Marjolein E. de Vugt

Behavioral Problems in Dementia: A Factor Analysis of the Neuropsychiatric Inventory

The aim of this study was to detect behavioral subsyndromes of the 12-item Neuropsychiatric Inventory (NPI). Cross-sectional data of 199 patients with dementia living in the community were collected. Principal component analysis (with Varimax rotation) was used for factor analysis. Results showed the presence of three behavioral subsyndromes: mood/apathy, psychosis, and hyperactivity. Anxiety was regarded as a separate symptom. The subsyndrome mood/apathy was the most common, occurring in almost 80% of the patients, versus psychosis and hyperactivity, which occurred in 37 and 60% of the patients, respectively.

Impact of Behavioural Problems on Spousal Caregivers: A Comparison between Alzheimer’s Disease and Frontotemporal Dementia

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.

Impact of early onset dementia on caregivers: a review

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.

Target risk factors for dementia prevention: a systematic review and Delphi consensus study on the evidence from observational studies

Dementia has a multifactorial etiology, but the importance of individual health and lifestyle related risk factors is often uncertain or based on few studies. The goal of this paper is to identify the major modifiable risk factors for dementia as a first step in developing an effective preventive strategy and promoting healthy late life cognitive functioning.

Awareness and behavioral problems in dementia patients: a prospective study

BACKGROUND The results of studies of the association between awareness and clinical correlates in patients with dementia are inconclusive. The aims of this study were to investigate whether awareness changed during the course of dementia and to determine whether awareness was associated with certain behavioral symptoms. Specifically, it was hypothesized that relatively intact awareness was related to affective disorders. METHODS One hundred and ninety-nine patients with dementia were included in a prospective 18-month follow-up study. Behavioral problems were assessed with the Neuropsychiatric Inventory and the Cornell Scale for Depression in Dementia. Awareness was assessed by means of the Guidelines for the Rating of Awareness Deficits. RESULTS Cross-sectional analyses showed awareness to be positively associated with age, gender, education and socioeconomic status, and negatively associated with psychosis, apathy, and overall behavioral disorders at baseline. After 1 year, a higher level of awareness was related to depression and anxiety. The level of awareness at baseline also predicted depression and anxiety after 1 year. Awareness decreased during the study. CONCLUSIONS A higher level of awareness is associated with subsyndromal depression and anxiety, whereas lack of awareness is associated with psychosis and apathy. The level of awareness decreases as dementia progresses. Clinicians should be more alert to changes in awareness in patients with dementia because psychosocial support might help to prevent the development of affective symptoms.

The impact of early dementia diagnosis and intervention on informal caregivers

In the absence of disease modifying therapies for dementia, the question rises what the benefits are of an early dementia diagnosis for patients and their caregivers. This paper reviews the caregiver perspective in dementia and addresses the question what the consequences are of promoting earlier dementia diagnosis. An early diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role. Caregivers that are better able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems. However, drawbacks of an early diagnosis may outweigh the benefits if people are left with a diagnosis but little support. There is convincing evidence that multicomponent caregiver interventions in the mild to moderate dementia stages are effective to improve caregiver well-being and delay institutionalization. However, there still exist a gap between the improved possibilities to diagnose people in the predementia stage versus the scarce knowledge on intervention effects in this very early stage. This stresses the urgent need for more research on early caregiver interventions that enhance role adaptation and that include long-term follow-up and cost-effectiveness evaluation. Early interventions may help caregivers in anticipating and accepting the future care role and transitions, with the increased possibility that caregivers can still involve the patient in the decision making process. As levels of stress and burden are still low in the predementia stage it provides excellent opportunities to empower the resources of caregivers.

Needs in Early Onset Dementia: A Qualitative Case From the NeedYD Study

Objectives: The aim was to explore the experiences of a caregiver of a patient with early onset dementia (EOD) and the needs of patient and caregiver. Methods: A single case study design was used to explore (1) unmet needs of patient and caregiver and (2) caregiver’s experiences of transitions in care and health care services. A qualitative analysis was used to examine the data. Results: This study shows that a patient with EOD and the caregiver were confronted with specific issues during the care process, namely (1) prolonged time to diagnosis, (2) a lack of fit between needs and services, (3) the strain of dedication to care versus the caregiver’s own future perspective, (4) the need for response of health care services to changing individual preferences. Conclusion: This study illustrates specific issues related to early onset dementia that require specialized EOD care such as the differential and changing needs of patients and caregivers.

Predictive factors for the objective burden of informal care in people with dementia: a systematic review.

Background:Informal care plays a substantial role in the provision of total care in dementia. Several reviews have been published on the predictive factors of subjective burden; however, such a review lacks information on objective burden, which refers to the amount and/or costs of informal care. Objectives:The objectives of this study were to (1) give an overview of the predictive factors that are associated with the objective burden of informal care; (2) discuss whether these factors are similar to the predictive factors of subjective burden; and (3) examine whether they are modifiable. Design:The literature in a number of international databases was systematically searched. Methodological quality and level of certainty were assessed. Results:Ten studies were identified as relevant for the purpose of this review, describing a total of 39 predictive factors. Three factors (behavioral problems and impairments regarding daily functioning and cognition) were considered to be predictors of objective burden. Three factors were not related; 12 were potential predictors; and the results of the remaining 22 factors were inconclusive. Conclusions:Many factors were found to be (potential) predictors of objective burden, reflecting its complex nature. Objective and subjective burdens are 2 different relevant aspects of informal care. Interventions aimed at countering behavioral problems and impairments regarding daily functioning could reduce objective burden.

The Use of Formal and Informal Care in Early Onset Dementia: Results From the NeedYD Study

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

A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise?

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.