Decreased costs and retained QoL due to the 'PACE Steps to Success' intervention in LTCFs: cost-effectiveness analysis of a randomized controlled trial.

BACKGROUND: The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the 'PACE Steps to Success' intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries. METHODS: A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and costs per quality increase measured with the QOD-LTC were outcome measures. RESULTS: Although outcomes on the EQ-5D-5L remained the same, a significant increase on the QOD-LTC (3.19 points, p value 0.00) and significant cost-savings were achieved in the intervention group (€983.28, p value 0.020). The cost reduction mainly resulted from decreased hospitalization-related costs (€919.51, p value 0.018). CONCLUSIONS: Costs decreased and QoL was retained due to the PACE Steps to Success intervention. Significant cost savings and improvement in quality of end of life (care) as measured with the QOD-LTC were achieved. A clinically relevant difference of almost 3 nights shorter hospitalizations in favour of the intervention group was found. This indicates that timely palliative care in the LTCF setting can prevent lengthy hospitalizations while retaining QoL. In line with earlier findings, we conclude that integrating general palliative care into daily routine in LTCFs can be cost-effective. TRIAL REGISTRATION: ISRCTN14741671 .

Effectiveness of rehabilitation interventions in improving emotional and functional status in hearing or visually impaired older adults: a systematic review with meta-analyses.

OBJECTIVE: To assess the effectiveness of non-equipment based rehabilitation interventions for older adults with an age-related hearing or visual impairment. DATA SOURCES: We searched PubMed, EMBASE, PsychInfo, CINAHL, and the Cochrane Central Register of Controlled Trials. REVIEW METHODS: Two authors independently assessed trial eligibility, extracted data and assessed methodological quality. Controlled studies with more than 80% of participants aged ≥ 55 years and with rehabilitation interventions either separately or in combination with technical device provision were included. Meta-analyses were undertaken for the primary outcomes: emotional status, functional status, self-efficacy and social participation. All studies were categorized into 3 subgroups of intervention approaches (cognitive restructuring, education, and problem-solving), and subgroup analysis was performed. RESULTS: Fourteen studies were identified: six on hearing impairment and eight on visual impairment, involving 1622 sensory impaired participants (mean age 70). Methodological quality of the studies was modest. Eight studies offered data for meta-analysis. No significant effects in favour of interventions on either emotional or functional status, self-efficacy, or social participation were found. In the subgroup analysis, only the problem-solving approach showed a positive effect on emotional status. CONCLUSIONS: This review found no effects of non-equipment based rehabilitation interventions on emotional and functional status, self-efficacy, and social participation. However, subgroup analysis showed problem-solving as a potential effective approach for positively affecting emotional status.

Effectiveness of a training package for implementing a community-based occupational therapy program in dementia: a cluster randomized controlled trial.

OBJECTIVE: Evaluate the effectiveness of a training package to implement a community occupational therapy program for people with dementia and their caregiver (COTiD). DESIGN: Cluster randomized controlled trial. SUBJECTS: A total of 45 service units including 94 occupational therapists, 48 managers, 80 physicians, treating 71 client-caregiver couples. INTERVENTIONS: Control intervention: A postgraduate course for occupational therapists only. EXPERIMENTAL INTERVENTION: A training package including the usual postgraduate course, additional training days, outreach visits, regional meetings, and access to a reporting system for occupational therapists. Physicians and managers received newsletters, had access to a website, and were approached by telephone. PRIMARY OUTCOME: The intended adherence of therapists to the COTiD program. This was assessed using vignettes. SECONDARY OUTCOMES: clients' daily functioning, caregivers' sense of competence, quality of life, and self-perceived performance of daily activities of both clients and caregivers. Between-group differences were assessed using multilevel analyses with therapist and intervention factors as covariates. RESULTS: No significant between-group differences between baseline and 12 months were found for adherence (1.58, 95% CI -0.10 to 3.25), nor for any client or caregiver outcome. A higher number of coaching sessions and higher self-perceived knowledge of dementia at baseline positively correlated with adherence scores. In contrast, experiencing more support from occupational therapy colleagues or having conducted more COTiD treatments at baseline negatively affected adherence scores. CONCLUSION: The training package was not effective in increasing therapist adherence and client-caregiver outcomes. This study suggests that coaching sessions and increasing therapist knowledge on dementia positively affect adherence. CLINICAL TRIAL NUMBER: NCT01117285.

Pain is not systematically registered in Dutch medical oncology outpatients.

BACKGROUND: Systematic pain registration and assessment with a visual analog scale (VAS) or numeric rating scale (NRS) at each visit are key recommendations in one of the most recent guidelines on cancer pain management. It is unclear whether this recommendation is applied. OBJECTIVES: The aim was to explore registration of pain in medical records of patients visiting the medical oncology outpatient clinic. METHODS: In a multicenter study in six Dutch hospitals, data were extracted from medical records of 380 outpatients with cancer. Data of the first three visits at the outpatient clinic were studied. Descriptive statistics were conducted. RESULTS: In 23% of all 987 visits at the outpatient clinic, pain or absence of pain was registered, and in an additional 15%, a nonspecific symptom description was given. Regarding all other visits, (62%) pain or absence of pain was not documented at all. Pain measurement using a VAS or NRS was documented in only one visit. Pain was more often registered in medical records of patients with metastasis, as well as in those of patients with urogenital tumors. CONCLUSION: Pain in medical oncology outpatients is not systematically registered in their medical records. With one exception, pain was not registered with a VAS or NRS. Yet, registration and assessment of pain to monitor pain are essential to evaluate and adapt pain treatment over time. Pain registration has not improved since 2001 and therefore implementing the recommendations regarding systematic monitoring of pain is needed.

A structural multidisciplinary approach to depression management in nursing-home residents: a multicentre, stepped-wedge cluster-randomised trial.

BACKGROUND: Depression in nursing-home residents is often under-recognised. We aimed to establish the effectiveness of a structural approach to its management. METHODS: Between May 15, 2009, and April 30, 2011, we undertook a multicentre, stepped-wedge cluster-randomised trial in four provinces of the Netherlands. A network of nursing homes was invited to enrol one dementia and one somatic unit per nursing home. In enrolled units, nursing-home staff recruited residents, who were eligible as long as we had received written informed consent. Units were randomly allocated to one of five groups with computer-generated random numbers. A multidisciplinary care programme, Act in Case of Depression (AiD), was implemented at different timepoints in each group: at baseline, no groups were implenting the programme (usual care); the first group implemented it shortly after baseline; and other groups sequentially began implementation after assessments at intervals of roughly 4 months. Residents did not know when the intervention was being implemented or what the programme elements were; research staff were masked to intervention implementation, depression treatment, and results of previous assessments; and data analysts were masked to intervention implementation. The primary endpoint was depression prevalence in units, which was the proportion of residents per unit with a score of more than seven on the proxy-based Cornell scale for depression in dementia. Analyses were by intention to treat. This trial is registered with the Netherlands National Trial Register, number NTR1477. FINDINGS: 16 dementia units (403 residents) and 17 somatic units (390 residents) were enrolled in the course of the study. In somatic units, AiD reduced prevalence of depression (adjusted effect size -7·3%, 95% CI -13·7 to -0·9). The effect was not significant in dementia units (0·6, -5·6 to 6·8) and differed significantly from that in somatic units (p=0·031). Adherence to depression assessment procedures was lower in dementia units (69% [SD 19%]) than in somatic units (82% [15%]; p=0·045). Adherence to treatment pathways did not differ between dementia units (43% [SD 33%]) and somatic units (38% [40%]; p=0·745). INTERPRETATION: A structural approach to management of depression in nursing homes that includes assessment procedures can reduce depression prevalence in somatic units. Improvements are needed in depression screening in dementia units and in implementation of nursing-home treatment protocols generally. FUNDING: The Netherlands Organization for Health Research and Development.

Unmet needs and health-related quality of life in young-onset dementia.

OBJECTIVES: Young-onset dementia (YOD) causes specific challenges and issues that are likely to affect health-related quality of life (HRQOL). This study explored patient and caregiver HRQOL and its association with unmet needs in YOD. METHODS: A cross-sectional design was used to study 215 community-dwelling YOD patients and their primary caregivers. Multiple linear regression analyses were performed to determine the relationship between unmet needs assessed with the Camberwell Assessment of Need for the Elderly scale and patient and caregiver HRQOL, controlling for other variables such as demographic characteristics, patient functional status, neuropsychiatric symptoms, and caregiver sense of competence. RESULTS: Patient HRQOL was not associated with unmet needs. However, we found that the unmet needs of both patient and caregiver were related to several domains of caregiver HRQOL. CONCLUSIONS: This study shows that patient and caregiver unmet needs are related to caregiver HRQOL in YOD. However, the relationship between HRQOL and unmet needs is complex. The assessment of unmet needs within the context of HRQOL seems to be an important prerequisite for personalizing care in YOD. Adjusting supportive services to match the individual needs and preferences of these young patients and their caregivers is likely to enhance their quality of life.

The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study.

BACKGROUND: Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs. METHODS: Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes. RESULTS: The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services. CONCLUSION: In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study.

BACKGROUND: Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning. We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms. METHODS: A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers' report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models. RESULTS: Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms. CONCLUSIONS: Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary.

The use of formal and informal care in early onset dementia: results from the NeedYD study.

OBJECTIVE: Early onset dementia (EOD) poses specific challenges and issues for both the patient and (in)formal care. This study explores the use of (in)formal care prior to institutionalization, and its association with patient and caregiver characteristics. DESIGN/SETTING: Participants were part of a community-based prospective longitudinal study of 215 patients and their informal caregivers. PARTICIPANTS: Baseline data of a subsample of 215 patient-caregiver dyads were analyzed. MEASUREMENTS: Analyses of covariance were performed to determine correlates of (in)formal care use assessed with the Resource Utilization in Dementia (RUD)-Lite questionnaire. RESULTS: Informal care had a 3:1 ratio with formal care. Supervision/surveillance constituted the largest part of informal care. In more than half of cases, patients had only one informal caregiver. The amount of informal care was associated with disease severity, showing more informal care hours in advanced disease stages. Fewer informal care hours were related to more caregiver working hours, especially in younger patients. The amount of formal care was related to disease severity, behavioral problems, and initiative for activities of daily living. CONCLUSION: In EOD, it appears that family members provide most of the care. However, other social roles still have to be fulfilled. Especially in spousal caregivers of younger patients in advanced disease stages, there is a double burden of work and care responsibilities. This finding also indicates that even within the EOD group there might be important age-related differences. The relatively higher amount of formal care use during advanced disease stages suggests a postponement in the use of formal care.

Awareness and its association with affective symptoms in young-onset and late-onset Alzheimer disease: a prospective study.

BACKGROUND: It is unknown whether there are differences between young-onset dementia and late-onset dementia in awareness levels and whether awareness is differentially associated with affective symptoms in both groups. The present study assesses possible differences between young-onset (YO-AD) and late-onset Alzheimer disease (LO-AD) in awareness levels and the association between awareness and affective symptoms. METHODS: This study included 142 YO-AD and 126 LO-AD patients and their caregivers from 2 prospective studies. The participants were assessed 3 times during 1 year. Awareness was assessed using the Guidelines for the Rating of Awareness Deficits, and affective symptoms were assessed using the anxiety and depression items of the Neuropsychiatric Inventory. Population-averaged logistic regressions were used to analyze awareness and its association with affective symptoms. RESULTS: The odds for impaired awareness in LO-AD were more than double the odds in YO-AD. Intact awareness was associated with depressive symptoms but not with anxiety. This effect was more pronounced in YO-AD compared with LO-AD at baseline. High awareness at baseline did not predict incident affective symptoms. CONCLUSIONS: Caregivers and clinicians should be prepared for affective symptoms in YO-AD patients with high awareness. The higher awareness in the YO-AD group also has potential positive implications for this group.

More insight into the concept of apathy: a multidisciplinary depression management program has different effects on depressive symptoms and apathy in nursing homes.

BACKGROUND: Apathy is common in nursing home (NH) residents and it overlaps with depression. This study examines the effects of a multidisciplinary depression program on apathy and depressive motivational and mood symptoms. METHODS: Secondary analyses of a stepped-wedge cluster-randomized controlled trial were conducted with six measurements. Sixteen dementia NH units and 17 somatic units were enrolled. In the intervention condition, a program containing depression assessment procedures and multidisciplinary treatment (activating strategies, psychotherapy, and medication) was introduced. Usual care was provided in the control condition. Outcomes were assessed using the 10-item Apathy Evaluation Scale and the Cornell Scale for Depression in Dementia. RESULTS: Intention-to-treat analyses showed that the whole depression management program reduced apathy in dementia units (p < 0.001; Cohen's d, -0.35), and depressive motivational symptoms in somatic units (p = 0.008; Cohen's d, -0.40). Depressive mood symptoms were not affected in both unit types. The effect on apathy in dementia units was mainly attributed to activating strategies (p < 0.001; Cohen's d, -0.73). The effect on motivational symptoms in somatic units was mainly attributed to psychotherapy (p = 0.002; Cohen's d, -0.80). Apathy worsening was associated with pharmacological depression treatment in both unit types (p = 0.009; Cohen's d, 0.35). CONCLUSIONS: Depression management may affect apathy and depressive symptoms differently, which underpins the position of apathy as a distinct syndrome. NH professionals can effectively use activating strategies in dementia units, and psychotherapy in somatic units. More research is needed on treating depressive mood symptoms, and on effects of antidepressants in NHs.

Effectiveness of a multifaceted implementation strategy on physicians' referral behavior to an evidence-based psychosocial intervention in dementia: a cluster randomized controlled trial.

BACKGROUND: To evaluate the effectiveness of a multifaceted implementation strategy on physicians' referral rate to and knowledge on the community occupational therapy in dementia program (COTiD program). METHODS: A cluster randomized controlled trial with 28 experimental and 17 control clusters was conducted. Cluster included a minimum of one physician, one manager, and two occupational therapists. In the control group physicians and managers received no interventions and occupational therapists received a postgraduate course. In the experimental group physicians and managers had access to a website, received newsletters, and were approached by telephone. In addition, physicians were offered one outreach visit. In the experimental group occupational therapists received the postgraduate course, training days, outreach visits, regional meetings, and access to a reporting system. Main outcome measure was the number of COTiD referrals received by each cluster which was assessed at 6 and 12 months after the start of the intervention. Referrals were included from both participating physicians (enrolled in the study and received either the control or experimental intervention) and non-participating physicians (not enrolled but of whom referrals were received by participating occupational therapists). Mixed model analyses were used to analyze the data. All analyses were based on the principle of intention-to-treat. RESULTS: At 12 months experimental clusters received significantly more referrals with an average of 5,24 referrals (SD 5,75) to the COTiD program compared to 2,07 referrals in the control group (SD 5,14). The effect size at 12 months was 0.58. Although no difference in referral rate was found for the physicians participating in the study, the number of referrals from non-participating physicians (t -2,55 / 43 / 0,02) differed significantly at 12 months. CONCLUSION: Passive dissemination strategies are less likely to result in changes in professional behavior. The amount of physicians exposed to active strategies was limited. In spite of this we found a significant difference in the number of referrals which was accounted for by more referrals of non-participating physicians in the experimental clusters. We hypothesize that the increase in referrals was caused by an increase in occupational therapists' efforts to promote their services within their network. TRIAL REGISTRATION: NCT01117285.

Comparative validation of proxy-based Montgomery-Åsberg depression rating scale and cornell scale for depression in dementia in nursing home residents with dementia.

OBJECTIVE: To 1) compare the accuracy of the Montgomery-Åsberg Depression Rating Scale (MADRS) and the Cornell Scale for Depression in Dementia (CSDD) in nursing home residents with dementia when professional caregivers are the only available source of information and 2) explore different methods to account for missing items. DESIGN: Cross-sectional design. SETTING: Nursing home (NH). PARTICIPANTS: One hundred one residents with dementia. MEASUREMENTS: NH residents with dementia were assessed on the presence of clinical depression using Provisional Diagnostic Criteria for Depression of Alzheimer's Disease. The MADRS and CSDD were administered in a structured interview with professional primary caregivers. RESULTS: Receiver operating characteristic analyses revealed no significant differences between areas under the empirical curve for MADRS and CSDD. Imputation of a lowest possible item score for missing items revealed larger areas than three other methods (significant result only for CSDD). A MADRS cutoff score of ">13" yielded the highest sum of sensitivity (78%) and specificity (66%). A CSDD cutoff score of ">6" yielded the highest sum of sensitivity (94%) and specificity (49%). Both scales showed high negative predictive values up to 100% and low positive predictive values not exceeding 50%. CONCLUSION: The proxy-based MADRS and CSDD did not differ in distinguishing depressed from nondepressed NH residents and may be used for screening purposes. For missing items, imputation of a lowest possib le item score may be applied. The MADRS and CSDD may be better used for ruling out rather than for ruling in depression.

Prevalence of neuropsychiatric symptoms in young-onset compared to late-onset Alzheimer's disease - part 1: findings of the two-year longitudinal NeedYD-study.

BACKGROUND/AIMS: Knowledge about neuropsychiatric symptoms in young-onset Alzheimer's disease (YO-AD) is scarce, but essential to establish a prognosis and plan care for YO-AD patients. The aim of this study is to assess frequency parameters of neuropsychiatric symptoms in YO-AD over 2 years and investigate whether there are differences compared with late-onset Alzheimer's disease (LO-AD). METHODS: 98 YO-AD and 123 LO-AD patients and caregivers from two prospective cohort studies were included and assessed every 6 months for 2 years, using the Neuropsychiatric Inventory to evaluate neuropsychiatric symptoms. RESULTS: Over the course of 2 years, the incidence, prevalence and persistence of neuropsychiatric symptoms were in general lower in YO-AD than in LO-AD, specifically for delusions, agitation, depression, anxiety, apathy, irritability and aberrant motor behavior. Frequency of individual symptoms showed large variability in both groups. Within the group of YO-AD patients, apathy was the most prevalent symptom. CONCLUSION: Neuropsychiatric symptoms, notably apathy, should be paid appropriate attention to in the diagnosis and treatment of YO-AD patients. Further research is needed to gain insight into the mechanisms underlying the differences in neuropsychiatric symptoms between YO-AD and LO-AD.

Nijmegen observer-rated depression scale for detection of depression in nursing home residents.

OBJECTIVE: This study aims to test the accuracy of the Nijmegen observer-rated depression (NORD) scale, a new short scale for screening of depression in nursing home (NH) residents with and without dementia. METHODS: This cross-sectional study with 103 residents with dementia (N = 19 depressed) and 72 residents without dementia (N = 10 depressed) was undertaken in 13 Dutch NH units. An elderly care physician and a psychologist of each unit assessed residents for the presence of clinical depression. Primary professional caregivers administered the NORD scale. RESULTS: Five of the six proposed items showed acceptable performance in screening for depression. Receiver operating characteristic analyses revealed significant areas under the empirical curve (AUC) for the 5-item NORD scale in the total sample (AUC = 0.83, p < 0.001), as well as in residents with dementia (AUC = 0.84, p < 0.001) and without dementia (AUC = 0.84, p < 0.001). The cutoff score of >1 showed the highest sum of sensitivity (100) and specificity (69) in non-dementia and >2 the highest sum of sensitivity (79) and specificity (77) in dementia. The cutoff score of >1 showed the lowest negative likelihood ratio of 0.0 in non-dementia and of 0.2 in dementia. The highest positive likelihood ratios were found for the cutoff of >2 in non-dementia (3.4) and for >4 in dementia (26.5). CONCLUSION: The 5-item NORD scale showed acceptable accuracy comparable with those of more extensive scales in other studies. It is easy and quick to administer and can be used for screening of depression in NH residents with or without dementia.

Improving person-centred care in nursing homes through dementia-care mapping: design of a cluster-randomised controlled trial.

BACKGROUND: The effectiveness and efficiency of nursing-home dementia care are suboptimal: there are high rates of neuropsychiatric symptoms among the residents and work-related stress among the staff. Dementia-care mapping is a person-centred care method that may alleviate both the resident and the staff problems. The main objective of this study is to evaluate the effectiveness and cost-effectiveness of dementia-care mapping in nursing-home dementia care. METHODS/DESIGN: The study is a cluster-randomised controlled trial, with nursing homes grouped in clusters. Studywise minimisation is the allocation method. Nursing homes in the intervention group will receive a dementia-care-mapping intervention, while the control group will receive usual care. The primary outcome measure is resident agitation, to be assessed with the Cohen-Mansfield Agitation Inventory. The secondary outcomes are resident neuropsychiatric symptoms, assessed with the Neuropsychiatric Inventory--Nursing Homes and quality of life, assessed with Qualidem and the EQ-5D. The staff outcomes are stress reactions, job satisfaction and job-stress-related absenteeism, and staff turnover rate, assessed with the Questionnaire about Experience and Assessment of Work, the General Health Questionnaire-12, and the Maastricht Job Satisfaction Scale for Health Care, respectively. We will collect the data from the questionnaires and electronic registration systems. We will employ linear mixed-effect models and cost-effectiveness analyses to evaluate the outcomes. We will use structural equation modelling in the secondary analysis to evaluate the plausibility of a theoretical model regarding the effectiveness of the dementia-care mapping intervention. We will set up process analyses, including focus groups with staff, to determine the relevant facilitators of and barriers to implementing dementia-care mapping broadly. DISCUSSION: A novelty of dementia-care mapping is that it offers an integral person-centred approach to dementia care in nursing homes. The major strengths of the study design are the large sample size, the cluster-randomisation, and the one-year follow-up. The generalisability of the implementation strategies may be questionable because the motivation for person-centred care in both the intervention and control nursing homes is above average. The results of this study may be useful in improving the quality of care and are relevant for policymakers. TRIAL REGISTRATION: The trial is registered in the Netherlands National Trial Register: NTR2314.

Act In case of Depression: the evaluation of a care program to improve the detection and treatment of depression in nursing homes. Study Protocol.

BACKGROUND: The aim of this study is evaluating the (cost-) effectiveness of a multidisciplinary, evidence based care program to improve the management of depression in nursing home residents of somatic and dementia special care units. The care program is an evidence based standardization of the management of depression, including standardized use of measurement instruments and diagnostical methods, and protocolized psychosocial, psychological and pharmacological treatment. METHODS/DESIGN: In a 19-month longitudinal controlled study using a stepped wedge design, 14 somatic and 14 dementia special care units will implement the care program. All residents who give informed consent on the participating units will be included. Primary outcomes are the frequency of depression on the units and quality of life of residents on the units. The effect of the care program will be estimated using multilevel regression analysis. Secondary outcomes include accuracy of depression-detection in usual care, prevalence of depression-diagnosis in the intervention group, and response to treatment of depressed residents. An economic evaluation from a health care perspective will also be carried out. DISCUSSION: The care program is expected to be effective in reducing the frequency of depression and in increasing the quality of life of residents. The study will further provide insight in the cost-effectiveness of the care program. TRIAL REGISTRATION: Netherlands Trial Register (NTR): NTR1477.

Group therapy for patients with mild cognitive impairment and their significant others: results of a waiting-list controlled trial.

BACKGROUND: Patients with mild cognitive impairment (MCI) have to deal with an uncertain prognosis and also face a multitude of memory-related problems and psychosocial consequences. A newly developed group programme proved to be feasible, however, it needed confirmation by a controlled study. AIM: This controlled study evaluates this group therapy for MCI patients aimed to help them accept and manage the memory problems and the psychosocial consequences. The programme combines elements from psychoeducation, cognitive rehabilitation and cognitive-behavioural therapy. PATIENTS AND METHODS: Ninety-three MCI patients received treatment, with 30 patients being first assigned to a waiting list, thus serving as their own control group. Pre- and post-treatment acceptance and helplessness were assessed using subscales of the Illness Cognition Questionnaire, while distress and general well-being were gauged with the Geriatric Depression Scale and subscales of the RAND-36. RESULTS: Linear mixed model analyses showed that, relative to the controls, acceptance had increased more in the intervention group compared to the waiting-list period (p = 0.034). Distress and general well-being showed no changes. Treatment responders demonstrating a clinically significant effect on acceptance and two of three secondary outcome measures had higher baseline levels of helplessness and fewer self-reported memory complaints in daily life than patients who did not improve. CONCLUSION: The intervention helped the patients deal better with their uncertain future in that they were overall better able to accept their condition, with especially the female patients showing a decrease in helplessness cognitions, although the effects were relatively small.

Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road.

BACKGROUND: Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers. METHODS: Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample. RESULTS: Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis. CONCLUSION: EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals' inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.

A new combined strategy to implement a community occupational therapy intervention: designing a cluster randomized controlled trial.

BACKGROUND: Even effective interventions for people with dementia and their caregivers require specific implementation efforts. A pilot study showed that the highly effective community occupational therapy in dementia (COTiD) program was not implemented optimally due to various barriers. To decrease these barriers and make implementation of the program more effective a combined implementation (CI) strategy was developed. In our study we will compare the effectiveness of this CI strategy with the usual educational (ED) strategy. METHODS: In this cluster randomized, single-blinded, controlled trial, each cluster consists of at least two occupational therapists, a manager, and a physician working at Dutch healthcare organizations that deliver community occupational therapy. Forty-five clusters, stratified by healthcare setting (nursing home, hospital, mental health service), have been allocated randomly to either the intervention group (CI strategy) or the control group (ED strategy). The study population consists of the professionals included in each cluster and community-dwelling people with dementia and their caregivers. The primary outcome measures are the use of community OT, the adherence of OTs to the COTiD program, and the cost effectiveness of implementing the COTiD program in outpatient care. Secondary outcome measures are patient and caregiver outcomes and knowledge of managers, physicians and OTs about the COTiD program. DISCUSSION: Implementation research is fairly new in the field of occupational therapy, making this a unique study. This study does not only evaluate the effects of the CI-strategy on professionals, but also the effects of professionals' degree of implementation on client and caregiver outcomes. CLINICAL TRIALS REGISTRATION: NCT01117285.