Search results for ‘Subject term:"learning disabilities"’ Sort:
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The content of available practice literature in dementia and intellectual disability
- Author:
- JOKINEN Nancy
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 4(3), August 2005, pp.327-339.
- Publisher:
- Sage
Adults with intellectual disability are living to ages seen within the general population and they, too, are at risk of developing dementia. This review identifies the nature and content of the literature related to adults with intellectual disability and dementia and bring together guidelines for services and staff providing care. The preponderance of work between 1995 and 2004 focuses on the biomedical, diagnosis and assessment aspects of the disease. Although guidelines exist, there is a lack of published literature on the efficacy of practice strategies to guide the provision of daily care. Future research is discussed that could support continued community living and high quality of life during all stages of the disease.
Inclusion under the Mental Capacity Act (2005): a review of research policy guidance and governance structures in England and Wales
- Authors:
- RYAN Hayley, et al
- Journal article citation:
- Health Expectations, 24(1), 2021, pp.152-164. Online only
- Publisher:
- Wiley
Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi‐authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence‐based guidance is indicated. Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings. (Edited publisher abstract)
Professional carers’ experiences of caring for individuals with intellectual disability and dementia: a review of the literature
- Authors:
- CLEARY Josephine, DOODY Owen
- Journal article citation:
- Journal of Intellectual Disabilities, 21(1), 2017, pp.68-86.
- Publisher:
- Sage
- Place of publication:
- London
The number of people with intellectual disability living into old age and developing dementia continues to increase. Dementia presents a wide range of challenges for staff due to progressive deterioration. This article presents the findings from a narrative literature review of professional caregivers’ experiences of caring for individuals with intellectual disability and dementia. Seven electronic databases were searched using Boolean operators and truncation to identify relevant literature. Search results were combined and narrowed to articles relevant to staff working with individuals with intellectual disability and dementia, and 14 articles met the criteria for review. Themes outlined in the review include staff knowledge of dementia, staff training in dementia, caregiving, challenging behaviour, pain management, mealtime support and coping strategies. Overall carers must review and adjust their care delivery and support to people with intellectual disability and dementia, not only in terms of identifying and responding to their health needs but also through collaborative team working within and across services. (Edited publisher abstract)
People with a learning disability and dementia: reducing marginalisation
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Dementia Care, 20(5), September 2012, pp.34-38.
- Publisher:
- Hawker
People with a learning disability, especially Down’s syndrome, are at risk of dementia at a younger age. While the voice of people with learning disability and people with dementia are increasingly included in research and practice, the same cannot be said for people who have both a learning disability and dementia. The aim of this literature review was to identify factors that have contributed to this lack of consideration in health and social care policy and practice. The review starts with providing a historical overview, followed by a discussion of the key issues identified in the literature. A series of deficits are identified that are likely to result in a further increase in the marginalisation experienced by people with a learning disability and dementia. These deficits include the lack of a shared diagnosis, lack of staff training and future planning, lack of adapted communication as dementia progresses, lack of accurate statistics of the numbers affected or predicted, lack of clarity over accommodation options and an increase in isolation. The result is a Cinderella service that reflects the limited knowledge of individual experiences and support needs of this group.
The needs of people with learning disabilities who develop dementia: a literature review
- Author:
- LLEWELLYN Penny
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 10(2), May 2011, pp.235-247.
- Publisher:
- Sage
The longevity of people with learning disabilities is rising, and they are increasingly developing age related conditions including dementia. When this occurs, their medical and social needs pose many challenges for services. A literature review was undertaken of articles published between 1996 and 2006. Data were collected relating to the needs of people with learning disabilities and dementia, their carers and their peers. Findings revealed that the primary medical need was for timely and accurate diagnosis. There were a multitude of diagnostic tools, and advice was available as to which are most suitable for different client groups. The needs of carers are intertwined with those of people with learning disabilities and dementia and meeting their needs for education, training and increased staff numbers, has proved beneficial. Although multiple services were responsible for the needs of this client group, there was an agreement that learning disability services should be central to social care service provision.
Dementia in older adults with intellectual disabilities: epidemiology, presentation and diagnosis
- Authors:
- STRYDOM Andre, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(2), June 2010, pp.96-110.
- Publisher:
- Wiley
The authors conducted a literature review on the epidemiology, presentation and diagnosis of dementia in older adults with intellectual or learning disabilities (ID) and specific genetic syndromes, such as Downs syndrome (DS) using Medline, EMBASE and PsycINFO for original papers in English, German or Dutch, between 1997 and 2008. Articles from the United Kingdom, Canada, Australia, United States, Netherlands, Ireland; Japan, South Africa, Scandinavia and Italy had varied methodologies and differences in diagnoses resulting in a wide range of prevalence rates of dementia. Rates of dementia in those with ID, not because of DS, were comparable or higher than those in the general population. The onset of Alzheimers disease in DS appears earlier and the prevalence increases from less than 10% in the 40’s, to more than 30% in the 50’s with varying prevalence reported in those over 60 years. Incidence rates increased with age. Presentation differs in the ID population compared with the general population, with those with DS presenting with behavioural changes believed to be due to frontal lobe deficits. Few studies of dementia in other genetic syndromes such as Rett syndrome, an autistic spectrum disorder, and Sanfilippo syndrome were located in the literature, but these are discussed and tabulated along with others found.
A review of measures used in the screening, assessment and diagnosis of dementia in people with an intellectual disability
- Authors:
- MCKENZIE Karen, METCALFE Dale, MURRAY George
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(5), 2018, pp.725-742.
- Publisher:
- Wiley
Background: The increasing number of individuals with an intellectual disability who are at risk of developing dementia highlights the need to use measures with strong psychometric properties as part of the screening, assessment and diagnostic process. Method: Searches were made of clinical and good practice guidelines and English language journal articles sourced from Proquest, Web of Science and Scopus databases (up to July 2017) for tools which were designed or adapted for the purpose of helping to diagnose dementia in people with intellectual disability. Results: Based on a detailed review of 81 articles and guidelines, the present authors identified 22 relevant tools (12 cognitive, 10 behaviour). These were reviewed in terms of their psychometric properties. Conclusions: A number of tools were found to be available for use with people with intellectual disability; however, few were specifically standardized for this purpose which also had comprehensive information about reliability and validity. (Edited publisher abstract)
Engagement of people with long-term conditions in health and social care research: barriers and facilitators to capturing the views of seldom-heard populations
- Authors:
- BEADLE-BROWN Julie, et al
- Publisher:
- Quality and Outcomes of Person-centred Care Policy Research Unit
- Publication year:
- 2012
- Pagination:
- 56
- Place of publication:
- Canterbury
Explores the recent literature on barriers and facilitators to including seldom heard groups as participants in research. Eighteen databases were identified for the final search, and 83 papers included in the review. These predominantly focused on four categories as being difficult to reach or engage in research: intellectual disability, older adults, in particular those with dementia, mental health conditions and minority ethnic groups. Almost half the papers reviewed focused on those with intellectual disabilities. A key barrier to inclusion was the assumptions made by various people (researchers, gatekeepers, ethics committees, funders and so on) involved at each stage of the research process, including research design, ethics and recruitment. The paper suggests that there has been limited progress in developing methods to systematically include these groups in recent years and that there is a need for more research exploring the use of alternative techniques for eliciting responses. (Edited publisher abstract)
How do health and social care professionals in England and Wales assess mental capacity? A literature review.
- Authors:
- JAYES Mark, et al
- Journal article citation:
- Disability and Rehabilitation: Assistive Technology, early cite 10 February 2019,
- Publisher:
- Taylor and Francis
- Place of publication:
- London
Purpose: To review evidence describing how health and social care professionals in England and Wales assess mental capacity, in order to identify ways to improve practice. Methods: A systematised literature review was completed. Electronic databases of published medical, health and social care research and gray literature were searched. Journal articles and research reports published between 2007 and 2018 were included if they met predefined eligibility criteria. Evidence from included studies was synthesised using thematic analysis. Results: 20 studies of variable methodological quality were included. The studies described assessments carried out by a range of multidisciplinary professionals working with different groups of service users in diverse care contexts. Four main themes were identified: preparation for assessment; capacity assessment processes; supported decision-making; interventions to facilitate or improve practice. There was a lack of detailed information describing how professionals provided information to service users and tested their decision-making abilities. Practice reported in studies varied in terms of its conformity to legal requirements. Conclusions: This review synthesised evidence about mental capacity assessment methods and quality in England and Wales and analysed it to suggest ways in which practice might be improved. (Edited publisher abstract)
Evidence review for an evidence-informed toolkit for local authorities: commissioning better oral health for vulnerable older people
- Author:
- PUBLIC HEALTH ENGLAND
- Publisher:
- Public Health England
- Publication year:
- 2018
- Pagination:
- 71
- Place of publication:
- London
This review provides a synthesis of evidence for 10 key areas for potential interventions that might be used by local authorities to improve the oral health of vulnerable older people, aged 65 years and over in need of special care, support, or protection. The focus is on those groups for whom adult social care departments in local authorities commission services, which include: residential and nursing home residents, older people living with dementia, older people living with learning disabilities, and frail older people. Searches were undertaken using electronic databases for systematic reviews and other reviews published from 1991 onwards, and additional searches were also carried out. Recommended interventions identified include programmes of training in oral care for care staff and carers, protocols developed for oral care in care settings, and routine denture identification marking to ensure that lost dentures can be returned to the right person. (Edited publisher abstract)