Purpose: The purpose of this paper is to consider the issue of types of assessment offered by services for people with learning disabilities from the research study “A Comparison of Dementia Assessment Services for People with Intellectual Disabilities”. Design/methodology/approach: The commentary is based on a review of the associated literature. Findings: Assessment for possible dementia is a complex activity. The gold standard is to ensure that the assessment process is comprehensive including both direct assessments with the person and gathering information from key informants. The issues in not adopting this methodology are considered, as are issues in what services and assessments are called. Originality/value: The commentary considers the studies presented from a practitioner perspective.
(Edited publisher abstract)
Purpose: The purpose of this paper is to consider the issue of types of assessment offered by services for people with learning disabilities from the research study “A Comparison of Dementia Assessment Services for People with Intellectual Disabilities”. Design/methodology/approach: The commentary is based on a review of the associated literature. Findings: Assessment for possible dementia is a complex activity. The gold standard is to ensure that the assessment process is comprehensive including both direct assessments with the person and gathering information from key informants. The issues in not adopting this methodology are considered, as are issues in what services and assessments are called. Originality/value: The commentary considers the studies presented from a practitioner perspective.
(Edited publisher abstract)
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.
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;
This handbook describes how to run facilitated peer support groups where people use their understanding and experiences to help each other, aiming to help people with learning disabilities experience a greater sense of well-being as they grow older. It covers starting a group; planning, starting and ending each session; and provides ideas to help people feel engaged. The handbook also outlines 20 participative activities to engage people to think and talk about the changes that may occur as they get older. The activities have been tested in group sessions in two locations: a shared house for six people with learning disabilities where one of the housemates had developed dementia and a small day centre for older people with learning disabilities where one person had dementia.
(Edited publisher abstract)
This handbook describes how to run facilitated peer support groups where people use their understanding and experiences to help each other, aiming to help people with learning disabilities experience a greater sense of well-being as they grow older. It covers starting a group; planning, starting and ending each session; and provides ideas to help people feel engaged. The handbook also outlines 20 participative activities to engage people to think and talk about the changes that may occur as they get older. The activities have been tested in group sessions in two locations: a shared house for six people with learning disabilities where one of the housemates had developed dementia and a small day centre for older people with learning disabilities where one person had dementia.
(Edited publisher abstract)
Subject terms:
peer support, learning disabilities, ageing, dementia, support groups;
Advances in Mental Health and Intellectual Disabilities, 4(4), December 2010, pp.48-52.
Publisher:
Emerald
Dementia is a condition that involves inevitably progressive deficits in numerous cognitive domains, including thought, language, memory, understanding and judgement. It is more than 4 times as prevalent in people with intellectual disabilities as in the general population. This paper explains the main difficulties in dealing with dementia in people with intellectual disabilities, including late diagnosis, assessment and management issues. Diagnosis of the condition in people with intellectual disabilities is often difficult due to lack of baseline skill assessment, high staff turnover in supported accommodation and low expectations of capabilities. Current National Institute for Health and Clinical Excellence (NICE) guidelines on anti-dementia medication state that treatment should not be initiated until the condition has reached moderate severity. Determining whether symptoms are at this stage in people with intellectual disabilities is difficult because their skill level is already impaired. An accurate and extensive record of baseline skill levels in people with intellectual disabilities is therefore crucial, and regular comparison with baseline is key to early diagnosis of dementia.
Dementia is a condition that involves inevitably progressive deficits in numerous cognitive domains, including thought, language, memory, understanding and judgement. It is more than 4 times as prevalent in people with intellectual disabilities as in the general population. This paper explains the main difficulties in dealing with dementia in people with intellectual disabilities, including late diagnosis, assessment and management issues. Diagnosis of the condition in people with intellectual disabilities is often difficult due to lack of baseline skill assessment, high staff turnover in supported accommodation and low expectations of capabilities. Current National Institute for Health and Clinical Excellence (NICE) guidelines on anti-dementia medication state that treatment should not be initiated until the condition has reached moderate severity. Determining whether symptoms are at this stage in people with intellectual disabilities is difficult because their skill level is already impaired. An accurate and extensive record of baseline skill levels in people with intellectual disabilities is therefore crucial, and regular comparison with baseline is key to early diagnosis of dementia.
Dementia: the International Journal of Social Research and Practice, 4(4), November 2005, pp.571-586.
Publisher:
Sage
This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia - younger people (i.e. those under the age of 65) and those from minority ethnic groups.
This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia - younger people (i.e. those under the age of 65) and those from minority ethnic groups.
Subject terms:
learning disabilities, social model, carers, black and minority ethnic people, dementia;
Journal of Policy and Practice in Intellectual Disabilities, 16(1), 2019, pp.88-92.
Publisher:
Wiley
With a rise in the life expectancy of people with intellectual disabilities in recent decades, there has been a related increase in rates of dementia. As a chronic, progressive condition dementia presents opportunities for provision of pre‐planned end‐of‐life care. This audit focussed on the level of compliance with pre‐defined end‐of‐life care standards for a group of patients with intellectual disabilities and severe dementia. Compliance with pre‐defined end‐of‐life care standards was found to be highly variable. Areas of high compliance included all 32 patients having access to their primary care physician, 84% (n = 27) having regular review by their psychiatrist and 94% (n = 30) having had a review of their medication regime. In contrast, there was only clear evidence of patient involvement in advance planning for 25% (n = 8) of patients, with similarly few patients having agreement on the use of cardiopulmonary resuscitation (22%; n = 7) a plan for supporting their carers and/or family (13%; n = 4) or a documented preferred place of death (22%; n = 7). Possible reasons for variable compliance include limited awareness of end‐of‐life care standards among ID professionals and carers, difficulties in discerning when patients are approaching the end of their lives and limited involvement of both the patient and palliative care professionals in decision‐making approaches. There is a clear need for a more structured approach for the assessment and management of these patients, and recently published guidance may help support ID professionals in this regard.
(Edited publisher abstract)
With a rise in the life expectancy of people with intellectual disabilities in recent decades, there has been a related increase in rates of dementia. As a chronic, progressive condition dementia presents opportunities for provision of pre‐planned end‐of‐life care. This audit focussed on the level of compliance with pre‐defined end‐of‐life care standards for a group of patients with intellectual disabilities and severe dementia. Compliance with pre‐defined end‐of‐life care standards was found to be highly variable. Areas of high compliance included all 32 patients having access to their primary care physician, 84% (n = 27) having regular review by their psychiatrist and 94% (n = 30) having had a review of their medication regime. In contrast, there was only clear evidence of patient involvement in advance planning for 25% (n = 8) of patients, with similarly few patients having agreement on the use of cardiopulmonary resuscitation (22%; n = 7) a plan for supporting their carers and/or family (13%; n = 4) or a documented preferred place of death (22%; n = 7). Possible reasons for variable compliance include limited awareness of end‐of‐life care standards among ID professionals and carers, difficulties in discerning when patients are approaching the end of their lives and limited involvement of both the patient and palliative care professionals in decision‐making approaches. There is a clear need for a more structured approach for the assessment and management of these patients, and recently published guidance may help support ID professionals in this regard.
(Edited publisher abstract)
Subject terms:
end of life care, dementia, learning disabilities, inspection, advance care planning, care planning, assessment;
MENTAL HEALTH FOUNDATION, FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES
Publishers:
Mental Health Foundation, Foundation for People with Learning Disabilities
Publication year:
2018
Pagination:
20
Place of publication:
London
The briefing highlights the need to develop quality in practice for people ageing with learning disabilities and living with dementia. It highlights that although people with a learning disability are three times more likely to develop dementia than the rest of the population, their needs are rarely mentioned in current Government strategy. It identifies key elements that constitute a good service for people with learning disabilities that develop dementia and presents recommendations from the Dementia Action Alliance. These include the importance of early diagnosis and person-centred care; joint working between health and social care professionals; the need for improvements in commissioning; and for people to be supported in their homes as long as possible. The report calls for policy makers and services to make sure the needs of people with learning disabilities are clearly recognised and that they are provided with appropriate and targeted support as they age and if they develop dementia.
(Edited publisher abstract)
The briefing highlights the need to develop quality in practice for people ageing with learning disabilities and living with dementia. It highlights that although people with a learning disability are three times more likely to develop dementia than the rest of the population, their needs are rarely mentioned in current Government strategy. It identifies key elements that constitute a good service for people with learning disabilities that develop dementia and presents recommendations from the Dementia Action Alliance. These include the importance of early diagnosis and person-centred care; joint working between health and social care professionals; the need for improvements in commissioning; and for people to be supported in their homes as long as possible. The report calls for policy makers and services to make sure the needs of people with learning disabilities are clearly recognised and that they are provided with appropriate and targeted support as they age and if they develop dementia.
(Edited publisher abstract)
Subject terms:
dementia, learning disabilities, policy, government policy, person-centred care, commissioning, access to services;
British Journal of Learning Disabilities, 44(3), 2016, p.175–181.
Publisher:
Wiley
Memory cafes have been found to normalise experiences of dementia and provide access to an accepting social network. People with learning disabilities are at increased risk of developing dementia, but the possible benefits of attending a memory cafe are not known. This study evaluates a 12-week pilot memory cafe for people with learning disabilities in terms of adaptations required and benefits of attending. Results indicate that affect levels significantly improved across the course of the cafe and that communication, interaction, alertness and participation in other activities improved outside the cafe. Future plans for attendance at memory cafes for people with learning disabilities are discussed.
(Publisher abstract)
Memory cafes have been found to normalise experiences of dementia and provide access to an accepting social network. People with learning disabilities are at increased risk of developing dementia, but the possible benefits of attending a memory cafe are not known. This study evaluates a 12-week pilot memory cafe for people with learning disabilities in terms of adaptations required and benefits of attending. Results indicate that affect levels significantly improved across the course of the cafe and that communication, interaction, alertness and participation in other activities improved outside the cafe. Future plans for attendance at memory cafes for people with learning disabilities are discussed.
(Publisher abstract)
Subject terms:
memory, dementia, social networks, learning disabilities, evaluation, communication;
British Journal of Learning Disabilities, 44(2), 2016, pp.87-94.
Publisher:
Wiley
The following article details a piece of service development work undertaken as part of the Plymouth Down Syndrome Screening Programme. The work aimed to review the use of three measures assessing executive functioning skills used within the Programme as well as with people without Down syndrome. Three tasks assessing executive functioning (the Weigl, Cats and Dogs, and verbal fluency task) were evaluated. The Weigl task was removed from the Programme and analyses due to floor effects and difficulties in administration. Correlation analyses showed relationships between the Cats and Dogs task and two other measures, cognitive skills as reported by carers and object memory. No relationships were found between the verbal fluency task and other measures. A full consideration is given to these findings, and implications for future practice are considered. Further data are needed to make full conclusions about the value of the tasks in predicting dementia in people with intellectual disabilities and people with Down syndrome. Further recommendations concerning the development of the assessment of executive skills are also considered.
(Publisher abstract)
The following article details a piece of service development work undertaken as part of the Plymouth Down Syndrome Screening Programme. The work aimed to review the use of three measures assessing executive functioning skills used within the Programme as well as with people without Down syndrome. Three tasks assessing executive functioning (the Weigl, Cats and Dogs, and verbal fluency task) were evaluated. The Weigl task was removed from the Programme and analyses due to floor effects and difficulties in administration. Correlation analyses showed relationships between the Cats and Dogs task and two other measures, cognitive skills as reported by carers and object memory. No relationships were found between the verbal fluency task and other measures. A full consideration is given to these findings, and implications for future practice are considered. Further data are needed to make full conclusions about the value of the tasks in predicting dementia in people with intellectual disabilities and people with Down syndrome. Further recommendations concerning the development of the assessment of executive skills are also considered.
(Publisher abstract)
Subject terms:
Downs syndrome, learning disabilities, dementia, diagnosis, assessment, service development, screening;