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Estimating the number of people with Down’s syndrome in Scotland and the cohort at elevated risk of early onset dementia
- Author:
- STUART Claire
- Journal article citation:
- Tizard Learning Disability Review, 22(3), 2017, pp.164-171.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to estimate the size of the population of people with Down’s syndrome in Scotland in order to provide a basis for estimating likely numbers of people with dementia in Down’s syndrome at a range of ages. Design/methodology/approach: Recorded data were requested from all general practitioner (GP) services in Scotland on people with an identified READ code denoting Down’s syndrome. A statistical weighting model was then applied to account for non-response bias. Findings: There were 3,261 people with Down’s syndrome estimated by the application of a statistical weighting model. Of these, 1,118 people (34 percent) were aged between 40 and 59. This age banding includes the age groups reported as having the highest incidence of early onset dementia in Down’s syndrome. Research limitations/implications: It is not possible to apply a benchmark to the percentage of observed data which gives an indication of how accurate the estimates produced are. Rather, the quality of the estimates depends on the response rate itself and the extent to which response is correlated with the outcome variable. In short, the quality of the final weighted estimates depends on the extent to which the biasing effect is mitigated by the weighting. As a result, a different response rate to this survey would have resulted in variations in the weighting model and therefore provided a different set of estimates. Social implications: Adults with Down’s syndrome have an elevated risk of developing dementia significantly earlier than the general population and require specific age appropriate supports and services to meet their needs both pre and post-diagnosis. The reality of this is currently not fully realized in either standard practice or national policy concerning the issue. Originality/value: This is the first set of data collected from GP services in Scotland to examine this issue and attempt to identify the population of people with Down’s syndrome in Scotland as a whole. (Publisher abstract)
Commentary on “Estimating the number of people with Down’s syndrome in Scotland and the cohort at elevated risk of early onset dementia”
- Author:
- DODD Karen
- Journal article citation:
- Tizard Learning Disability Review, 22(3), 2017, pp.172-176.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to consider the implications for people with Down’s syndrome and their families of identifying those people who are at risk of developing dementia from the research study “Estimating the number of people with Down’s syndrome in Scotland and the cohort at elevated risk of early onset dementia”. Design/methodology/approach: The commentary is based on a review of the associated literature. Findings: Estimating the numbers is important but has serious implications for people who have an elevated risk and their families. Preparation and ongoing support and planning are vital to ensure that quality of life is maintained as dementia is identified and progresses. Originality/value: The commentary considers the research presented from a practitioner perspective. (Publisher abstract)
Should we refer for a dementia assessment? A checklist to help know when to be concerned about dementia in adults with Down syndrome and other intellectual disabilities
- Authors:
- WHITWHAM Sarah, MCBRIEN Judith, BROOM Wendy
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.17-21.
- Publisher:
- Wiley
The genetic risk in the Down syndrome population for the early onset of Alzheimer’s disease is well known. This research developed a screening checklist to help carers and professionals know when to make a referral for a dementia assessment. A checklist was completed for all new referrals to a dementia service for people with intellectual disabilities. The obtained scores were compared to the diagnostic outcome of a comprehensive dementia assessment. Participants included 159 individuals with learning disability, of which 146 had Downs. After 12 months of collecting data, 39 had a diagnosis of dementia. Findings indicated that a higher score on the checklist correlates significantly with a subsequent diagnosis of dementia. Overall, the checklist appeared to be a useful tool to prompt referrals for a full dementia assessment. The authors concluded that, by helping the referrer to identify dementia, it may reduce the number of late or non-referrals.
Impact of depressive symptoms on the rate of progression to dementia of patients affected by mild cognitive impairment: the Italian Longitudinal Study on Aging
- Authors:
- PANZA Francisco, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 23(7), July 2008, pp.726-734.
- Publisher:
- Wiley
Mild cognitive impairment (MCI) is often a prodromal of dementia and depressive symptoms have been suggested as risk factor for dementing disorders. The authors evaluated the possible impact of depressive symptoms on the rate of progression to dementia in MCI patients after a 3.5-year follow-up; and the interaction between depressive symptoms and vascular risk factors for conversion to dementia. A total of 2,963 individuals from a sample of 5,632 65-84 year old subjects were evaluated at the first (1992-93), and second (1995-96) surveys of the Italian Longitudinal Study on Aging, a prospective cohort study. MCI and dementia were classified using current clinical criteria. Depressive symptoms were measured with the Geriatric Depression Scale. Among the 2,963 participants, 139 prevalent MCI patients were diagnosed at the first survey. During the 3.5-year follow-up, 14 MCI patients progressed to dementia, and no significant relationship between depressive symptoms and rate of progression to dementia was found. No socio-demographic variables or vascular risk factors modified the association between depressive symptoms and conversion to dementia. It was concluded that in the population studied depressive symptoms were not associated with the rate of progression to dementia in MCI patients. The findings did not support a role of socio-demographic variables or vascular risk factors in the association of depressive symptoms and conversion to dementia.
The neuropsychological assessment of age related cognitive deficits in adults with Down's Syndrome
- Authors:
- CRAYTON Lissa, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 11(3), 1998, pp.255-272.
- Publisher:
- Wiley
There is substantial evidence that older adults who have Down's Syndrome are at risk for developing Alzheimer's disease. In this study, adults with Down's Syndrome were assessed using a battery of neuropsychological tests, some of which had been used to assess dementia arising from Alzheimer's Disease in the general population. The results of a pre-existing global cognitive comparison, showed no difference between age groups on neuropsychological deficits which may indicate advanced dementia. However, the older age groups showed significantly impaired performance on memory tests in comparison to the younger age group. It is concluded that the more subtle cognitive impairments which associate to Alzheimer's Disease can be identified in the presence of a global cognitive impairment with sufficiently sensitive tests.
Protected by design: new fraud protections for people at risk
- Authors:
- GLOAG Andrew, MACKENZIE Polly, ATAY Asli
- Publisher:
- DEMOS
- Publication year:
- 2019
- Pagination:
- 67
- Place of publication:
- London
This report looks at the needs of people with a health condition that affects their cognitive abilities and their capacity to make decisions without support. Based on survey analysis, the report presents evidence that adults with cognitive impairment, such as acquired brain injury, learning disabilities or dementia, are more likely to experience financial abuse and be targeted by fraud. It analyses the current policy debate about the nature of vulnerability in the context of financial services, and makes the case that those with limited or fluctuating capacity should be legally entitled to additional protection or support under the terms of both the Equality Act and Mental Capacity Act. The report also details the increased reliance of people with cognitive impairments on friends, family and carers to help them deal with their finances. It analyses both the ways in which these carers could be helpful and harmful in the fight against fraud. It recommends a number of measures that could better protect at risk people from fraud and financial abuse. (Edited publisher abstract)
Aging with intellectual and developmental disabilities and dementia in Manitoba
- Authors:
- SHOOSHTARI Shahin, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 11(4), 2017, pp.134-144.
- Publisher:
- Emerald
Purpose: Information on the risk of dementia in ageing persons with intellectual and/or developmental disability (IDD) in Manitoba, Canada is lacking. The purpose of this paper is to estimate dementia prevalence in adults with IDD. Design/methodology/approach: Anonymised population-level health and non-health administrative data (1979-2012) contained in the Population Health Research Data Repository of the Manitoba Centre for Health Policy (MCHP) were linked to identify adults with IDD, and estimate the prevalence of dementia based on the presence of ICD codes. Prevalence of dementia was estimated for persons aged 18-55 years and 55+ years, and was reported by sex, type of residence, region of residence, neighbourhood income quintiles, and IDD diagnostic category. Findings: Of the 8,655 adults with IDD identified, 8.1 per cent had an indication of dementia in their medical records; an estimate three times greater than that found for those without IDD (2.6 per cent). More than 17 per cent of Manitobans with IDD aged 55+ years had an indication of dementia, which was nearly twice the rate reported previously. Of those with IDD and dementia, 34.7 per cent lived in long-term care facilities. Originality/value: Health and social support services are typically available to individuals with dementia aged 65+ years; thus, younger adults with IDD and dementia may not be eligible for those supports. To promote equity in health and access to care, dementia screening and increased supports for ageing individuals with IDD are recommended. (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)
The work of the PGO in protecting vulnerable people from financial abuse
- Authors:
- BURNS Sophie, BOWMAN John
- Journal article citation:
- Journal of Adult Protection, 5(2), May 2003, pp.21-25.
- Publisher:
- Emerald
Explains the role remit and mechanisms available to the Public Guardianship Office in relation to the administration of the financial affairs of adults unable to manage their affairs. Also reports on research commissioned by the Public Guardianship Office which evaluated of 51 case files to identify the risks and explore the safeguards needed to prevent misappropriation of clients' funds.
Rights, risks and limits to freedom: principles and good practice guidance for practitioners considering restraint in residential care settings
- Author:
- MENTAL WELFARE COMMISSION FOR SCOTLAND
- Publisher:
- Mental Welfare Commission for Scotland
- Publication year:
- 2006
- Pagination:
- 40p.
- Place of publication:
- Edinburgh
This guidance sets out a number of general principles that the Commission believes apply to the use of restraint in any setting. These general principles should be taken into account when restraint is being considered in the care of any person who has a mental learning difficulty, dementia or other mental disorder. The guidance aims to help guide thinking on the use of restraint and encourage all care staff to consider their actions and the impact that those actions may have on the people they are caring for. This guidance cannot give answers to every situation residents and care staff find themselves in. The document also includes sections on particular types of restraint and interventions that can lead to the freedom of movement and liberty of residents being limited in some way.