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Working alongside older people with a learning disability: informing and shaping research design
- Authors:
- HERRON Daniel, PRIEST Helena M., READ Sue
- Journal article citation:
- British Journal of Learning Disabilities, 43(4), 2015, pp.261-269.
- Publisher:
- Wiley
Background: There has been an increase in inclusive research in the learning disability field; however, this has not been reflected within learning disability and dementia research, where little is known from the perspective of people with learning disabilities. This paper will define inclusive research, explore reasons for the dearth of inclusive dementia research, and identify the challenges of conducting dementia research involving people with learning disabilities. Materials and Methods: Examples of working with people with learning disabilities to develop elements of a PhD research study will be detailed and critically discussed. Results: These experiences aided the creation of accessible material about dementia for a PhD research study. Subsequently, this helped to overcome challenges of communication within the research study and helped to promote the participation of people with learning disabilities and dementia. Conclusion: Sharing these ideas about how we worked together will help others who are seeking to engage and achieve more inclusive research practices with marginalised populations.
Decision time
- Author:
- LEASON Katie
- Journal article citation:
- Community Care, 5.05.05, 2005, pp.28-29.
- Publisher:
- Reed Business Information
The Mental Capacity Act 2005 should ensure that all people are able to make their own choices unless proven otherwise. Looks at the need for professionals to adjust quickly to the new provisions. Also looks at the role of the new independent mental capacity advocates.
The intersection of intellectual disability and dementia: report of the international summit on intellectual disability and dementia
- Authors:
- WATCHMAN Karen, JANICKI Matthew P.
- Journal article citation:
- Gerontologist, 59(3), 2019, pp.411-419.
- Publisher:
- Oxford University Press
An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13–14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. (Edited publisher abstract)
Viability of a dementia advocacy effort for adults with intellectual disability: using a national task group approach
- Authors:
- JANICKI Matthew P., KELLER Seth M.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 11(3), 2014, pp.176-191.
- Publisher:
- Wiley
The World Health Organization's report, Dementia: A Public Health Priority, noted that the number of people worldwide affected by dementia is significant and will continue to increase. The report called on nations to address dementia by developing national plans and undertaking public health initiatives. Special mention was made of the situation of people with intellectual disability, some of who manifest high risk for dementias. In the United States, the National Task Group on Intellectual Disabilities and Dementia Practices (the “NTG”) was created to ensure that the needs and interests of adults with intellectual and developmental disability who are affected by Alzheimer's disease and related dementias—as well as their families and friends—are taken into account as part of general-population dementia health and public policy efforts, particularly as noted in the U.S. National Plan to Address Alzheimer's Disease. To this end, the NTG's multifaceted advocacy efforts have included (1) identifying best practices for providing care and services to affected adults with intellectual disability; (2) developing and identifying a functional workable administrative dementia early detection and screening instrument; (3) producing educational materials useful to families, adults with intellectual disability, and nongovernmental organisations; and (4) furthering public policy initiatives on dementia as they affect adults with intellectual disability. This article describes the origins of this group, its functions and accomplishments, as well its role with respect to national dementia advocacy, as a prototype for other national efforts that can be used to promote the interests of adults with intellectual disability affected by dementia and improve the quality of their lives. Suggested are means for replication of such an effort in other national environments. (Edited publisher abstract)
Independent mental capacity advocates under the Mental Health Capacity Act 2005: Part 1
- Author:
- -
- Journal article citation:
- Openmind, 148, November 2007, pp.24-25.
- Publisher:
- MIND
Independent Mental Capacity Advocates (IMCAs) provide a new, independent safeguard for people who lack capacity to make certain important decisions and have no one to represent them. The article provides an overview of the IMCA service.
Following the IMCA trail
- Author:
- HAYES Derren
- Journal article citation:
- Community Care, 29.3.07, 2007, pp.24-25.
- Publisher:
- Reed Business Information
On the eve of a roll out of the Independent mental capacity advocate (IMCA) service, the author looks back at the development of the service and asks whether it will be up to the task.
Working with the Mental Capacity Act 2005
- Authors:
- RICHARDS Steven, MUGHAL Aasya F.
- Publisher:
- Matrix Training Associates
- Publication year:
- 2006
- Pagination:
- 44p.
- Place of publication:
- North Waltham
The Mental Capacity Act 2005 provides for the first time, a statutory framework for assessing whether a person has capacity to make decisions and defines how others can make decisions on their behalf. Its scope is wide-ranging involving decisions regarding personal welfare (care and treatment) and financial affairs. Statutory and non-statutory organisations providing health and social care for people who lack capacity will have to ensure that their policies and procedures comply with the Act from April 2007. This book provides a detailed explanation of the new law and its implications for working practice. It is written in an accessible style and is designed to be of maximum use to health and social care professionals so they feel confident using the Act in daily practice.
Easy read summary on the Mental Capacity Act code of practice
- Author:
- GREAT BRITAIN. Department for Constitutional Affairs
- Publisher:
- Great Britain. Department for Constitutional Affairs
- Publication year:
- 2006
- Pagination:
- 46p.
- Place of publication:
- London
This consultation paper invites comments on style and content from all interested parties on the draft Code of Practice for the Mental Capacity Act 2005. It provides questions on each of the 15 chapters so that responses may be tailored to areas of interest, as well as an overall question that provides for more general comments.
Eliciting user perspectives on what works
- Authors:
- STALKER Kirsten, GILLIARD Jane, DOWNS Murna G.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 14(2), February 1999, pp.120-134.
- Publisher:
- Wiley
This article considers how research with people with learning difficulties has developed a culture for hearing the views of service users. It outlines various methodologies, with considerations of their strengths and weaknesses. Then reviews the research in dementia care which features the subjective experience, and finally draws out lessons and identifies possible ways forward.
The right to advocacy: a review of how local authorities and NHS Boards are discharging their responsibilities under the Mental Health (Care and Treatment) (Scotland) Act 2003
- Author:
- MENTAL WELFARE COMMISSION FOR SCOTLAND
- Publisher:
- Mental Welfare Commission for Scotland
- Publication year:
- 2018
- Pagination:
- 53
- Place of publication:
- Glasgow
This report investigates access to independent advocacy services for people with mental health problems, learning disability, dementia and related conditions in Scotland. It is based on information received from health boards, local authorities, and from the new health and social care partnerships (HSCPs). The report also investigates whether the integrated children’s services plans of local authorities cover the provision of independent advocacy services for children and young people with mental illness, learning disability or related conditions. The results show that the planning and provision of advocacy services across Scotland is variable and lacks clarity. It found services for adults were often prioritised for those who were receiving compulsory care or treatment .There is a lack of clarity on which organisation is responsible for co-ordinating the preparation of strategic advocacy plans, and on how advocacy providers and people using advocacy services will be involved in planning. The report identifies significant gaps in service provision for children and young people, with some of the services not providing independent advocacy and very restricted eligibility criteria. (Edited publisher abstract)