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Keeping wartime memory alive: an oral history project about the wartime memories of people with learning difficulties in Cumbria
- Authors:
- DIAS John, et al
- Journal article citation:
- Disability and Society, 27(1), 2012, pp.31-49.
- Publisher:
- Taylor and Francis
In this article, the authors discuss an oral history project funded by the Heritage Lottery that recorded the memories of eight people with learning difficulties during the Second World War in Cumbria, UK, before their personal histories were lost forever. The process of emancipatory research is examined in relation to the main project findings. Some difficult issues were experienced by the team, such as the ill-health and death of participants, negotiating access with gatekeepers and concerns around decision-making. Cumbria experienced limited war activity, but people’s lives changed in subtle ways. This led to discussion around false/given memories; formal/informal interview processes and transcription/recording issues. The unexpected revelation of the study was the knowledge created around approaches to inclusion.
Invited commentary on Bigby and Frawley's reflections on the challenges of doing inclusive research as part of the “Making Life Good in the Community” study
- Author:
- ALM Norman
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 35(2), June 2010, pp.62-63.
- Publisher:
- Taylor and Francis
This paper discusses the paper by Bigby and Frawley in this journal issue on the involvement of a person with intellectual disability as a co-researcher in a large multimethod study. This commentary applauds the project for taking a leap into unknown territory, and then to be so honest in recognising that the intended aims were not met. It points out that the list of requirements normally needed for researchers may not be appropriate for someone with learning difficulties. An approach that might work in involving someone with learning difficulties as a research associate is to design a niche in the project which suits their specific capabilities. This paper goes on to describe some of their own research group’s attempts to involve people with a disability in research into developing a range of assistive technology systems intended to benefit them. In particular it describes the involvement of older users and older users with dementia in iterative design methods to continually comment on and test a series of hopefully improving prototypes.
A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia
- Authors:
- DI LORITO Claudio, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 32(1), 2017, pp.58-67.
- Publisher:
- Wiley
Background: This study aims to identify the benefits, the risks and the practical challenges and to develop a model of good practice in peer research with people with dementia. Methods: The review conducted searches on PsycInfo, PubMed and Google Scholar for empirical investigations or discussion papers on peer research. Given the limited literature in the field of dementia, studies with groups who share similar demographics (older people), experience of stigma (mental health service users) and exclusion from research (people with learning disabilities) were included. No restrictions on language and publication date were applied. Analysis: Three themes were identified: the potential benefits, the potential risks and the practical challenges of peer research. The authors the developed a model of good practice. The European Working Group of People with Dementia reviewed the authors' paper and added to the findings. Results: Seven papers were included in the evidence synthesis. Potential benefits of peer research included enriched data and empowering people with dementia. Potential risks included power differentials between researchers and issues of representativeness. The practical issues for good practice included the training of peer researchers, defining involvement and roles, working with cognitive impairment and considering resource implications. The European Working Group of People with Dementia emphasised the importance of equality issues. Conclusion: Involving people with dementia in peer research can generate several benefits, including empowerment and opportunities for inclusion for the peer researchers and the research participants living with dementia, challenging academics' traditional views on research processes and gathering enhanced research data. There remains a need for further research on the impact of peer research in dementia studies. (Edited publisher abstract)
A new approach to the qualitative evaluation of functional disability in dementia
- Authors:
- KURZ X., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 18(11), November 2003, pp.1050-1055.
- Publisher:
- Wiley
Dementia patients suffer from the progressive deterioration of cognitive and functional abilities. Instrumental disabilities usually appear in the earlier stages of the disease while basic disabilities appear in the more advanced stages. In order to differentiate between mild, moderate and severe patients both instrumental and basic functional disabilities should be taken into account simultaneously. The objective of this study was to find a new method for classifying dementia patients based on their disabilities by using a basic and an instrumental Activities of Daily Living (ADL) scale. Functional disability was assessed in a Belgian cohort of dementia patients using the Katz and Lawton Instrumental Activities of Daily Living (IADL) scales. A k-means derived clustering method allocated patients to disability clusters according to their Katz and Lawton scores. In order to validate the classification, we compared socio-demographic, clinical and costs parameters between the groups. The clustering method allocated patients between three clusters: dependent, non-dependent with instrumental functional disability (ND-IFD) and non-dependent. Dependence, as defined by these clusters, significantly correlates with age, residential setting, MMSE, patient's quality of life and costs. This new classification of patients suffering from dementia will provide better understanding of functional disabilities and will complement the evaluation of disease severity based on cognitive function.
The role of volumetric MRI in understanding mild cognitive impairment and similar classifications
- Authors:
- ANSTEY K. J., MALLER J. J.
- Journal article citation:
- Aging and Mental Health, 7(4), July 2003, pp.238-250.
- Publisher:
- Taylor and Francis
The authors review nineteen empirical studies of mild cognitive impairment (MCI), age-associated memory impairment (AAMI) and related classifications reportingvolumetric data on the hippocampus, entorhinal cortex and amygdala. Studies varied considerably in terms of the selection of participants, sample characteristics, the definitions of regions of interest and normalization techniques. Effect sizes for differences in left hippocampal volume and right hippocampal volumes of AAMI, MCI and pre-clinical dementia groups compared with controls ranged from 0.47 to 1.34. Effect sizes for left and right hippocampal volumes for Alzheimer’s disease (AD) versus control were 1.88 and 1.75 respectively. Longitudinal results confirm that initial hippocampal volume is predictive of conversion to AD. Greater standardisation in methodology and the development of normative age-referenced databases of regional brain volumes is required.
Validation of the modified telephone interview for cognitive status (TICS-m) in Hebrew
- Authors:
- BEERI Michal Schnaider, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 18(5), May 2003, pp.381-386.
- Publisher:
- Wiley
The validity of the Hebrew version of the Telephone Interview for Cognitive Status-Modified (TICS-m) for Mild Cognitive Impairment (MCI), for dementia, and for cognitive impairment (either MCI or dementia) was investigated. Of the 10 059 who took part of the Israel Ischemic Heart Disease Cohort, 1902 of the 2901 survivors in 1999 had TICS-m interviews. Those with a score of 27 or below and a random sample with a score of 28 or 29 were invited to have a physician's examination for the diagnosis of dementia. The analysis was performed on the 576 who agreed. Based on physician's diagnosis, 269 were diagnosed as suffering from dementia, 128 as suffering from MCI, and 179 were diagnosed with no cognitive impairment. The TICS-m Hebrew version's internal consistency was very high (Cronbach's alpha = 0.98) and showed a strong convergent validity with the MMSE (r = 0.82; p < 0.0005). The sensitivity was 100% for each of the conditions. Finally, after controlling for age, education and hearing impairment, TICS-m was a strong predictor of dementia, MCI and cognitive impairment. At a cut-off of 27/50 the Hebrew version of the TICS-m is a useful screening instrument to identify subjects suffering from mild cognitive impairment, dementia and cognitive impairment (MCI or dementia).
The Multidimensional Observation Scale for Elderly Subjects (MOSES): studies in adults with intellectual disability
- Authors:
- DALTON Arthur J., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.310-324.
- Publisher:
- Taylor and Francis
Describes the results of five studies aimed at evaluating the usefulness, reliability, and validity of the Multidimensional Observation Scale for Elderly Subjects (MOSES) in the assessment of change in ageing persons with intellectual disability. Three hundred and thirty-six individuals with an average age of 49.8 years, including an equal number of men and women, were participants in one or more of the five studies. There were 220 participants with Down syndrome, 81 persons without Down syndrome with intellectual disability, and 35 persons from the general ageing population who were clinically diagnosed with Alzheimer's disease. Results concluded that the MOSES is a behavioural observation scale that can provide useful information in clinical settings as well as in research.
Development of an instrument for early detection of dementia in people with Down syndrome
- Authors:
- JOHANSSON Per Erik, TERENIUS Olle
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.325-345.
- Publisher:
- Taylor and Francis
The successful detection of early signs of dementia in people with Down syndrome could form a basis for useful early support and for drug treatment. This report describes the development and preliminary application of an interview and test instrument for the assessment of dementia among people with intellectual disability, as well as a framework for diagnosis. Reported are the assumptions for the items used, descriptions of the process and items used, and the associations of test items with predicting the presence of dementia. The authors conclude that a protocol combining testing and interview has promise and potential for detecting early signs of dementia in this population and could prove feasible for use in practice.
Comparison of instruments for the diagnosis of dementia in individuals with intellectual disability
- Authors:
- HOEKMAN Joop, MAASKANT Marian A.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.296-309.
- Publisher:
- Taylor and Francis
This article describes the agreement among the results (dementia/no dementia) of three instruments used for the potential diagnosis of dementia in persons with intellectual disability. The instruments are: the Dementia Questionnaire for Mentally Retarded Persons (DMR), the Checklist with Symptoms of Dementia (CLD) and the Delayed Match-to-Sample Test (DMTS). The results were compared with the expert opinion of a physician/educational specialist/psychologist. The participants were 329 adults affiliated with centres for people with intellectual disability in The Netherlands. It was found that the agreement among the three instruments was low. The agreement between the expert opinion and the results of the tests was also found to be low. It was concluded that the instruments do not mutually agree upon which of the adults can be regarded as dementing or not dementing and they also provide inconsistent agreement with the expert opinion when dementia is present. It was further concluded that it is not advisable to use a single instrument when attempting to diagnose dementia in people with intellectual disability.
Enabling research: people with learning difficulties. Elderly people. Young children
- Authors:
- SIMONS Ken, RICHARDS Sally, HAYDEN Carol
- Journal article citation:
- Research Policy and Planning, 12(2), 1994, pp.4-8.
- Publisher:
- Social Services Research Group
Workshop leaders were tasked with presenting a session about particular issues arising when carrying out consumer research with different groups of people. The groups of people under consideration were people with learning difficulties, older people and young people. Reports on the issues explored in the different workshops.