The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person-centered methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID-care. We examined the experiences of ID-professionals in using DCM. We performed a mixed-methods study, using quantitative data from care staff (N = 136) and qualitative data (focus-groups, individual interviews) from care staff, group home managers and DCM-in-intellectual disabilities mappers (N = 53). ageing, dementia, Dementia Care Mapping, intellectual disability, mixed-methods, personcentred care
MULTIFILE
Light therapy for older persons with dementia is often administered with light boxes, even though indoor ambient light may more comfortably support the diverse lighting needs of this population. Our objective is to investigate the influence of indoor daylight and lighting on the health of older adults with dementia living in long-term care facilities. A systematic literature search was performed within PubMed, CINAHL, PsycINFO, Web of Science and Scopus databases. The included articles (n=37) were published from 1991 to 2020. These articles researched the influence of existing and changed indoor light conditions on health and resulted in seven categories of health outcomes. Although no conclusive evidence was found to support the ability of indoor light to decrease challenging behaviors or improve circadian rhythms, findings of two studies indicate that exposure to (very) cool light of moderate intensity diminished agitation. Promising effects of indoor light were to reduce depressive symptoms and facilitate spatial orientation. Furthermore, there were indications that indoor light improved one’s quality of life. Despite interventions with dynamic lighting having yielded little evidence of its efficacy, its potential has been insufficiently researched among this study population. This review provides a clear and comprehensive description of the impact of diverse indoor light conditions on the health of older adults with dementia living in long-term care facilities. Variation was seen in terms of research methods, (the description of) light conditions, and participants’ characteristics (types and severity of dementia), thus confounding the reliability of the findings. The authors recommend further research to corroborate the beneficial effects of indoor light on depression and to clarify its role in supporting everyday activities of this population. An implication for practice in long-term care facilities is raising the awareness of the increased lighting needs of aged residents. Original article at: https://doi.org/10.2147/CIA.S297865
MULTIFILE
The need for care will increase in the coming years. Most people with a disability or old age receive support from an informal caregiver. Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia). BPSD, including sleep disturbance, is an important factor for a higher care load. In this scoping review, we aim to investigate whether technology is available to support the informal caregiver, to lower the care burden, improve sleep quality, and therefore influence the reduction of social isolation of informal caregivers of people with dementia. A scoping review is performed following the methodological framework by Arksey and O'Mally and Rumrill et al., the scoping review includes scientific and other sources (unpublished literature, websites, reports, etc.). The findings of the scoping review shows that there are technology applications available to support the informal caregiver of a person with dementia. The technology applications mostly contribute to lower the care burden and/or improve sleep quality and therefore may contribute to reduce social isolation. The technology applications found target either the person with dementia, the informal caregiver, or both.
LINK
Wat dragen creatieve onderzoeksmethodes bij aan vernieuwing binnen de zorg? We onderzoeken dit binnen tien projecten van het Create Health-programma van ZonMw. In deze projecten wordt kennis ontwikkeld over de toegevoegde waarde van creatieve manieren van werken bij e-health innovatie.
Wat dragen creatieve onderzoeksmethodes bij aan vernieuwing binnen de zorg? We onderzoeken dit binnen tien projecten van het Create Health-programma van ZonMw. In deze projecten wordt kennis ontwikkeld over de toegevoegde waarde van creatieve manieren van werken bij e-health innovatie. Informatie over de onderzoeksresultaten is te vinden op de website: husite.nl/creatieve-onderzoeksmethodes en het artikel: CHIWaWA maakt samenwerking in create-health onderzoek inzichtelijk | Hogeschool Utrecht (hu.nl)Doel Het Create Health programma heeft tot doel om bij te dragen aan maatschappelijke uitdagingen rondom gezond en actief ouder worden. CHIWaWA werkt daarbij toe naar een conceptueel model dat manieren van werken in kaart brengt in create health projecten – gekoppeld aan theorie over boundary crossing en research impact – met betrekking tot projectuitkomsten en kennis-, persoonlijke-, en systeemontwikkeling van betrokken actoren. Resultaten onderzoek Kennis die zowel online als offline te raadplegen is, in een boek, in wetenschappelijke artikelen en op een website. Deze kennis bevat: Inzicht in kansen om impact van e-health innovatie in ‘create health’-samenwerking te vergroten; Projectnarratieven met ‘best practices’ voor interdisciplinaire samenwerking waarbij onderzoekers, creatieve industrie en zorgprofessionals betrokken zijn; Guidelines voor ontwikkelaars van e-health applicaties m.b.t. samenwerking met de creatieve industrie; Guidelines voor beleidsmakers m.b.t. het stimuleren van samenwerking tussen zorg en creatieve industrie en het gebruik van creatieve manieren van werken om onderzoek naar de praktijk te krijgen; Aanpak Vanuit een service-dominant logic perspectief wordt bekeken hoe toegepaste kennis en skills worden gedeeld tussen actoren die betrokken zijn bij de verschillende ‘create health’-projecten, wat de meerwaarde daarvan is en wat actoren van die uitwisseling – als proces – leren. De focus ligt op co-creatie van waarde, die door samenwerking en uitwisseling tot stand komt. Door middel van procesonderzoek wordt er toegewerkt naar bijdragen aan theorieontwikkeling op het gebied van boundary crossing en contribution mapping. Resultaten Eindpublicatie: Create Health: Samenwerking tussen zorg, wetenschap en creatieve industrie (2023) Boek: Create Ways of Working. Insights from ten ehealth Innovation research projects (2022) Website www.creatieveonderzoeksmethodes.nl (2022) Bijdragen aan conferenties en symposia Co-design in de anderhalvemetermaatschappij (whitepaper), Dutch Design Week 2020. Download de presentatieslides. Collaborating in complexity. Strategies for interdisciplinary collaboration n design work, Design4Health conference 2020 Grounding Practices. How researchers ground their work in create-health collaborations for designing e-health solutions, Design4Health conference 2020 Seven ways to foster interdisciplinary collaboration in research involving healthcare and creative research disciplines, DementiaLab conference 2019 Posterpresentatie: Health x Design, DementiaLab conference 2019 Meer informatie over het Create Health programma Het ZonMw programma Create Health heeft als doel om bij te dragen aan de maatschappelijke uitdaging rondom gezond en actief ouder worden. Binnen het programma worden activiteiten uitgezet waarbij de samenwerking tussen de creatieve industrie en zorg en welzijn voorop staat. Het gaat hierbij om publiek-private samenwerking (PPS).
Huntington’s disease (HD) and various spinocerebellar ataxias (SCA) are autosomal dominantly inherited neurodegenerative disorders caused by a CAG repeat expansion in the disease-related gene1. The impact of HD and SCA on families and individuals is enormous and far reaching, as patients typically display first symptoms during midlife. HD is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia. SCAs are mainly characterized by ataxia but also other symptoms including cognitive deficits, similarly affecting quality of life and leading to disability. These problems worsen as the disease progresses and affected individuals are no longer able to work, drive, or care for themselves. It places an enormous burden on their family and caregivers, and patients will require intensive nursing home care when disease progresses, and lifespan is reduced. Although the clinical and pathological phenotypes are distinct for each CAG repeat expansion disorder, it is thought that similar molecular mechanisms underlie the effect of expanded CAG repeats in different genes. The predicted Age of Onset (AO) for both HD, SCA1 and SCA3 (and 5 other CAG-repeat diseases) is based on the polyQ expansion, but the CAG/polyQ determines the AO only for 50% (see figure below). A large variety on AO is observed, especially for the most common range between 40 and 50 repeats11,12. Large differences in onset, especially in the range 40-50 CAGs not only imply that current individual predictions for AO are imprecise (affecting important life decisions that patients need to make and also hampering assessment of potential onset-delaying intervention) but also do offer optimism that (patient-related) factors exist that can delay the onset of disease.To address both items, we need to generate a better model, based on patient-derived cells that generates parameters that not only mirror the CAG-repeat length dependency of these diseases, but that also better predicts inter-patient variations in disease susceptibility and effectiveness of interventions. Hereto, we will use a staggered project design as explained in 5.1, in which we first will determine which cellular and molecular determinants (referred to as landscapes) in isogenic iPSC models are associated with increased CAG repeat lengths using deep-learning algorithms (DLA) (WP1). Hereto, we will use a well characterized control cell line in which we modify the CAG repeat length in the endogenous ataxin-1, Ataxin-3 and Huntingtin gene from wildtype Q repeats to intermediate to adult onset and juvenile polyQ repeats. We will next expand the model with cells from the 3 (SCA1, SCA3, and HD) existing and new cohorts of early-onset, adult-onset and late-onset/intermediate repeat patients for which, besides accurate AO information, also clinical parameters (MRI scans, liquor markers etc) will be (made) available. This will be used for validation and to fine-tune the molecular landscapes (again using DLA) towards the best prediction of individual patient related clinical markers and AO (WP3). The same models and (most relevant) landscapes will also be used for evaluations of novel mutant protein lowering strategies as will emerge from WP4.This overall development process of landscape prediction is an iterative process that involves (a) data processing (WP5) (b) unsupervised data exploration and dimensionality reduction to find patterns in data and create “labels” for similarity and (c) development of data supervised Deep Learning (DL) models for landscape prediction based on the labels from previous step. Each iteration starts with data that is generated and deployed according to FAIR principles, and the developed deep learning system will be instrumental to connect these WPs. Insights in algorithm sensitivity from the predictive models will form the basis for discussion with field experts on the distinction and phenotypic consequences. While full development of accurate diagnostics might go beyond the timespan of the 5 year project, ideally our final landscapes can be used for new genetic counselling: when somebody is positive for the gene, can we use his/her cells, feed it into the generated cell-based model and better predict the AO and severity? While this will answer questions from clinicians and patient communities, it will also generate new ones, which is why we will study the ethical implications of such improved diagnostics in advance (WP6).
