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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 intersection of intellectual disability and dementia: report of the international summit on intellectual disability and dementia
- Authors:
- WATCHMAN Karen, JANICKI Matthew P.
- Journal article citation:
- Gerontologist, 59(3), 2019, pp.411-419.
- Publisher:
- Oxford University Press
An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13–14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. (Edited publisher abstract)
Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability
- Authors:
- WATCHMAN Karen, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 23(2), 2019, pp.266-280.
- Publisher:
- Sage
- Place of publication:
- London
The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia. (Edited publisher abstract)
Investigating the lived experience of people with Down syndrome with dementia: overcoming methodological and ethical challenges
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.190–198.
- Publisher:
- Wiley
Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognised and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome. (Publisher abstract)
Why wait for dementia?
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Learning Disabilities, 7(3), September 2003, pp.221-230.
- Publisher:
- Sage
Adults with Down's syndrome living in supported accommodation, who develop dementia, may also experience other preventable difficulties caused by the environment in which they live. This can result in their enforced move to different accommodation. Yet it is known that it is beneficial for people with learning disabilities and dementia to remain in familiar surroundings for as long as possible. The article puts forward a new set of guidelines suggesting the modification of the living environment of adults with Down's syndrome before they develop dementia. The guidelines are discussed along with possible barriers to their implementation.