Leveraging everyday technology for people living with dementia: a case study

– The purpose of this paper is to present the self-described “journey” of a person with dementia (Brian; author 3) in his re-learning of old technologies and learning of new ones and the impact this had on his life. Design/methodology/approach – This is a single case study detailing the participant's experiences collaborating with a researcher to co-create methods of facilitating this learning process, which he documented in the form of an online blog and diary entries. These were analysed using NVivo to reveal the key themes. Findings – Brian was able to relearn previously used technologies and learn two new ones. This lead to an overarching theme of positive outlook on life supported by person-centredness, identity and technology, which challenged negative perceptions about dementia. Research limitations/implications – The paper provides an example of how learning and technology improved the life of one person with dementia. By sharing the approach the authors hope to encourage others to embrace the challenge of designing and developing innovative solutions for people with a dementia diagnosis by leveraging both current mainstream technology and creating novel bespoke interventions for dementia. Originality/value – The personal perspective of a person with dementia and his experiences of (re-) learning provide a unique insight into the impact of technology on his life.

The validation of a computer-based food record for older adults: the Novel Assessment of Nutrition and Ageing (NANA) method

Dietary assessment in older adults can be challenging. The Novel Assessment of Nutrition and Ageing (NANA) method is a touch-screen computer-based food record that enables older adults to record their dietary intakes. The objective of the present study was to assess the relative validity of the NANA method for dietary assessment in older adults. For this purpose, three studies were conducted in which a total of ninety-four older adults (aged 65–89 years) used the NANA method of dietary assessment. On a separate occasion, participants completed a 4 d estimated food diary. Blood and 24 h urine samples were also collected from seventy-six of the volunteers for the analysis of biomarkers of nutrient intake. The results from all the three studies were combined, and nutrient intake data collected using the NANA method were compared against the 4 d estimated food diary and biomarkers of nutrient intake. Bland–Altman analysis showed a reasonable agreement between the dietary assessment methods for energy and macronutrient intake; however, there were small, but significant, differences for energy and protein intake, reflecting the tendency for the NANA method to record marginally lower energy intakes. Significant positive correlations were observed between urinary urea and dietary protein intake using both the NANA and the 4 d estimated food diary methods, and between plasma ascorbic acid and dietary vitamin C intake using the NANA method. The results demonstrate the feasibility of computer-based dietary assessment in older adults, and suggest that the NANA method is comparable to the 4 d estimated food diary, and could be used as an alternative to the food diary for the short-term assessment of an individual’s dietary intake.

Validation of the NANA (Novel Assessment of Nutrition and Ageing) touch screen system for use at home by older adults

Prospective measurement of nutrition, cognition, and physical activity in later life would facilitate early detection of detrimental change and early intervention but is hard to achieve in community settings. Technology can simplify the task and facilitate daily data collection. The Novel Assessment of Nutrition and Ageing (NANA) toolkit was developed to provide a holistic picture of an individual's function including diet, cognition and activity levels. This study aimed to validate the NANA toolkit for data collection in the community. Forty participants aged 65 years and over trialled the NANA toolkit in their homes for three 7-day periods at four-week intervals. Data collected using the NANA toolkit were compared with standard measures of diet (four-day food diary), cognitive ability (processing speed) and physical activity (self-report). Bland–Altman analysis of dietary intake (energy, carbohydrates, protein fat) found a good relationship with the food diary and cognitive processing speed and physical activity (hours) were significantly correlated with their standard counterparts. The NANA toolkit enables daily reporting of data that would otherwise be collected sporadically while reducing demands on participants; older adults can complete the daily reporting at home without a researcher being present; and it enables prospective investigation of several domains at once

Object-love at the Science Museum: cultural geographies of museum storerooms

The field of museum geography is taking on new significance as geographers and museum-studies scholars make sense of the spatial relations between the people, things, practices and buildings that make and remake museums. In order to strengthen this spatial interest in museums, this paper makes important connections between recent work in cultural geography and museum studies on love, materiality and the museum effect. This paper marks a departure from the preoccupation with the public spaces of museums to go behind the scenes of the Science Museum in London to explore its rarely visited, but nonetheless lively, small-to-medium-sized object storerooms at Blythe House. Incorporating field diary entries and interview extracts from two research projects based upon the museum storerooms at Blythe House, this paper brings to life the social interactions that take place between museum curators and conservators and the objects they care for. This focus on object-love enables scholars to consider anew what museums are and what they are for, the life of the museum object in the storeroom, and the emotional practices of professional curatorship and conservation. This journey into the storeroom at Blythe House makes explicit how object-love shapes museum space.

Constructing risk across timescales and trajectories: Gay men's stories of sexual encounters

This paper explores the way risk is constructed in the stories gay men tell of their sexual experiences. It focuses on how tellers use such stories to portray themselves both as rational actors and as legitimate members of their social groups by reconstructing the ‘orderliness’ of sexual encounters. An analysis of a corpus of stories derived from a diary study of gay male sexual behaviour in Hong Kong using current theories of discourse analysis reveals how narrators organize their experiences along two primary vectors of engagement: a sequential vector along which the trajectory of the sexual encounter is presented as a chain of occurrences, each occurrence contingent upon previous ones and warranting subsequent ones, and a hierarchical vector along which processes perceived on longer timescales are portrayed as exerting pressure on the ways processes on shorter timescales unfold. Examining how men portray these vectors in their accounts of risk behaviour can help us better understand both the situatedness of risk behaviour and the ways it is linked to larger social practices, identity projects and community histories

A web based decision support system for status assessment in advanced parkinson

The purpose of this work is to develop a web based decision support system, based onfuzzy logic, to assess the motor state of Parkinson patients on their performance in onscreenmotor tests in a test battery on a hand computer. A set of well defined rules, basedon an expert’s knowledge, were made to diagnose the current state of the patient. At theend of a period, an overall score is calculated which represents the overall state of thepatient during the period. Acceptability of the rules is based on the absolute differencebetween patient’s own assessment of his condition and the diagnosed state. Anyinconsistency can be tracked by highlighted as an alert in the system. Graphicalpresentation of data aims at enhanced analysis of patient’s state and performancemonitoring by the clinic staff. In general, the system is beneficial for the clinic staff,patients, project managers and researchers.

”När man själv rasar,var finns nåden?” : Analys av Stella Björk i Johanna Nilssons Rebell med frusna fötter i förhållande till den typiska chick lit-karaktären.

Denna uppsats syfte är en tematisk jämförelse mellan Johanna Nilssons Rebell med frusna fötter och Helen Fieldings Bridget Jones’s Diary beträffande huvudkaraktärerna för att komma fram till hur felplacerad Stella Björk skulle vara i en chick lit-berättelse. Jag använder Bridget som representativ för en typisk huvudkaraktär i chick lit då det är vid publiceringen av Bridget Jones’s Diary forskarna anser att chick lit föddes. Vid en tematisk jämförelse mellan Stella och Bridget där miljö- och karaktärsbeskrivning och även karaktärsutveckling avhandlas blir resultatet att dessa två fiktiva kvinnor är lika på många sätt men det finns skillnader. Karaktärernas komplexitet är en stor skillnad, då Stella är en mer komplex karaktär än Bridget. De funderar mycket båda två men över olika ämnen. En sista stor skillnad är att Bridget tänker på hur hennes egen kropp ser ut medan Stella funderar mer över hur hemska andra människors kroppsliga ideal är.

Dagbok på IVA-patienters upplevelser : En litteraturöversikt

Bakgrund: Många patienter uttrycker ett behov av att fylla den minneslucka som finns sedan intensivvårdstiden både vad gäller tid och innehåll. Detta var anledningen till att vårdpersonal på intensivvårdsavdelningar började använda dagbok till kritiskt sjuka patienter. Syfte: Att belysa patienters upplevelser av att ta del av sin dagbok från vårdtiden på intensivvårdsavdelning. Metod: Litteraturöversikt. Artikelsökning utfördes i databaserna CINAHL och PubMed. I resultatet ingick tio vetenskapligt granskade artiklar, sju kvalitativa och tre kvantitativa. Resultat: Patienterna upplevde det som värdefullt att läsa dagboken och att titta på fotografierna eftersom det gav dem en uppfattning om vad som hade hänt och hur sjuka de hade varit. Genom dagboken fick patienterna en större sjukdomsinsikt och en mer realistisk målsättning för tillfrisknandet. Det var krävande och det väcktes starka känslor och reaktioner hos patienterna när de läste i dagboken. Dagboken fungerade som ett stöd för lång tid framöver. Patienterna uppskattade detaljerad och kontinuerligt skriven information och att dagboken var skriven med en personlig och mänsklig ton samt med ett språk som var lätt att förstå. Fotografier upplevdes av de flesta patienterna som positivt och blev ett bevis på vad de gått igenom. Det uppföljande återbesöket på IVA mottagning beskrevs av patienterna som betydelsefullt för att öka förståelsen av innehållet i dagboken och av vad som hänt under vårdtiden på IVA. Slutsats/Konklusion: Tidigare kritiskt sjuka patienter upplever, genom att ta del av dagbok från vårdtiden på intensivvårdsavdelning, större förståelse och bearbetning av sin sjukdomsperiod, vilket skulle kunna medföra förbättrad hälsa och ökad livskvalitet.

Skatte- och sysselsättningseffekter till följd av ett större idrottsevenemang : Förväntade effekter på regionens näringsliv till följd av ett kommande Skid VM i Falun 2015

Syfte: Att mäta turisternas konsumtion i samband med ett större idrottsevenemang samt att beräkna skatte- och sysselsättningseffekter till följd av denna under Skid-VM i Falun år 2015. Metod: Turisternas konsumtion har i denna studie mätts genom att ett urval av besökarna på Skidspelen 2013 fört dagbok över sin konsumtion. Vi har även använt sekundärdata i form av en konsumtionsundersökning som är genomförd under Svenska Skidspelen 2012 samt uppgifter från en rapport författad av HUI Research AB. Slutsats: Tre olika scenarion har använts för att beräkna skatte och sysselsättningseffekter. Ett lågt scenario där vi räknar med 140 000 sålda endagsbiljetter vilket är samma antal som Skid- VM i Falun 1993. Ett medelhögt där vi räknar med 200 000 sålda endagsbiljetter vilket är vad arrangören förväntar sig samt slutligen ett högt scenario med 270 000 sålda endagsbiljetter vilket är vad som såldes under Skid-VM i Oslo 2011. Beroende på valt scenario kommer turisternas totala konsumtion i regionen att uppgå till mellan 147 och 197 miljoner kronor. Denna omsättningsökning uppskattas leda till att mellan 85 och 111 arbetstillfällen skapas i regionen på kort sikt. Summan av samtliga skatter och avgifter uppgår till mellan 27 och 36 miljoner kronor.

The most severe parkinsonian patients are most improved with duodenal levodopa infusion

Objectives:To find variables correlated to improvement with intraduodenal levodopa/carbidopa infusion (Duodopa) in order to identify potential candidates for this treatment. Two clinical studies comparing Duodopa with oral treatments in patients with advanced Parkinson’s disease have shown significant improvement in percent on-time on a global treatment response scale (TRS) based on hourly and half-hourly clinical ratings and in median UPDRS scores.Methods:Data from study 1 comparing infusion with Sinemet CR (12 patients, Nyholm et al, Clin Neuropharmacol 2003; 26(3): 156-163) and study 2 comparing infusion with individually optimised conventional combination therapies (18 patients, Nyholm et al, Neurology, in press) were used. Measures of severity were defined as total UPDRS score and scores for sections II and III, percent functional on-time and mean squared error of ratings on the TRS and as mean of diary questions about mobility and satisfaction (only study 2). Absolute improvement was defined as difference in severity, and relative improvement was defined as percent absolute improvement/severity on oral treatment. Pearson correlation coefficients between measures of improvement and other variables were calculated.Results:Correlations (r2>0.28, p<0.05) between severity during oral treatment and absolute improvement on infusion were found for: Total UPDRS, UPDRS III and TRS ratings (studies 1 and 2) and for diary question 1 (mobility) and UPDRS II (study 2). Correlation to relative improvement was found for total UPDRS (study 2, r2=0.47). Figure 1 illustrates absolute improvement in total UPDRS vs. total UPDRS during oral treatment (study 2).Conclusion:Correlating different measures of severity and improvement revealed that patients with more severe symptoms were most improved and that the relation between severity and improvement was linear within the studied groups. The result, which was reproducible between two clinical studies, could be useful when deciding candidates for the treatment.

Pedal : identification of models for duodenal administration of levodopa

Backgound and aims: The main purpose of the PEDAL study is to identify and estimate sample individual pharmacokinetic- pharmacodynamic (PK/PD) models for duodenal infusion of levodopa/carbidopa (Duodopa®) that can be used for in numero simulation of treatment strategies. Other objectives are to study the absorption of Duodopa® and to form a basis for power calculation for a future larger study. PK/PD based on oral levodopa is problematic because of irregular gastric emptying. Preliminary work with data from [Gundert-Remy U et al. Eur J Clin Pharmacol 1983;25:69-72] suggested that levodopa infusion pharmacokinetics can be described by a two-compartment model. Background research led to a hypothesis for an effect model incorporating concentration-unrelated fluctuations, more complex than standard E-max models. Methods: PEDAL involved a few patients already on Duodopa®. A bolus dose (normal morning dose plus 50%) was given after a washout during night. Data collection continued until the clinical effect was back at baseline. The procedure was repeated on two non-consecutive days per patient. The following data were collected in 5 to 15 minutes intervals: i) Accelerometer data. ii) Three e-diary questions about ability to walk, feelings of “off” and “dyskinesia”. iii) Clinical assessment of motor function by a physician. iv) Plasma concentrations of levodopa, carbidopa and the metabolite 3-O-methyldopa. The main effect variable will be the clinical assessment. Results: At date of abstract submission, lab analyses were currently being performed. Modelling results, simulation experiments and conclusions will be presented in our poster.

A home environment test battery for status assessment in patients with motor fluctuations

Background and aims Evaluating status in patients with motor fluctuations is complex and occasional observations/measurements do not give an adequate picture as to the time spent in different states. We developed a test battery to assess advanced Parkinson patients' status consisting of diary assessments and motor tests. This battery was constructed and implemented on a handheld computer with built-in mobile communication. In fluctuating patients, it should typically be used several times daily in the home environment, over periods of about one week. The aim of this battery is to provide status information in order to evaluate treatment effects in clinical practice and research, follow up treatments and disease progression and predict outcome to optimize treatment strategy. Methods Selection of diary questions was based on a previous study with Duodopa® (DIREQT). Tapping tests (with and without visual cueing) and a spiral drawing test were added. Rapid prototyping was used in development of the user interface. An evaluation with two pilot patients was performed before and after receiving new treatments for advanced disease (one received Duodopa® and one received DBS). Speed and proportion missed taps were calculated for the tapping tests and entropy of the radial drawing velocity was calculated for the spiral tests. Test variables were evaluated using non-parametric statistics. Results Post-treatment improvement was detected in both patients in many of the test variables. Conclusions Although validation work remains, preliminary results are promising and the test battery is currently being evaluated in a long-term health economics study with Duodopa® (DAPHNE).

Analysis of tapping test results in a test battery for advanced PD patients

Objective: To compare results from various tapping tests with diary responses in advanced PD. Background: A home environment test battery for assessing patient state in advanced PD, consisting of diary assessments and motor tests was constructed for a hand computer with touch screen and mobile communication. The diary questions: 1. walking, 2. time in off , on and dyskinetic states, 3. off at worst, 4. dyskinetic at worst, 5. cramps, and 6. satisfied with function, relate to the recent past. Question 7, self-assessment, allows seven steps from -3 ( very off ) to +3 ( very dyskinetic ) and relate to right now. Tapping tests outline: 8. Alternately tapping two fields (un-cued) with right hand 9. Same as 8 but using left hand 10. Tapping an active field (out of two) following a system-generated rhythm (increasing speed) with the dominant hand 11. Tapping an active field (out of four) that randomly changes location when tapped using the dominant hand Methods: 65 patients (currently on Duodopa, or candidates for this treatment) entered diary responses and performed tapping tests four times per day during one to six periods of seven days length. In total there were 224 test periods and 6039 test occasions. Speed for tapping test 10 was discardedand tests 8 and 9 were combined by taking means. Descriptive statistics were used to present the variation of the test variables in relation to self assessment (question 7). Pearson correlation coefficients between speed and accuracy (percent correct) in tapping tests and diary responses were calculated. Results: Mean compliance (percentage completed test occasions per test period) was 83% and the median was 93%. There were large differences in both mean tapping speed and accuracy between the different self-assessed states. Correlations between diary responses and tapping results were small (-0.2 to 0.3, negative values for off-time and dyskinetic-time that had opposite scale directions). Correlations between tapping results were all positive (0.1 to 0.6). Conclusions: The diary responses and tapping results provided different information. The low correlations can partly be explained by the fact that questions related to the past and by random variability, which could be reduced by taking means over test periods. Both tapping speed and accuracy reflect the motor function of the patient to a large extent.

Spiral drawing during self-rated dyskinesia is more impaired than during self-rated off

Background: A mobile device test battery, consisting of a patient diary collection section with disease-related questions and a fine motor test section (including spiral drawing tasks), was used by 65 patients with advanced Parkinson's disease (PD)(treated with intraduodenal levodopa/carbidopa gel infusion, Duodopa®, or candidates for this treatment) on 10439 test occasions in their home environments. On each occasion, patients traced three pre-drawn Archimedes spirals using an ergonomic stylus and self-assessed their motor function on a global Treatment Response Scale (TRS) ranging from -3 = very 'off' to 0 = 'on' to +3 = very dyskinetic. The spirals were processed by a computer-based method that generates a "spiral score" representing the PD-related drawing impairment. The scale for the score was based on a modified Bain & Findley rating scale in the range from 0 = no impairment to 5 = moderate impairment to 10 = extremely severe impairment. Objective: To analyze the test battery data for the purpose to find differences in spiral drawing performance of PD patients in relation to their self-assessments of motor function. Methods: Three motor states were used in the analysis; OFF state (including moderate and very 'off'), ON state ('on') and a dyskinetic (DYS) state (moderate and very dyskinetic). In order to avoid the problem of multiple test occasions per patient, 200 random samples of single test occasions per patient were drawn. One-way analysis of variance, ANOVA, test followed by Tukey multiple comparisons test was used to test if mean values of spiral test parameters, i.e. the spiral score and drawing completion times (in seconds), were different among the three motor states. Statistical significance was set at p<0.05. To investigate changes in the spiral score over the time-of-day test sessions for the three motor states, plots of statistical summaries were inspected. Results: The mean spiral score differed significantly across the three self-assessed motor states (p<0.001, ANOVA test). Tukey post-hoc comparisons indicate that the mean spiral score (mean ± SD; [95% CI for mean]) in DYS state (5.2 ± 1.8; [5.12, 5.28]) was higher than the mean spiral score in OFF (4.3 ± 1.7; [4.22, 4.37]) and ON (4.2 ± 1.7; [4.17, 4.29]) states. The mean spiral score was also significantly different among individual TRS values of slightly 'off' (4.02 ± 1.63), 'on' (4.07 ± 1.65) and slightly dyskinetic (4.6 ± 1.71), (p<0.001). There were no differences in drawing completion times among the three motor states (p=0.509). In the OFF and ON states, patients drew slightly more impaired spirals in the afternoon whereas in the DYS state the spiral drawing performance was more impaired in the morning. Conclusion: It was found that when patients considered themselves as being dyskinetic spiral drawing was more impaired (nearly one unit change in a 0-10 scale) compared to when they considered themselves as being 'off' and 'on'. The spiral drawing at patients that self-assessed their motor state as dyskinetic was slightly more impaired in the morning hours, between 8 and 12 o'clock, a situation possibly caused by the morning dose effect.

Den virtuella kroppen : Presentationer av jaget i svenska dagboksbloggar

The virtual body: the self and the body in Swedish diary blogs There are no bodies on the internet and yet, there are bodies on the internet. This article deals with representations of the ‘virtually physical’ in personal weblogs. To examine the data drawn from 14 weblogs, a qualitative content analysis is made. The results show that the virtual body is widely present in these particular internet settings and that it is most commonly described as female. Moreover, the virtual body is to a large extent a fragmented body that one either takes control over or is controlled by.