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Int J Environ Res Public Health ; 18(21)2021 10 28.
Article in English | MEDLINE | ID: covidwho-1512288


Recruiting participants for dementia research takes time. For those who are interested, opportunities to participate can be ad hoc. Delays in finding the right participants can result in studies taking longer to deliver, often requiring funding extensions, and ultimately increasing the cost and limiting the effectiveness of research and evaluation. To address these issues, a digital platform, StepUp for Dementia Research, was developed in 2019 and evaluated through ongoing data analytics, researcher feedback and annual volunteer surveys in 2019 and 2021. Using innovative matching technology, StepUp provides volunteers with an opt-in, secure way of registering interest in dementia studies and allows researchers to access matched volunteers in Australia. As of June 2021, 1070 volunteers registered (78% female), and 25 organizations became 'champions' for StepUp promotion. Of 122 registered researchers, 90 completed training. Forty studies from 17 research/health institutions recruited participants using StepUp. The evaluation demonstrated program feasibility and recruitment efficiency with a high level of satisfaction from users. Evaluation outcomes highlighted disparities in public participation in dementia research (e.g., gender, education and race/ethnicity) and provided valuable insights for further enhancements of StepUp. A concerted and strategic effort is needed by leading registries such as StepUp to ensure narrowing volunteer participation gaps in dementia research.

Community Participation , Dementia , Australia , Dementia/epidemiology , Female , Humans , Male , Registries , Surveys and Questionnaires
Australas J Ageing ; 39(3): 283-286, 2020 Sep.
Article in English | MEDLINE | ID: covidwho-868008


OBJECTIVE: We developed interim guidance for the care of patients with cognitive impairment in hospital during the COVID-19 pandemic. METHODS: A Guidance Committee and Readers Group were recruited. The content was identified by the Committee and content-specific subgroups, resulting in a draft document, which was sent to the Readers for review. People with dementia and care partners were involved in all aspects of the process. RESULTS: Infection control measures can lead to an escalation of distress. In an environment where visiting bans are applied to care partners/advocates, hospitals need to ensure care partners can continue to provide decision-making support. Health-care professionals can proactively engage care partners using videoconferencing technologies. Developing models of care that proactively support best practice can minimise the risk of delirium, mitigate escalating symptoms and guide the use of non-pharmacological, pharmacological (start low, go slow) or physical restraint in managing behavioural and psychological symptoms.

Betacoronavirus , Cognitive Dysfunction/psychology , Cognitive Dysfunction/therapy , Coronavirus Infections/epidemiology , Coronavirus Infections/prevention & control , Infection Control/organization & administration , Pandemics/prevention & control , Pneumonia, Viral/epidemiology , Pneumonia, Viral/prevention & control , Adult , Australia , COVID-19 , Coronavirus Infections/transmission , Hospitalization , Humans , Pneumonia, Viral/transmission , SARS-CoV-2