Potential impact of the COVID-19 pandemic on everyday preferences for persons with cognitive impairment.

The COVID-19 pandemic and subsequent social distancing guidelines and restrictions brought on changes in the everyday experiences of older adults. It is not clear, however, to what extent the pandemic has impacted the importance of everyday preferences for persons with cognitive impairment (CI) or the proxy ratings of those preferences. The sample of this study included 27 dyads of persons with CI and their care partners. The Preferences for Everyday Living Inventory was used to assess importance of preferences among persons with CI; care partners completed concurrent proxy assessments. Mixed random and fixed effects longitudinal models were used to evaluate changes in ratings and concordance levels between persons with CI and care partners prior to and during the COVID-19 pandemic. Persons with CI rated autonomous choice preferences as significantly more important during the COVID-19 pandemic than before; there was no association between the COVID-19 pandemic and change in other everyday preferences domains or discrepancy in proxy assessments of everyday preferences. Identifying avenues to support and provide for autonomy in the decision-making of older adults with CI may offer a way forward in mitigating the psychological and behavioral impacts of the COVID-19 pandemic in this population.

Antipsychotic Medication Use Among Older Adults Following Infection-Related Hospitalization.

Importance: There are limited data on discontinuation rates of antipsychotic medications (APMs) used to treat delirium due to acute hospitalization in the routine care of older adults. Objective: To investigate discontinuation rates and patient characteristics of APMs used to treat delirium following infection-related hospitalization among older US adults. Design, Setting, and Participants: This retrospective cohort study was conducted using US claims data (Optum's deidentified Clinformatics Data Mart database) for January 1, 2004, to May 31, 2022. Patients were aged 65 years or older without prior psychiatric disorders and had newly initiated an APM prescription within 30 days of an infection-related hospitalization. Statistical analysis was performed on December 15, 2022. Exposures: New use (no prior use any time before cohort entry) of oral haloperidol and atypical APMs (aripiprazole, olanzapine, quetiapine, risperidone, etc). Main Outcomes and Measures: The primary outcome was APM discontinuation, defined as a gap of more than 15 days following the end of an APM dispensing. Survival analyses and Kaplan-Meier analyses were used. Results: Our study population included 5835 patients. Of these individuals, 790 (13.5%) were new haloperidol users (mean [SD] age, 81.5 [6.7] years; 422 women [53.4%]) and 5045 (86.5%) were new atypical APM users (mean [SD] age, 79.8 [7.0] years; 2636 women [52.2%]). The cumulative incidence of discontinuation by 30 days after initiation was 11.4% (95% CI, 10.4%-12.3%) among atypical APM users and 52.1% (95% CI, 48.2%-55.7%) among haloperidol users (P < .001 for difference between haloperidol vs atypical APMs). We observed an increasing trend in discontinuation rates from 2004 to 2022 (5% increase [95% CI, 3%-7%] per year) for haloperidol users (adjusted hazard ratio, 1.05 [1.03-1.07]; P < .001) but not for atypical APM users (1.00 [0.99-1.01]; P = .67). Prolonged hospitalization and dementia were inversely associated with the discontinuation of haloperidol and atypical APMs. Conclusions and Relevance: The findings of this cohort study suggest that the discontinuation rate of newly initiated APMs for delirium following infection-related hospitalization was lower in atypical APM users than in haloperidol users, with prolonged hospitalization and dementia as major associated variables. The discontinuation rate was substantially higher in recent years for haloperidol but not for atypical APMs.

Projection of Care Partners' Preferences in the Proxy Assessments of Everyday Preferences for Persons With Cognitive Impairment.

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.

Predictors of the importance of everyday preferences for older adults with cognitive impairment.

OBJECTIVES: Among older people with cognitive impairment and mild dementia, relatively little is known about the factors that predict preferences for everyday living activities and experiences and that influence the relative importance of those activities and experiences. DESIGN: Cross-sectional study. SETTING: Participants were recruited from the Massachusetts Alzheimer's Disease Research Center (MADRC) Clinical Core longitudinal cohort. PARTICIPANTS: The sample included 62 community-dwelling older adults with cognitive impairment (Clinical Dementia Rating global score ≥ 0.5). MEASUREMENTS: We used the Preferences for Everyday Living Inventory (PELI) to assess preferences for activities and lifestyle experiences among persons with cognitive impairment. Within-subjects analysis of variance was used to test for significant differences in the mean ratings of importance for four domains of the PELI ("autonomous choice," "social engagement," "personal growth," and "keeping a routine"). Multiple regression models were used to relate predictors, including neuropsychiatric symptoms, to importance ratings for each domain. RESULTS: Significant differences were noted in the mean importance ratings of the preferences domains: "social engagement" preferences were rated as most important, followed by "autonomous choice," "personal growth," and "keeping a routine." For the "social engagement" preferences domain, female sex was significantly associated with higher importance of "social engagement," while depressive symptoms (Geriatric Depression Scale-15 scores) were significantly associated with lower importance. CONCLUSIONS: This study adds novel insight into the everyday preferences of community-dwelling older adults with cognitive impairment and highlights the impact of a number of factors, particularly level of depression, on how important various everyday experiences are perceived.

Longitudinal Changes in Neuropsychiatric Symptoms: Impact of Discrepancy in Everyday Preferences Between Persons With Cognitive Impairment and Their Care Partners.

OBJECTIVES: Neuropsychiatric symptoms (NPS) of dementia are common and may be driven by inability of persons with cognitive impairment (CI) to communicate needs. We addressed the relevance of this unmet-needs model to burden of NPS among persons with milder CI. METHODS: The sample included 48 dyads of persons with CI and their care partners. NPS were measured at baseline and follow-up (mean 486 days +/-107 SD). Mixed random and fixed effects longitudinal models were used to evaluate impact of discrepancies between persons with CI and their care partners in everyday preferences (baseline) on changes in NPS over time. RESULTS: Higher levels of underestimation of "social engagement" preferences of persons with CI by care partners were associated with a higher average burden of NPS across all follow-up. CONCLUSIONS: This study suggests that unmet-needs may be a useful construct for understanding etiology for NPS across the spectrum of severity of cognitive impairment.

Reconsidering Gold Standards for Surrogate Decision Making for People with Dementia.

As dementia progresses and cognitive function declines, surrogate decision making becomes increasingly prevalent. By convention, there is a hierarchical approach to proxy decision making beginning with known wishes, followed by a substituted judgment standard, and then a best-interests standard. For people with dementia, discrepancy in proxy assessments is common and associated with negative behavioral outcomes. Therefore, optimal approaches to proxy decision making for people with dementia should instead prioritize and implement options that encourage direct participation of persons with dementia and standards that explicitly rely on consideration of longitudinal changes in values and preferences for persons with dementia.

Study rationale and baseline data for pilot trial of dronabinol adjunctive treatment of agitation in Alzheimer's dementia (THC-AD).

Agitation is a common complication of Alzheimer's dementia (Agit-AD) associated with substantial morbidity, high healthcare service utilization, and adverse emotional and physical impact on care partners. There are currently no FDA-approved pharmacological treatments for Agit-AD. We present the study design and baseline data for an ongoing multisite, three-week, double-blind, placebo-controlled, randomized clinical trial of dronabinol (synthetic tetrahydrocannabinol [THC]), titrated to a dose of 10 mg daily, in 80 participants to examine the safety and efficacy of dronabinol as an adjunctive treatment for Agit-AD. Preliminary findings for 44 participants enrolled thus far show a predominately female, white sample with advanced cognitive impairment (Mini Mental Status Examination mean 7.8) and agitation (Neuropsychiatric Inventory-Clinician Agitation subscale mean 14.1). Adjustments to study design in light of the COVID-19 pandemic are described. Findings from this study will provide guidance for the clinical utility of dronabinol for Agit-AD. ClinicalTrials.gov Identifier: NCT02792257.

Longitudinal differences in everyday preferences: Comparisons between people with cognitive impairment and their care partners.

OBJECTIVES: Persons with progressive cognitive impairment (CI) increasingly rely on surrogate decision-makers for everyday activities. Yet, little is known about changes in everyday preferences over time or about concordance between persons with CI and their care partners regarding longitudinal changes. METHODS: The sample included 48 dyads of persons with CI (Clinical Dementia Rating Scale score ≥0.5) and their care partners. The Preferences for Everyday Living Inventory was used to assess importance of preferences among persons with CI at baseline and follow-up (mean 486 days). Care partners separately completed concurrent proxy assessments. Mixed random and fixed effects longitudinal models were used to evaluate changes in ratings and concordance levels between persons with CI and care partners. RESULTS: There were significant gender differences regarding importance ratings of "autonomous choice" and "social engagement" preferences over time: women with CI rated these preferences as more important across time as a whole. Higher levels of neuropsychiatric symptoms were associated with less importance of "social engagement" preferences across time as a whole for persons with CI and a more negative discrepancy between persons with CI and care partner proxy assessments as time went on. CONCLUSION: This study yields new insights into predictors of longitudinal change in everyday preferences among persons with CI and their care partners. Although preferences were largely stable over time, there is increasing support for the relationship between differences in "social engagement" preferences and neuropsychiatric symptoms, which may have implications for monitoring and/or treatment in the context of cognitive impairment.

Differences in Assessment of Everyday Preferences Between People With Cognitive Impairment and Their Care Partners: The Role of Neuropsychiatric Symptoms.

OBJECTIVE: As cognitive impairment progresses, people with dementia increasingly rely on surrogate decision-makers for everyday activities. Yet, little is known about concordance on everyday preferences between persons with cognitive impairment and their care partners. METHODS: The sample included 69 dyads of persons with cognitive impairment (Clinical Dementia Rating Scale ≥0.5) and their care partners. We used the Preferences for Everyday Living Inventory (PELI) to assess preferences for activities and lifestyle choices among persons with cognitive impairment. The PELI was concurrently but separately administered to care partners, who answered as surrogate decision-makers. Factor analysis was used to ascertain factor structure of the PELI; reliability measures were computed within the sample. Paired sample t-tests were used to estimate differences in scores of corresponding PELI items for each factor. Multiple regression models were used to relate predictors, including neuropsychiatric symptoms, to agreement levels. RESULTS: Four factors were identified from the PELI: autonomous choice, social engagement, personal growth, and keeping a routine. Significant participant-care partner discrepancy was found in "social engagement" preferences (e.g., regular contact with family, meeting new people, volunteering). Geriatric Depression Scale-15 score and care partner sex were significantly associated with participant-care partner discrepancies in "social engagement" preferences. CONCLUSION: This study yields new insights regarding the most important preferences for persons with cognitive impairment and clarifies a path to optimizing surrogate decision-making around everyday preferences by highlighting areas of apparent disagreement and identifying potential predictors of discrepancy.

Characteristics of Hospice Referrals From an Inpatient Geriatric Psychiatry Unit.

OBJECTIVE: Geriatric psychiatrists who treat neuropsychiatric symptoms of dementia are in the unique position of offering palliation to people with terminal illness in whom neuropsychiatric symptoms may be indicators of the illness's end stage (e.g., feeding problems). Little is known, however, about the characteristics of hospice referrals from inpatient geriatric psychiatry units. METHODS: This was a retrospective chart review of patients with dementia admitted to an inpatient geriatric psychiatry unit and referred to hospice on discharge. RESULTS: Patients were referred to hospice because of feeding problems, with oral intake insufficient to sustain life. Most patients (78%) died within 31 days of discharge, and all patients (100%) died within 6 months of discharge. CONCLUSION: The results from this study support a symptom-based approach to hospice referral for people with dementia, as opposed to prognostic estimation, where certain symptom clusters may indicate a more rapidly progressing course.

Narrative Interest Standard: A Novel Approach to Surrogate Decision-Making for People With Dementia.

Dementia is a common neurodegenerative process that can significantly impair decision-making capacity as the disease progresses. When a person is found to lack capacity to make a decision, a surrogate decision-maker is generally sought to aid in decision-making. Typical bases for surrogate decision-making include the substituted judgment standard and the best interest standard. Given the heterogeneous and progressive course of dementia, however, these standards for surrogate decision-making are often insufficient in providing guidance for the decision-making for a person with dementia, escalating the likelihood of conflict in these decisions. In this article, the narrative interest standard is presented as a novel and more appropriate approach to surrogate decision-making for people with dementia. Through case presentation and ethical analysis, the standard mechanisms for surrogate decision-making for people with dementia are reviewed and critiqued. The narrative interest standard is then introduced and discussed as a dementia-specific model for surrogate decision-making. Through incorporation of elements of a best interest standard in focusing on the current benefit-burden ratio and elements of narrative to provide context, history, and flexibility for values and preferences that may change over time, the narrative interest standard allows for elaboration of an enriched context for surrogate decision-making for people with dementia. More importantly, however, a narrative approach encourages the direct contribution from people with dementia in authoring the story of what matters to them in their lives.

Physician-Assisted Death Psychiatric Assessment: A Standardized Protocol to Conform to the California End of Life Option Act.

BACKGROUND: The California End of Life Option Act (EOLOA), which legalized physician-assisted death (PAD), became effective in 2016. The EOLOA does not require a mental health consultation in all cases nor does it state the standards for the mental health assessment. University of California, San Francisco Medical Center (UCSFMC) policy makers decided to require a mental health assessment of all patients seeking PAD under the EOLOA. OBJECTIVES: The Department of Psychiatry was tasked with developing a standard protocol for the mental health assessment of patients seeking PAD. METHODS: Members of the consultation-liaison (C-L) service developed a document to guide members in completing the mental health evaluations for patients requesting PAD. RESULTS: A committee at UCSFMC developed a clinical protocol informed by the law with an additional local expectation of an evaluation by a psychiatrist or clinical psychologist. The C-L psychiatry group at UCSF developed a standard protocol for the psychiatric assessment for use by clinicians performing these assessments. Attention to the cognitive, mood, and decisional capacity status pertinent to choosing PAD is required under the clinical guidance document. Case vignettes of 6 patients evaluated for PAD are presented. CONCLUSIONS: The local adoption of the California EOLOA by UCSFMC requires a mental health assessment of all patients requesting EOL services at UCSF. The clinical guideline for these assessments was locally developed, informed by the literature on EOL in other jurisdictions where it has already been available.

Update on SSRI Treatment for Neuropsychiatric Symptoms of Dementia.

Neuropsychiatric symptoms (NPS) of dementia including agitation, depression, and psychosis are common and debilitating facets of the disease process. Despite the significant impact of these symptoms on both individuals with dementia and their caregivers, safe and effective treatment options are lacking. From a pharmacological approach, antipsychotics have historically been the treatment of choice, but these medications are only modestly effective with significant adverse effects. Behavioral and psychosocial interventions have been shown to be effective but are difficult to implement in routine clinical practice. SSRI medications have been investigated as an alternative psychopharmacological approach based on evidence that the serotoninergic system is involved in the etiology of NPS in dementia. The evidence base for using SSRI medications in the treatment of NPS is growing, but the applicability of research findings to the utility of SSRIs in general in routine clinical practice is not entirely clear at this point. Further studies of a variety of SSRI medications in targeting NPS are needed to make a more definitive assessment of the efficacy of these medications in the relief of NPS.

More Than Capacity: Alternatives for Sexual Decision Making for Individuals With Dementia.

Sexual expression can be an important aspect of well being for older adults with dementia living in nursing homes. There is a tension in the nursing home, however, between ensuring autonomy of residents for sexual expression and protecting residents from harm. To alleviate this tension, nursing homes can conduct an assessment of residents' capacity for sexual consent. This article argues that although such assessments can be useful in the initial evaluation of capacity, this is a somewhat flawed approach to sexual decision making and a finding of incapacity should not necessarily preclude sexual expression. In instances where residents are found to lack capacity but continue to express interest in sexual expression, a committee approach can be utilized where residents, the nursing home, and family members can convene to advocate for residents' autonomy, dignity, and right to sexual expression while working to minimize harm. Such advocacy decisions can be based on substituted judgment, a best interest standard, or some combination of the two. Although committee decision making for sexual expression seems intrusive, it at least allows for continued discussion of the right to sexual freedom for residents in the face of significant counterbalancing forces.