Marjolein E de Vugt

Maastricht University | UM · MHeNS School for Mental Health and Neuroscience

Introduction Numerous caregiver support programmes have shown promise in promoting the mental health of informal caregivers of people with dementia (PwD). However, there is still a lack of evidence-based interventions tailored to the specific needs of this population. This mixed-methods study aims to evaluate the feasibility, acceptability and prel...

Introduction: We studied the accuracy of the automatic speech recognition (ASR) software by comparing ASR scores with manual scores from a verbal learning test (VLT) and a semantic verbal fluency (SVF) task in a semiautomated phone assessment in a memory clinic population. Furthermore, we examined the differentiating value of these tests between pa...

The disease trajectory and healthcare requirements of patients with young‐onset dementia (YOD) differ from those of older patients. Accurate data about YOD is crucial to improve diagnosis and optimize care. PRECODE‐GP aims to set up a prospective national database of patients with YOD to gain insight into the occurrence and characteristics of patie...

Objectives: 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. Methods: In total, 27 persons participated in four focus group interviews. Eligible participants were caregivers (n = 19...

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-utili...

Background: Health- and lifestyle factors account for a substantial part of all dementia cases, which opens the opportunity for primary prevention. However, the required behavioral change is complex and involves targeting multiple risk factors. mHealth interventions can potentially contribute to improving motivation in a low-cost and scalable way....

Background: Neuropsychological tests and retrospective self-reports used in memory clinics provide a stationary and potentially memory-biased picture of cognitive functioning, thus neglecting the complexity of the person’s experience in everyday life. A diary technique known as the Experience Sampling Method (ESM) allows to capture dynamic fluctuat...

Background Dementia is a global health challenge. Currently, there is no curative treatment for dementia and therefore risk reduction through lifestyle modifications has become more prominent with high cognitive activity as a promising target. This study explored the association between an individual’s need to engage in cognitively stimulating acti...

Objectives: 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. Methods: This secondary data analysis included 145 persons with MCI and 154 persons with dementia and their family caregivers from...

Unlabelled: The key to stopping Alzheimer's disease (AD) lies in the pre-dementia stages, with the goal to stop AD before dementia has started. We present the rationale and design of the ABOARD (A Personalized Medicine Approach for Alzheimer's Disease) project, which aims to invest in personalized medicine for AD. ABOARD is a Dutch public-private...

Social health factors (e.g., social activities or social support) and cognitive activity engagement have been associated with dementia risk, but their neural substrates have not been well established. This systematic review and meta-analysis summarizes the available evidence regarding the association between these factors and cerebral macro- and mi...

Alzheimer's disease (AD) is a major healthcare challenge with no curative treatment at present. To address this challenge, we need a paradigm shift, where we focus on pre-dementia stages of AD. In this Perspective, we outline a strategy to move towards a future with personalized medicine for AD by preparing for and investing in effective and patien...

Objectives: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. Methods: A cross-sectional survey study i...

Objective To investigate whether automatic analysis of the Semantic Verbal Fluency test (SVF) is reliable and can extract additional information that is of value for identifying neurocognitive disorders. In addition, the associations between the automatically derived speech and linguistic features and other cognitive domains were explored. Method...

Epidemiological studies suggest an association between social health factors and dementia risk, but potential pathways between these factors remain largely unexplored. Therefore, the current study assesses the relationship between social isolation, social activity engagement, and dementia risk, including potential effect mediation by level of lonel...

Objective The recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. The objective is to develop a conceptual framewor...

Background: Timely diagnosis and adequate care is important for persons with young-onset dementia (YOD) and their caregivers, due to the high impact of the disease. Initiating care can be difficult for the general practitioner (GP) and other healthcare professionals. Objective: Provide insight in the care use of persons with YOD and identify fac...

Digital diaries, also known as the experience sampling method (ESM), allow for depiction of various aspects of everyday life in a fine-graded and dynamic way, and can improve self- awareness and health. This chapter presents the author’s research on digital diaries and technology use involving various aging populations, including healthy adults, pe...

Background: Comfort is frequently the main goal of care for nursing home residents with dementia in the Netherlands, but there are no data on care goals or other palliative care issues about residents with young-onset dementia (YOD). Methods: Physicians, family and nurses completed comprehensive questionnaires on sociodemographics, dementia-related...

Objective The behavioral variant of frontotemporal dementia is characterized by profound changes in personality and behavior that often start before the age of 65 years. These symptoms impact family life, particularly if (adult) children live at home. In research on young-onset dementia or frontotemporal dementia, the family itself is hardly ever a...

Background and aims Caring for a person with Huntington’s Disease (HD) and maintaining one’s own activities in everyday life becomes more and more challenging as the severity of the disease progresses. ‘Partner in Balance’ (PiB) is an online self-management program developed to help relatives of people with dementia develop skills to maintain balan...

Cognitive functioning is often impaired in mental and neurological conditions and might fluctuate throughout the day. An 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. The momentary Visuospatial Working Memory Task (...

Dementia is a syndrome where the origins are not fully understood, and we have no cure. New thinking through exploration of paradigms beyond biological approaches has scope to improve knowledge about this complex condition. We aim to explore the role of social health in cognitive decline and the onset of dementia. We performed a scoping and a syste...

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 Sc...

Introduction: Reliable data on the incidence rates for young-onset dementia (YOD) are lacking, but are necessary for research on disease etiology and to raise awareness among health care professionals. Methods: We performed a systematic review and meta-analysis on population-based studies on the incidence of YOD, published between January 1, 199...

Background: Young-onset dementia (YOD) has many underlying etiologies, leading to a large heterogeneity in first symptoms. This makes it difficult for general practitioners (GPs) to recognize YOD. Objective: Identify early symptoms that are more common in the pre-diagnostic phase of YOD. Methods: We performed a case-control study nested in a p...

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 wi...

Caregivers of persons with young-onset dementia (YOD) have an explicit need for tailored information and support about YOD. Therefore, during the European RHAPSODY project a web-based information and support program for YOD caregivers was developed. The program was recently tailored to the Dutch context. This study evaluates the Dutch version on us...

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...

Social isolation is a growing health issue in community-dwelling older adults with and without dementia as it can negatively affect their health and well-being. Consequently, psychosocial interventions targeting their social participation are increasingly gaining importance. So far, however, little is known about the potential of technological inte...

Background Cognitive and social leisure activities (CA/SA) as well as social network size (SNS) have been associated with performance on cognitive tasks and lower dementia risk. However, the neural mechanisms behind these associations remain unclear. Therefore, this systematic literature review aims at summarizing the available evidence on these as...

Background The disease trajectory of patients with young onset dementia differs from older patients, as do healthcare requirements. To improve specialized care, more insight in young onset dementia is crucial. The aim of PRECODE‐GP is therefore 1) to conduct an (annual) inventory of the diagnostic workup in all memory clinics in the Netherlands, an...

Background Young‐onset dementia (YOD) denotes persons who have an onset of the disease before the age of 65. Information on the epidemiology of YOD, especially the incidence, is scarce. Insight into the incidence can contribute to further research on the etiology, mechanism and risk factors of YOD. Therefore, we aimed to conduct a systematic review...

Background Previous research showed that semantic memory is a good indicator for cognitive decline in early phases of Alzheimer’s disease. Automatically derived deep speech parameters from the semantic verbal fluency (SVF) can potentially have an additional value to differentiate SCI, MCI and dementia, compared to the total fluency score. However,...

Background With the projected surge in global dementia cases, research is increasingly focusing on lifestyle factors as preventive measure. Social and cognitive leisure activities are promising targets, but have thus far received relatively little attention. This study investigates whether cognitive and social activities contribute to dementia risk...

Objectives Neuropsychiatric symptoms (NPS) have a major impact in persons with dementia (PwD). The interaction between the caregiver and the person with dementia may be related to the emergence of NPS. The concept of expressed emotion (EE) is used to capture this dyadic interaction. The aim of the present study is to examine longitudinally the asso...

Importance: Reliable prevalence estimates are lacking for young-onset dementia (YOD), in which symptoms of dementia start before the age of 65 years. Such estimates are needed for policy makers to organize appropriate health care. Objective: To determine the global prevalence of YOD. Data sources: The PubMed, Embase, CINAHL, and PsycInfo databases...

Introduction Researchers, policy-makers and healthcare professionals often stress the importance of an early dementia diagnosis. Empirical evidence, however, is scarce leading to a lack of consensus on the necessity of diagnosing dementia early. We emphasise the need for a ‘timely’ diagnosis, that is, one that occurs at the right moment for a perso...

There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans and strategies across Europe. A total of 26 national documents were fou...

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-pa...

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 t...

Objectives Evaluate the effect of a health promotion campaign aimed at increasing awareness about dementia risk reduction in middle-aged community-dwelling individuals in the Netherlands. Design A 10-month public health campaign using mass media and community participation, supported by eHealth. Population-level difference in awareness before and...

Objective To explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD). Design An observational longitudinal study. Setting and Participants A total of 278 residents with YOD were recruited from 13 YOD special care units in the Nethe...

Background: Daily functioning of people with cognitive disorders such as mild cognitive impairment (MCI) is usually depicted by retrospective questionnaires, which can be memory-biased and neglect fluctuations over time or contexts. Objective: This study examines the feasibility and usability of applying the experience sampling method (ESM) in p...

Background People with young-onset dementia (YOD) living in nursing homes may experience poor quality of life (QoL) due to advanced dementia, high prevalence of neuropsychiatric symptoms and psychotropic drug use. However, the course of QoL in institutionalized people with YOD and factors that predict this course are unclear. This knowledge could h...

This dissertation aims to improve the understanding and management of everyday life in older adults by using smartphone-based digital diaries and other eHealth solutions. Technology use can be challenging for older adults, particularly when dealing with cognitive dysfunctions. Therefore, the feasibility and usability of digital diaries is tested in...

Communities are generally responsible for creating health policies for people with dementia, people with late-life depression and informal caregivers. So far, the exchange of knowledge and best practices on older people’s public health between communities has remained limited, especially across borders. The cross-border Interreg Senior Friendly Com...

BACKGROUND Daily functioning of people with cognitive disorders such as mild cognitive impairment (MCI) is usually depicted by retrospective questionnaires, which can be memory-biased and neglect fluctuations over time or contexts. OBJECTIVE This study examines the feasibility and usability of applying the experience sampling method (ESM) in peopl...

Objective: 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). Method: Patients with and without a cognitive impairm...

Background Young-onset dementia (YOD) has a profound impact on spouses. However, little is known on how the quality of the relationship changes over time in YOD. This study aims to determine how the quality of the relationship changes over time and identify predictors of this change. Methods This study used data from the NEEDs in Young onset Demen...

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)...

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. Improvem...

Introduction People with depression, anxiety, or psychosis often complain of confusion, problems con- centrating or difficulties cognitively appraising contextual cues. The same applies to people with neurodegenerative diseases or brain damage such as dementia or stroke. Assess- ments of those cognitive difficulties often occurs in cross-sectional...

Objectives: Cognitive functioning is often impaired in mental and neurological conditions and might uctuate throughout the day. An existing experience-sampling tool was upgraded to assess individual's cognition in ev- eryday life. The objectives were to test the feasibility and validity of two momentary cognition tasks. Methods: The momentary Visuo...

Objective: To provide a new perspective on integrated biomedical and psychosocial dementia research. Background: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying...

Objectives: 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. Methods: Psychotropic drug use was studied in 198 community-dwelling persons participating in the Needs in Yo...

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 Septe...

Objective To identify determinants within 3 different domains (ie, somatic comorbidities, cognitive functioning, and neuropsychiatric symptoms [NPS]) of health-related quality of life (HRQoL) over time in memory clinic patients without dementia. Methods This longitudinal multicenter cohort study with a 3-year observation period recruited 315 indiv...

Objective: Self-monitoring is crucial to raise awareness for own behaviors and emotions, and thus facilitate self-management. The composition of self-monitoring within interventions, however, varies and guidelines are currently unavailable. This review aimed to provide a comprehensive overview of technology-based self-monitoring interventions that...

Objectives: In the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access...

Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Fo...

Objectives: 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...

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 cog...

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi‐structured in‐depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and t...