Connecting the person with dementia and family : a feasibility study of a telepresence robot

Background Maintenance of communication is important for people with dementia living in long-term care. The purpose of this study was to assess the feasibility of using “Giraff”, a telepresence robot to enhance engagement between family and a person with dementia living in long-term care. Methods A mixed-methods approach involving semi-structured interviews, call records and video observational data was used. Five people with dementia and their family member participated in a discussion via the Giraff robot for a minimum of six times over a six-week period. A feasibility framework was used to assess feasibility and included video analysis of emotional response and engagement. Results Twenty-six calls with an average duration of 23 mins took place. Residents showed a general state of positive emotions across the calls with a high level of engagement and a minimal level of negative emotions. Participants enjoyed the experience and families reported that the Giraff robot offered the opportunity to reduce social isolation. A number of software and hardware challenges were encountered. Conclusions Participants perceived this novel approach to engage families and people with dementia as a feasible option. Participants were observed and also reported to enjoy the experience. The technical challenges identified have been improved in a newer version of the robot. Future research should include a feasibility trial of longer duration, with a larger sample and a cost analysis.

Paradigm shifts : global copyright politics and disability rights

Governments around the world need to take immediate coordinated action to reverse the 'book famine.' Disability rights don't conflict with 'normal exploitation' but copyright owners have been wary about all of the possible solutions to providing greater access. The Marrakesh Treaty promises to level out some of the disparity of access between people in developed and developing nations and remove the need for each jurisdiction to digitise a separate copy of each book. It is one of the only international agreements to mandate positive exceptions and may be the start of a pardigm shift in global copyright politics, made all the more remarkable in the face of heated opposition by global copyright industry representatives. It's not a legal problem, but one of political will. Resistance comes from a conflict with ideology: exceptions should be limited and international law should set only minimum standards.

"The red dress or the blue?" How do staff perceive that they support decision making for people with dementia living in residential aged care facilities?

Respect for a person's right to make choices and participate in decision making is generally seen as central to quality of life and well-being. When a person moves into a residential aged care facility (RACF), however, decision making becomes more complicated, particularly if the person has a diagnosis of dementia. Little is known about how staff in RACFs perceive that they support decision making for people with dementia within their everyday practice, and this article seeks to address this knowledge gap. The article reports on the findings of a qualitative study conducted in the states of Victoria and Queensland, Australia with 80 direct care staff members. Findings revealed that the participants utilized a number of strategies in their intention to support decision making for people with dementia, and had an overall perception that "a little effort goes a long way."

Nutritional challenges for the family caregiver and person with dementia dyad

ABSTRACT Background: The majority of people with dementia live at home until quite late in the disease trajectory, supported by family caregivers who typically take increasing responsibility for providing nutrition. Caregiving is highly stressful and thus both dyad partners are at risk of nutritional issues. Objective: This study evaluated the nutritional status of both dyad members and the associations between these. Design Descriptive, correlational Setting Community Participants 26 dyads of persons with dementia and caregivers Measurements: The nutritional status of each dyad member was evaluated at home using a comprehensive battery of measures including the Mini-Nutritional Assessment, Corrected Arm Muscle Area and a 3-day food diary. Stage of dementia and functional eating capacity was measured for the person with dementia. Caregivers completed a brief burden scale. Results: Of those with dementia (n = 26), a large proportion had nutritional issues (one was malnourished and another 16 were at risk). Six of the caregivers were at risk of malnutrition. In addition, fifteen of the people with dementia did not meet their recommended daily energy requirements. A moderate and significant positive correlation between functional eating skills and nutritional status (MNA score) among participants with dementia was found (r =.523, n = 26, p.006). Conclusion: These findings suggest that a dyadic perspective of nutritional status provides important insights into risk in this vulnerable group. Specifically, monitoring of the functional eating independence skills of the person with dementia is critical, along with assisting caregivers to be aware of their own eating patterns and intake.

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia

Objectives: To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. Method: A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. Results: The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. Discussion: This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs.

A critical evaluation of written discharge advice for people with mild traumatic brain injury : what should we be looking for?

Objective: To formally evaluate the written discharge advice for people with mild traumatic brain injury (mTBI). Methods: Eleven publications met the inclusion criteria: (1) intended for adults; (2) ≤two A4 pages; (3) published in English; (4) freely accessible; and (5) currently used (or suitable for use) in Australian hospital emergency departments or similar settings. Two independent raters evaluated the content and style of each publication against established standards. The readability of the publication, the diagnostic term(s) contained in it and a modified Patient Literature Usefulness Index (mPLUI) were also evaluated. Results: The mean content score was 19.18 ± 8.53 (maximum = 31) and the mean style score was 6.8 ± 1.34 (maximum = 8). The mean Flesch-Kincaid reading ease score was 66.42 ± 4.3. The mean mPLUI score was 65.86 ± 14.97 (maximum = 100). Higher scores on these metrics indicate more desirable properties. Over 80% of the publications used mixed diagnostic terminology. One publication scored optimally on two of the four metrics and highly on the others. Discussion: The content, style, readability and usefulness of written mTBI discharge advice was highly variable. The provision of written information to patients with mTBI is advised, but this variability in materials highlights the need for evaluation before distribution. Areas are identified to guide the improvement of written mTBI discharge advice.

The validity of personal disturbance scale (DSSI/sAD) in people with diabetes mellitus, using longitudinal data

Despite being used since 1976, Delusions-Symptoms-States-Inventory/states of Anxiety and Depression (DSSI/sAD) has not yet been validated for use among people with diabetes. The aim of this study was to examine the validity of the personal disturbance scale (DSSI/sAD) among women with diabetes using Mater-University of Queensland Study of Pregnancy (MUSP) cohort data. The DSSI subscales were compared against DSM-IV disorders, the Mental Component Score of the Short Form 36 (SF-36 MCS), and Center for Epidemiologic Studies Depression Scale (CES-D). Factor analyses, odds ratios, receiver operating characteristic (ROC) analyses and diagnostic efficiency tests were used to report findings. Exploratory factor analysis and fit indices confirmed the hypothesized two-factor model of DSSI/sAD. We found significant variations in the DSSI/sAD domain scores that could be explained by CES-D (DSSI-Anxiety: 55%, DSSI-Depression: 46%) and SF-36 MCS (DSSI-Anxiety: 66%, DSSI-Depression: 56%). The DSSI subscales predicted DSM-IV diagnosed depression and anxiety disorders. The ROC analyses show that although the DSSI symptoms and DSM-IV disorders were measured concurrently the estimates of concordance remained only moderate. The findings demonstrate that the DSSI/sAD items have similar relationships to one another in both the diabetes and non-diabetes data sets which therefore suggest that they have similar interpretations.

Experiments and experiences with dependability for a large autonomous industrial vehicle

This paper describes the experiences gained performing multiple experiments while developing a large autonomous industrial vehicle. Hot Metal Carriers (HMCs) are large forklift-type vehicles used in the light metals industry to move molten or hot metal around a smelter. Autonomous vehicles of this type must be dependable as they are large and potentially hazardous to infrastructure and people. This paper will talk about four aspects of dependability, that of safety, reliability, availability and security and how they have been addressed on our experimental autonomous HMC.

Exploring factors influencing adherence to lifestyle modifications in Chinese people with hypertension: The role of concordance during health communication

This study investigated the factors influencing the conduct of modifying unhealthy lifestyles in Chinese people with high blood pressure, and examined the effect of health communication between health professionals and patients on their health behaviours. The thesis proposes a new theoretical framework to explain and predict individuals' behaviours which can be used to design interventions to improve their health behaviours.

Oral liquid nutritional supplements for people with dementia in residential aged care facilities

AIM: This systematic review investigated the prescription, administration and effectiveness of oral liquid nutritional supplements (OLNS) for people with dementia in residential aged care facilities (RACF). METHODS: A comprehensive search of relevant databases, hand searching and cross-referencing found 15 relevant articles from a total of 2910 possible results. Articles which met the inclusion criteria were critically appraised by two independent reviewers using the relevant Joanna Briggs Institute (JBI) appraisal checklist. Data were extracted using the relevant JBI extraction instruments. No data synthesis was possible due to clinical and methodological heterogeneity. RESULTS: Included studies examined a range of strategies, issues and results related to OLNS for persons with dementia in RACFs; however there appear to be significant gaps in the current body of research, particularly in relation to examinations of effectiveness. CONCLUSIONS: This review was unable to produce a definitive finding regarding effectiveness. OLNS may improve the nutritional state of residents with dementia and help prevent weight loss, and there is some suggestion that it may slow the rate of cognitive decline. However, in order for OLNS to be effective, nursing and care staff need to ensure that sufficient attention is paid to the issues of prescription and administration.

Walking and talking with living texts: Breathing life against static standardisation

Current educational reform, policy and public discourse emphasise standardisation of testing, curricula and professional practice, yet the landscape of literacy practices today is fluid, interactive, multimodal, ever-changing, adaptive and collaborative. How then can English and literacy educators negotiate these conflicting terrains? The nature of today’s literacy practices is reflected in a concept of living texts which refers to experienced events and encounters that offer meaning-making that is fluid, interactive and changing. Literacy learning possibilities with living texts are described and discussed by the authors who independently investigated the place of living texts across two distinctly different learning contexts: a young people’s community arts project and a co-taught multiliteracies project in a high school. In the community arts project, young people created living texts as guided walks of urban spaces that adapt and change to varying audiences. In the multiliteracies project, two parents and a teacher created interactive spaces through co-teaching and cogenerative dialoguing. These spaces generate living texts that yield a purposefully connected curriculum rich in community-relevant and culturally significant texts. These two studies are shared with a view of bringing living texts into literacy education to loosen rigidity in standardisation.

Process quality indicators targeting cognitive impairment to support quality of care for older people with cognitive impairment in emergency departments

Objectives The objective of this study was to develop process quality indicators (PQIs) to support the improvement of care services for older people with cognitive impairment in emergency departments (ED). Methods A structured research approach was taken for the development of PQIs for the care of older people with cognitive impairment in EDs, including combining available evidence with expert opinion (phase 1), a field study (phase 2), and formal voting (phase 3). A systematic review of the literature identified ED processes targeting the specific care needs of older people with cognitive impairment. Existing relevant PQIs were also included. By integrating the scientific evidence and clinical expertise, new PQIs were drafted and, along with the existing PQIs, extensively discussed by an advisory panel. These indicators were field tested in eight hospitals using a cohort of older persons aged 70 years and older. After analysis of the field study data (indicator prevalence, variability across sites), in a second meeting, the advisory panel further defined the PQIs. The advisory panel formally voted for selection of those PQIs that were most appropriate for care evaluation. Results In addition to seven previously published PQIs relevant to the care of older persons, 15 new indicators were created. These 22 PQIs were then field tested. PQIs designed specifically for the older ED population with cognitive impairment were only scored for patients with identified cognitive impairment. Following formal voting, a total of 11 PQIs were included in the set. These PQIs targeted cognitive screening, delirium screening, delirium risk assessment, evaluation of acute change in mental status, delirium etiology, proxy notification, collateral history, involvement of a nominated support person, pain assessment, postdischarge follow-up, and ED length of stay. Conclusions This article presents a set of PQIs for the evaluation of the care for older people with cognitive impairment in EDs. The variation in indicator triggering across different ED sites suggests that there are opportunities for quality improvement in care for this vulnerable group. Applied PQIs will identify an emergency services' implementation of care strategies for cognitively impaired older ED patients. Awareness of the PQI triggers at an ED level enables implementation of targeted interventions to improve any suboptimal processes of care. Further validation and utility of the indicators in a wider population is now indicated.

Structural quality indicators to support quality of care for older people with cognitive impairment in emergency departments

Objectives The purpose of this study was to identify the structural quality of care domains and to establish a set of structural quality indicators (SQIs) for the assessment of care of older people with cognitive impairment in emergency departments (EDs). Methods A structured approach to SQI development was undertaken including: 1) a comprehensive search of peer-reviewed and gray literature focusing on identification of evidence-based interventions targeting structure of care of older patients with cognitive impairment and existing SQIs; 2) a consultative process engaging experts in the care of older people and epidemiologic methods (i.e., advisory panel) leading to development of a draft set of SQIs; 3) field testing of drafted SQIs in eight EDs, leading to refinement of the SQI set, and; 4) an independent voting process among the panelists for SQI inclusion in a final set, using preestablished inclusion and exclusion criteria. Results At the conclusion of the process, five SQIs targeting the management of older ED patients with cognitive impairment were developed: 1) the ED has a policy outlining the management of older people with cognitive impairment during the ED episode of care; 2) the ED has a policy outlining issues relevant to carers of older people with cognitive impairment, encompassing the need to include the (family) carer in the ED episode of care; 3) the ED has a policy outlining the assessment and management of behavioral symptoms, with specific reference to older people with cognitive impairment; 4) the ED has a policy outlining delirium prevention strategies, including the assessment of patients' delirium risk factors, and; 5) the ED has a policy outlining pain assessment and management for older people with cognitive impairment. Conclusions This article presents a set of SQIs for the evaluation of performance in caring for older people with cognitive impairment in EDs.

A systematic review of interventions to enhance medication adherence in children and adolescents with chronic illness

Introduction Poor medication adherence is common in children and adolescents with chronic illness, but there is uncertainty about the best way to enhance medication adherence in this group. The authors conducted a systematic review of controlled trials examining interventions that aim to improve medication adherence. Method A comprehensive literature search was undertaken to locate controlled trials that described specific interventions aiming to improve adherence to long-term medication, where participants were aged 18 years and under, medication adherence was reported as an outcome measure, and which could be implemented by individual health practitioners. Studies were reviewed for quality and outcome. Results 17 studies met inclusion criteria: seven studies examined educational strategies, seven studies examined behavioural interventions and three studies examined educational intervention combined with other forms of psychological therapies. Only two of seven studies reported a clear benefit for education on medication adherence, whereas four of seven trials indicated a benefit of behavioural approaches on medication adherence. One trial reported that combining education with behavioural management may be more effective than education alone. Studies which combined education with other non-medication specific psychological interventions failed to demonstrate a beneficial effect on medication adherence. Only two studies examined adherence-promoting interventions in young people with established adherence problems. Conclusion These findings suggest that education interventions alone are insufficient to promote adherence in children and adolescents, and that incorporating a behavioural component to adherence interventions may increase potential efficacy. Future research should examine interventions in high-risk groups.