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Contains fulltext : 118735.pdf (publisher's version ) (Closed access), The present study examines the long-term effects of a 10-session cognitive behavioural group therapy for patients with mild cognitive impairment (MCI) and their significant others 6 to 8 months after completion of the intervention. Forty-seven MCI patients and 47 significant others participated in the follow-up assessment. Results of the RAND-36, Illness Cognition Questionnaire, IQCODE, GDS-15 and Sense of Competence Questionnaire at follow-up were compared with the post-intervention assessment. Our findings showed that the increased level of acceptance in the MCI patients was maintained at follow-up, with an increased insight into their cognitive decline compared with post-intervention assessment (p < 0.001). In both the patients and the significant others, helplessness and wellbeing were worse at follow up (p < 0.05), but sense of competence increased in the significant others (p < 0.05). These results indicate a need for extension of the support after completion of the program, for example by providing regular booster sessions.

Radboud Universiteit Nijmegen, 20 september 2013, Promotores : Vernooij-Dassen, M.J.F.J., Verhey, F.R.J. Co-promotores : Wollersheim, H.C.H., Adang, E.M.M., Contains fulltext : 112908.pdf (publisher's version ) (Open Access)

Item does not contain fulltext, 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.

Radboud Universiteit Nijmegen, 21 februari 2013, Promotores : Vernooij-Dassen, M.J.F.J., Weel, C. van, Vissers, K.C.P. Co-promotor : Dekkers, W.J.M., Contains fulltext : 105790.pdf (publisher's version ) (Open Access)

Radboud Universiteit Nijmegen, 4 september 2013, Promotor : Vernooij-Dassen, M.J.F.J. Co-promotores : Schoonhoven, L., Wollersheim, H.C.H., Contains fulltext : MMUBN000001_834763451.pdf (publisher's version ) (Open Access)

Contains fulltext : 125385.pdf (publisher's version ) (Open Access), 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. T

Item does not contain fulltext, 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.

Item does not contain fulltext, BACKGROUND: The extent to which specific factors influence diagnostic delays in dementia is unclear. Therefore, the aim of the present study was to compare duration from symptom onset to diagnosis for young-onset dementia (YOD) and late-onset dementia (LOD) and to assess the effect of age at onset, type of dementia, gender, living situation, education and family history of dementia on this duration. METHOD: Data on 235 YOD and 167 LOD patients collected from caregivers from two prospective cohort studies were used. Multiple linear regression analysis was performed. RESULTS: The duration between symptom onset and the diagnosis of YOD exceeded that of LOD by an average of 1.6 years (2.8 v. 4.4 years). Young age and being diagnosed with frontotemporal dementia were related to increases in the time to diagnosis. Subjects with vascular dementia experienced shorter time to diagnosis. CONCLUSIONS: There is a need to raise special awareness of YOD to facilitate a timely diagnosis.

Item does not contain fulltext, OBJECTIVE: To investigate the time from symptom onset to institutionalization in persons with young-onset dementia (YOD) and compare these findings with late-onset dementia (LOD), and to determine which factors predict institutionalization in persons with YOD compared with LOD. DESIGN/SETTING: Longitudinal study of community-dwelling patients with YOD and LOD and their caregivers. PARTICIPANTS: A total of 226 patients with YOD and 102 with LOD and their informal caregivers were recruited through memory clinics and health care facilities. MEASUREMENTS: Cox proportional hazard models were used to relate covariates with time to institutionalization. The main outcome was time from symptom onset to institutionalization. Key predictors were cohort (YOD or LOD), neuropsychiatric symptoms, caregiver distress caused by neuropsychiatric symptoms, and caregivers' sense of competence (Short Sense of Competence Questionnaire total score). RESULTS: The time from symptom onset to institutionalization was nearly 9 years for patients with YOD compared with approximately 4 years for patients with LOD. In the YOD group, apathy significantly predicted time of institutionalization. Furthermore, the caregiver's competence in caring for the person with dementia significantly predicted institutionalization in both groups. CONCLUSIONS: Patients with YOD are cared for at home for a longer period than patients with LOD. The results of this study underline the importance of a timely diagnosis for these patients and their families to facilitate the initiation of appropriate care and support. Support programs aimed at enhancing the caregivers' sense of competence and ability to deal with neuropsychiatric symptoms, especially apathy, may postpone the institutionalization of the patient.

Item does not contain fulltext, This controlled study examines the efficacy of a comprehensive group program aimed at care partners of patients with mild cognitive impairment (MCI), which comprises elements of psychoeducation, cognitive rehabilitation, and cognitive behavioral therapy. Pre- and posttreatment quantitative and qualitative data were collected in the significant others of 84 patients with MCI, 27 of whom had first been assigned to a waiting list, thus serving as their own control group. Also, the significant others rated their sense of competence, well-being, distress, acceptance, helplessness, and awareness. Quantitative data analysis did not reveal statistically significant differences between the control and the intervention condition, but qualitative results suggest that at program completion the significant others reported gains in knowledge, insight, acceptance, and coping skills. In the present sample of significant others, the group intervention was not proven effective. Suggestions for program adjustments and alternative outcome measures are discussed.

Item does not contain fulltext, Background: Euthanasia has been legally performed in the Netherlands since 2002. Respect for patient's autonomy is the underpinning ethical principal. However, patients have no right to euthanasia, and physicians have no obligation to provide it. Although over 3000 cases are conducted per year in the Netherlands, there is little known about how decision-making occurs and no guidance to support this difficult aspect of clinical practice. Aim: To explore the decision-making process in cases where patients request euthanasia and understand the different themes relevant to optimise this decision-making process. Design: A qualitative thematic analysis of interviews with patients making explicit requests for euthanasia, most-involved relative(s) and treating physician. Participants/setting: Thirty-two cases, 31 relatives and 28 treating physicians. Settings were patients' and relatives' homes and physicians' offices. Results: Five main themes emerged: (1) initiation of sharing views and values about euthanasia, (2) building relationships as part of the negotiation, (3) fulfilling legal requirements, (4) detailed work of preparing and performing euthanasia and (5) aftercare and closing. Conclusions: A patient's request for euthanasia entails a complex process that demands emotional work by all participants. It is characterised by an intensive period of sharing information, relationship building and negotiation in order to reach agreement. We hypothesise that making decisions about euthanasia demands a proactive approach towards participants' preferences and values regarding end of life, towards the needs of relatives, towards the burden placed on physicians and a careful attention to shared decision-making. Future research should address the communicational skills professionals require for such complex decision-making.

Item does not contain fulltext, 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.

Item does not contain fulltext, BACKGROUND: Organizational culture is seen as having a growing impact on quality and safety of health care, but its impact on hospital to community patient discharge is relatively unknown. OBJECTIVES: To explore aspects of organizational culture to develop a deeper understanding of the discharge process. RESEARCH DESIGN: A qualitative study of stakeholders in the discharge process. Grounded Theory was used to analyze the data. SUBJECTS: In 5 European Union countries, 192 individual and 25 focus group interviews were conducted with patients and relatives, hospital physicians, hospital nurses, general practitioners, and community nurses. RESULTS: Three themes emerged representing aspects of organizational culture: a fragmented hospital to primary care interface, undervaluing administrative tasks relative to clinical tasks in the discharge process, and lack of reflection on the discharge process or process improvement. Nine categories were identified: inward focus of hospital care providers, lack of awareness to needs, skills, and work patterns of the professional counterpart, lack of a collaborative attitude, relationship between hospital and primary care providers, providing care in a "here and now" situation, administrative work considered to be burdensome, negative attitude toward feedback, handovers at discharge ruled by habits, and appreciating and integrating new practices. CONCLUSIONS: On the basis of the data, we hypothesize that the extent to which hospital care providers value handovers and the outreach to community care providers is critical to effective hospital discharge. Community care providers often are insufficiently informed about patient outcomes. Ongoing challenges with patient discharge often remain unspoken with opportunities for improvement overlooked. Interventions that address organizational culture as a key factor in discharge improvement efforts are needed.

Item does not contain fulltext, OBJECTIVE: To identify barriers experienced and perceived at discharge by physicians, nurses, patients and relatives. DESIGN: We developed questionnaires based on focus group interviews with hospital and community care providers, and individual interviews with patients and relatives. A survey was conducted among patients, relatives and related nurses and physicians from hospital and community care. SETTING: One university hospital and the related community care area in the Netherlands. PARTICIPANTS: Thirty health-care providers and eight patients and/or relatives participated in focus group and individual interviews. Questionnaires were returned by 344 health-care providers and 206 patients and relatives. RESULTS: Information from the hospital to community care is often incomplete, unclear and delayed. Especially hospital physicians (52%) and general practitioners (GPs; 63%) experience the quality of information exchanged from the hospital to the GP as poor. Coordination of care is often frustrated by a lack of care provider knowledge and collaboration. Hospital physicians (47%) and GPs (71%) feel that hospital physicians are often not sufficiently aware of the patient's home situation. Respectively, 59 and 81% experience that the GP is often not clearly informed about expected tasks and responsibilities at discharge. CONCLUSIONS: This is the first study that provides a clear picture of the experiences and perceptions of stakeholders regarding handovers at hospital discharge. Lack of knowledge, understanding and interest between hospital and community care providers are important causes for ineffective and unsafe discharge. The study suggests that improvement efforts should be focused more on these aspects, as primary conditions for improving hospital discharge.

Radboud Universiteit Nijmegen, 26 april 2012, Promotores : Kessels, R.P.C., Olde Rikkert, M.G.M., Vernooij-Dassen, M.J.F.J. Co-promotor : Prins, J.B., Contains fulltext : 93575.pdf (publisher's version ) (Open Access)

Contains fulltext : 93625.pdf (publisher's version ) (Closed access)

21 september 2012, Promotores : Vernooij-Dassen, M.J.F.J., Olde Rikkert, M.G.M., Contains fulltext : 99149.pdf (publisher's version ) (Open Access)

Contains fulltext : 108278.pdf (postprint version ) (Open Access), 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 appro

Radboud Universiteit Nijmegen, 24 september 2012, Promotores : Koopmans, R.T.C.M., Vernooij-Dassen, M.J.F.J. Co-promotores : Gerritsen, D.L., Smalbrugge, M., Contains fulltext : 108414.pdf (Publisher’s version ) (Open Access)

1 juni 2012, Item does not contain fulltext, BACKGROUND: A multidisciplinary, evidence-based care program to improve the management of depression in nursing home residents was implemented and tested using a stepped-wedge design in 23 nursing homes (NHs): "Act in case of Depression" (AiD). OBJECTIVE: Before effect analyses, to evaluate AiD process data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, extent to which AiD was performed), which can be used for understanding internal and external validity. In this article, a model is presented that divides process evaluation data into first- and second-order process data. METHODS: Qualitative and quantitative data based on personal files of residents, interviews of nursing home professionals, and a research database were analyzed according to the following process evaluation components: sampling quality and intervention quality. SETTING: Nursing home. RESULTS: The pattern of residents' informed consent rates differed for dementia special care units and somatic units during the study. The nursing home staff was satisfied with the AiD program and reported that the program was feasible and relevant. With the exception of the first screening step (nursing staff members using a short observer-based depression scale), AiD components were not performed fully by NH staff as prescribed in the AiD protocol. CONCLUSION: Although NH staff found the program relevant and feasible and was satisfied with the program content, individual AiD components may have different feasibility. The results on sampling quality implied that statistical analyses of AiD effectiveness should account for the type of unit, whereas the findings on intervention quality implied that, next to the type of unit, analyses should account for the extent to which individual AiD program components were performed. In general, our first-order process data evaluation confirmed internal and external validity of the AiD trial, and this evaluation enabled

1 juli 2012, Item does not contain fulltext, OBJECTIVE: Implementing evidence-based guidelines is not a simple task. This study aimed to define barriers to and facilitators for implementing the proven and effective Community Occupational Therapy in Dementia (COTiD) guideline for older people with dementia and their carers. METHODS: The qualitative method we used was the grounded theory. We collected data from focus group interviews with 17 occupational therapists (OTs) and telephone interviews with 10 physicians and 4 managers. We analysed the data with the constant comparative method by identifying codes, categories, and main themes. RESULTS: The main themes in barriers that OTs encountered were that they did not feel competent in treating older people with dementia at home according to the guideline; they had difficulties prioritising in this complex treatment, both for the client and themselves; and they were unsure about the minimal criteria for guideline adherence. The intensity of this programme was the main barrier. The barriers that confronted physicians and managers were lack of knowledge about occupational therapy and its reimbursement and lack of available trained OTs. For the OTs, the guideline's content and focus, evidence, and external support facilitated the use of the guideline. For physicians and managers, the guideline's evidence base and its benefits for clients and carers were the main facilitators. CONCLUSIONS: This study generates knowledge for applying innovations in health care settings. Improvement of the OTs' knowledge and self-confidence is needed for using the guideline. We expect that more competent OTs will motivate their physicians and managers to use this successful COTiD intervention. Copyright (c) 2011 John Wiley & Sons, Ltd.

Contains fulltext : 109871.pdf (publisher's version ) (Open Access)

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1 maart 2012, Item does not contain fulltext, BACKGROUND: The purpose of the study was to translate the Interview for Deterioration in Daily Living Activities in Dementia (IDDD) into German and to evaluate the construct and concurrent validity in people with mild to moderate dementia. METHODS: IDDD data of two pooled samples (n = 301) were analyzed regarding ceiling and bottom effects, internal consistency, factor reliability and correlations with corresponding scales on cognition and activities of daily living. RESULTS: We found minimal bottom (< 5%) and ceiling ( 0.7) and moderate to good factor reliability (0.66-0.87). Low correlations with cognition (Pearson coefficient: < 0.17) confirmed the differences between cognitive testing and activities of daily living (ADL). Minor correlations with other ADL scores (r < 0.2) indicated that different scores cover a different range of ADLs. The original two factor model could not be confirmed. A suggested four factor model distinguishing initiative and performance of basic and instrumental ADL demonstrated better indices of fit and higher correlations with corresponding scales. CONCLUSION: A four factor model of the IDDD can be used in dementia research for assessing initiative in and performance of basic and household activities of daily living. The findings suggest that ADL scales correlate only poorly and that further development of the IDDD is needed to cover a broader range of ADLs.

Item does not contain fulltext, OBJECTIVE: In medical education the focus has shifted from gaining knowledge to developing competencies. To effectively monitor performance in practice throughout the entire training, a new approach of assessment is needed. This study aimed to evaluate an instrument that monitors the development of competencies during postgraduate training in the setting of training of general practice: the Competency Assessment List (Compass). METHODS: The distribution of scores, reliability, validity, responsiveness and feasibility of the Compass were evaluated. RESULTS: Scores of the Compass ranged from 1 to 9 on a 10-point scale, showing excellent internal consistency ranging from .89 to .94. Most trainees showed improving ratings during training. Medium to large effect sizes (.31-1.41) were demonstrated when we compared mean scores of three consecutive periods. Content validity of the Compass was supported by the results of a qualitative study using the RAND modified Delphi Method. The feasibility of the Compass was demonstrated. CONCLUSION: The Compass is a competency based instrument that shows in a reliable and valid way trainees' progress towards the standard of performance. PRACTICE IMPLICATIONS: The programmatic approach of the Compass could be applied in other specialties provided that the instrument is tailored to specific needs of that specialism.

Radboud Universiteit Nijmegen, 18 januari 2012, Promotores : Olde Rikkert, M.G.M., Vernooij-Dassen, M.J.F.J., Hüll, M. Co-promotor : Graff, M.J.L., Contains fulltext : 91434.pdf (publisher's version ) (Open Access)

Item does not contain fulltext, BACKGROUND: Evidence shows that suboptimum handovers at hospital discharge lead to increased rehospitalizations and decreased quality of health care. PURPOSE: To systematically review interventions that aim to improve patient discharge from hospital to primary care. DATA SOURCES: PubMed, CINAHL, PsycInfo, the Cochrane Library, and EMBASE were searched for studies published between January 1990 and March 2011. STUDY SELECTION: Randomized, controlled trials of interventions that aimed to improve handovers between hospital and primary care providers at hospital discharge. DATA EXTRACTION: Two reviewers independently abstracted data on study objectives, setting and design, intervention characteristics, and outcomes. Studies were categorized according to methodological quality, sample size, intervention characteristics, outcome, statistical significance, and direction of effects. DATA SYNTHESIS: Of the 36 included studies, 25 (69.4%) had statistically significant effects in favor of the intervention group and 34 (94.4%) described multicomponent interventions. Effective interventions included medication reconciliation; electronic tools to facilitate quick, clear, and structured summary generation; discharge planning; shared involvement in follow-up by hospital and community care providers; use of electronic discharge notifications; and Web-based access to discharge information for general practitioners. Statistically significant effects were mostly found in reducing hospital use (for example, rehospitalizations), improvement of continuity of care (for example, accurate discharge information), and improvement of patient status after discharge (for example, satisfaction). LIMITATIONS: Heterogeneity of the interventions and study characteristics made meta-analysis impossible. Most studies had diffuse aims and poor descriptions of the specific intervention components. CONCLUSION: Many interventions have positive effects on patient care. However, given the complexity of interv

Item does not contain fulltext, OBJECTIVE: : To 1) compare the accuracy of the Montgomery-Asberg 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.

1 januari 2012, Item does not contain fulltext, OBJECTIVE: The effectiveness of psychosocial interventions in treating people with dementia and their carers is increasingly emphasised in the literature. Dementia guidelines should summarise the scientific evidence and best practice that is currently available, therefore, it should include recommendations for psychosocial interventions. The aims of our study were (1) to collate dementia guidelines from countries across Europe and to check whether they included sections about psychosocial interventions, and (2) to compare the methodological quality and the recommendations for specific psychosocial interventions in these guidelines. METHODS: The European dementia guidelines were inventoried. The methodological quality of the guideline sections for psychosocial interventions was assessed with the (AGREE) Appraisal of Guidelines Research and Evaluation instrument. The recommendations for specific psychosocial interventions were extracted from each of these guidelines and compared. RESULTS: Guidelines for psychosocial interventions were found in five of 12 countries. Guideline developers, methodological quality and appreciation of available evidence influenced the inclusion of psychosocial interventions in dementia guidelines from Germany, Italy, the Netherlands, Spain and the UK. The UK NICE SCIE guideline had the best methodological quality and included the most recommendations for psychosocial interventions. Physical activity and carer interventions were recommended the most across all guidelines. CONCLUSION: The inclusion of psychosocial interventions in dementia guidelines is limited across Europe. High-quality guidelines that include psychosocial interventions and are kept up to date with the emerging evidence are needed. Throughout Europe, special attention to the implementation of evidence-based psychosocial care is needed in the next few years.

1 juni 2012, Item does not contain fulltext, BACKGROUND: The evidence for the effectiveness of psychosocial interventions in dementia care is growing but the implementation of available evidence is not automatic. Our objective was to develop valid quality indicators (QIs) for psychosocial dementia care that facilitate the implementation process in various countries and settings. METHODS: A RAND-modified Delphi technique was used to develop a potential set of QIs. Two multidisciplinary, international expert panels were involved in achieving content and face validity. Consensus on the final set was reached after a conference meeting where a third panel of dementia experts discussed measurability and applicability of the potential set. A retrospective cohort study was conducted to study the feasibility of using the final set in day care centers, hospitals, and nursing homes in Spain and The Netherlands. RESULTS: A total of 104 recommendations were selected from guidelines and systematic reviews and appraised for their contribution to improving the quality of dementia care by 49 dementia experts. Twenty-five experts attended the conference meeting and reached consensus on a set of 12 QIs representing the key elements of effective psychosocial care, such as shared decision-making and interventions tailored to needs and preferences. Data from 153 patient records showed that all but one QI subitem were applicable to all three settings in both countries. CONCLUSION: Our multidisciplinary and multinational strategy resulted in a set of unique QIs that aims exclusively at assessing the quality of psychosocial dementia care. Following implementation, these QIs will assist dementia care professionals to individualize and tailor psychosocial interventions.

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Radboud Universiteit Nijmegen, 12 december 2011, Promotores : Vernooij-Dassen, M.J.F.J., Olde Rikkert, M.G.M. Co-promotor : Graff, M.J.L., Contains fulltext : 96812.pdf (Publisher’s version ) (Open Access)

Contains fulltext : 97731.pdf (publisher's version ) (Open Access), BACKGROUND: The balance of evidence about whether psychosocial interventions for caregivers of people with dementia could reduce carers' psychological morbidity and delay their relatives' institutionalisation is now widely regarded as moderately positive (Brodaty 2003; Spijker 2008). Multi-component, tailor-made psychosocial interventions are considered to be particularly promising (Brodaty 2003; Spijker 2008). These interventions involve multiple mechanisms of action. In this review we focused solely on the effectiveness of one element within psychosocial interventions, cognitive reframing. Cognitive reframing is a component of cognitive behavioral therapy (CBT). In dementia care, cognitive reframing interventions focus on family carers' maladaptive, self-defeating or distressing cognitions about their relatives' behaviors and about their own performance in the caring role. OBJECTIVES: The objective of this review was to evaluate the effectiveness of cognitive reframing interventions for family carers of people with dementia on their psychological morbidity and stress. SEARCH STRATEGY: The trials were identified by searching (5 April 2009) the Cochrane Dementia and Cognitive Improvement Group Specialized Register, which contains records from major healthcare databases: The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL and LILACS, ongoing trial databases and grey literature sources. For more detailed information on what the Group's specialized register contains and to view the search strategies see the Cochrane Dementia and Cognitive Improvement Group methods used in reviews.The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS and a number of trial registers and grey literature sources were also searched separately on 5 April 2009. SELECTION CRITERIA: Randomised controlled trials of cognitive reframing interventions for family carers of people with dementia. DATA COLLECTION AND ANALYSIS: Three assessors (MVD, ID, JmC) independently judged whether th

Item does not contain fulltext, OBJECTIVE: To evaluate the effectiveness of the Systematic Care Program for Dementia (SCPD) on patient institutionalization and to determine the predictors of institutionalization. DESIGN: Single-blind, multicenter, cluster-randomized, controlled trial. SETTING: Six community mental health services (CMHSs) across the Netherlands. PARTICIPANTS: A total of 295 patient-caregiver dyads referred to a CMHS with suspected patient dementia. INTERVENTION: Training of health professionals in the SCPD and its subsequent use. The SCPD consists of a systematic assessment of caregiver problems and alerts health professionals in flexible, connecting, proactive interventions to them. The intensity of the SCPD depends on the judgment of the health professional, based on individual caregiver needs. PRIMARY OUTCOME: Institutionalization in long-term care facilities at 12 months of follow-up. RESULTS: No main intervention effect on institutionalization was found. However, a better sense of competence in the control group reduced the chance of institutionalization but not in the intervention group. The caregiver's sense of competence and depressive symptoms and the patient's behavioral problems and severity of dementia were the strongest predictors of institutionalization. The intensity of the program was low, even for dyads exposed to the SCPD. CONCLUSIONS: Although no main effect was found, the results suggest that the SCPD might prevent a deterioration of the sense of competence in the intervention group. The intensity of a program is crucial and should be prescribed on the basis of evidence rather than left to the discretion of health professionals. Future controlled trials in daily clinical practice should use a process analysis to control for compliance.

Contains fulltext : 95616.pdf (publisher's version ) (Open Access), 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.

Item does not contain fulltext, OBJECTIVE: To determine the effects of educational interventions about dementia, directed at primary care providers (PCPs). DESIGN: We searched Medline, Embase, PsycInfo, Cinahl and the Cochrane library for relevant articles. Two researchers independently assessed the citations identified against the following inclusion criteria: educational intervention on dementia directed at PCPs and study designs being randomized controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) or interrupted time series (ITS) analyses. Outcomes of interest were PCPs' knowledge and attitude on dementia, and quality of dementia care at PCP and patient level. RESULTS: Of 3953 citations identified, six articles representing five studies (four cluster RCTs and one CBA) were eligible, describing educational interventions directed at 1904 PCPs. Compliance to the interventions varied from 18 to 100%. Systematic review of the studies showed moderate positive results. Five articles reported at least some effects of the interventions. A small group workshop and a decision support system (DSS) increased dementia detection rates. An interactive 2-h seminar raised GPs' suspicion of dementia. Adherence to dementia guidelines only improved when an educational intervention was combined with the appointment of dementia care managers. This combined intervention also improved patients' and caregivers' quality of life. Effects on knowledge and attitudes were minor. CONCLUSION: Educational interventions for PCPs that require active participation improve detection of dementia. Educational interventions alone do not seem to increase adherence to dementia guidelines. To effectively change professionals' performance in primary dementia care, education probably needs to be combined with adequate reimbursement or other organizational incentives.

Item does not contain fulltext, 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.

Contains fulltext : 97517.pdf (publisher's version ) (Open Access), Background The positive effects of the Dutch Community Occupational Therapy in Dementia programme on patients' daily functioning were not found in a multicentre randomised controlled trial (RCT) in Germany. Objectives To evaluate possible effect modification on the primary outcome within the German RCT with regard to (1) participant characteristics, (2) treatment performance and (3) healthcare service utilisation; and (4) to compare the design and primary outcome between the German and the original Dutch study. Methods (1) The impact of participant baseline data on the primary outcome was analysed in exploratory ANCOVA and regression analyses. (2) Therapists completed questionnaires on context and performance problems. The main problems were identified by a qualitative content analysis and focus-group discussion. Associations of the primary outcome with scores of participant adherence and treatment performance were evaluated by regression analysis. (3) Utilisation rates of healthcare services were controlled for significant group differences. (4) Differences in the Dutch and German study design were identified, and the primary outcome was contrasted at the item level. Results (1) Participant characteristics could not explain more than 5% of outcome variance. (2) The treatment performance of some active intervention components was poor but not significantly associated with the primary outcome. (3) There were no significant group differences in the utilisation of healthcare resources. (4) In contrast to the Dutch waiting-control group, the active intervention in the German control group may have reduced group differences in the current RCT. The German patients demonstrated a higher independence at baseline and less improvement in instrumental activities of daily living. Conclusion The differences in outcome may be explained by a more active control treatment, partially poor experimental treatment and less room for improvement in the German sample. Future cross-nationa

Contains fulltext : 97575.pdf (publisher's version ) (Open Access), 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.

Contains fulltext : 98286.pdf (publisher's version ) (Open Access), BACKGROUND: One-half of patients with cancer have pain. In nearly one out of two cancer patients with pain, this was undertreated. Inadequate pain control still remains an important problem in this group of patients. Therefore, in 2008 a national, evidence-based multidisciplinary clinical practice guideline 'pain in patients with cancer' has been developed. Yet, publishing a guideline is not enough. Implementation is needed to improve pain management. An innovative implementation strategy, Short Message Service with Interactive Voice Response (SVS-IVR), has been developed and pilot tested. This study aims to evaluate on effectiveness of this strategy to improve pain reporting, pain measurement and adequate pain therapy. In addition, whether the active role of the patient and involvement of caregivers in pain management may change. METHODS/DESIGN: A cluster randomised controlled trial with two arms will be performed in six oncology outpatient clinics of hospitals in the Southeastern region of the Netherlands, with three hospitals in the intervention and three in the control condition. Follow-up measurements will be conducted in all hospitals to study the long-term effect of the intervention. The intervention includes training of professionals (medical oncologists, nurses, and general practitioners) and SMS-IVR to report pain in patients with cancer to improve pain reporting by patients, pain management by medical oncologists, nurses, and general practitioners, and decrease pain intensity. DISCUSSION: This innovative implementation strategy with technical tools and the involvement of patients, may enhance the use of the guideline 'pain in patients with cancer' for pain management. Short Message Service alerts may serve as a tool to support self-management of patients. Therefore, the SMS-IVR intervention may increase the feeling of having control over one's life. TRAIL REGISTRATION: Netherlands Trial Register (NTR): NTR2739.

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Radboud Universiteit Nijmegen, 21 september 2011, Promotores : Olde Rikkert, M.G.M., Vernooij-Dassen, M.J.F.J. Co-promotores : Draskovic, I., Lucassen, P.L.B.J., Contains fulltext : 97804.pdf (Publisher’s version ) (Open Access)

Item does not contain fulltext, Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study using in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become 'unbearable'. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future.

1 april 2010, Contains fulltext : 88609.pdf (publisher's version ) (Closed access), Most publications on the ethical aspects of genetic research into Alzheimer's Disease (AD) concentrate on the differences between the opinions of professionals and non-professionals. Differences in rating of morally relevant issues between groups of professionals have not yet been described. A modified Delphi study in two rounds was held to identify differences between groups of experts (i.e. clinicians, representatives of patient organisations, ethicists and persons with a commercial background). The strongest correlation was found between the opinions of ethicists and representatives of patient organisations (0.67) and between clinicians and ethicists (0.62). Moderate correlation (0.55) was found between the opinions of clinicians and representatives of patient organisations. Persons with a commercial background showed a weak correlation with clinicians (0.41), ethicists (0.35) and representatives of patient organisations (0.30). These differences in rating of morally relevant issues between various professional groups are relevant for clinical practice and dementia care, particularly the different rating of prenatal diagnosis found between clinicians and representatives of patient organisations. Interdisciplinary consultations between various professional groups -including at least researchers, clinicians and ethicists -are recommended to guarantee that all considerations will be incorporated into the debate on ethical issues of genetic research into AD.

1 november 2010, Contains fulltext : 89553.pdf (publisher's version ) (Closed access), BACKGROUND: Psychosocial interventions in long-term care have the potential to improve the quality of care and quality of life of persons with dementia. Our aim is to explore the evidence and consensus on psychosocial interventions for persons with dementia in long-term care. METHODS: This study comprises an appraisal of research reviews and of European, U.S. and Canadian dementia guidelines. RESULTS: Twenty-eight reviews related to long-term care psychosocial interventions were selected. Behavioral management techniques (such as behavior therapy), cognitive stimulation, and physical activities (such as walking) were shown positively to affect behavior or physical condition, or to reduce depression. There are many other promising interventions, but methodological weaknesses did not allow conclusions to be drawn. The consensus presented in the guidelines emphasized the importance of care tailored to the needs and capabilities of persons with dementia and consideration of the individual's life context. CONCLUSIONS: Long-term care offers the possibility for planned care through individualized care plans, and consideration of the needs of persons with dementia and the individual life context. While using recommendations based on evidence and consensus is important to shape future long-term care, further well-designed research is needed on psychosocial interventions in long-term care to strengthen the evidence base for such care.

Contains fulltext : 89407.pdf (publisher's version ) (Open Access), BACKGROUND: Early onset dementia has serious consequences for patients and their family members. Although there has been growing attention for this patient group, health care services are still mainly targeted at the elderly. Specific knowledge of the needs of early onset dementia patients and their families is limited but necessary for the development of adequate health care services and specific guidelines. This research project is mainly targeted at delineating the course of early onset dementia, the functional characteristics and needs of early onset dementia patients and their caregivers, the risk factors for institutionalization and the interaction with the caring environment. METHODS/DESIGN: The NeedYD-study (Needs in Young Onset Dementia) is a longitudinal observational study investigating early onset dementia patients and their caregivers (n = 217). Assessments are performed every six months over two years and consist of interviews and questionnaires with patients and caregivers. The main outcomes are (1) the needs of patients and caregivers, as measured by the Camberwell Assessment of Needs for the Elderly (CANE) and (2) neuropsychiatric symptoms, as measured by the NeuroPsychiatric Inventory (NPI). Qualitative analyses will be performed in order to obtain more in-depth information on the experiences of EOD patients and their family members. The results of this study will be compared with comparable data on late onset dementia from a historical cohort. DISCUSSION: The study protocol of the NeedYD-study is presented here. To our knowledge, this study is the first prospective cohort study in this research area. Although some limitations exist, these do not outweigh the strong points of this study design.