Publicaties

Background: High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. Aim: To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care ...

Agitatie tijdens de nacht of nachtelijke onrust is een onderschat probleem. Hoewel er weinig prevalentiecijfers bekend zijn en niet alle personen met dementie ermee te maken hebben, is het zeer belastend voor de betrokkene en voor de zorgverleners. Dit veldonderzoek verkent de problematiek van nachtelijke onrust in woonzorgcentra aan de hand van twee onderzoeksvragen: (1) Wat verstaan zorgverleners onder nachtelijke onrust? en (2) Hoe gaat men ...

Introduction Descendants of patients with dementia have a higher risk to develop dementia. This study aims to investigate the uptake and effectiveness of an online tailor-made lifestyle programme for dementia risk reduction (DRR) among middle-aged descendants of people with recently diagnosed late-onset dementia. Methods and analysis Demin is a cluster randomised controlled trial, aiming to include 21 memory clinics of which 13 will be randomly ...

Involving all stakeholders in the design process is often seen as a necessity from both a pragmatic and a moral point of view [1]. This is always a challenging task for designers and stakeholders and therefore many participatory design methods have been developed to facilitate such a design process. The traditional participatory design methods, however, are not fully appropriate to incorporate persons with dementia [2], [3]. They create issues ...

The concept that frontotemporal dementia (FTD) is a purely cortical dementia has largely been refuted by the recognition of its close association with motor neuron disease, and the identification of transactive response DNA-binding protein 43 (TDP-43) as a major pathological substrate underlying both diseases. Genetic findings have transformed this field and revealed connections between disorders that were previous thought clinically unrelated. ...

Biomarkers that can predict disease progression in individuals with genetic frontotemporal dementia are urgently needed. We aimed to identify whether baseline MRI-based grey and white matter abnormalities are associated with different clinical progression profiles in presymptomatic mutation carriers in the GENetic Frontotemporal dementia Initiative. Three hundred eighty-seven mutation carriers were included (160 GRN, 160 C9orf72, 67 MAPT), ...

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 ...

Background:Palliative care and Advance Care Planning (ACP) are increasingly recommended for an optimal management of late-stage dementia. In Belgium, euthanasia has been decriminalized in 2002 for patients who are “mentally competent” (interpreted as non-demented). It has been suggested that advance directives for euthanasia (ADE) should be made possible for dementia patients. Objective:This study presents the results of an internet survey among ...