Highlights
- •What is the primary question addressed by this study?— To what extent do care partners project their own preferences onto surrogate assessments of everyday preferences for persons with cognitive impairment and dementia?
- •What is the main finding of this study?— Significant projection was noted within preference domains of autonomous choice, personal growth, and keeping a routine. More significant cognitive impairment was associated with increased projection within the preferences domains of autonomous choice and personal growth.
- •What is the meaning of the finding?— From a bioethical standpoint, the goal of surrogate decision-making is to align surrogate decisions with what persons would choose for themselves; these data highlight decisional areas where extra attention is needed by care partners to improve the fidelity in the decision-making process.
ABSTRACT
Objective
Bias in surrogate decision-making can occur when proxy decision-makers overestimate
the degree to which their preferences are shared by others, resulting in a projection
of their beliefs onto others. The purpose of this study is to assess projection of
care partners’ preferences onto surrogate assessments of everyday preferences for
persons with cognitive impairment (CI) and to address clinical and demographic factors
as predictors of projection.
Methods
The sample included 116 dyads of persons with CI (Clinical Dementia Rating Scale score
≥ 0.5) and their care partners. The Preferences for Everyday Living Inventory (PELI)
was used to assess importance of preferences among persons with CI. Care partners
completed two separate PELI assessments: one from the perspective of the persons with
CI (i.e., acting as a surrogate decision-maker) and one from their own perspective.
To assess for projection of care partners’ preferences onto surrogate assessments
of preferences for persons with CI, two-step regression with multivariable-adjusted
general linear models was used.
Results
Significant projection was noted within the PELI domains of autonomous choice, personal
growth, and keeping a routine (p < 0.005). More significant cognitive impairment was
associated with increased projection within the PELI domains of autonomous choice
and personal growth (p < 0.05).
Conclusion
The results of this study suggest that projection of care partners’ own preferences
may be a significant source of bias in proxy decision-making regarding everyday preferences
for persons with CI, particularly for those with more significant CI.
Key Words
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to The American Journal of Geriatric PsychiatryAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- The accuracy of surrogate decision makers: a systematic review.ArchInternMed. 2006; 166: 493-497
- Education outcomes of a multisite, virtual, interprofessional training in patient priorities aligned care.J Am Geriatr Soc. 2022; 70: E5-E7
- Projection in surrogate decisions about life-sustaining medical treatments.Health Psychol. 2001; 20: 166-175
- Spouse as health care proxy for dialysis patients: whose preferences matter?.Gerontologist. 2005; 45: 812-819
- Do older adults know their spouses’ end-of-life treatment preferences?.Res Aging. 2009; 31: 463-491
- Similarity, agreement, and assumed similarity in proxy end-of-life decision making.Fam Syst Health. 2013; 31: 366-381
- Patient and surrogate disagreement in end-of-life decisions: can surrogates accurately predict patients’ preferences?.Med Decis Making. 2008; 28: 524-531
- Perspective taking as egocentric anchoring and adjustment.J Pers Soc Psychol. 2004; 87: 327-339
- Shared decision-making in dementia: a review of patient and family carer involvement.Dementia. 2016; 15: 1141-1157
- Differences in assessment of everyday preferences between people with cognitive impairment and their care partners: the role of neuropsychiatric symptoms.Am J Geriatr Psychiatr. 2020; 28: 1070-1078
- Longitudinal differences in everyday preferences: comparisons between people with cognitive impairment and their care partners.Int J Geriatr Psychiatry. 2021; 37 (Online ahead of print.)https://doi.org/10.1002/gps.5620
- Longitudinal changes in neuropsychiatric symptoms: impact of discrepancy in everyday preferences between persons with cognitive impairment and their care partners.Am J Geriatr Psychiatry. 2022; 30: 619-623
- The preferences for everyday living inventory: scale development and description of psychosocial preferences responses in community-dwelling elders.Gerontologist. 2013; 53: 582-595
- The alzheimer's disease centers’ uniform data set (UDS): the neuropsychologic test battery.Alzheimer Dis Assoc Disord. 2009; 23: 91-101
- The clinical dementia rating (CDR): current version and scoring rules.Neurology. 1993; 43: 2412-2414
- Validation of the NPI-Q, a brief clinical form of the neuropsychiatric inventory.J Neuropsychiatry Clin Neurosci. 2000; 12: 233-239
- Geriatric Depression Scale (GDS): recent evidence and development of a shorter version.Clin Gerontol. 1986; 5: 165-173
- The montreal cognitive assessment, MoCA: a brief screening tool for mild cognitive impairment.J Am Geriatr Soc. 2005; 53: 695-699
- Rectangular confidence regions for the means of multivariate normal distributions.J Am Stat Assoc. 1967; 62: 626-633
- Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis.J Gerontol B Psychol Sci Soc Sci. 2003; 58: P112-P128
- Caregiver rating bias in mild cognitive impairment and mild Alzheimer's disease: impact of caregiver burden and depression on dyadic rating discrepancy across domains.Int Psychogeriatr. 2013; 25: 1345-1355
- Older adult and surrogate perspectives on serious, difficult, and important medical decisions.J Am Geriatr Soc. 2018; 66: 1515-1523
- Family matters: effects of birth order, culture, and family dynamics on surrogate decision-making.J Am Geriatr Soc. 2014; 62: 175-182
Article info
Publication history
Published online: December 10, 2022
Accepted:
December 3,
2022
Received in revised form:
December 1,
2022
Received:
August 1,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.
ScienceDirect
Access this article on ScienceDirectLinked Article
- Commentary on “Projection of Care Partners’ Preferences in the Proxy Assessments of Everyday Preferences for Persons With Cognitive Impairment”The American Journal of Geriatric Psychiatry
- Preview“Projection of Care Partners’ Preferences in the Proxy Assessments of Everyday Preferences for Persons with Cognitive Impairment,” by Wilkins and colleagues, applies a standard method in the study of cognitive biases to daily decision-making in care for older persons with cognitive impairment. Person A, who has cognitive impairment, reported their own preferences for daily hygiene and diet practices, social contact, and leisure activities. Person B, who provides care to Person A, also reported their own preferences, as well as the preferences they believed Person A held.
- Full-Text
- Preview
