How do dementia researchers view support tools for informed consent procedures of persons with dementia?

Wied, Theresa S.; Poth, Aoife; Pantel, Johannes; Oswald, Frank; Haberstroh, Julia

doi:10.1007/s00391-020-01779-2

Cited by 5 publications

(4 citation statements)

References 9 publications

(17 reference statements)

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“…In addition, one could use supported decision-making strategies that facilitate the understanding and retrieval of verbal information, such as the presentation of information in short, thematically grouped segments in plain language, augmented by written summaries. For more information on strategies for supported decision-making, see Wied et al (2019), Wied, Haberstroh, et al (2021), and Wied, Poth, et al (2021). This requires of the medical personnel a resource-oriented attitude toward PwD as well as the readiness for ongoing training on the topic of the capacity to consent and resource-oriented communication.…”

Section: Discussionmentioning

confidence: 99%

The Role of Different Aspects of Communication Behavior in the Assessment of Capacity to Consent

et al. 2023

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Any medical treatment that interferes with physical integrity requires the informed consent of a patient capable of such consent. For people with dementia, the capacity to consent is questioned even in the early course of the disease. Particularly diagnostic instruments like the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) often deny people with dementia the capacity to consent because of high confounding of the results with patients’ verbal abilities. To date, it remains unclear whether not only verbal but also nonverbal communication is associated with assessments of capacity to consent. The current study investigates associations between patients’ verbal and nonverbal communication behaviors as assessed by the measure for Communication Behavior in People with Dementia in Ambulant Settings (CODEMamb) and capacity to consent as assessed by the MacCAT-T. We expected the strongest positive associations for verbal communication behaviors compared to nonverbal communication behaviors. Data of N = 43 patients with dementia ( n = 8 capable of consent) were collected at two different German psychiatric clinics. The results show small to moderate correlations between the overall scores of CODEMamb and MacCAT-T. As expected, correlations were strongest for the verbal CODEMamb subscale. The results support current findings on the dependency of the MacCAT-T on verbal communication. Based on the findings, the discussion addresses how people with dementia can be enabled to make self-determined medical treatment decisions.

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Section: Discussionmentioning

confidence: 99%

The Role of Different Aspects of Communication Behavior in the Assessment of Capacity to Consent

et al. 2023

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“…This evaluation was based on problem-centered interviews with every ECP participant. An additional small study was conducted, to investigate dementia researchers view on the developed tools ( 25 ). In brief, we performed an online survey with 19 dementia researchers from Germany and Portugal and evaluated the tools in terms of 4 implementation criteria.…”

Section: Discussionmentioning

confidence: 99%

Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture

et al. 2021

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The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD.

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“…A study that addressed whether PWD can give informed consent to participate in research reported that they could decide through the simplified decision-making process of choosing between options. These methods reduced their difficulty in understanding and interpreting by complementing their cognitive functions and enabling decision-making on their part [61], thereby supporting their autonomy. Ultimately, maintaining the autonomy of PWD leads to the preservation of their sense of personhood.…”

Section: Discussionmentioning

confidence: 99%

Personhood Communication with Persons with Dementia: Concept Analysis

Kim

Song

2021

J Korean Gerontol Nurs

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Purpose: This paper aimed to clarify the meaning of personhood communication with persons with dementia, by identifying its attributes.Methods: Walker and Avant’s concept analysis method was employed. A literature review was performed using salient medical and health databases such as PubMed, Embase, and CINAHL between 1988 to June 2020. The literature review employed keywords such as “personhood”, “communication”, and “dementia”.Results: Personhood communication with persons with dementia is defined as providing social interaction based on their residual capacities, with adjustments being made in light of their remaining communication abilities, attentiveness to their emotions and respect for their individuality being shown, and decision-making rights being maintained.Conclusion: At the core of personhood communication is respect for persons with dementia and the goal of enabling them to be valid members of society. Further research is needed on the development of educational programs that impart the attributes of personhood communication with persons with dementia.

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How do dementia researchers view support tools for informed consent procedures of persons with dementia?

Cited by 5 publications

References 9 publications

The Role of Different Aspects of Communication Behavior in the Assessment of Capacity to Consent

The Role of Different Aspects of Communication Behavior in the Assessment of Capacity to Consent

Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture

Personhood Communication with Persons with Dementia: Concept Analysis

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