Validation of the Algase Wandering Scale (Version 2) in a cross cultural sample

This study examined the psychometric properties of an expanded version of the Algase Wandering Scale (Version 2) (AWS-V2) in a cross-cultural sample. A cross-sectional survey design was used. Study subjects were 172 English-speaking persons with dementia (PWD) from long-term care facilities in the USA, Canada, and Australia. Two or more facility staff rated each subject on the AWS-V2. Demographic and cognitive data (MMSE) were also obtained. Staff provided information on their own knowledge of the subject and of dementia. Separate factor analyses on data from two samples of raters each explained greater than 66% of the variance in AWS-V2 scores and validated four (persistent walking, navigational deficit, eloping behavior, and shadowing) of five factors in the original scale. Items added to create the AWS-V2 strengthened the shadowing subscale, failed to improve the routinized walking subscale, and added a factor, attention shifting as compared to the original AWS. Evidence for validity was found in significant correlations and ANOVAs between the AWS-V2 and most subscales with a single item indicator of wandering and with the MMSE. Evidence of reliability was shown by internal consistency of the AWS-V2 (0.87, 0.88) and its subscales (range 0.88 to 0.66), with Kappa for individual items (17 of 27 greater than 0.4), and ANOVAs comparing ratings across rater groups (nurses, nurse aids, and other staff). Analyses support validity and reliability of the AWS-V2 overall and for persistent walking, spatial disorientation, and eloping behavior subscales. The AWS-V2 and its subscales are an appropriate way to measure wandering as conceptualized within the Need-driven Dementia-compromised Behavior Model in studies of English-speaking subjects. Suggestions for further strengthening the scale and for extending its use to clinical applications are described.

Initial psychometric evaluation of the Wayfinding Effectiveness Scale

This study evaluates three versions of the Wayfinding Effectiveness Scale (WES), developed to differentiate problems of wayfinding and wandering behavior of community-residing elders with dementia (EWD), in 266 dyads (EWD and caregiver) recruited from Alzheimer's Association chapters. Factor analyses yield a five-factor solution (explained variance = 62.6%): complex wayfinding goals, analytic strategies, global strategies, simple wayfinding goals, and being stimulus bound. Overall, internal consistencies are high: WES (.94-.95), and subscales are stable across all versions. Testretest reliability is acceptable for the overall WES and two subscales (complex and simple wayfinding goals) for the care recipient current behavior version. Construct validity is supported by the pattern of correlations among subscales and analyses of variance (ANOVAs) showing significant differences among the care recipient (current vs. prior behavior) and caregiver versions overall and for all subscales. Results support the WES as a valid and reliable measure of wayfinding effectiveness in persons with dementia.

The miracle worker

Helen Keller’s fight to speak, to understand, to love aided by her teacher Annie Sullivan was nothing short of a miracle. This is her story. Crossbow Productions staged six performances of The Miracle Worker at the Brisbane Powerhouse in June 2009 to raise awareness of people living with disabilities. The play was shadow signed for the hearing impaired and tactile tours of the set were held before each performance for the vision impaired. Over 200 hearing and vision impaired attended and 70 of these had never been to the theatre before. I’m deaf and we should be able to go to anything, and you’ve done that for us. As a blind person, I got a great deal from it. I found it extremely moving. There should be a thousand or so in the audience rather than a hundred so that everyone can experience it.

Deliberative assessment of surrogate consent in dementia research

Background Research involving incapacitated persons with dementia entails complex scientific, legal, and ethical issues, making traditional surveys of layperson views on the ethics of such research challenging. We therefore assessed the impact of democratic deliberation (DD), involving balanced, detailed education and peer deliberation, on the views of those responsible for persons with dementia. Methods One hundred and seventy-eight community-recruited caregivers or primary decision-makers for persons with dementia were randomly assigned to either an all-day DD session group or a control group. Educational materials used for the DD session were vetted for balance and accuracy by an interdisciplinary advisory panel. We assessed the acceptability of family-surrogate consent for dementia research (“surrogate-based research”) from a societal policy perspective as well as from the more personal perspectives of deciding for a loved one or for oneself (surrogate and self-perspectives), assessed at baseline, immediately post-DD session, and 1 month after DD date, for four research scenarios of varying risk-benefit profiles. Results At baseline, a majority in both the DD and control groups supported a policy of family consent for dementia research in all research scenarios. The support for a policy of family consent for surrogate-based research increased in the DD group, but not in the control group. The change in the DD group was maintained 1 month later. In the DD group, there were transient changes in attitudes from surrogate or self-perspectives. In the control group, there were no changes from baseline in attitude toward surrogate consent from any perspective. Conclusions Intensive, balanced, and accurate education, along with peer deliberation provided by democratic deliberation, led to a sustained increase in support for a societal policy of family consent in dementia research among those responsible for dementia patients.

Fictionalising oral history : narrative analysis, voice and identity

Details of a project which fictionalises the oral history of the life of the author's polio-afflicted grandmother Beth Bevan and her experiences at a home for children with disabilities are presented. The speech and language patterns recognised in the first person narration are described, as also the sense of voice and identity communicated through the oral history.

Diversity and inclusion in the early years

The emphasis on inclusion of diverse learners presents challenges to teachers, particularly those whose understandings have been framed by notions of school readiness and special education of children with disabilities or learning difficulties. This mixed method study of early years children and teachers across three school sites in Australia explored factors associated with children’s development, achievement and adjustment. The focus went beyond organizational or structural issues to consider pedagogic responses to diverse learners from the kindergarten class through Year 1 and Year 2. The study identified factors influencing children’s outcomes, and highlighted areas of tension between inclusive policies and normative understandings that have implications for teachers’ professional learning.

(Dia)logics of difference : disability, performance & spectatorship

In this paper I examine the way artists with disabilities use performances in public spaces to encourage people to reflect on their own contribution to the construction of publics, or counter-publics, during and after the moment of encounter. I focus on Liz Crow’s Resistance on the Plinth. This is the title Crow gave her performance on the Forth Plinth in Trafalgar Square as part of Antony Gormley’s One and Other project in 2009. Described as a public art project presenting a portrait of the U.K., Gormley’s One and Other gave 2400 people selected at random via a lottery the chance to do whatever they chose for an hour on the vacant Forth Plinth in Trafalgar Square. In her hour, Crow chose to present herself in a Nazi uniform, in her wheelchair. In this paper, I discuss how Crow’s performance used a counterposition of images – the Nazi uniform, associated with eugenics and a desire to eliminate people who do not accord with the Arayan ‘norm’, counterposed with her wheelchair – to encourage passersby to “stop, look, think.” I examine how Crow used this counterposition to prevent passersby from attributing a single, stable, monologic meaning to the image – forestalling the risk that passersby would read the image as a Nazi on the Plinth – and instead draw passersby into a dialogue in which the impossibility of reconciling the contradictory images, ideologies and cultural logics Crow embodied encouraged people to continue thinking and talking about these cultural logics during and after the encounter.

Motivations and intentions : a case study of design-led activism

With a focus on intention and motivation, this paper describes a study involving three organisational communities and their collective effort to develop and provide more inclusive housing for people with disabilities and their families. While many studies, such as that by Rocha & Miles (2009), focus on commercial organisations, and sustainability from an economic perspective, this study involves a not-for-profit organisation (the accommodation and service provider) as well as a research organisation and a design action group volunteering their services free of charge. From this pro-bono context, the paper describes a case study that explores the nature of the collective as a basis for creative practice and political activism and the theoretical implications and wider application in terms of emerging research in the area of collaborative entrepreneurship and design activism.

House as home : emotions centred design for disability

In this paper we highlight how current approaches to design for disability have failed to consider the emotional needs not only of those with disabilities but their families and other carers as well. In conjunction with this, we demonstrate through a review of literature the significance of the house, the home and home in the support and growth of the person as a whole in association with their loved ones, and the potential inequity that arises when the emotional and holistic dimensions of 'being' are neglected. With a growing trend nationally and internationally away from group and shared housing, a greater focus on the family and their home is required. However, as research has shown, home for families where a family member has a disability is not necessarily a positive experience; it can be a source of stress, work, conflict and burden, arousing emotions ranging from loss of control through guilt. As proposed in the paper, consideration of the negative as well as positive emotions demands exploration of the 'middle ground' between institutions and home-based care models. This paper outlines the beginning of one such exploration.

Inclusive universal design practice and activism : a case study

This paper reports on a unique approach to inclusive practice that responds to several critical issues highlighted in the first Universal Design (UD) Conference in Yokohama as well as in more recent literature on universal design. The approach, as explained in the paper, involves a not-for-profit community organization, university researchers, and a design action group comprising practitioners from across the design disciplines, together with other specialist consultants, developing a voluntary capacity an independent housing model for people with disabilities and their families or caretakers. With a focus on relationships and "a system that places human beings at the centre in all respects", this paper presents the approach and the ermerging theoretical framework which addresses three issues that afacan and Erbug (2009) propose hinder the integration of universal design with design practice, namely: theory-practice inconsistency involving the lack of flow-on of universal design awareness into design practice; a way of thinking that exhibits very little empathy with and understanding of the requirements of diverse users; and poorly implemented and coordinated collaboration and communication involving designers and other professionals (pp. 731 - 732).

'Homes for Life' : a critical ecological study of an independent living project

In this paper, an ‘ecological’ lens is applied to an independent living project aiming to provide ‘homes for life’ for adult children with disabilities. The qualities of the project as ecological praxis are highlighted along with the implications for an open-ended enquiry into ecologies for and of the interior. In terms of the ecological concern for intimate modes of being, interior design is shown to be well placed through its association with environments in which people spend most of their life and through powerful concepts such as ‘interiority’ and ‘home’ which link to fundamental existential notions of ‘self ’ and ‘identity’. However, despite the interior being a significant generative force, this has not happened to the exclusion of other disciplines. Ignoring territorial urges to claim areas and concepts as one’s own, the paper describes how the project has actively encouraged design disciplines to trespass in each other’s territories. Ecologies for and of the interior, while recognising the need for discipline emphasis, also demand an integrated and collective approach through what is in effect transdisciplinary practice.

Human herpesvirus 8 load and progression of AIDS-related Kaposi sarcoma lesions

Introduction—Human herpesvirus 8 (HHV8) is necessary for Kaposi sarcoma (KS) to develop, but whether peripheral blood viral load is a marker of KS burden (total number of KS lesions), KS progression (the rate of eruption of new KS lesions), or both is unclear. We investigated these relationships in persons with AIDS. Methods—Newly diagnosed patients with AIDS-related KS attending Mulago Hospital, in Kampala, Uganda, were assessed for KS burden and progression by questionnaire and medical examination. Venous blood samples were taken for HHV8 load measurements by PCR. Associations were examined with odds ratio (OR) and 95% confidence intervals (CI) from logistic regression models and with t-tests. Results—Among 74 patients (59% men), median age was 34.5 years (interquartile range [IQR], 28.5-41). HHV8 DNA was detected in 93% and quantified in 77% patients. Median virus load was 3.8 logs10/106 peripheral blood cells (IQR 3.4-5.0) and was higher in men than women (4.4 vs. 3.8 logs; p=0.04), in patients with faster (>20 lesions per year) than slower rate of KS lesion eruption (4.5 vs. 3.6 logs; p<0.001), and higher, but not significantly, among patients with more (>median [20] KS lesions) than fewer KS lesions (4.4 vs. 4.0 logs; p=0.16). HHV8 load was unrelated to CD4 lymphocyte count (p=0.23). Conclusions—We show significant association of HHV8 load in peripheral blood with rate of eruption of KS lesions, but not with total lesion count. Our results suggest that viral load increases concurrently with development of new KS lesions.

Is social entrepreneurship the way forward? The case of the livingin collective

Social entrepreneurship can be conceived generally as a creative force born to address emergent or longstanding unfulfilled community needs occurring within or across the non-profit, business or government sectors. In this paper, we consider the current case study of a collective comprising a non-profit community organisation, pro-bono design group and university researchers and its attempts to negotiate the tension between social innovation and social entrepreneurship in order to address the lack of suitable options for independent living for individuals with disabilities and their families. With much of the developed world coming to terms with a rapidly aging population, and increased survival rates for individuals with disabilities, there has never been a more opportune time to consider work such as this which attempts to address social and market gaps in a socially innovative and inclusive way.

(Dia)logics of difference disability, performance and spectatorship in Liz Crow's Resistance on the Plinth

In this article I examine how artists with disabilities use public-space performance to encourage passersby to reflect on the construction of public discourses about disability – and, therefore, the construction of publics that are potentially inclusive of people with disabilities. I concentrate on British storyteller, artist, filmmaker and activist Liz Crow's Resistance on the Plinth, one of four pieces Crow has produced over the past three years as part of the Resistance series, an examination of the Nazi regime's Aktion T4 programme, which resulted in the mass murder of a quarter of a million people with disabilities. Created in August 2009 as part of Antony Gormley's One & Other public art project, the piece featured Crow dressed in a Nazi uniform and seated in a wheelchair on the Fourth Plinth in London's Trafalgar Square. For Crow – who creates work in a British context where public debate about the eugenics of genetic testing, euthanasia and assisted suicide is prevalent in the media – the Nazi atrocity is still rich in confronting imagery, resonant and relevant in a contemporary context. In this article, I consider the challenges that Gormley's extremely public One & Other presented for professional artists like Crow, who are committed to intervening in public perceptions of identity, community and culture. I describe the structural choices Crow made to provoke debate about the cultural logics embodied in the image she presented, and analyse some of the spectatorial responses from online forums such as the One & Other website, Facebook and Twitter immediately following the event.