Shirli Werner

The Multidimensional Attitudes Scale toward Persons with Disabilities (MAS): Construction and Validation.

This study presents the development of a new instrument, the Multidimensional Attitudes Scale Toward Persons With Disabilities (MAS). Based on the multidimensional approach, it posits that attitudes are composed of three dimensions: affect, cognition, and behavior. The scale was distributed to a sample of 132 people along with a self-esteem measure and a frequently employed attitude scale, the Attitudes Toward Disabled Persons Scale (ATDP). The construct and concurrent validity of the questionnaire was demonstrated by reliability and factor analyses, as well as by comparison with the ATDP scale. Principal component factor analysis revealed three correlated but distinct factors. Results show that women hold more positive behavioral attitudes than men. Interestingly, men with high self-esteem were found to hold more positive cognitions than men with low self-esteem. Results indicate the importance of a multidimensional approach both for the construction of sound instruments and for professional interventions aimed at modifying attitudes toward persons with disabilities.

The use of advanced tracking technologies for the analysis of mobility in Alzheimer's disease and related cognitive diseases

BackgroundOne of the more common behavioral manifestations of dementia-related disorders is severe problems with out-of-home mobility. Various efforts have been attempted to attain a better understanding of mobility behavior, but most studies are based on institutionalized patients and the assessment usually relies on reports of caregivers and institutional staff, using observational approaches, activity monitoring, or behavioral checklists. The current manuscript describes the research protocol of a project that measures mobility in Alzheimers disease and related cognitive disorders in an innovative way, by taking advantage of advanced tracking technologies.Methods/designParticipants are 360 demented persons, mildly cognitively impaired persons, and unimpaired controls aged ≥ 65 in Israel and Germany. Data regarding space-time activities will be collected via a GPS tracking kit for a period of 4 weeks in 3 waves (one year apart) with the same participants (using a repeated measures design). Participants will be interviewed by use of a battery of instruments prior to and following GPS data collection. Further, a family member will complete a questionnaire both before and after data tracking.Statistical analyses will strive to explain differences in mobility based on a wide range of socio-structural, clinical, affect-related and environmental variables. We will also assess the impact of the use of advanced tracking technology on the quality of life of dementia patients and care givers, as well as its potential as a diagnostic tool. Systematic assessment of ethical issues involved in the use of tracking technology will be an integral component of the project.DiscussionThis project will be able to make a substantial contribution to basic as well as applied and clinical aspects in the area of mobility and cognitive impairment research. The innovative technologies applied in this study will allow for assessing a range of dimensions of out-of-home mobility, and provide better quality data.

Family Quality of Life among Families with a Member Who Has an Intellectual Disability: An Exploratory Examination of Key Domains and Dimensions of the Revised FQOL Survey.

BACKGROUND The Family Quality of Life Survey (FQOLS-2006) was developed as the result of increased interest in family quality of life (FQOL) among families with a member who has an intellectual disability (ID). The instrument includes nine life domains and six dimensions reflecting the main areas and characteristics of FQOL. The aim of the current study was to provide a descriptive analysis of the domains and dimensions of the survey and to explore their relationship to one another and to global satisfaction. METHOD A convenience sample of 35 participants with a family member who had ID completed the FQOLS-2006 in a large urban centre in Canada. The data were analysed using descriptive analyses. RESULTS The findings showed that although participants differentiated between different domains and dimensions, as reflected in their variability, stability was also found. For example, support from others was rated lowest across most dimensions, while family relationships and health of the family were generally rated higher. CONCLUSIONS The findings strengthen the importance of examining both the overall perception of FQOL as well as the perceptions in individual life domains. Moreover, they highlight the need to examine each life domain according to its various dimensions. In sum, the results call for further examination of the FQOLS-2006 as a useful tool for assessing FQOL and for implementing services based on it.

Families’ and Professional Caregivers’ Views of Using Advanced Technology to Track People With Dementia

in this study we examined the ethical aspects of the use of the Global Positioning Systems (GPS) to track people with dementia. The findings are based on qualitative data gathered from focus groups of family and professional caregivers. The most important theme was the need to balance patients’ need for safety with the need to preserve their autonomy and privacy. The main potential benefit of the use of GPS was related to the peace of mind of the caregivers themselves. The findings also suggest that caregivers’ views change according to the locus of responsibility of the caregivers for the safety of people with dementia. The caregivers give preference to patients’ safety more than autonomy when they are responsible for the patients. When the patients are under the responsibility of other caregivers, they give preference to patients’ autonomy more than their safety. Overall, the variety and the depth of the views of different stakeholders toward the use of electronic tracking for people with dementia presented in this article provide a meaningful contribution to the ethical debate on this topic.

Ethical aspects of using GPS for tracking people with dementia: recommendations for practice

BACKGROUND Problems with out-of-home mobility are among the more common behavioral disturbances in dementia. Today people with dementia can be aided by easily accessible assistive technologies, such as tracking devices using Global Positioning Systems (GPS). Attitudes toward these technologies are still inconclusive and their use with people with dementia raises ethical concerns. The lack of ethical consensus on the use of GPS for people with dementia underlines the need for clearer policies and practical guidelines. METHODS Here we summarize qualitative and quantitative findings from a larger research project on the ethical aspects of using GPS for tracking people with dementia. RESULTS The findings are formulated in a list of recommendations for policy-makers as well as for professional and family caregivers. Among other points, the recommendations indicate that the preferences and best interests of the people with dementia should be central to the difficult decisions required in dementia care. Further, no-one should be coerced into using tracking technology and, where possible, people with dementia must be involved in the decision-making and their consent sought. CONCLUSIONS The decision whether, when and how to use GPS for tracking people with dementia should be made at the time of diagnosis jointly by the person with dementia, his/her family and professional caregivers. This decision should be made in formal structured meetings facilitated by a professional team.

Stigma and intellectual disability: potential application of mental illness research.

PURPOSE Individuals with intellectual disabilities (ID) and individuals with mental illness are consistently found to be among the most socially excluded populations and continue to face substantial health, housing, and employment disparities due to stigma. Although this has spurred extensive research efforts and theoretical advancements in the study of stigma toward mental illness, the stigma of ID has received only limited attention. In this article we explore the application of mental illness stigma research for ID. DESIGN We carefully reviewed the existing research on mental illness stigma as a foundation for a parallel summary of the empirical literature on attitudes and stigma related to ID. RESULTS Based on our review, there has not been a systematic approach to the study of stigma toward ID. However, multilevel conceptual models of stigma have received much attention in the mental illness literature. These models have been used to inform targeted interventions and have application to the study of the stigma process for individuals with ID. Nonetheless, there are indeed key differences between-as well as substantial variability within-the ID and mental illness populations that must be considered. CONCLUSIONS Stigma is an issue of social justice impacting the lives of individuals with ID, yet there remains virtually no systematic framework applied to the understanding of the stigma process for this group. Future research can draw on the stigma models developed in the mental illness literature to guide more rigorous research efforts and ultimately the development of effective, multilevel stigma-change strategies for ID.

Stigma and intellectual disability: A review of related measures and future directions.

The theoretical construct of stigma has received much attention in psychiatric disability research, leading to the development of widely used measures. Such measures have had real world impact in that they allow for the assessment of stigma change efforts. The study of stigma has not received the same level of attention for persons with intellectual disabilities. In this manuscript we evaluate existing measures of intellectual disability stigma through a systematic review of the literature. Twenty-four scales were reviewed and evaluated. Findings indicate a paucity of stigma measures based on theoretical conceptualizations pointing to a need for further development of measures to pursue the study of public, self, and family stigma as related to intellectual disability.

Mental Health: Knowledge, Attitudes and Training of Professionals on Dual Diagnosis of Intellectual Disability and Psychiatric Disorder.

BACKGROUND Dual diagnosis (DD) refers to the coexistence of intellectual disability and psychiatric disorder. In order to provide individuals with DD with adequate care, it is essential for mental health workers to have adequate knowledge and positive attitudes. These may be achieved through proper training. AIMS To summarise the available literature examining the knowledge, attitudes and training of psychiatrists and other professional caregivers in regard to serving people with DD. METHODS A search strategy was developed to find manuscripts published in English since 1995. RESULTS Twenty-seven studies on knowledge, attitudes and training in the field of DD were identified and reviewed in this paper. CONCLUSION The findings of this review stress the need to improve the knowledge, competence and attitudes of practitioners within the DD field via training and practice opportunities. In light of this review, recommendations for improving training opportunities and for conducting future research are made.

Who should make the decision on the use of GPS for people with dementia

Objectives: In recent years advanced technologies, such as Global Positioning Systems (GPS), allow for tracking of human spatial activity and provide the ability to intervene to manage that activity. The purpose of this study is to examine the issue of who should decide about the use of electronic tracking using GPS for people with dementia. Methods: Based on quantitative data collected from 296 participants comprising cognitively intact elderly, family caregivers of people with dementia, social workers, other professionals, and social work students, study participants were asked to rate nine different potential decision-makers to make this decision. Results: The results show that figures inside the family, particularly the spouse or the most involved family caregiver, were perceived more important in the decision-making process than figures outside the family, whereas the person with dementia was ranked third in the order of the figures. Since the decision to use GPS for tracking raises the ethical dilemma of personal safety versus autonomy and privacy of people with dementia, the findings seem to indicate that the reluctance of professional caregivers to assist family caregivers to make this decision is experienced as frustrating. Conclusions: The findings imply that in order to reach a balance between the wishes and interests of both people with dementia and their family caregivers, there is a need for more active involvement of the professional caregivers to facilitate the family decision-making process.

What do cognitively intact older people think about the use of electronic tracking devices for people with dementia? A preliminary analysis

BACKGROUND The issue of using advanced tracking technologies such as Global Positioning Systems (GPS) is part of a wider debate on the acceptability of assistive technology to older people with dementia. The use of GPS can enhance the personal safety of older people by alerting caregivers to potential dangers or adverse events that might threaten the individuals health and safety, but at the same time it raises ethical concerns. This study examines the attitudes of cognitively intact older people toward the use of tracking devices for people with dementia. METHODS The analysis is based on quantitative data from a convenience sample (n = 42) and qualitative data gathered from two focus groups of cognitively intact older people in Israel. RESULTS Whereas cognitively intact older people clearly differentiate between themselves and people with dementia, they support the use of tracking devices when dementia is either formally diagnosed or its signs are evident. They value the safety of people with dementia above preserving their autonomy. Although they perceive the decision to use tracking devices as an intra-family issue, they expect guidance from professional caregivers of people with dementia. The acceptability of tracking devices is dependent on their appropriate weight, size and ease of use. CONCLUSIONS Cognitively intact older people favor the idea of tracking people with dementia. To facilitate family decision-making on the use of tracking devices, structured meetings guided by professionals and including persons with dementia and their family caregivers are suggested.