This report explores the pain management needs of people with a learning difficulty who have dementia. People with a learning difficulty are living longer. This increased longevity brings with it the conditions and illnesses of older age, such as dementia. It is known that amongst people in the general population who have dementia there is inadequate pain recognition and treatment. This report has identified similar trends in pain management amongst people with a learning difficulty and dementia. The report explores knowledge and practice in relation to pain recognition and management amongst direct support staff, members of community learning disability teams and general practitioners. It also examines the understanding and experiences of pain amongst people with a learning difficulty and dementia. It identifies the dilemmas and obstacles to effective pain management, and reports on examples of good practice. The authors make clear recommendations for practitioners and service providers. The report found that the pain experiences and management of people with a learning difficulty who have dementia mirrored findings in relation to people in the general population. It did, however, identify extra and compounding issues in relation to people with a learning difficulty. The findings in this report will be of interest to service providers and direct practitioners in health, housing, social care and social work.
This report explores the pain management needs of people with a learning difficulty who have dementia. People with a learning difficulty are living longer. This increased longevity brings with it the conditions and illnesses of older age, such as dementia. It is known that amongst people in the general population who have dementia there is inadequate pain recognition and treatment. This report has identified similar trends in pain management amongst people with a learning difficulty and dementia. The report explores knowledge and practice in relation to pain recognition and management amongst direct support staff, members of community learning disability teams and general practitioners. It also examines the understanding and experiences of pain amongst people with a learning difficulty and dementia. It identifies the dilemmas and obstacles to effective pain management, and reports on examples of good practice. The authors make clear recommendations for practitioners and service providers. The report found that the pain experiences and management of people with a learning difficulty who have dementia mirrored findings in relation to people in the general population. It did, however, identify extra and compounding issues in relation to people with a learning difficulty. The findings in this report will be of interest to service providers and direct practitioners in health, housing, social care and social work.
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.
British Journal of Learning Disabilities, 36(1), March 2008, pp.6-12.
Publisher:
Wiley
This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older.
This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older.
Subject terms:
learning disabilities, user views, ageing, attitudes, dementia;
Learning Disability Today, February 2009, pp.34-36.
Publisher:
Pavilion
Place of publication:
Hove
The research reported in this paper explores the pain experiences amongst people with a learning disability who also have dementia. The paper outlines the additional issues that need to be taken into consideration when providing care for someone with a learning disability and dementia. Areas discussed include: misunderstanding behaviour that is 'challenging', problems with communication, lack of staff knowledge about the conditions of older age and the impact of dementia, and prescription of medication.
The research reported in this paper explores the pain experiences amongst people with a learning disability who also have dementia. The paper outlines the additional issues that need to be taken into consideration when providing care for someone with a learning disability and dementia. Areas discussed include: misunderstanding behaviour that is 'challenging', problems with communication, lack of staff knowledge about the conditions of older age and the impact of dementia, and prescription of medication.
Subject terms:
learning disabilities, medication, older people, pain, care workers, communication, dementia;
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 Dementia Care, 11(1), January 2003, pp.27-29.
Publisher:
Hawker
Reports on a study to explore the knowledge and views of people with a learning disability on dementia. The study also gathered views of people with learning disabilities on a booklet explaining dementia, developed with one of the researchers in collaboration with the Scottish Down's Syndrome Association.
Reports on a study to explore the knowledge and views of people with a learning disability on dementia. The study also gathered views of people with learning disabilities on a booklet explaining dementia, developed with one of the researchers in collaboration with the Scottish Down's Syndrome Association.
Subject terms:
learning disabilities, user views, access to information, ageing, attitudes, dementia, diagnosis;
This training pack is aimed at staff and volunteers supporting people with learning difficulties who have or may develop dementia. It is designed to be used by a trainer or lead person for training or to promote discussion. Each section is structured around 10 topics. Sections cover: learning difficulty and dementia; understanding behaviour; developing supportive environments; responding to pain; effective communication; meaningful activities; when a friend or relative has dementia; nutrition and hydration; night-time care; and palliative care. Each section includes suggested activities, information sheets and tools, and further reading. A DVD, which includes a short drama acted out by people with a learning difficulty and discussion on the drama, accompanies the training pack.
This training pack is aimed at staff and volunteers supporting people with learning difficulties who have or may develop dementia. It is designed to be used by a trainer or lead person for training or to promote discussion. Each section is structured around 10 topics. Sections cover: learning difficulty and dementia; understanding behaviour; developing supportive environments; responding to pain; effective communication; meaningful activities; when a friend or relative has dementia; nutrition and hydration; night-time care; and palliative care. Each section includes suggested activities, information sheets and tools, and further reading. A DVD, which includes a short drama acted out by people with a learning difficulty and discussion on the drama, accompanies the training pack.
Dementia: the International Journal of Social Research and Practice, 4(3), August 2005, pp.387-400.
Publisher:
Sage
The knowledge, experiences and skills of direct care staff working in care home settings are essential in ensuring a good quality of life and care for a person with an intellectual disability (ID) who develops dementia. Drawing on the findings of a wider study, the issues of training, support and the wider needs of staff when trying to support a resident who develops dementia are explored, specifically as relating to the role played by staff and the need to determine their experiences and related training needs. Following an introduction to the policy and practice context for working with people with an ID and dementia, and a brief description of the research method, the authors discuss the attitudes and practices of staff; supportive changes at an organizational level; and the knowledge and training needs of staff and specific gaps in knowledge. The authors argue that, within the policy and practice context of aiming to support residents to ‘age in place’, support for staff is a crucial aspect of ensuring that such an approach is effective and provides a coordinated approach to planning, resourcing and support.
The knowledge, experiences and skills of direct care staff working in care home settings are essential in ensuring a good quality of life and care for a person with an intellectual disability (ID) who develops dementia. Drawing on the findings of a wider study, the issues of training, support and the wider needs of staff when trying to support a resident who develops dementia are explored, specifically as relating to the role played by staff and the need to determine their experiences and related training needs. Following an introduction to the policy and practice context for working with people with an ID and dementia, and a brief description of the research method, the authors discuss the attitudes and practices of staff; supportive changes at an organizational level; and the knowledge and training needs of staff and specific gaps in knowledge. The authors argue that, within the policy and practice context of aiming to support residents to ‘age in place’, support for staff is a crucial aspect of ensuring that such an approach is effective and provides a coordinated approach to planning, resourcing and support.
Subject terms:
learning disabilities, organisations, quality of life, residential care, social care staff, training, attitudes, dementia;
This book explores the findings of a study which investigated the current models of practice for supporting people with learning difficulties and dementia. It looked at the key issues relating to people with learning difficulties with dementia living in care home settings and discovered some examples of best practice in care home provision. The contents include: experiences and issues for co-residents and relatives; experiences, knowledge and working practices of staff; hidden findings on environmental issues and issues in relation to pain; strategies for providing services when someone has to move. to providing personal details also improved relationships between the residential home and relatives.
This book explores the findings of a study which investigated the current models of practice for supporting people with learning difficulties and dementia. It looked at the key issues relating to people with learning difficulties with dementia living in care home settings and discovered some examples of best practice in care home provision. The contents include: experiences and issues for co-residents and relatives; experiences, knowledge and working practices of staff; hidden findings on environmental issues and issues in relation to pain; strategies for providing services when someone has to move. to providing personal details also improved relationships between the residential home and relatives.
Subject terms:
income support, learning disabilities, multiple disabilities, older people, residential care, residential social workers, staff, vulnerable adults, adults, dementia;