Collecting self-report data with people with dementia: Benefits, challenges, and best-practice

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents. Many trials, therefore, utilise only proxy completed outcome measures. This is despite evidence that individuals with mild through to advanced dementia can reliably report on outcomes, if appropriate measures and approaches to data collection are used. However, little has been written about best practice in data collection with this group. This study aimed to explore the experiences of researchers working on dementia trials in care homes and identify best practices to assist design of future trials. Thirty-three researchers completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection with people with dementia. We identified five main benefits; [1] improving the delivery of person-centred care, [2] hearing the voice of people with dementia, [3] residents spending time with researchers, [4] improving researcher understanding, and [5] having an evidence base from multiple sources. We also identified five main challenges; [1] effective communication, [2] fluctuating capacity, [3] causing distress to residents, [4] time pressures, and [5] staff availability. Researchers also made suggestions about how these can be overcome. We recommend that the challenges identified could be overcome using appropriate methods for collecting data. Thorough training for researchers on data collection with people with dementia was identified as important for ensuring successful data collection

Functional imaging of cognition in an old-old population: A case for portable functional near-infrared spectroscopy

In this study, functional near-infrared spectroscopy (fNIRS) was used to record brain activa- tion during cognitive testing in older individuals (88±6yo; N = 19) living in residential care communities. This population, which is often associated with loss of personal independence due to physical or cognitive decline associated with aging, is also often under-represented in neuroscience research because of a limited means to participate in studies which often take place in large urban or university centers. In this study, we demonstrate the feasibility and initial results using a portable 8-source by 4-detector fNIRS system to measure brain activity from participants within residential care community centers. Using fNIRS, brain sig- nals were recorded during a series of computerized cognitive tests, including a Symbol Digit Coding test (SDC), Stroop Test (ST), and Shifting Attention Test (SAT). The SDC and SAT elicited greater activity in the left middle frontal region of interest. Three components of the ST produced increases in the right middle frontal and superior frontal, and left superior frontal regions. An association between advanced age and increased activation in the right middle frontal region was observed during the incongruent ST. Although none of the partici- pants had clinical dementia based on the short portable mental status questionnaire, the group performance was slightly below age-normed values on these cognitive tests. These results demonstrate the capability for obtaining functional neuroimaging measures in resi- dential settings, which ultimately may aid in prognosis and care related to dementia in older adults

Performance reporting for consumers: issues for the Australian private hospital sector

A group of consumers of private hospital services and their carers collaborated with staff of a Melbourne private hospital and with industry representatives to develop a consumer-driven performance report on cardiac services. During the development process participating consumers identified situational and structural barriers to their right to be informed of costs, to choice and to quality care. Their growing appreciation of these barriers led them to a different perspective on performance reporting, which resulted in their redirecting the project. The consumer participants no longer wanted a performance report that provided comparative quantitative data. Instead they designed a report that outlined the structures, systems and processes the hospital had in place to address the quality and safety of services provided. In addition, consumer participants developed a decision support tool for consumers to use in navigating the private health care sector. The journey of these consumers in creating a consumer driven performance report for a private hospital service may assist those responsible for governance of Australia's health system in choosing appropriate strategies and mechanisms to enhance private hospital accountability. The situational and institutional industry barriers to choice, information and quality identified by these consumers need to be addressed before public performance reporting for private hospitals is introduced in Australia

Medication Management Services Offered in U.S. Residential Care Communities

Using data from the 2010 National Survey of Residential Care Facilities, this study estimated the percentage of U.S. residential care communities (RCCs) offering selected medication management services (MMS) and examined differences in prevalence by community characteristics. The most common services were central storage for medications and cueing residents, while the least common were administering injections and intravenous medications. Medication reminders, helping residents take medications, and administering drops/topical ointments and injections varied by RCC characteristics. Characteristics most commonly associated with these differences are size, purposefully built status, nursing hours, and availability of a physician or pharmacist to review medication appropriateness. Understanding these MMS variations may benefit clinicians’ efforts to achieve medication adherence among RCC patients, and inform policy makers, RCC providers, and consumers