IntroductionDementia is one of the most relevant widespread diseases, with a prevalence of currently 50 million people with dementia worldwide. The care of people with dementia will be one of the major challenges for healthcare systems worldwide. Digitalisation offers new possibilities to improve both dementia healthcare and health outcomes research as a fundament for national healthcare planning. The ‘Digital Dementia Registry Bavaria—digiDEM Bayern’ aims to improve the understanding of the complexity and long-term progression of dementia and the current care situation in Bavaria. Moreover, by offering digital services, digiDEM will actively contribute to improving the care situation in Bavaria.Methods and analysisdigiDEM will recruit people with dementia and their family caregivers in all administrative regions of Bavaria. All participants will undergo dementia screening prior to study inclusion in order to identify people with mild cognitive impairment and mild-to-moderate dementia. Participants will be followed up over a period of three years. Sociodemographic data, type of dementia, symptoms, diagnosis, cognitive trajectories, activities of daily living, behavioural and psychological symptoms, falls, resource utilisation, caregiver burden, quality of life, needs of people with dementia and their caregivers, mobility, use of media and sources of information will be assessed. The project will implement a digital web-based platform for data collection. Data will be collected by means of standardised online or face-to-face interviews.Ethics and disseminationThe study obtained ethical approval from the Ethics Committee of the Medical Faculty of Friedrich-Alexander-University Erlangen-Nürnberg (FAU) (application number: 253_20 B). Findings will be used for evidence-based decision-making for health decision-makers in order to optimise dementia healthcare in the state of Bavaria. Specific analyses will be conducted for the participating research partners. Results of the study will be published in peer-reviewed journals.

Background The prevalence of dementia is expected to increase dramatically. Due to a lack of pharmacological treatment options for people with dementia, non-pharmacological treatments such as exercise programs have been recommended to improve cognition, activities of daily living, and neuropsychiatric symptoms. However, inconsistent results have been reported across different trials, mainly because of the high heterogeneity of exercise modalities. Thus, this systematic review aims to answer the questions whether exercise programs improve cognition, activities of daily living as well as neuropsychiatric symptoms in community-dwelling people with dementia. Methods Eight databases were searched for articles published between 2016 and 2021 (ALOIS, CENTRAL, CINAHL, Embase, MEDLINE, PsycINFO, PubMed, Web of Science). Randomized controlled trials evaluating the effects of any type of physical activity on cognition, activities of daily living, or neuropsychiatric symptoms in community-dwelling people with a formal diagnosis of dementia were included in this systematic review. Two authors independently assessed eligibility and quality of the studies. The methodology was in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Results Eight publications covering seven trials were included in this review with the majority investigating either a combination of strength and aerobic exercise or aerobic exercise alone. This review revealed that there is no clear evidence for the beneficial effects of exercise on cognition. None of the included trials found an impact on activities of daily living. Although different randomized controlled trials reported inconsistent results, one trial indicated that especially aerobic exercise may improve neuropsychiatric symptoms. Conclusion Our systematic review did not confirm the impact of exercise on cognition and activities of daily living in community-dwelling people with dementia. The results suggested that aerobic exercise might be effective to reduce neuropsychiatric symptoms. Well-designed trials including only community-dwelling people with a formal diagnosis of dementia, large samples, long-term follow-ups, and detailed description of adherence to the intervention are needed to improve the scientific evidence on the best type of exercise modality. Trial registration PROSPERO, CRD42021246598.

Zusammenfassung Einleitung Durch die alternden Gesellschaften steigt die Zahl der Menschen mit Demenz (MmD), wodurch die Versorgung der MmD zu einer der zentralen Herausforderungen wird. Diese wird häufig von Angehörigen geleistet, weshalb pflegende Angehörige einer Vielzahl an Belastungen ausgesetzt sind. Entlastende Angebote werden jedoch generell eher selten in Anspruch genommen. Ziel der vorliegenden Analyse ist es, die Inanspruchnahme ambulanter Pflege auf beeinflussende Faktoren hin zu untersuchen. Methodik Der Bayerische Demenz Survey (BayDem) ist eine multizentrische Längsschnittstudie, die in 3 Regionen (Dachau, Erlangen, Kronach) in Bayern durchgeführt wurde. Projektteilnehmer/innen waren MmD nach ICD-10, sowie deren pflegende Angehörige. Die Verlaufsdaten wurden in standardisierten, persönlichen Interviews in enger Zusammenarbeit mit lokalen Akteuren vor Ort erhoben. In der vorliegenden Analyse wurde die Inanspruchnahme ambulanter Unterstützungsangebote, insbesondere der ambulanten Pflege, untersucht. Um beeinflussende Faktoren zu identifizieren, wurde eine binär-logistische Regression durchgeführt. Ergebnisse In BayDem wurden zu Studienbeginn 364 MmD und 339 pflegende Angehörige eingeschlossen. Die Inanspruchnahme ambulanter Unterstützungsangebote war insgesamt gering. Unterstützung in Form von ambulanter Pflege wurde von etwa einem Drittel aller Befragten in Anspruch genommen, womit es das am häufigsten erhaltene Unterstützungsangebot war. Ein signifikanter Zusammenhang wurde zwischen dem Schweregrad des Demenzsyndroms und der Inanspruchnahme ambulanter Pflege 6 Monate nach Studienbeginn festgestellt. Die Chance ambulante Pflege zu beziehen war zudem signifikant höher, wenn ambulante Pflege bereits zu Studienbeginn genutzt wurde. Schlussfolgerungen Ambulante Unterstützungsangebote werden, obwohl sie einen wichtigen Beitrag zur Entlastung pflegender Angehöriger leisten können, generell eher selten in Anspruch genommen. Um die Inanspruchnahme entlastender Unterstützungsangebote zu erhöhen, sollten die Zugangswege zu entsprechenden Angeboten niedrigschwellig gehalten werden. Neben mehr Öffentlichkeitsarbeit werden deshalb v. a. „zugehende“ Angebote benötigt, um den Betroffenen den Zugang zu Unterstützungsangeboten zu erleichtern.

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