The ability to walk under normal and cognitive dual task conditions is essential for safe mobility in older adults. However, while assessments of gait provide important health information, they have been limited to laboratory settings. We aimed to create an easy-to-use smartphone App enabling remote dual task walking assessments, and to demonstrate its reliability and validity in relatively healthy younger and older adults. The iPhone-based App utilized multi-media instructions and the phone's internal motion sensors to record movements during normal walking and walking with simultaneous serial-subtractions, with the phone placed in the user's pants pocket. Fourteen younger and 12 older adults completed two lab visits, during which data were acquired by the App and GAITRite mat over multiple normal and dual task walking trials. Participants also used the App to complete assessments in their homes on three separate days. Outcomes included average stride time and the dual-task cost to stride time. Across all detected strides in laboratory trials, derived outcome measures from the App were highly correlated with those derived from the GAITRite mat (Stride Time: p<0.001, r2 =0.99. Dual-task cost: p<0.001, r2 =0.98). These correlations were unaffected by age group, walking condition, and pocket tightness. Moreover, across trials, gait metrics demonstrated excellent test-retest reliability, both within and between laboratory visits and home-based assessments (ICC: 0.79-0.90). These results suggest that dual task walking assessments are valid and can be reliably administered in remote settings in relatively healthy younger and older adults.

SummaryBackgroundLithium has neuroprotective effects in cell and animal models of amyotrophic lateral sclerosis (ALS), and a small pilot study in patients with ALS showed a significant effect of lithium on survival. We aimed to assess whether lithium improves survival in patients with ALS.MethodsThe lithium carbonate in amyotrophic lateral sclerosis (LiCALS) trial is a randomised, double-blind, placebo-controlled trial of oral lithium taken daily for 18 months in patients with ALS. Patients aged at least 18 years who had ALS according to the revised El Escorial criteria, had disease duration between 6 and 36 months, and were taking riluzole were recruited from ten centres in the UK. Patients were randomly assigned (1:1) to receive either lithium or matched placebo tablets. Randomisation was via an online system done at the level of the individual by block randomisation with randomly varying block sizes, stratified by study centre and site of disease onset (limb or bulbar). All patients and assessing study personnel were masked to treatment assignment. The primary endpoint was the rate of survival at 18 months and was analysed by intention to treat. This study is registered with Eudract, number 2008-006891-31.FindingsBetween May 26, 2009, and Nov 10, 2011, 243 patients were screened, 214 of whom were randomly assigned to receive lithium (107 patients) or placebo (107 patients). Two patients discontinued treatment and one died before the target therapeutic lithium concentration could be achieved. 63 (59%) of 107 patients in the placebo group and 54 (50%) of 107 patients in the lithium group were alive at 18 months. The survival functions did not differ significantly between groups (Mantel-Cox log-rank χ2 on 1 df=1·64; p=0·20). After adjusting for study centre and site of onset using logistic regression, the relative odds of survival at 18 months (lithium vs placebo) was 0·71 (95% CI 0·40–1·24). 56 patients in the placebo group and 61 in the lithium group had at least one serious adverse event.InterpretationWe found no evidence of benefit of lithium on survival in patients with ALS, but nor were there safety concerns, which had been identified in previous studies with less conventional designs. This finding emphasises the importance of pursuing adequately powered trials with clear endpoints when testing new treatments.FundingThe Motor Neurone Disease Association of Great Britain and Northern Ireland.

Background Funding bodies are placing increased emphasis on patient and public involvement in research, but the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB) are unknown. Method Investigators conducted telephone interviews with individuals living with DLB and caregivers. Participants were recruited from a Lewy Body Dementia Association Research Center of Excellence. Interviews employed a semi-structured questionnaire querying research needs in different categories and then asking participants to select their top priorities. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes. Results Twenty individuals with DLB and 25 caregivers participated. Seventeen from each group participated as part of a patient-caregiver dyad. Twenty-three of the caregivers were spouses, two were daughters. Individuals with DLB and caregivers identified research needs relating to focusing on awareness, determining the cause of DLB, improving diagnosis, and investigating what to expect/disease stages. Participants also highlighted DLB symptoms needing additional research, therapies to prevent, cure, or slow the progression of DLB, and research targeting daily function and quality of life, caregiving, and improving education. Conclusions These findings support the research priorities defined in the National Institutes of Health dementia care summits in addition to ADRD priority-setting summits. Research is needed

Background: Patient-centered care requires understanding patient preferences and needs, but research on the clinical care preferences of individuals living with dementia and caregivers is sparse, particularly in dementia with Lewy bodies (DLB). Methods: Investigators conducted telephone interviews with individuals living with DLB and caregivers from a Lewy body dementia specialty center. Interviews employed a semistructured questionnaire querying helpful aspects of care and unmet needs. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes. Results: Twenty individuals with DLB and 25 caregivers participated. Twenty-three of the caregivers were spouses, 2 were daughters. Aspects of clinical care valued by individuals with DLB and caregivers included clinician time, diagnosis, education, symptom management, communication, and caring staff. Unmet needs or challenges included patient/caregiver education, education of nonspecialist clinicians and community care providers, scheduling difficulties, caregiver support, financial concerns, assistance with advance care planning and finding local resources, and effective treatments for DLB symptoms. Conclusion and Relevance: Improving care for individuals with DLB and their families will require a multipronged strategy including education for nonspecialist care providers, increasing specialty care access, improved clinical care services, research to support disease prognosis and treatment decisions, and local and national strategies for enhanced caregiver support.

Background: The National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act, convened a 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers. This review article addresses research participation by persons living with dementia (PLWD) and their care partners in two different ways: as research participants with input on outcomes studied and as engaged research partners. Results: This article summarizes each of the topics presented at this Summit session, followed by reflection from the session panelists. Lee Jennings examined collection of outcomes directly from PLWD and the potential for individualized outcomes to enhance measurement in intervention trials. Ron Petersen discussed the impact of nomenclature on research and clinical care, and how and why investigators should be mindful of the connection between dementia nomenclature and the conduct of dementia research. Tabassum Majid examined strategies for engagement in research, including specific examples of involving PLWD and their care partners (including staff in assisted living and skilled nursing facilities), and the potential for this research engagement to improve our understanding of interventions in dementia. Conclusions: Research participation by PLWD and their care partners is evolving. This review summarizes three areas of opportunity and steps for researchers to work with PLWD and their care partners to design and conduct research that enhances knowledge based on what we learn from PLWD and their care partners, and creates knowledge with them.