Titel Deelnemers "Korte inhoud" "Nachtelijke onrust bij personen met dementie in woonzorgcentra: een verkennende veldstudie. (Nighttime restlessness in people with dementia in residential care: an explorative field study)" "Marieke Van Vracem, Nele Spruytte, Anja Declercq" "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 om met nachtelijke onrust? Data werden verzameld aan de hand van dagboeken, interviews met zorgmedewerkers en telkens één nacht observatie in acht woonzorgcentra. Dwalen en roepen blijken veel voorkomende vormen van nachtelijke onrust te zijn. Tal van factoren kunnen volgens de zorgverleners bijdragen tot het ontstaan van nachtelijke onrust. Omgevingsfactoren zoals geluid en licht worden zelden spontaan vermeld. Uit de observaties blijken lawaai en licht echter opvallende stoorzenders voor een goede nachtrust te zijn.Zorgverleners proberen meerdere oplossingen uit: bijvoorbeeld de persoon met dementie verbaal tot rust brengen, gebruik maken van een nachtlampje of medicatie en/of fysieke fixatie toepassen.De aanpak van nachtelijke onrust vereist een totaalaanpak. Verandering van de materiële omgeving voor vermindering van nachtelijke onrust wordt door zorgverleners beperkt toegepast.Nighttime restlessness in dementia is an underestimated problem. Although little is known about the prevalence and not every person with dementia struggles with it, nighttime restlessness puts a heavy burden on the persons themselves and their caregivers. This field study explores nighttime restlessness in nursing homes based on two research questions: 1. What is nighttime restlessness according to professional caregivers? and 2. How is nighttime restlessness managed?Data were collected through diaries, interviews with caregivers and one night of observation in eight nursing homes. Wandering and screaming seem to be the most prevalent nighttime agitated behaviours. Caregivers identify many possible causes, but spatial and sensory factors, such as light or noise, were rarely mentioned spontaneously. The observations highlighted that a lot of light and noise is prominent and this might be causing nighttime restlessness. Caregivers try several strategies: for example talking with the resident, put on a light and apply medication or physical restraints. The management of nighttime restlessness requires a holistic approach. Caregivers’ attention for and efforts to ameliorate the spatial and sensory environment in the management of nighttime restlessness are limited." "Nachtelijke onrust bij personen met dementie in woonzorgcentra: een verkennende veldstudie. (Nighttime restlessness in people with dementia in residential care: an explorative field study)" "Marieke Van Vracem, Nele Spruytte, Anja Declercq, Chantal Van Audenhove" "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 om met nachtelijke onrust? Data werden verzameld aan de hand van dagboeken, interviews met zorgmedewerkers en telkens één nacht observatie in acht woonzorgcentra. Dwalen en roepen blijken veel voorkomende vormen van nachtelijke onrust te zijn. Tal van factoren kunnen volgens de zorgverleners bijdragen tot het ontstaan van nachtelijke onrust. Omgevingsfactoren zoals geluid en licht worden zelden spontaan vermeld. Uit de observaties blijken lawaai en licht echter opvallende stoorzenders voor een goede nachtrust te zijn. Zorgverleners proberen meerdere oplossingen uit: bijvoorbeeld de persoon met dementie verbaal tot rust brengen, gebruik maken van een nachtlampje of medicatie en/of fysieke fixatie toepassen. De aanpak van nachtelijke onrust vereist een totaalaanpak. Verandering van de materiële omgeving voor vermindering van nachtelijke onrust wordt door zorgverleners beperkt toegepast. Nighttime restlessness in dementia is an underestimated problem. Although little is known about the prevalence and not every person with dementia struggles with it, nighttime restlessness puts a heavy burden on the persons themselves and their caregivers. This field study explores nighttime restlessness in nursing homes based on two research questions: 1. What is nighttime restlessness according to professional caregivers? and 2. How is nighttime restlessness managed? Data were collected through diaries, interviews with caregivers and one night of observation in eight nursing homes. Wandering and screaming seem to be the most prevalent nighttime agitated behaviours. Caregivers identify many possible causes, but spatial and sensory factors, such as light or noise, were rarely mentioned spontaneously. The observations highlighted that a lot of light and noise is prominent and this might be causing nighttime restlessness. Caregivers try several strategies: for example talking with the resident, put on a light and apply medication or physical restraints. The management of nighttime restlessness requires a holistic approach. Caregivers’ attention for and efforts to ameliorate the spatial and sensory environment in the management of nighttime restlessness are limited." "My extra chromosome makes me extra vulnerable to dementia : onderzoek naar de ondersteuning van personen met het syndroom van Down en dementie in Vlaamse zorgcentra" "Alissa Verwimp, Sarah De Pauw" "Impact van Dementia Care Mapping op de interacties tussen zorgverleners en bewoners met dementie" "Bram Vermeulen, Nele Spruytte, Liza Van Eenoo, Anja Declercq" "Awareness of dementia by family carers of nursing home residents dying with dementia: a post-death study" "Yolanda WH Penders, Gwenda Albers, Lieve Van den Block" "Uptake and effectiveness of a tailor-made online lifestyle programme targeting modifiable risk factors for dementia among middle-aged descendants of people with recently diagnosed dementia: study protocol of a cluster randomised controlled trial (Demin s" "Joyce Vrijsen, Ameen Abu-Hanna, Els LM Maeckelberghe, Peter De Deyn, Andrea F. de Winter, Fransje E. Reesink, Richard C. Oude Voshaar, Erik Buskens, Sophia E. de Rooij, Nynke Smidt" "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 allocated to the passive (poster and flyer in a waiting room) and 8 to the active recruitment strategy (additional personal invitation by members of the team of the memory clinic). We aim to recruit 378 participants (40–60 years) with a parent who is recently diagnosed with Alzheimer’s disease or vascular dementia at one of the participating memory clinics. All participants receive a dementia risk assessment (online questionnaire, physical examination and blood sample) and subsequently an online tailor-made lifestyle advice regarding protective (Mediterranean diet, low/moderate alcohol consumption and high cognitive activity) and risk factors (physical inactivity, smoking, loneliness, cardiovascular diseases (CVD), hypertension, high cholesterol, diabetes, obesity, renal dysfunction and depression) for dementia. The primary outcome is the difference in uptake between the two recruitment strategies. Secondary outcomes are change(s) in (1) the Lifestyle for Brain Health score, (2) individual health behaviours, (3) health beliefs and attitudes towards DRR and (4) compliance to the tailor-made lifestyle advice. Outcomes will be measured at 3, 6, 9 and 12 months after baseline. The effectiveness of this online tailor-made lifestyle programme will be evaluated by comparing Demin participants to a matched control group (lifelines cohort)." "Designing with dementia: guidelines for participatory design together with persons with dementia" "Niels Hendriks, Frederik Truyen, Erik Duval" "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 as they assume that the participants are cognitively able; can make use of visual and hands-on techniques; or require a high level of abstraction ability of the person with dementia. The aim of this paper is to present a number of guidelines which can be used as a starting point to set up participatory design projects with persons with dementia. This overarching set of guidelines provides for practical advice focusing on the role of the moderator, the preparation of a participatory session, the choice and adaptation of the method, the tools used, the role of each participant and the subsequent analysis. The basis for these guidelines stems from similar participatory projects with senior participants, persons with dementia and participants with aphasia or amnesia, two symptoms frequently co-occurring with dementia. All guidelines were evaluated and refined during four sessions with persons with dementia and a trusted family member. These participatory design sessions occurred in the course of the AToM project, a research and design project that tries to design an intelligent network of objects and people to ameliorate the life of persons with dementia." "Frontotemporal dementia: a bridge between dementia and neuromuscular disease" "Adeline S. L. Ng, Rosa Rademakers, Bruce L. Miller" "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. The discovery that the C9ORF72 locus is responsible for the majority of hereditary FTD, amyotrophic lateral sclerosis (ALS), and FTD-ALS cases and the understanding that repeat-containing RNA plays a crucial role in pathogenesis of both disorders has paved the way for the development of potential biomarkers and therapeutic targets for these devastating diseases. In this review, we summarize the historical aspects leading up to our current understanding of the genetic, clinical, and neuropathological overlap between FTD and ALS, and include brief discussions on chronic traumatic encephalopathy (CTE), given its association with TDP-43 pathology, its associated increased dementia risk, and reports of ALS in CTE patients. In addition, we describe other genetic associations between dementia and neuromuscular disease, such as inclusion body myositis with Paget's disease and FTD." "Structural MRI predicts clinical progression in presymptomatic genetic frontotemporal dementia: findings from the GENetic Frontotemporal dementia Initiative cohort" "Rik Vandenberghe" "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), together with 240 non-carrier cognitively normal controls. Cortical and subcortical grey matter volumes were generated using automated parcellation methods on volumetric 3T T1-weighted MRI scans, while white matter characteristics were estimated using diffusion tensor imaging. Mutation carriers were divided into two disease stages based on their global CDR®+NACC-FTLD score: presymptomatic (0 or 0.5) and fully symptomatic (1 or greater). The w-scores in each grey matter volumes and white matter diffusion measures were computed to quantify the degree of abnormality compared to controls for each presymptomatic carrier, adjusting for their age, sex, total intracranial volume, and scanner type. Presymptomatic carriers were classified as 'normal' or 'abnormal' based on whether their grey matter volume and white matter diffusion measure w-scores were above or below the cut point corresponding to the 10th percentile of the controls. We then compared the change in disease severity between baseline and one year later in both the 'normal' and 'abnormal' groups within each genetic subtype, as measured by the CDR®+NACC-FTLD sum-of-boxes score and revised Cambridge Behavioural Inventory total score. Overall, presymptomatic carriers with normal regional w-scores at baseline did not progress clinically as much as those with abnormal regional w-scores. Having abnormal grey or white matter measures at baseline was associated with a statistically significant increase in the CDR®+NACC-FTLD of up to 4 points in C9orf72 expansion carriers, and 5 points in the GRN group as well as a statistically significant increase in the revised Cambridge Behavioural Inventory of up to 11 points in MAPT, 10 points in GRN, and 8 points in C9orf72 mutation carriers. Baseline regional brain abnormalities on MRI in presymptomatic mutation carriers are associated with different profiles of clinical progression over time. These results may be helpful to inform stratification of participants in future trials." "Dealing with daily challenges in dementia (deal-id study): effectiveness of the experience sampling method intervention 'Partner in Sight' for spousal caregivers of people with dementia: design of a randomized controlled trial" "Inez Germeys" "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'."