39 research outputs found

    Een ondersteuningsgroep voor studenten met psychiatrische beperkingen.

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    In dit artikel wordt ingegaan op de ontwikkeling van een ondersteuningsgroep voor studenten met psychiatrische beperkingen. Deze is opgezet in het kader van een project Studeren met Steun. Naast deze ondersteuningsgroep zijn in dit project workshops voor docenten van hogeschool en universiteit georganiseerd en informatiebrochures voor de genoemde doelgroep gemaakt (zie www.begeleidleren.nl). Eerst worden enkele achtergrondgegevens van studenten met psychiatrische beperkingen belicht en vervolgens worden de ontwikkeling van een ondersteuningsgroep en de ervaringen daarmee beschreven. Na de discussie worden aanbevelingen gedaan

    Professionals’ opinions on support for people with chronic illness in their roles as parents in mental or in general health care

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    Chronic illness affects a person’s wellbeing and affects the ability to perform the social roles of spouse or parent. When working with people with long-lasting mental or somatic illnesses, social workers and nurses are confronted with needs for support, especially for parents. Although programs are in place for the children of parents with chronic illnesses, specific services for the parents themselves are scarce, as are parenting support courses for professionals. In an explorative study we investigated the similarities and differences between mental health organizations and general hospitals in providing support to parents. Using a cross-sectional design, information on supported parenting was collected through an internet questionnaire. Twice as many professionals in general hospitals can provide support to parents than did those in mental health organizations that were not trained in supported parenting. Professionals in mental health institutions generally reported that the attention paid to the parental role is insufficient. However, professionals in mental health organizations who were trained in supported parenting considered paying attention to the parental role more as a part of their job than the participants from organizations without such training. Further research should expand this first pilot study on the attitude of professionals towards supported parenting

    Unravelling the clinical spectrum and the role of repeat length in C9ORF72 repeat expansions

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    Since the discovery of the C9orf72 repeat expansion as the most common genetic cause of frontotemporal dementia (FTD) and amyotrophic lateral sclerosis, it has increasingly been associated with a wider spectrum of phenotypes, including other types of dementia, movement disorders, psychiatric symptoms and slowly progressive FTD. Prompt recognition of patients with C9orf72-associated diseases is essential in light of upcoming clinical trials. The striking clinical heterogeneity associated with C9orf72 repeat expansions remains largely unexplained. In contrast to other repeat expansion disorders, evidence for an effect of repeat length on phenotype is inconclusive. Patients with C9orf72-associated diseases typically have very long repeat expansions, containing hundreds to thousands of GGGGCC-repeats, but smaller expansions might also have clinical significance. The exact threshold at which repeat expansions lead to neurodegeneration is unknown, and discordant cut-offs between laboratories pose a challenge for genetic counselling. Accurate and large-scale measurement of repeat expansions has been severely hindered by technical difficulties in sizing long expansions and by variable repeat lengths across and within tissues. Novel long-read sequencing approaches have produced promising results and open up avenues to further investigate this enthralling repeat expansion, elucidating whether its length, purity, and methylation pattern might modulate clinical features of C9orf72-related diseases

    Longitudinal cognitive biomarkers predicting symptom onset in presymptomatic frontotemporal dementia

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    Introduction: We performed 4-year follow-up neuropsychological assessment to investigate cognitive decline and the prognostic abilities from presymptomatic to symptomatic familial frontotemporal dementia (FTD). Methods: Presymptomatic MAPT (n = 15) and GRN mutation carriers (n = 31), and healthy controls (n = 39) underwent neuropsychological assessment every 2 years. Eight mutation carriers (5 MAPT, 3 GRN) became symptomatic. We investigated cognitive decline with multilevel regression modeling; the prognostic performance was assessed with ROC analyses and stepwise logistic regression. Results: MAPT converters declined on language, attention, executive function, social cognition, and memory, and GRN converters declined on attention and executive function (p < 0.05). Cognitive decline in ScreeLing phonology (p = 0.046) and letter fluency (p = 0.046) were predictive for conversion to non-fluent variant PPA, and decline on categorical fluency (p = 0.025) for an underlying MAPT mutation. Discussion: Using longitudinal neuropsychological assessment, we detected a mutation-specific pattern of cognitive decline, potentially suggesting prognostic value of neuropsychological trajectories in conversion to symptomatic FTD

    Cognitive profiles discriminate between genetic variants of behavioral frontotemporal dementia

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    Introduction: Trials to test disease-modifying treatments for frontotemporal dementia are eagerly awaited and sensitive instruments to assess potential treatment effects are increasingly urgent, yet lacking thus far. We aimed to identify gene-specific instruments assessing clinical onset and disease progression by comparing cognitive functioning between bvFTD patients across genetic mutations. Methods: We examined differences in 7 cognitive domains between bvFTD patients with GRN (n = 20), MAPT (n = 29) or C9orf72 (n = 31) mutations, and non-carriers (n = 24), and describe
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