A comparison of self and proxy quality of life ratings for people with dementia and their carers: a European prospective cohort study.

Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development.Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up.Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor.Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.

[Older people with complex, combined care needs: the need for tailored collaborative care]. / Ouderen met complexe, gecombineerde problemen: noodzaak tot samenwerken op maat.

Older patients with combined psychiatric, physical and cognitive health problems - patients who need double care - benefit from integrated medical and psychiatric care. The characteristics of these patients, as well as the problems that may exist in offering them adequate integrated care, are illustrated on the basis of a case description. Improvement of existing regional arrangements, premised on a collaborative care model, and involving hospital care, mental health services, nursing home care and community care services, is recommended. In settings that offer 24 hour long-term residential care and treatment, the expertise of mental health services and nursing homes must be structurally combined.

An Experience Sampling Method Intervention for Dementia Caregivers: Results of a Randomized Controlled Trial.

OBJECTIVE: Ecological momentary interventions integrated with real-life assessments using the experience sampling method (ESM) could be promising to effectively support dementia caregivers in daily life. This study reports on the effectiveness of the ESM-based intervention "Partner in Sight." DESIGN, SETTING, PARTICIPANTS: A randomized controlled trial with 76 dementia caregivers was performed. Participants were randomly assigned to the intervention group ("Partner in Sight": ESM self-monitoring and personalized feedback), the pseudo-intervention group (ESM self-monitoring without feedback), or the control group (usual care). MEASUREMENTS: Effects were evaluated pre- and postintervention and at 2-month follow-up. Primary outcomes were retrospective measures of caregiver sense of competence and mastery. Secondary outcomes were retrospective measures of depression, anxiety, and perceived stress. Complementary ESM measures of positive and negative affect were collected pre- and postintervention. RESULTS: Both the experimental and pseudo-experimental groups showed an increase in retrospective sense of competence and a decrease in perceived stress at 2-month follow-up. At postintervention, the experimental group showed a decrease in momentary negative affect compared with the pseudo-experimental and control groups. No effects were found for retrospective mastery, depression, anxiety, and momentary positive affect. CONCLUSIONS: ESM interventions could be an important asset for increasing caregiver resources and could help caregivers to better adapt and manage difficult situations and to protect against negative emotions.

Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia.

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness. METHODS: The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted. CONCLUSIONS: The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formal care.

BACKGROUND: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time. OBJECTIVES: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project. MATERIALS AND METHODS: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario. RESULTS: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system. CONCLUSION: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

Dealing with daily challenges in dementia (deal-id study): an experience sampling study to assess caregiver functioning in the flow of daily life.

OBJECTIVE: Accurate assessment of caregiver functioning is of great importance to gain better insight into daily caregiver functioning and to prevent high levels of burden. The experience sampling methodology (ESM) is an innovative approach to assess subjective experiences and behavior within daily life. In this study, the feasibility of the ESM in spousal caregivers of people with dementia was examined, and the usability of ESM data for clinical and scientific practice was demonstrated. METHODS: Thirty-one caregivers collected ESM data for six consecutive days using an electronic ESM device that generated ten random alerts per day. After each alert, short reports of the caregiver's current mood state and context were collected. Feasibility was assessed by examining compliance and subjective experiences with the ESM. Usability was described using group and individual ESM data. RESULTS: Participants on average completed 78.8% of the reports. One participant completed less than 33% of the reports and was excluded from data analyses. Participants considered the ESM device to be a user-friendly device in which they could accurately describe their feelings and experiences. The ESM was not experienced as too burdensome. Zooming in on the ESM data, personalized patterns of mood and contextual factors were revealed. CONCLUSIONS: The ESM is a feasible method to assess caregiver functioning. In addition to standard retrospective measurements, it offers new opportunities to gain more insight into the daily lives of people with dementia and their caregivers. It also provides new possibilities to tailor caregiver support interventions to the specific needs of the caregiver. Copyright © 2016 John Wiley & Sons, Ltd.

A systematic review of Internet-based supportive interventions for caregivers of patients with dementia.

OBJECTIVE: Because of the expected increase in the number of dementia patients, the unlikelihood of a cure in the near future, and the rising cost of care, there is an increasing need for effective caregiver interventions. Internet interventions hold considerable promise for meeting the educational and support needs of informal dementia caregivers at reduced costs. The current study aims to provide an overview of the evidence for the effectiveness, feasibility, and quality of Internet interventions for informal caregivers of people with dementia. METHODS: A systematic literature search of five scientific databases was performed, covering literature published up to 10 January 2013. Twelve studies were identified. The quality of the included studies was assessed according to the Cochrane level of evidence and the criteria list of the Cochrane Back Review Group. RESULTS: The intervention types, dosage, and duration differed widely, as did the methodological quality of the included studies. The overall level of evidence was low. However, the results demonstrate that Internet interventions for informal dementia caregivers can improve various aspects of caregiver well-being, for example, confidence, depression, and self-efficacy, provided they comprise multiple components and are tailored to the individual. Furthermore, caregivers could benefit from interaction with a coach and other caregivers. CONCLUSIONS: Internet interventions for informal dementia caregivers may improve caregiver well-being. However, the available supporting evidence lacks methodological quality. More randomized controlled studies assessing interventions performed according to protocol are needed to give stronger statements about the effects of supportive Internet interventions and their most promising elements.

Time to diagnosis in young-onset dementia as compared with late-onset dementia.

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.

The role of cognitive and social leisure activities in dementia risk: assessing longitudinal associations of modifiable and non-modifiable risk factors.

AIMS: With the projected surge in global dementia cases and no curative treatment available, research is increasingly focusing on lifestyle factors as preventive measures. Social and cognitive leisure activities are promising targets, but it is unclear which types of activities are more beneficial. This study investigated the individual and joint contribution of cognitive and social leisure activities to dementia risk and whether they modify the risks associated with other potentially modifiable and non-modifiable risk factors. METHODS: We used data from the English Longitudinal Study of Ageing (ELSA) from 7917 participants, followed up from 2008/2009 (Wave 4) until 2018/2019 (Wave 9) for incident dementia. Self-reported baseline cognitive activities (e.g. 'reading the newspaper'), the number of social memberships (e.g. being a member of a social club) and social participation (e.g. 'going to the cinema') were clustered into high and low based on a median split. Subsequently, their individual and joint contribution to dementia risk, as well as their interaction with other dementia risk factors, were assessed with Cox regression models, adjusting for age, sex, level of education, wealth and a composite score of 11 lifestyle-related dementia risk factors. RESULTS: After a median follow-up period of 9.8 years, the dementia incidence rate was 54.5 cases per 10.000 person-years (95% CI 49.0-60.8). Adjusting for demographic and other lifestyle-related risk factors, higher engagement in cognitive activities (HR = 0.58; 95% CI 0.40-0.84), a greater number of social memberships (HR = 0.65; 95% CI 0.51-0.84) and more social participation (HR = 0.71; 95% CI 0.54-0.95) were associated with lower dementia risk. In a joint model, only engagement in cognitive activities (HR = 0.60; 95% CI 0.40-0.91) and social memberships (HR = 0.75; 95% CI 0.56-0.99) independently explained dementia risk. We did not find any interaction with other modifiable and non-modifiable risk factors. CONCLUSIONS: Engagement in cognitive and social leisure activities may be beneficial for overall dementia risk, independent of each other and other risk factors. Both types of activities may be potential targets for dementia prevention measures and health advice initiatives.

Psychosocial care in dementia in European higher education: Evidence from the SiDECar ("Skills in DEmentia Care") project.

In dementia care, psychosocial interventions can increase people's quality of life with dementia and their caregivers. Despite their effectiveness, their translation into practice lacks the desirable systematicity. Systematic educational programs on psychosocial interventions in dementia will improve this translation, as it prepares professionals to face the complexity of dementia care. This study aimed to systematically map out the extent to which higher education programs in Europe include teaching activities about psychosocial care of dementia. We collected quantitative and qualitative data about 303 higher education teaching activities on psychosocial care in dementia across Europe. The analysis revealed that the number of teaching activities focusing on psychosocial care in dementia was relative. Although the results reflected UNESCO indications, the teaching activities on psychosocial care in dementia appeared less systematized than optimal. As world health agencies recommend, international higher education systems should consider more psychosocial care topics because they can prepare professionals to respond timely and effectively to dementia patients and caregivers' needs.

Digital assessment of working memory and processing speed in everyday life: Feasibility, validation, and lessons-learned.

OBJECTIVES: Cognitive functioning is often impaired in mental and neurological conditions and might fluctuate throughout the day. An existing experience-sampling tool was upgraded to assess individual's cognition in everyday life. The objectives were to test the feasibility and validity of two momentary cognition tasks. METHODS: The momentary Visuospatial Working Memory Task (mVSWMT) and momentary Digit Symbol Substitution Task (mDSST) were add-ons to an experience sampling method (ESM) smartphone app. Healthy adults (n = 49) between 19 and 73 years of age performed the tasks within an ESM questionnaire 8 times a day, over 6 consecutive days. Feasibility was determined through completion rate and participant experience. Validity was assessed through contextualization of cognitive performance within intrapersonal and situational factors in everyday life. FINDINGS: Participants experienced the tasks as pleasant, felt motivated, and the completion rate was high (71%). Social context, age, and distraction influenced cognitive performance in everyday life. The mVSWMT was too difficult as only 37% of recalls were correct and thus requires adjustments (i.e. fixed time between encoding and recall; more trials per moment). The mDSST speed outcome seems the most sensitive outcome measure to capture between- and within-person variance. CONCLUSIONS: Short momentary cognition tasks for repeated assessment are feasible and hold promise, but more research is needed to improve validity and applicability in different samples. Recommendations for teams engaging in the field include matching task design with traditional neuropsychological tests and involving a multidisciplinary team as well as users. Special attention for individual needs can improve motivation and prevent frustration. Finally, tests should be attractive and competitive to stimulate engagement, but still reflect actual cognitive functioning.

Well-being of nursing staff on specialized units for older patients with combined care needs.

WHAT IS ALREADY KNOWN ABOUT THE SUBJECT: Working in long-term care is seen as a stressful, physically and mentally demanding occupation, and thus, nursing staff are at risk for work and stress-related diseases. In older patients, psychiatric illnesses often occur in combination with physical illnesses, requiring nursing care that is specific to these combined care needs. The impact of caring for these patients on the mental well-being of nurses is unknown. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: Nursing staff working on specialized units for patients with combined care needs experience high levels of self-efficacy in combination with strong feelings of self-rated competence. Although levels of burnout are relatively low, mental healthcare nursing staff is more at risk for burnout when working in specialized settings for patients with combined care needs than nursing home staff working in specialized settings for these patients. Nursing staff characteristics, such as years of working experience and age, seem more important in relation to staff well-being than patient characteristics in specialized settings for combined care needs. WHAT ARE THE IMPLICATIONS FOR PRACTICE: Staff well-being might benefit from specializing care, so that patients with similar care needs are placed together and care is focused. The presence of specialized care units for older patients with combined care needs can allow for both targeted and focused allocation of nursing staff to these units and provision of specific training. ABSTRACT: Introduction In older patients, psychiatric illnesses frequently exist in tandem with physical illnesses, requiring nursing care that is specific to these combined care needs. The impact of caring for these patients on the mental well-being of nursing staff is unknown. AIM: To investigate whether care characteristics of patients with combined care needs are related to the mental well-being of nursing staff. METHOD: Well-being of nursing staff was studied within a larger exploratory observational cross-sectional study that examined the differences and similarities of specialized combined care units in Dutch mental healthcare and nursing home settings. RESULTS: Nursing staff across settings, with more than 5 years of work experience, felt competent in caring for patients with combined care needs. No significant effects of care characteristics of patients with combined care needs on the work-related well-being of nursing staff were shown. Both mental health nursing staff and older employees, however, were found to be more at risk for burnout. IMPLICATIONS/CONCLUSION: Staff well-being might benefit from placing patients with combined care needs together, so care is focused. The presence of specialized care units can allow for both targeted and focused allocation of nursing staff to these units and provision of specific training.

[Informal care in dementia and the power of social health]. / Mantelzorg bij dementie en de kracht van sociale gezondheid.

- In this article, we describe the current state of affairs with respect to informal care for people with dementia. We focus on the impact of informal care on the caregiver, caregiving strategies and effective ways to support informal caregivers, including e-health and technological support.- Informal care for people with dementia is intense and has consequences, both positive and negative: 78% of informal caregivers has good feelings about the care they give, but 15% feels heavily burdened.- A stimulating and supportive approach creates a positive and safe environment. Person-centred interventions providing several types of support are most effective for people with dementia and their informal caregivers.- E-health and technological interventions have favourable effects on trust, concern and depressive symptoms of informal caregivers.- New interventions should focus more on social health: interactions between people with dementia and their informal caregivers and encouragement of both to use their abilities.

Hebben verzorgende familieleden invloed op probleemgedrag bij dementie?

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.In the MAAstricht Study of BEhaviour in Dementia (MAASBED) 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 was carried out to investigate the relationship between caregiver management strategies and patient behaviour.Results showed that 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 'Nonadapters'; 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. Furthermore, non-adapters reported significantly more hyperactivity symptoms in patients and felt less competent than did supporters. Supporters felt most competent and reported the least hyperactivity symptoms in the patient.In conclusion, caregiver management strategies appear to be associated with behavioural problems in dementia and feelings of caregiver competence. Intervention programmes, aimed at teaching caregivers adequate management strategies, may reduce problem behaviours in the patient en caregiver burden.

A European consensus on outcome measures for psychosocial intervention research in dementia care.

Psychosocial intervention makes a vital contribution to dementia care. However, the lack of consensus about which outcome measures to use to evaluate effectiveness prevents meaningful comparisons between different studies and interventions. This study used an iterative collaborative, evidence-based approach to identify the best of currently available outcome measures for European psychosocial intervention research. This included consensus workshops, a web-based pan-European consultation and a systematic literature review and a rigorous evaluation against agreed criteria looking at utility across Europe, feasibility and psychometric properties. For people with dementia the measures covered the domains of quality of life, mood, global function, behaviour and daily living skills. Family carer domains included mood and burden, which incorporated coping with behaviour and quality of life. The only specific staff domain identified was morale, but this included satisfaction and coping with behaviour. In conclusion twenty-two measures across nine domains were recommended in order to improve the comparability of intervention studies in Europe. Areas were identified where improved outcome measures for psychosocial intervention research studies are required.

Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer's disease.

Frontotemporal dementia (FTD) is the second most prevalent dementia after Alzheimer's disease (AD). We compared 29 FTD and 90 AD caregivers with respect to burden, health-related quality of life (HQoL) and coping. FTD caregivers were more burdened than AD caregivers, and caregivers of patients who were demented for shorter duration had lower HQoL. We furthermore compared the 29 FTD caregivers with 34 caregivers of institutionalized FTD patients to understand their specific caregiver issues. Caregivers of FTD patients institutionalized after shorter dementia duration were most burdened and affected in their HQoL. Overall, passive coping strategies were associated with increased burden and decreased HQoL. We recommend that FTD caregivers be offered more support than AD caregivers. Furthermore, we suggest that interventions target passive coping strategies.

The behavioural assessment of the dysexecutive syndrome as a tool to assess executive functions in schizophrenia.

Recent research into the cognitive dysfunctions in schizophrenia has focused on executive deficits. This study investigates performance of patients with schizophrenia on the recently developed Behavourial Assessment of the Dysexecutive Syndrome (BADS). Matched groups of 24 patients with schizophrenia and 17 healthy volunteers were administered the BADS, the Modified Card Sorting Test (MCST), the Tower of London (TOL), a test of general intelligence, and measures of daily functioning. Performance of the schizophrenic group was significantly below that of the control group on the BADS and the MCST, but not on the TOL. The BADS correlated weakly with the MCST. Both tests showed a modest correlation with daily functioning. The BADS appears to offer a useful contribution to the assessment of executive deficits in schizophrenia.