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Person centred research Manchester Clinical Dementia Research Group Division of Neuroscience and Experimental Psychology Francine Jury ([email protected]) Dementia Clinical Research: Detection and Intervention Dementia@Manchester Theme: ‘Treatment and Management’ Participation in clinical research Age Medications Carers Co-morbidities Mental capacity Mobility Diagnosis Location GM Dementia 5 year strategy 5 domains of dementia care Preventing well Diagnosing well Living well Supporting well Dying well Dementia strategy assistive technologies Preventing well Diagnosing well Living well Supporting well Dying well Dementia friendly technology charter Dementia Strategy Preventing well Diagnosing well Treating and managing well Living well Supporting well Dying well Options for patients • Current medications have some effect for a short period of time • Clinical trials of new drugs failing • Stage of dementia too advanced • Availability of participants • Psychosocial interventions • Outcome measures Early diagnosis • Before cognitive impairment recognised by patient /carer • • • • • • Amyloid deposits Behavioural changes Gait analysis Voice changes Changes in computer use Sleep patterns Exploring both the feasibility of collecting data from patients and carers, and the potential of the dataset to inform the care of people with memory problems. The dataset includes the recently published ICHOM Standard Set for Dementia and information about the patient’s pathway through the memory assessment services and the care interventions provided, such as different therapies and support services. Sub studies • Mobile data collection: using a web/mobile app to collect self-reported data on a weekly basis from home • Wearable device: using a wearable device that looks like a watch to collect information on activity and sleep over a 12 weeks period www.ecygnus.com Wearable devices Withings Activité Pop • • • • Sleep and activity tracker Battery life 8 months Focus group choice Wear for 3 months Issues • Tolerance /acceptability / availability of tech • Enablers - children, carers, partner • 22/260 participants • Commercial device- not raw data / algorithms • Sleep activity Change of device AX Axivity 3 • • • • • Sleep and activity tracker Battery life 2 weeks Closed system storage No need for app Raw data accelerometer data
