Neurodegenerative disorders (NDDs) constitute an increasing global burden and can significantly impair an individual’s mobility, physical activity (PA), and independence. Remote monitoring has been difficult without relying on diaries/questionnaires which are more challenging for people with dementia to complete. Wearable global positioning system (GPS) sensors and accelerometers present a cost-effective and noninvasive way to passively monitor mobility and PA. In addition, changes in sensor-derived outcomes (such as walking behaviour, sedentary, and active activity) may serve as potential biomarkers of disease onset, progression, and response to treatment. We performed a systematic search across four databases to identify papers published within the past 5 years, in which wearable GPS or accelerometers were used to monitor mobility or PA in patients with common NDDs (Parkinson’s disease, Alzheimer’s disease, motor neuron diseases/amyotrophic lateral sclerosis, vascular parkinsonism, and vascular dementia). Disease and technology-specific vocabulary were searched singly, and then in combination, identifying 4985 papers. Following deduplication, we screened 3115 papers and retained 28 studies following a full text review. One study used wearable GPS and accelerometers, while 27 studies used solely accelerometers in NDDs. GPS-derived measures had been validated against current gold standard measures in one Parkinson’s cohort, suggesting that the technology may be applicable to other NDDs. In contrast, accelerometers are widely utilised in NDDs and have been operationalised in well-designed clinical trials.

Dementia is the most common neurodegenerative disorder globally. Disease progression is marked by declining cognitive function accompanied by changes in mobility. Increased sedentary behaviour and, conversely, wandering and becoming lost are common. Global positioning system (GPS) solutions are increasingly used by caregivers to locate missing people with dementia (PwD) but also offer a non-invasive means of monitoring mobility patterns in PwD. We performed a systematic search across five databases to identify papers published since 2000, where wearable or portable GPS was used to monitor mobility in patients with common dementias or mild cognitive impairment (MCI). Disease and GPS-specific vocabulary were searched singly, and then in combination, identifying 3004 papers. Following deduplication, we screened 1972 papers and retained 17 studies after a full-text review. Only 1/17 studies used a wrist-worn GPS solution, while all others were variously located on the patient. We characterised the studies using a conceptual framework, finding marked heterogeneity in the number and complexity of reported GPS-derived mobility outcomes. Duration was the most frequently reported category of mobility reported (15/17), followed by out of home (14/17), and stop and trajectory (both 10/17). Future research would benefit from greater standardisation and harmonisation of reporting which would enable GPS-derived measures of mobility to be incorporated more robustly into clinical trials.

Introduction Many people with parkinsonism require care as the disease progresses with much provided unpaid by family and friends. Caring for someone can have a negative impact on physical and psychosocial wellbeing. Caregiver burden can impact ability to continue this role, which can precipitate hospitalisation or institutionalisation of the recipient. Methods In this single-site study, primary, informal caregivers, defined as those providing any care or support, were enrolled alongside the person with parkinsonism or individually. Self-reported questionnaires included the 22-item Zarit Burden Interview (ZBI), which can range from 0-88, with higher scores representing greater burden. Linear regression was used to explore the association between recipient characteristics/need and caregiver burden. Results Of 1,032 eligible patients approached, 813 participants indicated whether they had an informal caregiver (708) or not (105). 376 caregivers consented (53.1%), of whom 321 have returned questionnaires, with patient data available for 296. The median age of caregivers was 73.0 (range 27.0- 91.1 years), 237 (73.8%) female. 274 (85.4%) were the spouse/partner of the patient. 215 (67.0%) were the sole caregiver. The median time per week spent caring was 21 hours (interquartile range 7, 41 hours). 18 (5.6%) of caregivers provided 24-hour care daily and 113 (35.2%) had provided support for over 5 years. Median ZBI score was 17, (interquartile range 7-29). The care recipient’s duration of parkinsonism was associated with higher burden score (0.38 increase per year of parkinsonism; 95% CI 0.07, 0.69; p value 0.015), as was the time per week spent caring (0.16 increase for each additional hour; 95% CI 0.11, 0.20; p value <0.0001). Conclusions Many informal caregivers in this study were the sole caregiver and many were themselves older adults. Burden increased with increasing duration of parkinsonism and as time spent caring increased. This highlights the ongoing need to improve support for this group.