Search

Informal caregivers are the primary source of support for adults with chronic conditions and disabilities. Empirical research highlights chronic stress and other risks of adverse outcomes of caregiving. Acceptance and Commitment Therapy (ACT) is an emerging evidenced-based practice that shows promise in improving an array of outcomes, theoretically by increasing psychological flexibility as the primary process of change. Research has begun to evaluate ACT among informal caregivers of adult populations, and a systematic review is now needed to summarise this evidence base. Electronic searches from five databases, including PubMed, PsycInfo, Embase, CINAHL, and Cochrane Library, yielded an initial 7896 hits, which after screening for inclusion criteria, resulted in 21 clinical trials. Studies were coded to synthesise the feasibility, effectiveness, and quality of evidence. Findings show that ACT was reported to be largely feasible and acceptable. However, the efficacy of ACT was mixed, with a more consistent pattern for informal caregivers of people with dementia. Several methodological quality issues limited the findings. However, theoretical synthesis and preliminary evidence support the promising effect of ACT in subgroups of informal caregivers. Research on the process of change, as well as larger-scale, methodologically rigorous trials, are needed to consolidate these findings. • ACT has been empirically evaluated for informal caregivers of adults with chronic conditions. • Limitations in the quality of studies were observed, but initial evidence is promising. • The implication of ACT in the context of caregiving is discussed. • More research is needed to consolidate findings in subgroups of caregivers. • Future research should focus on ACT process functioning and effectiveness in caregivers. [ABSTRACT FROM AUTHOR]

Objectives: This study describes the process evaluation of the experience sampling method (ESM) intervention ‘Partner in Sight’ for spousal caregivers of people with dementia. The aim was to determine internal and external validity of the intervention and provide information for future implementation in clinical practice. Method: Qualitative and quantitative data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, adherence to protocol) were evaluated using descriptive statistics and conventional content analysis. Results: The participation rate included 31.4%. Due to recruitment difficulties and time constraints the original goal to include 90 caregivers was not met. The intervention was largely performed according to protocol and well received by the participants. Overall, the ESM-derived feedback was considered supportive and increased participants’ awareness of their feelings and behavior. A large variance was found in the extent to which caregivers applied the feedback into their daily lives. The importance of the personal coach to provide face-to-face feedback and stimulate caregivers to implement new insights into their daily lives was emphasized. Suggestions for improvement were to reduce the time intensity of the program, to better tailor the program content to one's personal situation, and to improve the ESM device. Conclusion: Although recruitment barriers were encountered, results indicate that future implementation of the ESM intervention ‘Partner in Sight’ is likely to be feasible in regular health care. If the intervention turns out to be (cost-) effective, a fine-tuned version of the program could be a valuable addition to the current health care system. [ABSTRACT FROM AUTHOR]

Background: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD). Objective: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes. Methods: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP. Results: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics. Conclusions: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems. [ABSTRACT FROM AUTHOR]

Introduction: Caregivers differ in their emotional response when facing difficult situations during the caregiving process. Individual differences in vulnerabilities and resources could play an exacerbating or buffering role in caregivers’ reactivity to daily life stress. This study examines which caregiver characteristics modify emotional stress reactivity in dementia caregivers. Methods: Thirty caregivers collected momentary data, as based on the experience sampling methodology, to assess (1) appraised subjective stress related to events and minor disturbances in daily life, and (2) emotional reactivity to these daily life stressors, conceptualized as changes in negative affect. Caregiver characteristics (i.e. vulnerabilities and resources) were administered retrospectively. Results: Caregivers who more frequently used the coping strategies ‘seeking distraction’, ‘seeking social support’, and ‘fostering reassuring thoughts’ experienced less emotional reactivity towards stressful daily events. A higher educational level and a higher sense of competence and mastery lowered emotional reactivity towards minor disturbances in daily life. No effects were found for age, gender, and hours of care and contact with the person with dementia. Discussion: Caregiver resources can impact emotional reactivity to daily life stress. Interventions aimed at empowerment of caregiver resources, such as sense of competence, mastery, and coping, could help to reduce stress reactivity in dementia caregivers. [ABSTRACT FROM AUTHOR]

Background: Older patients suffering from a combination of psychiatric disorders and physical illnesses and/or dementia are called Double Care Demanding patients (DCDs). Special wards for DCDs within Dutch nursing homes (NHs) and mental health care institutions (MHCIs) offer a unique opportunity to obtain insight into the characteristics and needs of this challenging population. Methods: This observational cross-sectional study collected data from 163 DCDs admitted to either a NH or a MHCI providing specialized care for DCDs. Similarities and differences between both DCD groups are described. Results: Neuropsychiatric symptoms were highly prevalent in all DCDs but significantly more in MHCI-DCDs. Cognitive disorders were far more present in NH-DCDs, while MHCI-DCDs often suffered from multiple psychiatric disorders. The severity of comorbidities and care dependency were equally high among all DCDs. NH-DCDs expressed more satisfaction in overall quality of life. Conclusions: The institutionalized elderly DCD population is very heterogeneous. Specific care arrangements are necessary because the severity of a patient's physical illness and the level of functional impairment seem to be equally important as the patient's behavioural, psychiatric and social problems. Further research should assess the adequacy of the setting assignment and the professional skills needed to provide adequate care for elderly DCDs. [ABSTRACT FROM AUTHOR]

Background: Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics.Methods: A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T0) and at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The 16-week follow-up assessment (T2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention.Discussion: Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care.Trial Registration: Dutch trial register, NTR6131 . Registered on 20 October 2016. [ABSTRACT FROM AUTHOR]

Background: There is an urgent need for psychosocial interventions that effectively support dementia caregivers in daily life. The Experience Sampling Methodology (ESM) offers the possibility to provide a more dynamic view of caregiver functioning. ESM-derived feedback may help to redirect caregivers' behavior towards situations that elicit positive emotions and to increase their feelings of competence in the caretaking process. This paper presents the design of a study that evaluates the process characteristics and effects of the ESM-based intervention 'Partner in Sight'. Methods/design: A randomized controlled trial with 90 spousal caregivers of people with dementia will be conducted. Participants will be randomly assigned to the experimental (6-week ESM intervention including feedback), pseudo-experimental (6-week ESM intervention without feedback), or control group (care as usual). Assessments will be performed pre- and post-intervention and at 2-, and 6-month follow-up. Main outcomes will be sense of competence, perceived control, momentary positive affect, and psychological complaints (depressive symptoms, perceived stress, anxiety, momentary negative affect). In addition to the effect evaluation, a process and economic evaluation will be conducted to investigate the credibility and generalizability of the intervention, and its cost-effectiveness. Discussion: The potential effects of the ESM intervention may help caregivers to endure their care responsibilities and prevent them from becoming overburdened. This is the first ESM intervention for caregivers of people with dementia. The results of this study, therefore, provide a valuable contribution to the growing knowledge on m-health interventions for dementia caregivers. [ABSTRACT FROM AUTHOR]

Background: The benefits of e-health support for dementia caregivers are becoming increasingly recognized. Reaching early-stage dementia caregivers could prevent high levels of burden and psychological problems in them in the later stages of dementia. An iterative step-wise approach was employed to develop the blended care self-management program "Partner in Balance" for early-stage dementia caregivers. The design of a study evaluating the process characteristics and effects is presented.Methods/design: A mixed-method, single-blind, randomized controlled trial with 80 family caregivers of community-dwelling people with (very) mild dementia will be conducted. Participants will be randomly assigned to either the 8-week blended care self-management program "Partner in Balance" or a waiting-list control group. Data will be collected pre intervention and post intervention and at 3-, 6- and 12-month follow-ups. Semi-structured interviews will be conducted post intervention. A process evaluation will investigate the internal and external validity of the intervention. Primary outcomes will include self-efficacy and symptoms of depression. Secondary outcomes will include goal attainment, mastery, psychological complaints (feelings of anxiety and perceived stress), and quality of life. Possible modifying variables such as caregiver characteristics (quality of the relationship, neurotic personality) and interventional aspects (coach) on the intervention effect will also be evaluated. A cost-consequence analysis will describe the costs and health outcomes.Discussion: We expect to find a significant increase in self-efficacy, goal attainment and quality of life and lower levels of psychological complaints (depression, anxiety and stress) in the intervention group, compared with the control group. If such effects are found, the program could provide accessible care to future generations of early-stage dementia caregivers and increase dementia care efficiency.Trial Registration: Dutch trial register NTR4748 . [ABSTRACT FROM AUTHOR]

Objective: Social support interventions for caregivers of persons with dementia (PwD) are important because informal carers often rely on their social networks for support. This systematic review synthesises findings from research on social support interventions, and examines their methodological quality and effectiveness on caregiver social support and well-being variables.Methods: A systematic literature search utilised five databases. Papers were selected when the primary aim of the intervention was to improve social support. Quality of papers was assessed by the Level of Evidence grade and the criteria list from the Cochrane Back Review Group.Results: 39 papers were identified and classified into 4 social support intervention categories: befriending and peer support, family support and social network interventions, support groups, and remote interventions using the internet or telephone. Content, intensity, uptake, effectiveness and quality of interventions varied widely. In general, the level of evidence was low. Most studies measured effect on well-being variables, while few examined social support outcomes. Multi-component social support interventions were most effective. Evidence suggested, also a caregiver benefit from remote interventions. Generally, results were inconsistent; some papers demonstrated beneficial results, while others demonstrated no improvement on social support and well-being variables. Social support outcomes were more positively evaluated when qualitative outcome measures rather than quantitative measures were used.Conclusions: Although multi-component social support interventions may improve caregiver well-being, there is insufficient evidence to conclude whether a change in social support is the underlying mediating factor. The inclusion, validation and operationalization of caregiver social support measures deserve more attention. [ABSTRACT FROM AUTHOR]

Background. Cognitive interventions for older persons that may diminish the burden of cognitive problems and could delay conversion to dementia are of great importance. The underlying mechanisms of such interventions might be psychological compensation and neuronal plasticity. This review provides an overview of the literature concerning the evidence that cognitive interventions cause brain activation changes, even in damaged neural systems. Method. A systematic search of the literature was conducted in several international databases, Medline, Embase, Cinahl, Cochrane, and Psychinfo. The methodological quality was assessed according to the guidelines of the Dutch Institute for Health Care Improvement (CBO). Results. Nineteen relevant articles were included with varied methodological quality. All studies were conducted in diverse populations from healthy elderly to patients with dementia and show changes in brain activation after intervention. Conclusions. The results thus far show that cognitive interventions cause changes in brain activation patterns.The exact interpretation of these neurobiological changes remains unclear. More study is needed to understand the extent to which cognitive interventions are effective to delay conversion to dementia. Future studies should more explicitly try to relate clinically significant improvement to changes in brain activation. Long-term follow-up data are necessary to evaluate the stability of the effects. [ABSTRACT FROM AUTHOR]

Highlights: [•] An early dementia diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role. [•] Caregivers that are able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems. [•] Multicomponent caregiver interventions in the mild to moderate dementia stages are effective to improve caregiver well-being and delay institutionalization. [•] Offering caregiver interventions in the predementia stage asks for different approaches with different tasks to cope with. [ABSTRACT FROM AUTHOR]

Abstract: 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. [Copyright &y& Elsevier]

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. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: Although frailty is often conceptualized in terms of deficits, the level of frailty can be perceived as a complex interplay between deficits and resources. Objective: We studied whether resources such as educational level, financial situation, and living-alone status moderate the negative effects of deficits on two potentially adverse consequences of frailty: self-perceived health and receiving professional care. Methods: Logistic regression analysis was performed with data from a cross-sectional survey, designed by the public health service in the south of the Netherlands. The questionnaire was completed by a representative sample of people aged 70 and over (n = 5,559). Interaction effects between deficits (multimorbidity, difficulty performing ADLs, psychological distress, loneliness) and resources (educational level, financial situation, living-alone status) were studied in relation to self-perceived health and receiving professional care. Results: We found that in males the effect of difficulty in performing ADLs on self-perceived health was modified by educational level (p < 0.05, indicating that difficulty in performing ADLs is more strongly related to moderate/bad self-perceived health for those with higher education). In females, the effect of psychological distress on self-perceived health was modified by educational level (p < 0.05, indicating that suffering from psychological distress is more strongly related to moderate/bad self-perceived health for those with higher education) and the effect of difficulty in performing ADLs on receiving professional care was modified by living-alone status (p < 0.05, indicating that difficulty in performing ADLs was more strongly related to receiving professional care for those women who lived alone). Conclusions: Resources moderate the impact of personal deficits on self-perceived health and receiving professional care. Some frail people seem to be more vulnerable as they lack resources such as a high level of education. This should be taken into account in deciding when elderly people are at risk of negative outcomes of frailty and is therefore important for health professionals and policy-makers. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Abstract: Objective: To gain caregivers’ insights into the decision-making process in dementia patients with regard to treatment and care. Methods: Four focus group interviews (n =29). Results: The decision-making process consists of three elementary components: (1) identifying an individual''s needs; (2) exploring options; and (3) making a choice. The most important phase is the exploration phase as it is crucial for the acceptance of the disease. Furthermore, the decision is experienced more as an emotional choice than a rational one. It is influenced by personal preferences whereas practical aspects do not seem to play a substantial role. Conclusion: Several aspects make decision-making in dementia different from decision-making in the context of other chronic diseases: (1) the difficulty accepting dementia; (2) the progressive nature of dementia; (3) patient''s reliance on surrogate decision-making; and (4) strong emotions. Due to these aspects, the decision-making process is very time-consuming, especially the crucial exploration phase. Practice implications: A more active role is required of both the caregiver and the health care professional especially in the exploration phase, enabling easier acceptance and adjustment to the disease. Acceptance is an important condition for reducing anxiety and resistance to care that may offer significant benefits in the future. [Copyright &y& Elsevier]

Objective: When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided. Methods: PubMed, Psychinfo, and Cinahl were searched for articles that considered the psychological or psychosocial impact of EOD on informal caregivers and children. The methodological quality of the studies was assessed in order to make better judgments about the value of each article. Results: Seventeen articles were included, of which the overall methodological quality was limited. The results showed that EOD caregivers experienced high levels of burden, stress, and depression. When compared with LOD caregivers, results were inconclusive. Furthermore, the caregivers of EOD patients experienced a variety of psychosocial problems, including relational problems, family conflict, problems with employment, financial difficulties, and problems concerning diagnosis. Conclusions: Whether there is a difference in impact between EOD and LOD on caregivers is still unclear. The studies conducted are methodologically too limited to answer this question. Nevertheless, it is clear that EOD caregivers do seem to experience high levels of psychological suffering and specific problems related to their phase in life. [ABSTRACT FROM AUTHOR]

Background Examination of clinical practice reveals that current treatment options are often not sufficiently utilized by patients suffering from dementia or mild cognitive impairment. Objective This study aimed to investigate to what extent and in what way these patients utilize the available treatment options, as well as to identify factors and reasons that play a role in the non-utilization of these options. Methods Semi-structured interviews by telephone were held with the patients' caregivers. Results Counseling, medication, activities and home care were the options that were most frequently utilized by the 252 patients and caregivers who were included in the study. Group guidance and admissions were the main treatment categories that had not been utilized (although they were proposed). The most important reasons given were refusal by the patient and the fact that help was not necessary yet according to the caregiver. Burden of care and cognition were the most important factors in predicting which of the treatment options were not utilized. Conclusions Most patients and caregivers are not aware of the treatment options available to them. Awareness of these options is necessary to avoid situations in which patients and caregivers find themselves with their backs against the wall and the need for care support has become an acute necessity. Health care professionals should play an important role with regard to this empowerment. Copyright © 2010 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Nursing home residents needing both psychiatric care and nursing home care for either somatic illness or dementia combined with psychiatric disorders or severe behavioural problems are referred to as Double Care Demanding patients, or DCD patients. Integrated models of care seem to be necessary in order to improve the well-being of these residents. Objectives Two research questions were addressed. First, which integrated interventions combining both psychiatric care and nursing home care in DCD nursing home residents are described in the research literature? And second, which outcomes of integrated interventions combining both psychiatric care and nursing home care in DCD nursing home residents are reported in the literature? Method A critical review of studies was done that involved integrated interventions combining both psychiatric care and nursing home care on psychiatric disorders and severe behavioural problems in nursing home patients. A systematic literature search was performed in a number of international databases. Results Eight intervention trials, including four RCTs (2b level of evidence), were identified as relevant studies for the purpose of this review. Seven studies, three of which were RCTs, showed beneficial effects of a comprehensive, integrated multidisciplinary approach combining medical, psychiatric and nursing interventions on severe behavioural problems in DCD nursing home patients. Conclusions Important elements of a successful treatment strategy for DCD nursing home patients include a thorough assessment of psychiatric, medical and environmental causes as well as programmes for teaching behavioural management skills to nurses. DCD nursing home patients were found to benefit from short-term mental hospital admission. This review underlines the need for more rigorously designed studies to assess the effects of a comprehensive, integrated multidisciplinary approach towards DCD nursing home residents. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Behavioural changes are a key factor in distinguishing frontotemporal dementia (FTD) from Alzheimer’s disease (AD), however, little is known about the impact of these changes on caregivers. The aim of this study was to compare caregivers’ distress related to behavioural symptoms of AD and FTD. Methods: 47 spouse caregivers of consecutively referred patients with AD and 27 spouse caregivers of patients with FTD participated in this study. Behavioural disturbances in the patient and caregivers’ emotional reactions were measured with the Neuropsychiatric Inventory. Results: Patients with FTD had significantly higher levels of agitation, apathy, disinhibition and aberrant motor behaviour than did patients with AD. High distress scores were found for disinhibition, depression and apathy in caregivers of FTD patients whereas caregivers of AD patients reported patient apathy, depression and anxiety as being severely distressing. Higher mean distress scores were found for disinhibition in the FTD group. Furthermore, caregivers of FTD patients reported higher levels of general burden, and felt less competent than AD caregivers. Conclusions: Caregivers of FTD patients were overall more distressed by the behaviour of their partners than were the caregivers of AD patients.Findings from this study underscore the importance of differentiating between diagnostic groups and specific behavioural domains when focusing on caregiver reactions to problem behaviour. Copyright © 2006 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: spousal caregivers are usually of the same age as the dementia patient and therefore at risk of age-related cognitive decline. Suboptimal cognitive functioning in caregivers may have profound implications. Methods: fifty-four spousal caregivers of dementia patients from the Memory Clinic of the Academic Hospital Maastricht and the Regional Institute for Community Mental Health Care in the Netherlands were compared with 108 non-caregiving controls. Data were collected on patient and caregiver characteristics and caregiver cognitive functioning. Repeated measures statistical analyses were carried out to investigate the relationship between care giver cognitive functioning at baseline and patient behavioural problems and caregiver competence during 1 year of follow-up. Results: caregivers performed significantly worse on several cognitive domains compared with control subjects. Low performance on a verbal memory task was related to a decrease in caregiver subjective competence and an increase in patient hyperactivity. Conclusion: the results indicate that screening for cognitive impairment of spousal caregivers may be helpful, because suboptimal cognitive functioning may affect the ability to provide adequate care. [ABSTRACT FROM AUTHOR]

Background Although several studies have mentioned associations between neuropsychiatric symptoms, there have been no prospective studies determining interrelations among behavioural sub-syndromes. Objectives To investigate the influence of several clinical variables on the course of neuropsychiatric symptoms, and to determine interrelationships between the behavioural sub-syndromes. Methods One hundred and ninety-nine patients with dementia were assessed every six months for two-years, using the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms. Results Age, sex, and socioeconomic status were not associated with a specific neuropsychiatric symptom. Greater cognitive impairment was related to more severe psychosis, and dementia stage influenced the course of total NPI problems. There were strong interrelations among most behavioural sub-syndromes. The sub-syndrome hyperactivity was of influence on the development of psychosis, but not vice versa. Neither was the sub-syndrome mood/apathy of influence on the course of psychosis. Conclusions While different neuropsychiatric symptoms have their own specific correlates, there is a strong interrelationship between behavioural sub-syndromes. The data have implications for clinicians and the nosology of neuropsychiatric symptoms in dementia. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Although neuropsychiatric symptoms in dementia are common, there have been few large long-term prospective studies assessing the course of a broad range of neuropsychiatric symptoms in dementia. Objectives To investigate the course of neuropsychiatric symptoms in patients with dementia, including data about prevalence, incidence and persistence. Methods One hundred and ninety-nine patients with dementia were assessed every six months for two-years, using the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms. Results Nearly all patients (95%) developed one or more neuropsychiatric symptoms in the two-year study period. Mood disorders were the most common problem. The severity of depression decreased, whereas the severity of apathy and aberrant motor behaviour increased during follow-up. The cumulative incidence was highest for hyperactive behaviours and apathy. Overall behavioral problems were relatively persistent, but most symptoms were intermittent, with apathy and aberrant motor behaviour being persistent for longer consecutive periods. Conclusions Neuropsychiatric symptoms in dementia are a common and major problem. Different symptoms have their own specific course, most of the time show a intermittent course, but behavioural problems overall are chronically present. The data have implications for developing treatment strategies. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives Little is known about the effectiveness of caregiver management strategies on the functioning of the demented patient. However, identification of specific caregiver strategies may provide useful information on the management and manifestation of behavioural problems in dementia. Methods Ninety-nine patients with dementia and their informal caregivers were followed up for one year. Interviews were used to assess differences in caregiver management strategies. Behavioural disturbances in the patient were measured with the Neuropsychiatric Inventory (NPI). Repeated measures analysis were carried out to investigate the relationship between caregiver management strategies and patient behaviour. Results Three caregiver management strategies were identified, based on whether caregivers accepted, or not, the caregiving situation and dementia related problems. Caregivers characterized by non-acceptance were typified as ‘Non-adapters’; caregivers characterized by acceptance were further subdivided into two groups typified as ‘Nurturers’ and ‘Supporters’. Caregiver characteristics such as sex, education and personality were important determinants of management strategies. MANOVA showed that non-adapters reported significantly more hyperactivity symptoms in patients and felt less competent than did supporters. Conclusions Caregiver management strategies would appear to be associated with behavioural problems in dementia, and are important in predicting patient behaviour and caregiver burden. Intervention programmes should aim at teaching caregivers adequate management strategies. Copyright © 2004 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives To investigate the relationship between behavioural problems in patients with dementia and changes in the marital relationship. Methods Fifty-three spouse caregivers of patients with dementia participated in the study. Questionnaires and interviews were used to examine caregiver perception of changes in the quality of their relationship. Behavioural disturbances in the patient were measured with the NeuroPsychiatric Inventory (NPI). Results Caregivers experienced a deterioration of their relationship, yet at the same time most felt closer to their spouse now than in the past. Regression analysis revealed that patient behavioural problems were, independent of patient cognitive status or functional impairment, associated with deterioration in the quality of the relationship between patient and caregiver. Patient apathy rather than depressive mood was associated with this deterioration. Apathy diminished the amount and reciprocity of interactions between partners. Conclusions These results show that passive behaviour rather than excessive behaviour has most impact on the deterioration of the marital relationship. Intervention programmes should target relationship problems when problem behaviour, especially apathy, is present in patients with dementia. Copyright © 2003 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

This study aimed to create a tool to assess eHealth interventions for dementia by adapting an existing implementation readiness (ImpRess) checklist that assessed manualised interventions. In Part 1, online semi-structured interviews with individual stakeholders (N = 9) with expertise in eHealth and dementia were conducted (response rate 83%). The Nonadoption, Abandonment, and challenges to the Scale-Up, Spread, and Sustainability of Health and care technologies (NASSS) framework was applied, both to guide the construction of the interview guide, as well as to use its subdomains as codes in the deductive qualitative thematic analysis. Respondents were industry professionals (n = 3), researchers (n = 3), policy officers (n = 2), and a clinician (n = 1). In Part 2, the items of the original ImpRess checklist were supplemented by items that covered determinants discussed in the interviews, that were not included in the original checklist. The main findings from the interviews included: Participants' preference for a non-dementia-specific, more general approach to the checklist; the importance of searching for shared values with implementers; and the need for more systematic monitoring of implementation. The EmpRess checklist applies an inclusive design approach. The checklist will help evaluate the implementation determinants of eHealth interventions for dementia and provide up-to-date information on what is, and is not, working in eHealth for dementia care. [ABSTRACT FROM AUTHOR]

To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers. A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n = 35; care as usual group: n = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models. We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers. Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers. This trial was registered at ClinicalTrials.gov (NCT02937883). [ABSTRACT FROM AUTHOR]

This study aims to provide more insight into possible barriers and facilitators caregivers of people with Huntington's disease (HD) encounter, and what their needs and wishes are regarding a remote support program. In total, 27 persons participated in four focus group interviews. Eligible participants were caregivers (n = 19) of a person with HD, and healthcare professionals (n = 8) involved in HD care. Qualitative data were analyzed by two researchers who independently performed an inductive content analysis. Four major themes emerged from the data, including (1) a paradox between taking care of yourself and caring for others; (2) challenges HD caregivers face in daily life, including lack of HD awareness, taboo and shame, feelings of loneliness, concerns about heredity and children, and coping with HD symptoms; (3) facilitators in the caregiving process, including a social network, professional support, openness, talking in early phases, and daily structure; (4) needs regarding a support program. These insights will be used to develop a remote support program for HD caregivers, using a blended and self-management approach. Newly developed and tailored support should be aimed at empowering caregivers in their role and help them cope with their situation, taking into account barriers and facilitators. [ABSTRACT FROM AUTHOR]

Cognitive deficits such as memory problems have a major impact on independence in daily life and participation in society in several populations, such as people with dementia, brain injury (i.e. stroke) or a severe mental illness such as schizophrenia. Similarities in the impact on participation and well-being have resulted in the development of comparable psychosocial interventions across populations, aiming to support people to adapt to cognitive deficits or by adapting the environment. These interventions are developed separately, without using the expertise in other fields. We argue that each of the fields and the field of psychosocial care in general would benefit from closer collaboration on development and evaluation of innovative psychosocial interventions. Collaboration has been complicated by the use of different care models and theoretical frameworks, each with their own terminology. The concept of social health - the ability to participate in work or other meaningful activities and to feel healthy despite a condition - translates to the leading care models within the fields of dementia, brain injury and severe mental illness. The concept of social health provides a common language and framework. In this paper, we elaborate on strategies for collaboration using examples of interventions to improve social health. [ABSTRACT FROM AUTHOR]

The aim of the current study was to investigate the health-related quality of life (HRQol) of the family caregiver in MCI, explore possible determinants and study possible differences with mild dementia. This secondary data analysis included 145 persons with MCI and 154 persons with dementia and their family caregivers from two Dutch cohort studies. HRQoL was measured with the VAS of the EuroQol-5D-3L version. Regressions analyses were conducted to examine potential demographic and clinical determinants of the caregiver's HRQoL. The mean EQ5D-VAS in family caregivers of persons with MCI was 81.1 (SD 15.7), and did not significantly differ from family caregivers in mild dementia (81.9 (SD 13.0)). In MCI, patient measurements were not significantly associated with caregiver mean EQ5D-VAS. Concerning caregiver characteristics, being a spouse and a lower educational level were associated with a lower mean EQ5D-VAS (in a multiple linear regression model: unstandardized B −8.075, p = 0.013 and unstandardized B −6.162, p = 0.037 resp.). In mild dementia, the NPI item irritability showed an association with caregiver EQ5D-VAS in bivariate linear regression analyses. Results indicate that especially family caregiver characteristics seem to influence family caregiver HRQoL in MCI. Future research should include other potential determinants such as burden, coping strategies and relationship quality. [ABSTRACT FROM AUTHOR]

Background : Informal caregivers of people with dementia are crucial in dementia care. However, they are insufficiently supported and report caregiver burdens, which urges the need for cost-effective interventions aimed at supporting caregivers. This paper presents the design of a study evaluating the effectiveness, cost-effectiveness, and cost-utility of a blended self-management program for early-stage dementia caregivers. Methods/design: A pragmatic, cluster randomized controlled trial with a shared control group will be conducted. Participants will be informal caregivers of people with early-stage dementia and will be recruited by local care professionals. Randomization will be carried out at the level of the care professional level in a ratio of 35% to 65% (control arm vs. intervention arm). Participants in the control arm will receive care as usual and the intervention arm will receive the blended care self-management program "Partner in Balance" within a usual care setting in the Netherlands. Data will be collected at baseline and at 3-, 6-, 12-, and 24-month follow-ups. The primary outcome for effectiveness (part 1) is care management self-efficacy. For the health-economic evaluation (part 2) total care costs and the quality of life for individuals with dementia (cost-effectiveness) and quality-adjusted life years (cost-utility) will be the base case analysis. Secondary outcomes (parts 1 and 2) will include depression, anxiety, perceived informal caregiving stress, service-use self-efficacy, quality of life, caregivers' gain, and perseverance time. A process evaluation (part 3) will investigate the internal and external validity of the intervention. Discussion: In this trial, we plan to evaluate the effectiveness, cost-effectiveness, and cost-utility of "Partner in Balance" among informal caregivers of people with dementia. We expect to find a significant increase in care management self-efficacy, and the program to be cost-effective, and provide valuable insights to stakeholders of "Partner in Balance." Trial registration: ClinicalTrials.gov, NCT05450146. Registered on 4 November 2022. [ABSTRACT FROM AUTHOR]

Municipalities in Western Europe have increasingly gained a responsibility to support their populations' healthy ageing, but are they ready to do so? In this case study, we are looking into the awareness, attitudes, capacities and mandates of 33 neighboring Belgian, Dutch, and German municipalities to support ageing people, and especially people with dementia, people with late‐life depression and informal caregivers. As part of the Senior Friendly Communities Interreg project, we conducted semi‐structured interviews with municipal policymakers and relevant stakeholders from May 2017 to January 2018. The results show that dementia was a more salient theme in municipality policies than depression; that informal caregivers were considered important but difficult for municipalities to identify; that there was a difference between how embedded these health themes were in policies versus in practice; and lastly, that conducting this assessment turned out to act as an intervention itself. We discuss the similarities and differences between the regions, and the context that needs to be taken into account for municipalities when becoming more age‐friendly. These results do not only provide an insight into the status quo of the participating municipalities with regard to becoming more age‐friendly but can provide a starting point for further development of policies in this area. Key points: The Senior Friendly Communities project stimulates age‐friendly municipality policies for people with dementia, people with late‐life depression, and informal caregivers.This paper describes the results of interviews with officials from municipalities in the Meuse‐Rhine Euroregion who participated in the Senior Friendly Communities project.The results indicate that dementia is a more salient topic in municipality policies than depression.Informal caregivers are regarded as difficult to identify for municipalities.The support of healthy ageing differs between policies and practice.Conducting assessments of municipal health policies acted as an intervention itself. [ABSTRACT FROM AUTHOR]

Background: Promoting adaptation, improving well-being and maintaining an optimal quality of life (QOL) is an important aspect in dementia care. The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer's disease (AD) and frontotemporal dementia (FTD). Methods: In total 135 persons with AD and 58 persons with FTD were included from two prospective cohort studies. QOL was assessed with the proxy reported quality of life in Alzheimer's disease questionnaire (QoL-AD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Differences between QOL domains in people with AD and FTD were calculated using Mann-Whitney U tests. Results: Lower QOL was associated with more depressive symptoms, lower disease awareness, and a higher amount of needs, both met and unmet. People with AD scored lower on the memory and higher on the friends' subscale. No differences were found for the other items. Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL. [ABSTRACT FROM AUTHOR]

Feedback of neuropsychological test results to patients and family members include psychoeducation and implications for daily life. This scoping review aimed to provide an overview of the literature on neuropsychological feedback and to offer clinical recommendations. In accordance with formal scoping review methodology, PubMed, PsycInfo, Web of Science, CINAHL, and Embase databases were searched. Studies were included if they reported on neuropsychological feedback, if full papers were available, and if they included human participants. All languages were included, and no limit was placed on the year of publication. Of the 2,173 records screened, 34 publications met the inclusion criteria. Five additional publications were included after cross-referencing. An update of the search led to the inclusion of two additional papers. Of these 41 publications, 26 were research papers. Neuropsychological feedback is provided for a wide spectrum of diagnoses and usually given in-person and has been related to optimal a positive effect on patient outcomes (e.g. increase the quality of life). Most papers reported on satisfaction and found that satisfaction with an NPA increased when useful feedback was provided. However, information retention was found to be low, but communication aids, such as written information, were found to be helpful in improving retention. The current review demonstrated the benefits of neuropsychological feedback and that this should be part of standard clinical procedures when conducting a neuropsychological assessment. Further research on the benefits of neuropsychological feedback and how to improve information provision would enrich the neuropsychological literature. [ABSTRACT FROM AUTHOR]

Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary analysis tests the assumption by investigating momentary data on activities, affect, and stress and explores the relevance of personalized feedback compared to self-monitoring only. Methods: The intervention was based on the experience sampling method (ESM), meaning that carers self-monitored own affect and behaviours 10 times/day over 6 weeks. The experimental group received personalized feedback on behaviours that elicit PA, while the pseudo-experimental group performed self-monitoring only. A control group was also included. ESM-data of 72 carers was analysed using multilevel mixed-effects models. Results: The experimental group reported significant increases in passive relaxation activities over the 6 weeks (B = 0.28, SE = 0.12, Z = 2.43, p <.05). Passive relaxation in this group was negatively associated with negative affect (r = –0.50, p =.01) and positively associated with activity-related stress (r = 0.52, p =.007) from baseline to post-intervention. Other activities in this or the other groups did not change significantly. Conclusion: Carer's daily behaviours were only affected when self-monitoring was combined with personalized feedback. Changing one's daily behaviour while caring for a person with dementia is challenging and aligned with mixed emotions. Acknowledging simultaneously positive and negative emotions, and feelings of stress is suggested to embrace the complexity of carer's life and provide sustainable support. [ABSTRACT FROM AUTHOR]

The aim of this study was to gain insight into the experiences of patients and their family members regarding a neuropsychological assessment (NPA) and the diagnostic disclosure given by the medical specialist (psychiatrist, geriatrician, or their residents) at the memory clinic (MC). Patients with and without a cognitive impairment and their family members were recruited from three Dutch MCs. Four focus groups with 14 patients and 13 family members were analyzed using both inductive and deductive content analysis. Three themes were identified: uncertainty, early diagnostic paradox, and knowledge utilization. High levels of uncertainty were experienced throughout the NPA and diagnostic disclosure. The early diagnostic paradox refers to the coexistence of negative emotions, feeling distressed due to undergoing an NPA that made them aware of their cognitive complaints, and the experience of relief due to insight given by the outcome of the NPA and medical diagnosis. Knowledge utilization refers to a low retention of medical information. Clinicians can reduce uncertainty by using clear communication, limiting interruptions during an NPA, and paying attention to contextual factors. Low information retention could possibly be improved by involving a family member and using visual aids or written information during the diagnostic disclosure. Finally, participants also appreciated being provided with neuropsychological feedback on the strengths and weaknesses of their cognitive profiles and with guidance on how to manage this diagnosis in their daily lives. [ABSTRACT FROM AUTHOR]

Background: Neuropsychological feedback is an important part of the neuropsychological assessment process. However, patients have difficulties remembering this information.Objective: The aim of this study was to develop a web-based visual tool to improve the understanding of neuropsychological results, information retention, and psychologist-patient communication.Methods: The visual tool was developed and optimized using an iterative three-phase stepwise approach to determine its usability, technology acceptance, and feasibility in a memory clinic population. Feedback from different user perspectives (patients, family members, and psychologists) was obtained in each phase using a multimethod approach (e.g. a multidisciplinary brainstorm session, think-aloud sessions, focus groups). The prototype was subsequently tested in a pilot study.Results: The first phases offered insights that led to optimization of the prototype. On a scale ranging from 0 to 100, psychologists evaluated the usability as high [88.1±7.6,70-87]. During the pilot study, both patients and significant others gave positive feedback, but information retention in patients remained low. All participants thought the benefits of the visual tool included seeing cognitive strengths and weaknesses with a translation to daily life all at one glance and receiving feedback on paper to take home. Important barriers were mentioned by psychologists, such as a limited set of tests included and no integration with hospital systems.Conclusion: Overall, patients, family members, and psychologists reported that a visual display of the cognitive profile with insights into daily life had added value to clinical practice. Feedback from the pilot study was adopted in the tool for future implementation purposes. [ABSTRACT FROM AUTHOR]

The aim of this study was to describe the course of psychotropic drug use in people with young-onset dementia and to explore possible associations with age, sex, dementia severity, dementia subtype and neuropsychiatric symptoms. Psychotropic drug use was studied in 198 community-dwelling persons participating in the Needs in Young-onset Dementia study. Data about psychotropic drug use were retrieved at baseline, as well as at 6, 12, 18 and 24 months and was classified into five groups (antiepileptics, antipsychotics, anxiolytics, hypnotics/sedatives and antidepressants) and quantified as 'present' or 'absent'. Generalized Estimating Equation modeling and chi-square tests were used to study associations between the determinants and psychotropic drug use. There was a statistically significant increase in the prevalence of psychotropic drug use from 52.3% to 62.6% during the course of the study. Almost three-quarters (72.4%) of the participants were treated with any psychotropic drug during the study, and more than one-third (37.4%) received psychotropic drugs continuously. Antipsychotics were used continuously in more than 10% of the participants and antidepressants in more than 25%. Increasing age was positively associated (p =.018) with psychotropic drug use at baseline, while apathy symptoms were negatively associated (p =.018). Despite the recommendations of various guidelines, the prolonged use of psychotropic drugs in community-dwelling people with young-onset dementia is high. Therefore, more attention is needed to timely evaluate psychotropic drug use and the introduction of self-management programs for caregivers should be encouraged to support caregivers in dealing with the neuropsychiatric symptoms caused by the dementia. [ABSTRACT FROM AUTHOR]

Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities. [ABSTRACT FROM AUTHOR]

Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners. Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis. Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family. Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the cost-consequences of an intervention for the management of neuropsychiatric symptoms in nursing home residents with young-onset dementia.Methods: A stepped wedge design was used. The intervention consisted of an educational program and a multidisciplinary care program and was implemented in 13 nursing homes from September 2015 to March 2017. Costs' outcomes included the time investment of the elderly care physician and health care psychologists regarding the management of neuropsychiatric symptoms, residents' psychotropic drug use, nursing staff absenteeism, and costs of the educational program. Composite cost measure contained the sum of costs of staff absenteeism, costs on psychotropic drugs, and costs of the educational program. Costs of time investment were investigated by comparing means. Costs of psychotropic drug use were analyzed with mixed models at resident level and as part of the composite cost measure on unit level. Staff absenteeism was also analyzed at unit level.Results: Compared with care as usual, the mean costs of time invested decreased with €36.79 for the elderly care physician but increased with €46.05 for the health care psychologist in the intervention condition. Mixed model analysis showed no effect of the intervention compared with care as usual on the costs of psychotropic drug use, staff absenteeism, and the composite cost measure. The costs of the educational program were on average €174.13 per resident.Conclusion: The intervention did not result in increased costs compared with care as usual. Other aspects, such as the lack of a structured working method, should be taken into account when considering implementation of the intervention. [ABSTRACT FROM AUTHOR]

Introduction: People with depression, anxiety, or psychosis often complain of confusion, problems concentrating or difficulties cognitively appraising contextual cues. The same applies to people with neurodegenerative diseases or brain damage such as dementia or stroke. Assessments of those cognitive difficulties often occurs in cross-sectional and controlled clinical settings. Information on daily moment-to-moment cognitive fluctuations and its relation to affect and context is lacking. The development and evaluation of a digital cognition task is presented. It enables the fine-grained mapping of cognition and its relation to mood, intrapersonal factors and context. Methods: The momentary Digit Symbol Substitution Task is a modified digital version of the original paper-and-pencil task, with a duration of 30 seconds and implemented in an experience sampling protocol (8 semi-random assessments a day on 6 consecutive days). It was tested in the healthy population (N = 40). Descriptive statistics and multilevel regression analyses were used to determine initial feasibility and assess cognitive patterns in everyday life. Cognition outcome measures were the number of trials within the 30-second sessions and the percentage of correct trials. Results: Subjects reported the task to be easy, pleasant and do-able. On average, participants completed 11 trials with 97% accuracy per 30-second session. Cognitive variation was related to mood, with an interaction between positive and negative affect for accuracy (% correct) (p =.001) and an association between positive affect and speed (number of trials) (p =.01). Specifically, cheerful, irritated and anxious seem to covary with cognition. Distraction and location are relevant contextual factors. The number of trials showed a learning effect (p <.001) and was sensitive to age (p <.001). Conclusion: Implementing a digital cognition task within an experience-sampling paradigm shows promise. Fine-tuning in further research and in clinical samples is needed. Gaining insight into cognitive functioning could help patients navigate and adjust the demands of daily life. [ABSTRACT FROM AUTHOR]

Neuropsychiatric symptoms are common in nursing home residents with young-onset dementia and burdensome for nursing staff. It is known that neuropsychiatric symptoms are associated with burn-out complaints and low job satisfaction. An intervention aimed at decreasing neuropsychiatric symptoms in nursing home residents with young-onset dementia might also result in less burnout complaints and job demands and improve job satisfaction in nursing staff. The aim was to evaluate the effect of the intervention on nursing staff burnout, job satisfaction and job demands. Cluster randomised controlled trial using a stepped wedge design with a total duration of 18 months, with four assessments. Thirteen young-onset dementia special care units across the Netherlands were, by means of random allocation software, assigned to three groups crossing over at different time points. All nursing staff, in total 391, were invited to participate. 305 nursing staff participated during the course of the study of whom 71 participated in all assessments. An educational program followed by a structured multidisciplinary care program aimed at the management of neuropsychiatric symptoms. The care program consists of evaluation of psychotropic drug prescription followed by detection, analysis, treatment and evaluation of treatment of neuropsychiatric symptoms. Emotional exhaustion, depersonalisation and personal accomplishment were assessed with the Utrecht Burnout Scale. Job satisfaction and job demands were assessed with subscales of the Leiden Quality of Work Questionnaire. The baseline burnout risk on emotional exhaustion and personal accomplishment was average, and low on depersonalisation. The mean scores for job satisfaction were above average and for job demands average. Linear mixed models showed that the intervention had no effect on emotional exhaustion (estimated effect −0.04, 95% confidence interval −1.25 to 1.16), depersonalisation (estimated effect 0.24, 95% confidence interval −0.26 to 0.74), personal accomplishment (estimated effect −0.82, 95% confidence interval −1.86 to 0.22) job satisfaction (estimated effect −0.40, 95% confidence interval −0.98 to 0.17) and job demands (estimated effect −0.04, 95% confidence interval −0.57 to 0.49). A significant difference was found between registered nurses and other nursing staff on emotional exhaustion and job satisfaction. Compared to other staff members, registered nurses' emotional exhaustion scores slightly increased while job satisfaction slightly decreased when using the intervention. The intervention was not effective on three dimensions of burnout, job satisfaction and job demands. Staff scored positive on the outcomes of interest before implementation of the intervention, leaving little opportunity for improvement. [ABSTRACT FROM AUTHOR]

Objectives: Memory clinics (MCs) have been established to improve diagnosis and treatment of cognitive disorders, including dementia. The aim of this study was to determine the characteristics and working methods of MCs in the Netherlands in 2016. More insight into different working methods can be used to improve the quality of care in Dutch MCs. Additionally, the findings will be compared with earlier results to investigate the development of MCs since 1998.Methods: A survey was sent in 1998, 2004, 2009, and 2017 to all operational Dutch MCs with questions about organization, collaboration, patients, and diagnostic procedures.Results: From 1998 to 2016, the number of MCs increased substantially from 12 to 91. The capacity increased from 1560 patients to 24,388. In 1998, most patients received a dementia diagnosis (85%), while in 2016, half of the patients were diagnosed with milder cognitive problems. MCs are more often part of regional care chains and are better embedded within regional care organizations. Diagnostic tools, such as blood tests (97%), neuropsychological assessment (NPA) (95%), and neuroimaging (92%), were used in nearly all MCs. The number of patients in whom these tools were used differed greatly between MCs (NPA: 5%-100%, neuroimaging: 10%-100%, and CSF: 0.5%-80%). There was an increase in the use of NPA, while the use of neuroimaging, CSF, and EEG/ECG decreased by 8% to 15% since 2009.Conclusions: Since 1998, MCs have developed substantially and outgrown the primarily research-based university settings. They are now accepted as regular care facilities for people with cognitive problems. [ABSTRACT FROM AUTHOR]

Background: It is uncertain whether self- and proxy-reported cognitive decline in older adults reflect an actual objective cognitive dysfunction in the clinical sense, and if these are predictive for developing dementia.Objective: The aim of the present study is to investigate the cross-sectional and longitudinal relation between subjective cognitive decline and objective cognitive performance, depressive symptoms, and to determine the predictive value for development of dementia.Methods: We included 405 patients without dementia at first visit from the Maastricht memory clinic participating in a longitudinal cohort study. Subjective cognitive decline was measured using a self- and proxy-report questionnaire. All patients underwent a standardized neuropsychological assessment. Follow-up assessments were performed yearly for three consecutive years, and once after five years.Results: Subjective cognitive decline was associated with lower cognitive performance and more depressive symptoms. When comparing self- (n = 342, 84%) and proxy-reported decline (n = 110, 27%), it was shown that proxy reports were associated with a more widespread pattern of lower cognitive performance. In participants without cognitive impairment proxy-reported decline was not associated with depressive symptoms. In contrast, self-reported decline was associated with a stable course of depressive symptoms at follow-up. Proxy-reported cognitive decline (HR = 1.76, 95% CI = 1.12- 2.78), and mutual complaints (HR = 1.73, CI:1.09- 2.76) predicted incident dementia while self-reported decline did not reach statistical significance (HR = 1.26, 95% CI = 0.65- 2.43).Conclusion: Proxy-reported cognitive decline was consistently associated with lower cognitive performance and conversion to dementia over 5 years. Self-reported cognitive decline in patients without cognitive impairment might indicate underlying depressive symptoms and thus deserve clinical attention as well. [ABSTRACT FROM AUTHOR]

Objective: The aims of the current study are (1) to explore the differences in neuropsychiatric symptoms (NPS) between young-onset dementia (YOD) and late-onset dementia (LOD), and (2) to investigate whether the possible differences can be attributed to differences in dementia subtype, gender, psychotropic drug use (PDU), or dementia severity. Method: Three hundred and eighty-six nursing home (NH) residents with YOD and 350 with LOD were included. Multilevel modeling was used to compare NPS between the groups. Furthermore, dementia subtype, gender, PDU, and dementia severity were added to the crude multilevel models to investigate whether the possible differences in NPS could be attributed to these characteristics. Results: Higher levels of apathy were found in NH residents with YOD. After the characteristics were added to the models, also lower levels of verbally agitated behaviors were found in YOD. Conclusion: We recommend that special attention be paid to interventions targeting apathy in YOD. Although no differences in other NPS were found, the PDU rates were higher in YOD, suggesting that the threshold for the use of PDU in the management of NPS is lower. This underscores the need for appropriate attention to non-pharmacological interventions for the management of NPS in YOD. [ABSTRACT FROM AUTHOR]

Objectives A process evaluation was performed for an intervention aimed at improvement of the management of neuropsychiatric symptoms in young-onset dementia. Data about sample quality and intervention quality was evaluated to better understand internal and external validity. In addition, data about the implementation strategy and factors affecting implementation were evaluated to improve further implementation of the intervention. Design A model proposed by Leontjevas and colleagues consisting of first-order (validity) and second-order (implementation) data was used. Setting and Participants Care units delivering specialized treatment and support for residents with young-onset dementia. Measures A description of the recruitment, randomization procedure, and intervention reach was carried out to determine sample quality. To determine intervention quality, data on satisfaction, relevance, feasibility, and fidelity were collected through a questionnaire and reports logged on the server of the web-based intervention. A description of the implementation strategy was provided. Barriers and facilitators for implementation were collected by a questionnaire and analyzed by deductive content analysis. Results Care units varied in size and were recruited from different geographical regions in the Netherlands. The informed consent rate of the residents was 87.7%. The majority of the nursing home staff were satisfied with the intervention. However, parts of the intervention were perceived as less relevant for their own organization. The feasibility of the intervention was considered low. The fidelity differed between care units. The implementation strategy did not overcome all barriers. Factors affecting implementation covered 3 themes: organizational aspects, culture of the organization, and aspects of the intervention. Conclusions In general, our results showed sufficient internal and external validity, warranting further effect analyses. Adaptations to specific steps of the care program should be considered to increase feasibility and sustainability. In addition, integration of the care program into the electronic health records is expected to further improve implementation. [ABSTRACT FROM AUTHOR]

The authors discuss several studies related to capacity building of early stage psychosocial dementia researchers in Europe. Topics covered include the needs and quality of life of people with dementia and their caregivers, the use and implementation of Dementia Care Mapping with the RE-AIM Framework to support care experts working in 12 group homes, and the effectiveness and acceptability of training interventions with a communication component aimed at target groups.

Objective The aims of this study were (1) to investigate the relationship between different neuropsychiatric symptoms (NPS) and the level of distress experienced by nurses caring for residents with young-onset dementia (YOD) and (2) to compare these findings with those for nurses caring for residents with late-onset dementia (LOD). Design/Setting This is a retrospective study conducted in Dutch long-term care facilities. Data were used from the Behavior and Evolution of Young-ONset Dementia studies (BEYOND) Parts I and II and the WAAL Behavior in Dementia-II (Waalbed-II) study. Participants A total of 382 nursing home residents with YOD and 261 nursing home residents with LOD were included. Measurements The Neuropsychiatric Inventory, nursing home version, was used to assess nursing staff distress and the frequency (F) and severity (S) of NPS. Multilevel logistic regression analysis was used to investigate the relationships between nursing staff distress related to NPS and YOD and LOD care units, the F × S score per symptom, gender, dementia subtype, and dementia severity. Results Nurses working in YOD care units rated sleep and nighttime behavior disorders, delusions, and agitation/aggression most often as highly distressing and euphoria most often as not distressing. Multivariate analyses indicated that the frequency and severity of NPS were significantly associated with staff distress in all symptoms, except for apathy. Comparison of the 2 groups of nurses demonstrated that the odds for distress related to sleep and nighttime behavior disorders were higher for nurses in YOD care units than for nurses in LOD units. For both the YOD and LOD nurses, irritability in male residents had higher impact than similar behavior in female residents. Conclusion This study provides important insight into distress related to individual NPS and the interaction with residents' characteristics. All NPS result in distress. The frequency and severity of the behavior is an important predictor. Sleep and nighttime behavior disorders are more likely to result in distress in YOD nurses than in LOD nurses. The amount of distress related to NPS emphasizes the urgent need for adequate management of NPS and the support of professional caregivers. [ABSTRACT FROM AUTHOR]