member checks and analyst triangulation; in addition to providing contextual and sample description to allow for evaluation of transferability of our results to other contexts and groups. ETHICS AND DISSEMINATION: the study is approved by the Norwegian Social Science Data Services. The study is based on voluntary participation and informed written consent. Informants can withdraw at any point in time. The results will be disseminated at research conferences, peer review journals, one PhD thesis and through public presentations to people outside the scientific community.
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Vossius C, Rongve A, Testad I, Wimo A, Aarsland D (2014). The use and costs of formal care in newly diagnosed dementia: a three-year prospective follow-up study.
Am J Geriatr Psychiatry,
22(4), 381-388.
Abstract:
The use and costs of formal care in newly diagnosed dementia: a three-year prospective follow-up study.
OBJECTIVE: to investigate the use of formal care during the first three years after diagnosis of mild dementia and identify cost-predicting factors. DESIGN: Prospective longitudinal study over three years. SETTING: an incidence-based bottom-up cost-of-illness study where information about formal health care services was drawn from the municipalities' registers during the first three years after the diagnosis of mild dementia. PARTICIPANTS: 109 patients with mild dementia at baseline, diagnosed according to consensus criteria based on standardized assessments. MEASUREMENT: the use of formal care as registered by the municipalities' registration systems. Costs were estimated by applying unit costs, including municipal expenses and out-of-pocket contributions. Clinical data were collected at baseline to identify cost-predicting factors. RESULTS: Costs for formal care were increasing from € 535 per month of survival (MOS) at baseline to € 3,611 per MOS during the third year, with a mean of € 2,420 during the whole observation period. The major cost driver (74%) was institutional care. The costs for people with dementia with Lewy bodies (€ 3,247 per MOS) were significantly higher than for people with Alzheimer disease (€ 1,855 per MOS). The most important cost-predicting factors we identified were the living situation, a diagnosis of non-Alzheimer disease, comorbidity, and daily living functioning. The use of cholinesterase inhibitors was related to lower costs. CONCLUSION: Formal care costs increased significantly over time with institutional care being the heaviest cost driver. Studies with longer observation periods will be necessary to evaluate the complete socioeconomic impact of the course of dementia.
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Testad I, Corbett A, Aarsland D, Lexow KO, Fossey J, Woods B, Ballard C (2014). The value of personalized psychosocial interventions to address behavioral and psychological symptoms in people with dementia living in care home settings: a systematic review.
INTERNATIONAL PSYCHOGERIATRICS,
26(7), 1083-1098.
Author URL.
Rongve A, Vossius C, Nore S, Testad I, Aarsland D (2014). Time until nursing home admission in people with mild dementia: comparison of dementia with Lewy bodies and Alzheimer's dementia.
Int J Geriatr Psychiatry,
29(4), 392-398.
Abstract:
Time until nursing home admission in people with mild dementia: comparison of dementia with Lewy bodies and Alzheimer's dementia.
OBJECTIVE: We studied time until nursing home admission (NHA) in mild dementia and predictors for NHA in people with Dementia with Lewy bodies (DLB) and how it compares to Alzheimer's dementia (AD). METHODS: Kaplan-Meier survival analysis and Cox proportional hazards were applied. RESULTS: Median time until NHA was 1114 days (95% confidence interval [CI] [932, 1296]). In DLB median time until NHA was 663 days [472, 998]) as compared with 1336 days (1068, 1606) in AD, p
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Vossius CE, Ydstebø AE, Testad I, Lurås H (2013). Referrals from nursing home to hospital: reasons, appropriateness and costs.
Scand J Public Health,
41(4), 366-373.
Abstract:
Referrals from nursing home to hospital: reasons, appropriateness and costs.
BACKGROUND: Nursing home residents represent a frail and multimorbid group of patients. The rationality of the hospitalisation of nursing home patients has therefore been questioned. OBJECTIVE: to investigate hospital referrals of nursing home patients in the municipality of Stavanger, Norway and identify the number of inappropriate referrals and costs. METHODS: the number of referrals was retrospectively identified by the emergency dispatch centre in the 18 municipalities of South Rogaland in 2011. For the municipality of Stavanger, referring instance, reason for referral, purpose of referral, the existence of an advance care plan, and appropriateness were assessed. Total costs and costs for inappropriate referrals were estimated. RESULTS: in Stavanger there were 0.38 hospital referrals per nursing home bed per year as compared to 0.60 in the surrounding municipalities. of 359 referrals, 78.6% resulted in an in-hospital stay, in-hospital mortality rate was 7.8%, and 7% were assessed as being inappropriate. The costs per referral were estimated to be €6198. CONCLUSION: Stavanger had a lower referral rate than the surrounding municipalities. The results also show that the in-hospital mortality rate and the share of inappropriate referrals were low compared to other studies in the field. Further research is needed in order to evaluate which interventions are effective in improving medical care at nursing homes and thus reduce referral rates.
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Vossius C, Testad I, Skjæveland R, Nesvåg S (2013). The use and costs of health and social services in patients with longstanding substance abuse.
BMC Health Serv Res,
13Abstract:
The use and costs of health and social services in patients with longstanding substance abuse.
BACKGROUND: Persons with longstanding substance abuse might become increasingly dependent on help by the public, eventually requiring permanent care. In 2006 the municipality of Stavanger established a so-called addiction ward for these clients, comprising 17 beds at the largest municipal nursing home. We assumed that the residents of this ward were high consumers of health care and social services during the last months preceding their admission. The aim of the study was to register the type and extent of services that were claimed by this client group during the last six months prior to admission, and to calculate the costs that were caused. Further, we estimated the incremental costs for nursing home placement. METHODS: in 15 residents from the addiction ward the use of all welfare services during the six months prior to admission were registered. Costs were calculated by unit costs from a municipal, national and societal perspective. RESULTS: Mean total costs during this period were €32 474. Approximately half of these costs were borne by state-funded institutions, and half were borne by the municipality. The clients used a great variety of services aimed at subsistence, health care and support in independent living, while services aimed at drug withdrawal were not claimed. There was no correlation between costs and the level of functioning. The incremental costs for nursing home admission were borne by the municipalities. CONCLUSION: Persons with longstanding substance abuse represent a group with a high use of welfare resources and hence cause high costs. However, our findings do not indicate any correlation between the amount of services rendered and the level of functioning. Further research should focus on the identification of the clients' need for support in order to facilitate targeted interventions that might prevent further deterioration and, finally, the need for permanent care.
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Hansen BS, Rørtveit K, Leiknes I, Morken I, Testad I, Joa I, Severinsson E (2012). Patient experiences of uncertainty - a synthesis to guide nursing practice and research.
J Nurs Manag,
20(2), 266-277.
Abstract:
Patient experiences of uncertainty - a synthesis to guide nursing practice and research.
AIM: the aim of this study was to provide a synthesis of patients' experiences of uncertainty in illness and the interventions outlined, based on qualitative research. BACKGROUND: There is a need to explore various patient experiences from a nursing perspective in order to achieve evidence-based practice and improve the quality of care. Uncertainty in illness is a dynamic experience - a stressor with a major impact on patients' illnesses. METHODS: a literature search performed on PubMed and Cinahl yielded 15 qualitative studies that met the inclusion criteria and which were analysed and interpreted. RESULTS: Experienced uncertainty was one of two main areas comprising three themes: explaining, feeling and facing uncertainty. The second main area was suggested intervention strategies consisting of three themes: organizing the patient trajectory throughout the health-care system, supporting patients through relationships and providing knowledge through clear and accurate communication. CONCLUSION: Providing insight, confidence and supporting the patients' feeling of control are of importance for health-care professionals. IMPLICATIONS FOR NURSING MANAGEMENT: Structured organization of the trajectory system should be followed up, while outcome measures (patient satisfaction), education and training programmes for patients and families after discharge to improve coping strategies and reduce uncertainty should be developed. Nurse leaders should work towards the establishment of clinical academic nursing positions to integrate knowledge, skills, experiences and research into everyday routines.
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Vossius C, Testad I, Berge T, Nesvag S (2011). The Stavanger wet house.
NORDIC STUDIES ON ALCOHOL AND DRUGS,
28(3), 279-282.
Author URL.
Aarsland D, Rongve A, Fladby T, Testad I, Kivipelto M, Winblad B (2011). [New diagnostic criteria for Alzheimer disease].
Tidsskr Nor Laegeforen,
131(22), 2224-2225.
Author URL.
Testad I, Mikkelsen A, Ballard C, Aarsland D (2010). Health and well-being in care staff and their relations to organizational and psychosocial factors, care staff and resident factors in nursing homes.
Int J Geriatr Psychiatry,
25(8), 789-797.
Abstract:
Health and well-being in care staff and their relations to organizational and psychosocial factors, care staff and resident factors in nursing homes.
OBJECTIVE: the aim of this study is to investigate the association of psychosocial factors and patient factors with stress in care staff in nursing homes. METHODS: in this cross-sectional survey, 197 care staff from 13 dementia wards from four nursing homes in the Stavanger region, Norway, participated. Stress in care staff was measured by Perceived Stress Scale, Hopkins Symptom Check List, and subjective health complaints. Agitation in patients was measured with the Cohen-Mansfield Agitation Inventory. Work-related psychosocial factors were measured by General Nordic Questionnaire for Psychosocial and Social Factors at Work (QPSNordic). Data were analyzed using multivariate regression analyses. RESULTS: Psychosocial factors (QPS Nordic) were significantly associated with all the three outcome measures of stress in care staff, whereas agitation was associated with subjective health complaints only. QPS Nordic subscales significantly associated with stress in care staff were those associated with leadership. CONCLUSIONS: Psychosocial factors were more important predictors of carer stress than patient-related factors such as dementia severity and agitation. The findings provide key background information in the planning of interventions to improve conditions for care staff and ultimately for nursing home residents.
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Testad I, Auer S, Mittelman M, Ballard C, Fossey J, Donabauer Y, Aarsland D (2010). Nursing home structure and association with agitation and use of psychotropic drugs in nursing home residents in three countries: Norway, Austria and England.
Int J Geriatr Psychiatry,
25(7), 725-731.
Abstract:
Nursing home structure and association with agitation and use of psychotropic drugs in nursing home residents in three countries: Norway, Austria and England.
BACKGROUND: Understanding the underlying mechanisms and risk factors leading to agitation is crucial to reduce the severity of agitation and increase quality of life. International comparative studies offer special advantages in elucidating environmental risk factors by providing a wider diversity of environmental exposures such as nursing home structures, health care systems and genetic diversity. METHODS: Baseline data for three different intervention studies in Austria (n = 38), England (n = 302) and Norway (n = 163) were combined posthoc. Patients were grouped according to their dementia severity using the global deterioration scale (GDS), functional assessment staging (FAST) and clinical dementia rating (CDR) scales. For the measurement of agitation, the Cohen-Mansfield Agitation Inventory (CMAI) was used. Data analysis was performed using one-way ANOVA, multivariate and linear regression analysis. RESULTS: CMAI scores were available for 503 subjects with dementia. There were significant differences between the nursing home residents in the three countries regarding age, gender and dementia severity (all p values < 0.001). In the multivariate analyses, the level of agitation differed with higher mean scores in the Austrian (mean (SD) score 51.9(21.8)) compared to UK (43.3(16.1)) and Norwegian (41.6(13.2)) nursing homes (p = 0.002). Similarly, the use of psychotropic drugs differed significantly, with a higher proportion of neuroleptics in UK (48%, p < 0.001) and Austrian (52.6%; p = 0.001) compared to Norwegian (19%) nursing homes. CONCLUSION: We found differences in agitation and antipsychotic drug use which are likely related to structural and cultural differences in nursing homes in three European countries. These findings suggest that structural changes can improve quality of care and quality of life for nursing home residents.
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Testad I, Ballard C, Brønnick K, Aarsland D (2010). The effect of staff training on agitation and use of restraint in nursing home residents with dementia: a single-blind, randomized controlled trial.
J Clin Psychiatry,
71(1), 80-86.
Abstract:
The effect of staff training on agitation and use of restraint in nursing home residents with dementia: a single-blind, randomized controlled trial.
INTRODUCTION: Agitation is common in dementia and is associated with use of restraints and use of psychotropic drugs. The aim of this study was to determine whether an education and supervision intervention could reduce agitation and the use of restraints and antipsychotic drugs in nursing homes. METHOD: Four Norwegian nursing homes were randomly allocated to receive either treatment as usual or an intervention consisting of a 2-day educational seminar and monthly group guidance for 6 months. One hundred forty-five residents with dementia (based on medical records and corroborated with a Functional Assessment Staging score >or= 4) completed baseline and 6-month intervention assessments and were included in the analyses. The co-primary outcome measures were the proportion of residents subject to interactional restraint and the severity of agitation using the Cohen-Mansfield Agitation Inventory (CMAI). Patients were assessed at baseline, immediately after completion of the intervention at 6 months, and 12 months after baseline. Comparison of change in the 2 groups was made using repeated-measures analysis of variance (CMAI) and Mann-Whitney test (restraints). The study was conducted from 2003 to 2004. RESULTS: the proportion of residents starting new restraint was lower in the intervention than in the control group at 6-month evaluation (P =. 02), but no statistically significant differences were found at 12-month assessment (P =. 57). The total CMAI score declined from baseline to 6 and 12 months' follow-up in the intervention homes compared to a small increase in the control homes (F2,176 = 3.46, P =. 034). There were no statistically significant differences in use of antipsychotic drugs. CONCLUSIONS: a brief 2-day staff education program followed by continued monthly guidance was able both to improve quality of care by reducing the frequency of interactional restraints and to reduce severity of agitation.
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Yu F, Rose KM, Burgener SC, Cunningham C, Buettner LL, Beattie E, Bossen AL, Buckwalter KC, Fick DM, Fitzsimmons S, et al (2009). Cognitive training for early-stage Alzheimer's disease and dementia.
J Gerontol Nurs,
35(3), 23-29.
Abstract:
Cognitive training for early-stage Alzheimer's disease and dementia.
The purpose of this article is to critically review and synthesize the literature on the effects of nonpharmacological cognitive training on dementia symptoms in early-stage Alzheimer's disease (AD) and related dementia. Electronic databases MEDLINE (PubMed), CINAHL, PsycInfo, and the Cochrane Library were searched using the keywords cognition, reality orientation, Alzheimer's disease, psychosocial factors, cognitive therapy, brain plasticity, enriched environments, and memory training. The findings support that cognitive training improves cognition, activities of daily living, and decision making. Interventions are more effective if they are structured and focus on specific known losses related to the AD pathological process and a person's residual ability, or are combined with cognitive-enhancing medications. Nursing implications are also discussed.
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Burgener SC, Buettner L, Coen Buckwalter K, Beattie E, Bossen AL, Fick DM, Fitzsimmons S, Kolanowski A, Richeson NE, Rose K, et al (2008). Evidence supporting nutritional interventions for persons in early stage Alzheimer's disease (AD).
J Nutr Health Aging,
12(1), 18-21.
Abstract:
Evidence supporting nutritional interventions for persons in early stage Alzheimer's disease (AD).
The purpose of this paper is to grade research evidence supporting nutritional interventions for persons with early stage dementias and to report the recommendations of a consensus panel. Thirty four studies were reviewed in the areas of dietary restriction, antioxidants, and Mediterranean diet with strong support from epidemiological studies found in all three areas. The body of evidence to support nutritional interventions in the prevention and treatment of AD is growing and has potential as a treatment modality following translational studies.
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Burgener SC, Buettner L, Buckwalter KC, Beattie E, Bossen AL, Fick D, Fitzsimmons S, Kolanowski A, Richeson NE, Rose KM, et al (2008). Review of exemplar programs for adults with early-stage Alzheimer's disease.
Res Gerontol Nurs,
1(4), 295-304.
Abstract:
Review of exemplar programs for adults with early-stage Alzheimer's disease.
In response to the need to develop evidence-based best practices interventions and services for individuals in the early stages of Alzheimer's disease (AD), the authors conducted an interdisciplinary literature review of exemplar programs, defined as those including multimodal or unimodal interventions; shown to be appropriate for individuals in the early stages of AD; demonstrating promise to support, maintain, and improve independent functioning; and shown to have positive effects for a variety of outcomes, including quality of life. This article examines evidence from five kinds of programs: (a) multimodal interventions, (b) programs developed by the Southwest Florida Interdisciplinary Center for Positive Aging, (c) sleep enhancement interventions, (d) managed care programs, and (e) technology-based interventions. Evidence from the review suggests that a number of programs can support functioning and improve quality of life for adults living with the early stages of memory loss. The article concludes with recommendations to advance a national research agenda in this area.
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Testad I, Aasland AM, Aarsland D (2007). Prevalence and correlates of disruptive behavior in patients in Norwegian nursing homes.
Int J Geriatr Psychiatry,
22(9), 916-921.
Abstract:
Prevalence and correlates of disruptive behavior in patients in Norwegian nursing homes.
BACKGROUND: Although Behavioral and Psychological Symptoms of Dementia (BPSD) increase with increasing dementia severity, and institutionalization of an individual with dementia is often caused by behavioral symptoms, relatively few studies have explored the prevalence of BPSD in nursing homes. OBJECTIVE: to study the prevalence and correlates of agitation in residents with dementia, in Norwegian nursing homes. METHODS: This study has taken place in dementia wards in four Norwegian nursing homes. To measure agitation in residents with dementia we used the Cohen-Mansfield Agitation Inventory (CMAI), consisting of 29 agitation items. Dementia stage was measured by Functional Assessment Staging (FAST). RESULTS: Two hundred and eleven patients (71% female) were included in the study: mean (SD) age 85.5 (8.4), FAST 4.7 (2.1), CMAI total sumscore 39.5 (12.6). Dementia was present in 167 (79%) subjects. Among those with dementia, weekly occurrence of at least one CMAI item (i.e. a score of 3 or higher) occurred in 75.4% (95% CI 68.4-81.4). Six of the items occurred at least weekly in 20% of the residents with dementia, and 11 of the items, including physical aggression, occurred in less than 5% of the residents. Agitation was associated with more severe dementia (p = 0.001), but not with age and gender. CONCLUSION: Symptoms of agitation were common, but may nevertheless be lower compared to findings in other geographical areas. Further studies are warranted to test this hypothesis, and if confirmed, to explore possible causes for such differences.
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Testad I, Aasland AM, Aarsland D (2005). The effect of staff training on the use of restraint in dementia: a single-blind randomised controlled trial.
Int J Geriatr Psychiatry,
20(6), 587-590.
Abstract:
The effect of staff training on the use of restraint in dementia: a single-blind randomised controlled trial.
BACKGROUND: Use of restraint amongst institutionalised elderly with dementia and problem behaviour not only remains widespread, but also appears to be accepted as inevitable. OBJECTIVE: the aim of this study was to reduce problem behaviour and the use of restraint in demented patients using a staff training program as intervention. METHODS: the study was a randomised single-blind controlled trial and took place in Stavanger, Norway. Four nursing homes were randomised to a control or an intervention group after stratification for size. The intervention consisted of a full day seminar, followed by a one-hour session of guidance per month over six months. The content of the educational program focused on the decision making process in the use of restraint and alternatives to restraint consistent with professional practice and quality care. The primary outcome measures were number of restraints per patient in the nursing homes in one week and agitation as measured with the Brief Agitation Rating Scale (BARS). These were rated before and immediately after the intervention was completed. The assessments were performed blind to design and randomisation group. RESULTS: Clinical and demographic variables did not differ between the intervention and control groups at baseline. After the intervention period, the number of restraints had declined by 54% in the treatment group, and increased by 18% in the control group. The difference between the two groups was statistically significant ( p = 0.013). There was a trend towards higher BARS score in the intervention compared to the control group at follow up ( p = 0.052). CONCLUSION: Although the level of agitated behaviour remained unchanged or increased slightly, the educational program led to a significant reduction of the use of restraint in institutionalised elderly with dementia. These results suggest that educational programs can improve the quality of care of people with dementia.
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