scholarly journals Unethical governance: capacity legislation and the exclusion of people diagnosed with dementias from research

2020 ◽  
pp. 174701612098202
Author(s):  
James Rupert Fletcher
Keyword(s):  
Burden Of Proof ◽  
Institutional Research ◽  
Governance Capacity ◽  
Enhanced Sensitivity ◽  
Unethical Practices ◽  
People With Dementia ◽  
Dementia Research ◽  
Procedural Ethics ◽  
Mental Capacity Act ◽  
Bureaucratic Constraints

This paper considers the potential for the Mental Capacity Act (MCA) of England and Wales to incentivise the exclusion of people with dementia from research. The MCA is intended to standardise and safeguard the inclusion of people with cognitive impairments in research. This entails various procedural requirements, which in pressurised research contexts can lead researchers to exclude people with dementia as a means of simplifying bureaucratic constraints. I consider the risks of an ‘unethical ethics’, wherein procedural ethics indirectly causes the exclusion of people with dementia from research, undermining historic successes toward increased inclusivity. I suggest several solutions, including enhanced sensitivity to impairments and shifting the burden of proof from justifying inclusion to justifying exclusion. The paper responds to the ‘ethics creep’ tradition in procedural ethics, and critical appraisals of capacity legislation in dementia research. This approach recognises that institutional research ethics is itself a major ethical concern and can unwittingly beget unethical practices. Dementia researchers must be alert to such unethical ethics.

scholarly journals Home care in dementia: The views of informal carers from a co-designed consultation

Dementia ◽  
2021 ◽  
pp. 147130122199050
Author(s):  
Elizabeth L Dalgarno ◽  
Vincent Gillan ◽  
Amy Roberts ◽  
Jean Tottie ◽  
David Britt ◽  
...  
Keyword(s):  
Home Care ◽  
Working Conditions ◽  
Public Involvement ◽  
Framework Analysis ◽  
Electronic Survey ◽  
The United Kingdom ◽  
People With Dementia ◽  
Dementia Research ◽  
Informal Carers ◽  
A Current

Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

scholarly journals A visual and creative approach to exploring people with dementia’s experiences of being students at a school in Denmark

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 786-804
Author(s):  
Alison Ward ◽  
Diana Schack Thoft ◽  
Helen Lomax ◽  
Jacqueline Parkes
Keyword(s):  
Early Stage ◽  
Research Process ◽  
Photo Elicitation ◽  
Learning And Development ◽  
Group Discussions ◽  
Home Life ◽  
Life Long Learning ◽  
People With Dementia ◽  
Dementia Research

In dementia research, there is limited knowledge about how people with dementia experience their daily life including how they experience the services they attend. This means a lack of knowledge about how people with dementia judge the quality of services provided for them. In this study visual and creative methods were used to understand the experience of people with early stage dementia who attend an adult school, Voksenskolen for Undervisning og Kommunikation (VUK) in Denmark. The study explored the students’ experience of being a student at VUK and what it means to engage in life-long learning. Alongside the aim to evaluate the service provided for them, seen from their perspective. Photo-elicitation was used, with cameras provided to each student, who took photographs of their school and home life. Students’ photographs were used to support focus group discussions, with the images integral to the process of talking about and recalling stories. Ten students were recruited to participate in four weekly sessions. Two groups were run with five students in each group. Each session was video recorded, these sessions were then transcribed and analysed using Braun and Clarke’s thematic analysis. Visual images were found to support the students’ memory of current experiences and prompted reminiscences about the past, leading to rich descriptions about being a student at VUK and their experiences of living with dementia. Being able to attend VUK was found to be important for these students with dementia, providing them with a sense of purpose, a way to support their cognitive function and also to develop new friendships. The method provided a way for people with dementia to be active in the research process and provide their perspective about a novel service, which promotes an ethos of learning and development.

scholarly journals Cross-cultural adaptation of the German version of the Quality of Life in Alzheimer's Disease scale - Nursing Home version (QoL-AD NH)

2016 ◽  
Vol 28 (8) ◽  
pp. 1399-1400 ◽  
Author(s):  
Martin Nikolaus Dichter ◽  
Eva-Maria Wolschon ◽  
Gabriele Meyer ◽  
Sascha Köpke
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Community Dwelling ◽  
Positive Effects ◽  
People With Dementia ◽  
The Us ◽  
Dementia Research ◽  
Almost All

Dementia is a chronic and currently incurable syndrome. Therefore, quality of life (QoL) is a major goal when caring for people with dementia (Gibson et al., 2010) and a major outcome in dementia research (Moniz-Cook et al., 2008). The measurement of QoL, especially proxy-rating, is challenging because of the proxy-perspective (Pickard and Knight, 2005), reliability (Dichter et al., 2016), validity (O'Rourke et al., 2015), and responsiveness (Perales et al., 2013). Probably due to these challenges, it has not been possible to show positive effects for QoL in almost all non-pharmacological interventions for people with dementia (Cooper et al., 2012). One recommended (Moniz-Cook et al., 2008) and frequently used instrument is the Quality of Life in Alzheimer's Disease scale (QoL-AD), which was originally developed in the US for community-dwelling people with dementia. The QoL-AD consists of 13 items based on a 4-point Likert scale ranging from “1”=poor to “4”=excellent (Logsdon et al., 1999). The original instrument has been adapted for people living in nursing homes (NH) by Edelmann et al. (2005).

Northern Ireland

2019 ◽  
pp. 203-210
Author(s):  
Emma Louise Cunningham ◽  
Stephen Todd ◽  
Conor Barton ◽  
Peter Passmore
Keyword(s):  
Northern Ireland ◽  
Dementia Care ◽  
Mental Capacity ◽  
Therapeutic Interventions ◽  
Coordination Of Care ◽  
Strategic Issues ◽  
Code Of Practice ◽  
People With Dementia ◽  
Mental Capacity Act ◽  
Successful Production

The Northern Ireland (NI) Dementia Strategy was launched in November 2011, with similar strategic issues and priorities to those identified in the English, Welsh, and Scottish documents. There are a number of aspects of dementia care in NI of which the province can be proud, several of which are outlined. One of the major achievements has been the successful production of the Mental Capacity Act, which awaits implementation and publication of a code of practice for clinicians. Other challenges include the coordination of care for people with dementia across the healthcare spectrum and the anticipation and incorporation into practice of evolving diagnostic and therapeutic interventions.

The lines are open: An artist’s experience of working with dementia research

Dementia ◽  
2017 ◽  
Vol 17 (6) ◽  
pp. 755-762 ◽  
Author(s):  
Charles R Harrison
Keyword(s):  
Potential Role ◽  
Neuropsychological Testing ◽  
Artistic Practice ◽  
Art Making ◽  
People With Dementia ◽  
Creative Art ◽  
Dementia Research ◽  
Visual Artist

This paper offers a first-hand account from a visual artist working with people living with a rare dementia. It explores the processes and motivations involved in situating an individual artistic practice in the field of dementia research. The paper discusses the potential role of creative art-making for neuropsychological testing and some of the complexities of interpretation that this involves. This account also highlights the ways in which working with people with dementia can be personally and artistically transformative.

A methodological approach to accessing informal dementia care

2019 ◽  
Vol 23 (4) ◽  
pp. 228-240
Author(s):  
James Rupert Fletcher
Keyword(s):  
Design Methodology ◽  
Methodological Approach ◽  
Dementia Care ◽  
Lessons Learned ◽  
Content Type ◽  
Complex Sampling ◽  
Institutional Settings ◽  
People With Dementia ◽  
Dementia Research ◽  
Methodological Approaches

Purpose A growing body of research seeks to include people with dementia as both participants and co-designers. It is also increasingly recognized that dementia research must pay greater attention to informal care, provided by family and friends in non-institutional settings, because this is the situation of most people affected by dementia. Accessing these kinds of naturalistic care sites through meaningfully inclusive studies can be challenging for researchers in many fields. The paper aims to discuss this issue. Design/methodology/approach This paper describes a methodology designed to facilitate meaningful inclusion and access to hard-to-reach dementia care networks. It describes the implementation of this methodology in the field, the problems that emerged and the lessons learned. Findings A two-step sampling approach was used. People with dementia were sampled through organizations unrelated to dementia. Care networks were sampled through ecomapping with people with dementia. The strategy successfully accessed the desired population, but it was labour-intensive and biased the sample in several respects. Originality/value It is hoped that this outline will encourage further reflection and discussion regarding methodological approaches to complex sampling and recruitment issues in dementia research.

Memory and communication support in dementia: research-based strategies for caregivers

2010 ◽  
Vol 23 (2) ◽  
pp. 256-263 ◽  
Author(s):  
Erin R. Smith ◽  
Megan Broughton ◽  
Rosemary Baker ◽  
Nancy A. Pachana ◽  
Anthony J. Angwin ◽  
...  
Keyword(s):  
Knowledge Translation ◽  
Research Evidence ◽  
Speech Pathology ◽  
Communication Support ◽  
Caregiver Education ◽  
People With Dementia ◽  
Consumer Feedback ◽  
Dementia Research ◽  
Person With Dementia ◽  
With Memory

ABSTRACTBackground: Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers.Methods: From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education.Results: The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies.Conclusion: Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.

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