ORCID Profile
0000-0003-2105-350X
Current Organisation
Imperial College London Faculty of Medicine
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Publisher: JMIR Publications Inc.
Date: 18-04-2023
Abstract: echnology-related research for people with dementia and their carers often aims to enable people to remain living at home for longer and to prevent unnecessary hospital admissions. To develop research that is person-centred, effective and ethical, patient and public involvement (PPI) is necessary, though may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care related technology, this review explores how, and with what impact, collaborations between researchers and stakeholders such as people with dementia have taken place. o describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area. scoping review of literature relating to dementia, technology and patient and public involvement was conducted using Medline, PsycINFO, EMBASE and CINAHL. Papers were screened for inclusion by two authors. Data was then extracted using a pre-designed data extraction table by the same two authors a third author supported resolution of any conflicts at each stage. Barriers and facilitators of undertaking PPI were then examined and themed. hirty-one papers were included for analysis. The majority (21/31) did not make clear distinctions between activities undertaken as PPI and activities undertaken by research participants, and as such their involvement did not fit easily into the NIHR definition of PPI. Most of this mixed involvement focused on the reviewing or evaluating of technology prototypes. A range of approaches was described, most typically using focus groups or co-design workshops. Nine studies described involvement at multiple stages through the research cycle, sometimes with evidence of sharing of decision-making power. Some studies commented on barriers or facilitators to effective PPI. Challenges identified were often around issues of working with people with significant cognitive impairments, and pressures on time and resources. Most studies did not evaluate the impact of involvement. Where reported, impact was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. esearchers often involve people with dementia and other stakeholders in technology research. At present involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers and other stakeholders can have a positive impact on the research, patient and public partners and researchers. Wider reporting of methods and facilitative strategies along with more formalised methods for recording and reporting on meaningful impact would be helpful so that all those involved – researchers, patients, and other stakeholders – can learn how together we can best conduct research.
Publisher: JMIR Publications Inc.
Date: 09-03-2023
DOI: 10.2196/43777
Abstract: Internet of Things (IoT) technology enables physiological measurements to be recorded at home from people living with dementia and monitored remotely. However, measurements from people with dementia in this context have not been previously studied. We report on the distribution of physiological measurements from 82 people with dementia over approximately 2 years. Our objective was to characterize the physiology of people with dementia when measured in the context of their own homes. We also wanted to explore the possible use of an alerts-based system for detecting health deterioration and discuss the potential applications and limitations of this kind of system. We performed a longitudinal community-based cohort study of people with dementia using “Minder,” our IoT remote monitoring platform. All people with dementia received a blood pressure machine for systolic and diastolic blood pressure, a pulse oximeter measuring oxygen saturation and heart rate, body weight scales, and a thermometer, and were asked to use each device once a day at any time. Timings, distributions, and abnormalities in measurements were examined, including the rate of significant abnormalities (“alerts”) defined by various standardized criteria. We used our own study criteria for alerts and compared them with the National Early Warning Score 2 criteria. A total of 82 people with dementia, with a mean age of 80.4 (SD 7.8) years, recorded 147,203 measurements over 958,000 participant-hours. The median percentage of days when any participant took any measurements (ie, any device) was 56.2% (IQR 33.2%-83.7%, range 2.3%-100%). Reassuringly, engagement of people with dementia with the system did not wane with time, reflected in there being no change in the weekly number of measurements with respect to time (1-s le t-test on slopes of linear fit, P=.45). A total of 45% of people with dementia met criteria for hypertension. People with dementia with α-synuclein–related dementia had lower systolic blood pressure 30% had clinically significant weight loss. Depending on the criteria used, 3.03%-9.46% of measurements generated alerts, at 0.066-0.233 per day per person with dementia. We also report 4 case studies, highlighting the potential benefits and challenges of remote physiological monitoring in people with dementia. These include case studies of people with dementia developing acute infections and one of a person with dementia developing symptomatic bradycardia while taking donepezil. We present findings from a study of the physiology of people with dementia recorded remotely on a large scale. People with dementia and their carers showed acceptable compliance throughout, supporting the feasibility of the system. Our findings inform the development of technologies, care pathways, and policies for IoT-based remote monitoring. We show how IoT-based monitoring could improve the management of acute and chronic comorbidities in this clinically vulnerable group. Future randomized trials are required to establish if a system like this has measurable long-term benefits on health and quality of life outcomes.
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Danielle Wilson.