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How social care staff can support people with learning disabilities and dementia
- Author:
- PUBLIC HEALTH ENGLAND
- Publisher:
- Public Health England
- Publication year:
- 2017
- Pagination:
- 4
- Place of publication:
- London
This factsheet provides information on how social care staff can support people with learning disabilities and dementia. It covers recognising signs of dementia, sharing information about what a diagnosis of dementia means, and things social care staff can do. It is the 11th in a series of factsheets which show how social care staff can support the health needs of people with learning disabilities. The leaflet also includes a link to a supporting slide set that can be used by social care staff as a training resource. (Edited publisher abstract)
Dementia and learning disabilities: bridging the gap
- Author:
- KILLICK Emma
- Journal article citation:
- Journal of Dementia Care, 25(3), 2017, pp.20-21.
- Publisher:
- Hawker
People with learning disabilities can be at particular risk of developing dementia, but special challenges can arise in trying to support them. This article describes 'The Dementia Project' from learning disability charity MacIntyre and updates on its progress to date. The project is creating a range of learning and multi-media resources to help improve practice and care for people with learning disabilities living with dementia. The resources will be available when the project finishes in 2019. (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)
Service evaluation of a Specialist Memory Clinic for adults with ID in South Wales
- Authors:
- BAYLEY Amanda, AMOAKO Annika, EL-TAHIR Mohamed Omer
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 11(4), 2017, pp.145-154.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to discuss the findings of a service evaluation project of the Specialist Memory Clinic for people with intellectual disabilities in South Wales using the Dementia guidelines published by the British Psychological Society and the Royal College of Psychiatrists (BPS/RCPsych, 2015). Design/methodology/approach: Clinical audit using case notes of patients attending Memory Clinics during 2011 and 2015 benchmarked against best practice guidelines; carers feedback from Memory Clinic attendance; and evaluation of the training sessions to carers. Findings: Audit findings show full compliance with standards (100 per cent) except for the baseline assessment for people with Down syndrome. Carer’s evaluation and feedback was positive and constructive. Training evaluation indicates improvement in knowledge and positively received sessions. Research limitations/implications: The small number of people included and possibility of high motivated team may affect the service evaluation result. Practical implications: It is possible for the Community Learning Disability team to meet the standards published (BPS/RCPsych, 2015) through multidisciplinary working. Originality/value: Initial service evaluation completed after published guidelines for Dementia care by the BPS/RCPsych (2015). (Publisher abstract)
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)
An evaluation of a Singing for the Brain pilot with people with a learning disability and memory problems or a dementia
- Authors:
- WARD Alison R., Parkes Jacqueline
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 16(3), 2017, pp.360-374.
- Publisher:
- Sage
This paper presents the findings from a pilot project introducing Singing for the Brain into care centres with people with a learning disability and a form of dementia or memory problem. Through participant observations, patient and staff feedback, there was strong support for the use of Singing for the Brain with this client group, with participants reporting high levels of enjoyment and engagement in the sessions. The potential for these sessions to support communication, memory, social engagement and choice was reported by staff and participants. Whilst anecdotal reports also suggested the sessions had a positive impact on elevating mood over a sustained period of time. The pilot sessions are discussed in reference to the regular sessions run for people with dementia and comparisons drawn across the two approaches. Further evidence is required to understand the potential impact on participant's well-being from attending these sessions. (Publisher abstract)
Mental capacity and deprivation of liberty: summary
- Author:
- LAW COMMISSION
- Publisher:
- Law Commission
- Publication year:
- 2017
- Pagination:
- 29
- Place of publication:
- London
Summary of the Law Commission's final report into the review of the Mental Capacity and Deprivation of Liberty Safeguards (DoLS), which considered how the law should protect people who need to be deprived of their liberty in order to receive care or treatment and lack the capacity to consent to this. The review proposes that the DoLS should be replaced by a new scheme, the Liberty Protection Safeguards. This summary provides an overview of the recommendations and the case for reform. It outlines how the new system would operate, with a detailed explanation of some of the key aspects of the new scheme, including its scope, who they would apply to, and conditions for authorisation. (Edited publisher abstract)
Personality and behavioural changes do not precede memory problems as possible signs of dementia in ageing people with Down syndrome
- Authors:
- BLOK J.B., SCHEIRS J.G.M., THIJM N.S.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 32(12), 2017, pp.1257-1263.
- Publisher:
- Wiley
Objective: The objective was to find out whether changes in personality and adaptive functioning or memory processes decline first in ageing people with Down syndrome. Methods: The authors measured these variables cross-sectionally in a Dutch sample (22 to 62 years of age) of 68 institutionalised people with Down syndrome. Results: The scores on all the variables except one of the temperament scales were found to decline gradually with increasing age, but deterioration of episodic memory started earlier. Conclusions: The authors argued that a subset of their sample suffered from dementia. Furthermore, the data suggested that immediate memory impairment is one of the earliest signs of the disease in people with Down syndrome, just as it is in the general population. (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)