Dementia, Decision Making, and Capacity

Darby, R. Ryan; Dickerson, Bradford C.

doi:10.1097/hrp.0000000000000163

Cited by 55 publications

(37 citation statements)

References 69 publications

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“…However, free will is commonly discussed as it relates to social, legal, and moral responsibility for decisions, not just movement (3,4). It remains unknown whether the network of brain regions we identify as related to free will for movements is the same as that important for moral decision making (58)(59)(60), as prior studies have suggested important differences (30).…”

Section: Preliminary Extension Of Network Localization To Neuroimagingmentioning

confidence: 88%

Lesion network localization of free will

Darby

Joutsa

Burke

et al. 2018

Proc. Natl. Acad. Sci. U.S.A.

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126

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Our perception of free will is composed of a desire to act (volition) and a sense of responsibility for our actions (agency). Brain damage can disrupt these processes, but which regions are most important for free will perception remains unclear. Here, we study focal brain lesions that disrupt volition, causing akinetic mutism (n = 28), or disrupt agency, causing alien limb syndrome (n = 50), to better localize these processes in the human brain. Lesion locations causing either syndrome were highly heterogeneous, occurring in a variety of different brain locations. We next used a recently validated technique termed lesion network mapping to determine whether these heterogeneous lesion locations localized to specific brain networks. Lesion locations causing akinetic mutism all fell within one network, defined by connectivity to the anterior cingulate cortex. Lesion locations causing alien limb fell within a separate network, defined by connectivity to the precuneus. Both findings were specific for these syndromes compared with brain lesions causing similar physical impairments but without disordered free will. Finally, our lesion-based localization matched network localization for brain stimulation locations that disrupt free will and neuroimaging abnormalities in patients with psychiatric disorders of free will without overt brain lesions. Collectively, our results demonstrate that lesions in different locations causing disordered volition and agency localize to unique brain networks, lending insight into the neuroanatomical substrate of free will perception. free will | agency | volition | functional connectivity | lesions

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Section: Preliminary Extension Of Network Localization To Neuroimagingmentioning

confidence: 88%

Lesion network localization of free will

Darby

Joutsa

Burke

et al. 2018

Proc. Natl. Acad. Sci. U.S.A.

Self Cite

126

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“…The law assumes that people living with dementia have the capacity to make a particular decision at a specific time or in a specific situation unless there is contrary evidence [53]. To further add to this complex conundrum, capacity is context and decision-specific: a person living with dementia may retain the capacity for certain decisions, even if the capacity for other types of decisions is lost [54]. No application (targeted specifically at patients, analysed as part of this study) examined the capacity and/or competency of the user, who would be considered to be a vulnerable cohort in society.…”

Section: Discussionmentioning

confidence: 99%

Implementing Electric Consent Aimed at People Living with Dementia and Their Caregivers: Did We Forget Those Who Forget?

O’Connor

Twohig²,

O’Brien³

2021

Proceedings of the Annual Hawaii International Conference on System Sciences

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As policy flows down from law and/or regulation (e.g. GDPR) our individual privacy concerns give rise to demands on improving accessibility, awareness and comprehension, the topic of eConsent is becoming more prevalent. We provide a critical voice by considering, but also challenging, the underlying assumptions that the status quo of eConsent design and implementation is appropriate for all people in society. By answering "what eConsent characteristics are prevalent in the context of dementia applications?", this paper identifies that the "one size fits all" ethos for eConsent is not applicable in every context. As a result, a taxonomy that depicts the multifaceted concept of eConsent is proposed. It makes us aware of the different ethical, legal, social and technical implications of ICT use and provides an opportunity to create discourse in this area. It argues that future research examining the effectiveness of innovative ICTs must take the eConsent process into account.

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“…The significant contribution neuropsychological assessment can make in this context has been highlighted in recent years, both in specific domains such as testamentary capacity, [ 6 ] and more broadly [ 7 ]. Neuropsychological performance, defined here as standardized scores obtained on measures of cognitive functioning, has been shown to strongly relate to current and future DMC and neuropsychologists are particularly equipped to assist in identifying which of the relevant areas may be impaired [ 8 ]. Accordingly, there is “a critical need for decision-making science to inform the design of capacity measures to reflect the multiple neuropsychological processes contributing to these decisions” [8 p274].…”

Section: Introductionmentioning

confidence: 99%

Decision-making capacity evaluations: the role of neuropsychological assessment from a multidisciplinary perspective

Wood¹,

Bally

Cabane

et al. 2020

BMC Geriatr

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Decision-making capacity (DMC) in aging adults has become increasingly salient as the number of older adults, life expectancy, and the amount of wealth to be transferred from older generations have all increased. The accurate and reliable determination of older adults’ DMC is a particularly important topic given its implication in legal, financial, and health decisions. Based upon the four-ability DMC model promulgated by Appelbaum and Grisso in the 1980’s, a number of MacArthur Competence Assessment Tools have been developed and widely utilized. However, these tools do not include cognitive testing or other sources of objective data and have limited validity in a medico-legal setting, necessitating additional options for the evaluation of DMC. This is significant from the perspective of the patient because they have a vested interest in accurate and objective assessment of their DMC across domains.Given the disparities in the assessment of DMC, the authors propose, through this debate article, that the evaluation of DMC in the aging adult population utilize a combination of traditional interview and domain specific instruments and neuropsychological testing. To achieve a consensus on the issue, medical experts in a number of fields related to capacity evaluation, including psychiatry, neurology, neuropsychology, and general medicine were consulted and recruited as authors. Experts in Swiss law and ethics were also consulted and provided input.A tendency to focus on a single capacity, and in particular, the ability to consent to medical treatment, arose in the literature. Similarly, there are many instruments purporting to evaluate a single capacity (e.g., consenting to medical treatment, managing finances), while other areas important to the evaluation of DMC received little attention (e.g., activities of daily living, the ability to live independently, to marry, to resist undue influence, and to make a will or advanced care directive). Medical and legal experts in the multidisciplinary group agreed that there is a clear need for more consistency across evaluation of DMC domains and that a combined approach of traditional methods and neuropsychological testing provides a more thorough evaluation and better serves the patient.

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Dementia, Decision Making, and Capacity

Cited by 55 publications

References 69 publications

Lesion network localization of free will

Lesion network localization of free will

Implementing Electric Consent Aimed at People Living with Dementia and Their Caregivers: Did We Forget Those Who Forget?

Decision-making capacity evaluations: the role of neuropsychological assessment from a multidisciplinary perspective

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