Medical decision-making in neurodegenerative disease: Mild AD and PD with cognitive impairment

Background Medical decision-making capacity is impaired in Alzheimer’s disease and mild cognitive impairment. Medical decision-making capacity depends on many different cognitive functions and varies due to situation and cognitive, social, and emotional status of the patient. Our aim was to analyze dementia patients’ capacity to estimate risks and benefits in different clinical trials and determine how cognitive decline affects their attitude toward possible participation and proxy consent. Methods Groups: Alzheimer’s disease (n = 20), mild cognitive impairment (n = 21) and healthy controls (n = 33). Two hypothetical clinical trials, a standardized interview and three visual analogue scales were used to investigate decisions, estimations, reasoning, and attitudes. Results A general positive attitude toward participation in clinical trials was shown among all groups. Both patients and controls motivated possible participation as “own-benefit” in the low-risk trial and to “help-others” in the high-risk trial. Individuals who accepted to participate in the high-risk trial scored lower in medical decision-making capacity in comparison to participants who would not have participated (p < .01). Patients in the Alzheimer’s disease but not mild cognitive impairment and healthy control groups underestimated risks and overestimated benefits in the high-risk/low-benefit trial (p < .05). A family member was most frequently chosen as possible proxy (91%). Conclusions Medical decisions and research consent should be interpreted with caution in patients who are already in early stages of dementia, as the patients’ acceptance to participate in high-risk trials may be due an insufficient decisional capacity and risk analysis, accelerated by a general desire to make good to society. We emphasize the use of a standardized tool to evaluate medical decisional capacity in clinical research.

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Shared decision making in mild cognitive impairment

Neurology Clinical Practice ◽

10.1212/cpj.0000000000000576 ◽

2018 ◽

Vol 9 (2) ◽

pp. 160-164 ◽

Cited By ~ 4

Author(s):

Andrea M. Mejia ◽

Glenn E. Smith ◽

Meredith Wicklund ◽

Melissa J. Armstrong

Keyword(s):

Decision Making ◽

Cognitive Impairment ◽

Clinical Practice ◽

Mild Cognitive Impairment ◽

Shared Decision Making ◽

Medical Decision Making ◽

Medical Decision ◽

Shared Decision ◽

Medical Evidence

Shared decision making (SDM) occurs when patients and clinicians consider patients' values and preferences while discussing medical evidence to inform healthcare decisions. SDM enables patients with mild cognitive impairment (MCI) to express values and preferences when making current healthcare decisions and presents a unique opportunity to inform future decision making in the case of further cognitive decline. However, clinicians often fail to facilitate SDM with patients with MCI. This review describes research pertaining to value solicitation, weighing of the medical evidence, and medical decision making for individuals with MCI, explores the role of caregivers, identifies barriers to and facilitators of SDM in MCI, and suggests strategies to optimize SDM for persons with MCI in neurology clinical practice. Further research is needed to identify more strategies for decision support for individuals affected by cognitive impairment.

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Cognitive predictors of medical decision-making capacity in mild cognitive impairment and Alzheimer's disease

International Journal of Geriatric Psychiatry ◽

10.1002/gps.4114 ◽

2014 ◽

Vol 29 (12) ◽

pp. 1304-1311 ◽

Cited By ~ 14

Author(s):

Sara Stormoen ◽

Ove Almkvist ◽

Maria Eriksdotter ◽

Erik Sundström ◽

Ing-Mari Tallberg

Keyword(s):

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Decision Making ◽

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Medical Decision Making ◽

Medical Decision ◽

Cognitive Predictors ◽

Decision Making Capacity

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Investigating medical decision-making capacity in patients with cognitive impairment using a protocol based on linguistic features

Scandinavian Journal of Psychology ◽

10.1111/sjop.12068 ◽

2013 ◽

Vol 54 (5) ◽

pp. 386-392 ◽

Cited By ~ 9

Author(s):

Ing-Mari Tallberg ◽

Sara Stormoen ◽

Ove Almkvist ◽

Maria Eriksdotter ◽

Erik Sundström

Keyword(s):

Decision Making ◽

Cognitive Impairment ◽

Medical Decision Making ◽

Medical Decision ◽

Linguistic Features ◽

Decision Making Capacity

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Financial and medical decision-making capacity in mild cognitive impairment and dementia.

APA handbook of dementia. ◽

10.1037/0000076-011 ◽

2018 ◽

pp. 219-235 ◽

Cited By ~ 2

Author(s):

Kristen L. Triebel ◽

Adam Gerstenecker ◽

Daniel C. Marson

Keyword(s):

Decision Making ◽

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Medical Decision Making ◽

Medical Decision ◽

Decision Making Capacity

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Correlating Dementia Severity Rating Scale and Schonberg Index Mortality Risk Scores to Aid Caregiver Medical Decision-Making

Proceedings of IMPRS ◽

10.18060/24611 ◽

2020 ◽

Vol 3 ◽

Author(s):

Myranda Grismore ◽

Nicole Fowler

Keyword(s):

Decision Making ◽

Cognitive Impairment ◽

Life Expectancy ◽

Medical Decision Making ◽

Rating Scale ◽

Medical Decision ◽

Prognostic Information ◽

Severity Rating ◽

Dementia Severity ◽

The Relationship

Background/Hypothesis: The 16 million unpaid caregivers serving individuals with Alzheimer’s disease and related dementias (ADRD) are more likely to participate in medical decision-making than caregivers of older adults with other chronic conditions. Their decisions may reflect the patient’s severity of cognitive impairment and life expectancy. Analysis of the relationship between these two factors is needed to improve the prognostic information provided to caregivers. ADRD severity can be measured using the Dementia Severity Rating Scale (DSRS), a validated, informant-based multiple-choice questionnaire that assesses functional and cognitive abilities. Life expectancy can be estimated using the Schonberg Index (SI), a validated, predictive mortality index. We hypothesize that DSRS and SI scores will be correlated. Methods: A retrospective analysis of data from 230 dyads enrolled in the Decisions about Cancer Screening in Alzheimer’s Disease (DECAD) study was performed. The DECAD study is an ongoing randomized controlled trial enrolling dyads of older women with ADRD and their caregivers to test the benefits of a mammography decision aid. In the study, caregivers completed the DSRS and SI questions. DSRS and SI scores were compared using linear regression analysis. Additionally, 20 DECAD interviews were qualitatively evaluated to explore themes of medical decision-making among ADRD caregivers. Results: DSRS scores and SI scores were weakly correlated, yielding an R2 value of 0.1. Interviews revealed that caregivers most frequently considered physician advice, comorbidity status, and patient preferences in decision-making. 67% of moderate ADRD caregivers and 36% of mild ADRD caregivers cited cognitive impairment severity as an influential factor. Conclusions/Implications: Further analysis controlling for time since diagnosis will better establish the relationship between DSRS and SI scores. The resulting increase in accuracy of ADRD prognostic information will aid physicians and caregivers in medical decision-making. Furthermore, understanding what influences caregiver decisions will allow for the provision of improved guidance from physicians.

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