This resource has been developed to help anyone supporting a person with learning difficulties who develops dementia. The ringbound pack contains a series of easily accessible, straightforward, practical and realistic guidance to provide good quality care. It is arranged in three sections: background, fact sheets and tools. Each of these sections is designed to be used alone or together with other parts of the pack.
This resource has been developed to help anyone supporting a person with learning difficulties who develops dementia. The ringbound pack contains a series of easily accessible, straightforward, practical and realistic guidance to provide good quality care. It is arranged in three sections: background, fact sheets and tools. Each of these sections is designed to be used alone or together with other parts of the pack.
Extended abstract:
Author
KERR Diana, WILKINSON Heather
Title
In the know: implementing good practice: information and tools for anyone supporting people with a learning disability and dementia.
Publisher
Pavillion, 2005
Summary
This resource has been developed to help anyone supporting a person with learning difficulties who develops dementia. The ringbound pack contains a series of easily accessible, straightforward, practical and realistic guidance to provide good quality care. It is arranged in three sections: background, fact sheets and tools. Each of these sections is designed to be used alone or together with other parts of the pack.
Context
Along with the rest of the population, people with learning difficulties are living longer, bringing all the illnesses and conditions of older age. One condition, which people with Down's syndrome are more likely to experience, is dementia. Providing effective, high-quality care for someone with learning difficulties who develops dementia is a highly-skilled role. Without support and information staff and carers can find the experience overwhelming, trying to react to changing needs. Their ability to cope is clearly influenced by their level of knowledge and their understanding of the impact of dementia.
Contents
Section 1 describes the background, method and how to use the pack, and also includes references and sources of further information. Section 2 contains fact sheets as follows: Dementia and people with learning difficulties – some basic information; Is this dementia?; Getting a diagnosis; Developing good communication with people with dementia; Developing life story work; Challenging behaviour: developing appropriate responses; Developing suitable environments; Supporting people to eat well; The later stages; and Supporting the friends and peers of the person with dementia. Section 3 consists of copiable ‘tools': Brain diagram; Alert signs; Record of prompting; Differential diagnosis chart; An example of a dementia diagnostic care pathway; Dos and don'ts; Suggestions for things to be included in life story work; Charter for good practice in life story work; Strategies to help deal effectively with challenging behaviour; Developing a suitable environment; Guidelines for helping people to eat well; and Taking care of skin when someone becomes bedridden or less active.
Working with Older People, 9(3), September 2005, pp.28-31.
Publisher:
Emerald
The authors report on a unique training programme which has equipped the Oxfordshire Learning Disability Trust to better support and understand its clients with learning disabilities and dementia. Reports on the experience of one of the Trust's clients whose life has consequently improved through better communication and understanding.
The authors report on a unique training programme which has equipped the Oxfordshire Learning Disability Trust to better support and understand its clients with learning disabilities and dementia. Reports on the experience of one of the Trust's clients whose life has consequently improved through better communication and understanding.
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)
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)
Subject terms:
learning disabilities, dementia, person-centred care, diagnosis, training;
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)
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)
Subject terms:
literature reviews, dementia, learning disabilities, care workers, training;
As people with learning disabilities live longer, their chances of developing dementia increase. This article explores what can be done to ensure they live well for longer with the condition. The article highlights the importance of providing training and education to the families of people caring for people with dementia and staff in the workforce. Other key issues include providing continuity of care, the importance of observational skills and good communication.
(Original abstract)
As people with learning disabilities live longer, their chances of developing dementia increase. This article explores what can be done to ensure they live well for longer with the condition. The article highlights the importance of providing training and education to the families of people caring for people with dementia and staff in the workforce. Other key issues include providing continuity of care, the importance of observational skills and good communication.
(Original abstract)
Advances in Mental Health and Intellectual Disabilities, 7(1), 2013, pp.27-39.
Publisher:
Emerald
Because of the relationships they build, support workers can play a vital role in recognising and attending to the mental health needs of service users with intellectual disabilities. However, many lack the knowledge, skills and confidence to identify and respond appropriately. This paper focuses on the mental health of older people with intellectual disabilities. Fourteen support workers, working in one UK county, completed a questionnaire in which three vignettes presented progressively worsening indicators of dementia in an older person with intellectual disabilities. Participants explained what they thought was happening and what action they would take. Few of the participants had any mental health training, and only one in relation to older people. They were generally poor at judging early and intermediate indicators of dementia, sometimes attributing these to changes in routine or difficulty in communicating needs. The support workers were able to identify more overt later signs but believed these advanced indicators to be the onset of dementia. Proposed action was however appropriate, for example observation and referral. Abuse was often considered as a causal factor. The authors believe that their findings demonstrate the need for training in the mental health needs of older people, in particular, the general and specific indicators and expected trajectory of dementia in this population.
Because of the relationships they build, support workers can play a vital role in recognising and attending to the mental health needs of service users with intellectual disabilities. However, many lack the knowledge, skills and confidence to identify and respond appropriately. This paper focuses on the mental health of older people with intellectual disabilities. Fourteen support workers, working in one UK county, completed a questionnaire in which three vignettes presented progressively worsening indicators of dementia in an older person with intellectual disabilities. Participants explained what they thought was happening and what action they would take. Few of the participants had any mental health training, and only one in relation to older people. They were generally poor at judging early and intermediate indicators of dementia, sometimes attributing these to changes in routine or difficulty in communicating needs. The support workers were able to identify more overt later signs but believed these advanced indicators to be the onset of dementia. Proposed action was however appropriate, for example observation and referral. Abuse was often considered as a causal factor. The authors believe that their findings demonstrate the need for training in the mental health needs of older people, in particular, the general and specific indicators and expected trajectory of dementia in this population.
Subject terms:
learning disabilities, older people, training, care workers, dementia, support workers;
Journal of Policy and Practice in Intellectual Disabilities, 6(4), December 2009, pp.267-275.
Publisher:
Wiley
This study aimed to explore care concerns in supporting people with a learning disability and advanced dementia, and to develop, deliver and evaluate an educational intervention with staff in learning disability settings and specialist palliative care services. Fourteen focus group interviews were conducted with staff across six learning disability services and one specialist palliative care provider in the greater Dublin area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre- and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "ageing in place," and the preparation for a "good death" including support for staff, peers and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross-service system in-service training on issues of addressing advanced dementia in people with learning disabilities.
This study aimed to explore care concerns in supporting people with a learning disability and advanced dementia, and to develop, deliver and evaluate an educational intervention with staff in learning disability settings and specialist palliative care services. Fourteen focus group interviews were conducted with staff across six learning disability services and one specialist palliative care provider in the greater Dublin area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre- and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "ageing in place," and the preparation for a "good death" including support for staff, peers and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross-service system in-service training on issues of addressing advanced dementia in people with learning disabilities.
Subject terms:
learning disabilities, palliative care, training, carers, dementia, dying;
Journal of Dementia Care, 14(3), May 2006, pp.17-19.
Publisher:
Hawker
This article describes a research project funded by the Joseph Rowntree Foundation (JRF) which was undertaken to explore the needs of people with learning disabilities and dementia, the obstacles to meeting their needs and examples of good practice. The study explored the experiences of 18 people with learning disabilities living in small-scale, community-based residential homes. The study also looked at the knowledge and experience of service providers, look at the impact of different models of provision, and to identify examples of good practice. The three models of care considered were: ageing in place (where individuals remain in their own accommodation); in place progression (where staff are trained and the environment developed to become increasingly specialised); and referral out (where the person is moved to a long-term nursing facility, usually outside of the learning disability service).
This article describes a research project funded by the Joseph Rowntree Foundation (JRF) which was undertaken to explore the needs of people with learning disabilities and dementia, the obstacles to meeting their needs and examples of good practice. The study explored the experiences of 18 people with learning disabilities living in small-scale, community-based residential homes. The study also looked at the knowledge and experience of service providers, look at the impact of different models of provision, and to identify examples of good practice. The three models of care considered were: ageing in place (where individuals remain in their own accommodation); in place progression (where staff are trained and the environment developed to become increasingly specialised); and referral out (where the person is moved to a long-term nursing facility, usually outside of the learning disability service).
Subject terms:
learning disabilities, models, needs, residential care, supported housing, training, dementia;
Journal of Integrated Care, 13(1), February 2005, pp.24-27.
Publisher:
Emerald
Outlines good practice in one locality which screens all adults with Down's syndrome. Reflects on patterns of accommodation, staff training needs and the implications of an integrated approach.
Outlines good practice in one locality which screens all adults with Down's syndrome. Reflects on patterns of accommodation, staff training needs and the implications of an integrated approach.
This report, produced in partnership by VODG, Alzheimer’s Society, Foundation for People with Learning Disabilities, MacIntyre and the National Care Forum (NCF), looks at how best to develop support and services for the growing number of people with a learning disability and dementia. It draws on the results of a workshop which explored how organisations are working to improve the quality of life of people with a learning disability and dementia and the challenges they are facing. The report address three key perspectives: policy, research and the practice. The policy perspective discusses the Prime Minister’s challenge on dementia 2020, what it means for care providers and what providers can do to improve their services. The research perspective focuses on a recent study to identify a biomarker to help identify those individuals who are most likely to benefit from treatment. The practice perspective highlights work carried out as part of the MacIntyre Dementia Project to support people with a learning disability and dementia. The report highlights the importance of timely diagnosis, of keeping people in familiar environments for as long as possible, of services designed to be responsive to the progressive nature of dementia, and of skills development for staff to enable them to support people with a learning disability and dementia.
(Edited publisher abstract)
This report, produced in partnership by VODG, Alzheimer’s Society, Foundation for People with Learning Disabilities, MacIntyre and the National Care Forum (NCF), looks at how best to develop support and services for the growing number of people with a learning disability and dementia. It draws on the results of a workshop which explored how organisations are working to improve the quality of life of people with a learning disability and dementia and the challenges they are facing. The report address three key perspectives: policy, research and the practice. The policy perspective discusses the Prime Minister’s challenge on dementia 2020, what it means for care providers and what providers can do to improve their services. The research perspective focuses on a recent study to identify a biomarker to help identify those individuals who are most likely to benefit from treatment. The practice perspective highlights work carried out as part of the MacIntyre Dementia Project to support people with a learning disability and dementia. The report highlights the importance of timely diagnosis, of keeping people in familiar environments for as long as possible, of services designed to be responsive to the progressive nature of dementia, and of skills development for staff to enable them to support people with a learning disability and dementia.
(Edited publisher abstract)
Subject terms:
dementia, learning disabilities, government policy, diagnosis, training, care providers, social care provision, research;