Advance directives in dementia research: The opinions and arguments of clinical researchers − an empirical study

Jongsma, Karin; Vathorst, Suzanne van de

doi:10.1177/1747016114523422

Cited by 15 publications

(13 citation statements)

References 23 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Effective research and treatment of dementia, and improving the quality of life and promoting social inclusion of persons with dementia have been identified as a global public health priority by the World Health Organization [12]. Yet conducting research into these matters presents complex ethical and methodological issues [13, 14]. For example, while obtaining an Advance Research Directive (ARD) is still considered a valid consent in the first stages of dementia, ethics review committees are often reluctant to permit even qualitative methods studies to be conducted on people in advanced stages of dementia.…”

Section: Resultsmentioning

confidence: 99%

Mini research projects as a mechanism to improve the quality of dementia care

Golander

2019

Isr J Health Policy Res

View full text Add to dashboard Cite

Several models have been proposed to connect academia and practice in order to improve long-term care. In this paper we propose and describe the “Mini-Research Group” as an alternative model of such collaboration. The formation of mini-research groups was the unplanned by-product of a longitudinal action research project headed by the late Prof. Rebecca Bergman, a prominent nursing leader from the Department of Nursing at Tel-Aviv University. It involved a two-stage project aimed at developing, and later implementing, a specific tool to evaluate the quality of care provided in geropsychiatric units and to design a nursing intervention which entailed an improved model for care in specialized geropsychiatric units for persons with dementia. Initially, this article describes the projects that led to the development of mini-research groups, and then continues to describe several mini-research projects, focusing on the research questions which emerged from practice as well as the variety of methodologies used. Finally, we discuss the ways in which mini- research groups contributed to the quality of care for persons with dementia, benefited their families, professional staff, faculty participants, and advanced policy development. We argue that in light of the present array of ethical and legal restrictions which inhibit the recruitment of participants, using mini-research groups combined of practitioners and researchers, can provide a pragmatic solution, not only to overcome these barriers, but to improve the quality of care, stimulate clinical dementia research, and promote new insights into the lives of persons with dementia.

show abstract

Section: Resultsmentioning

confidence: 99%

Mini research projects as a mechanism to improve the quality of dementia care

Golander

2019

Isr J Health Policy Res

View full text Add to dashboard Cite

show abstract

“…There is a difference between ‘choosing’ and ‘losing’ abilities and preferences. Even though a patient with dementia might seem to behave similar to a person who has chosen to drop his former beliefs, it is highly questionable whether the patient with dementia and the person who has willingly dropped his beliefs should also be treated in the same manner 12. We have no reason to follow a prior preference that was chosen to be dropped, but it is less clear that the same thing can be said of a preference that is lost due to dementia.…”

Section: Competence and Decision-makingmentioning

confidence: 99%

Dementia and advance directives: some empirical and normative concerns

2018

View full text Add to dashboard Cite

The authors of the paper 'Advance euthanasia directives: a controversial case and its ethical implications' articulate concerns and reasons with regard to the conduct of euthanasia in persons with dementia based on advance directives. While we agree on the conclusion that there needs to be more attention for such directives in the preparation phase, we disagree with the reasons provided by the authors to support their conclusions. We will outline two concerns with their reasoning by drawing on empirical research and by providing reasons that contradict their assumptions about competence of people with dementia and the (un)importance of happiness in reasoning about advance directives of people with dementia. We will draw attention to the important normative questions that have been overstepped in their paper, and we will outline why further research is required.

show abstract

“…Netherlands. In a paper [19] they reported the results of a qualitative study exploring the opinions of dementia researchers. The authors were particularly interested in mapping the possibilities and constraints of ARDs.…”

Section: Substantial Research On Ards Has Been Conducted By Jongsma Amentioning

confidence: 99%

Advance Research Directives: Avoiding Double Standards

Heinrichs

2020

Preprint

View full text Add to dashboard Cite

Background: Advance research directives (ARD) have been suggested to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). ARDs, therefore, run the risk of introducing an ethically problematic double standard. Methods: This paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include “type disclosure” can be acceptable under suitable circumstances. Discussion: Such an approach raises objections, two of which are especially important. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach. Conclusion: The approach presented in this paper avoids introducing a double-standard for particular types of research such as dementia research. It is, therefore, more suitable for the implementation of ARDs than established approaches.

show abstract

Advance directives in dementia research: The opinions and arguments of clinical researchers − an empirical study

Cited by 15 publications

References 23 publications

Mini research projects as a mechanism to improve the quality of dementia care

Mini research projects as a mechanism to improve the quality of dementia care

Dementia and advance directives: some empirical and normative concerns

Advance Research Directives: Avoiding Double Standards

Contact Info

Product

Resources

About