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. Author manuscript; available in PMC: 2026 Jan 1.
Published in final edited form as: Psychogeriatrics. 2025 Jan;25(1):e13226. doi: 10.1111/psyg.13226

Delirium-Like Symptomatology in Community-Dwelling Older Adults with Dementia

Jasmine K Vickers 1, Danny Wang 2, Maria Yefimova 3,4, Henrietta Armah 5, Kellie Flood 6, Carolyn EZ Pickering 7
PMCID: PMC11706358  NIHMSID: NIHMS2038549  PMID: 39710496

Abstract

Background:

Delirium, a sudden and acute state of confusion, is known to be more prevalent in hospitalized older adults with dementia and associated with lower levels of functioning after the delirium episode; yet, the literature on estimates of delirium prevalence in community-dwelling older adults with dementia is scarce. The aim of this study was to define and determine the frequency of delirium-like symptoms in two different samples of community-dwelling persons living with dementia, as reported by their family caregivers. “Delirium-like symptoms” is a concept that specifies an occurrence of cognitive and behavioral symptoms, provoking suspicion of delirium, that represent a sudden and unusual deleterious change in a community-dwelling person living with dementia that can be identified by family caregivers and prompt healthcare seeking behaviors.

Methods:

The frequencies of delirium-like symptoms were assessed from two intensive longitudinal 21-day diary studies. Caregivers reported on presence of sudden and unusual cognition and behaviors each day. Descriptive statistics were used to determine the number of caregivers who reported delirium-like symptoms.

Results:

Family caregivers (n=50, n=102) were predominately non-Hispanic White (75%, 61%), female (94%, 85%), and a child (60%, 59%) of the care-recipient and completed 1,389 and 1,739 diaries from the first and second study respectively. Caregivers reported delirium-like symptoms for 12 (24%) and 27 (27%) of care-recipients.

Conclusion:

Other studies of delirium in community-dwelling persons living with dementia have reported similar rates. More research is needed to understand the dynamic context of delirium in community settings to improve the care provided to them by their family caregivers and clinicians in services such as home, primary, and specialty healthcare.

Keywords: Community Dwelling, Delirium, Dementia, Family Caregiver

INTRODUCTION

Community-dwelling persons living with dementia are at a higher risk for developing delirium, yet research specific to delirium in this population is scarce (Fick, Agostini, & Inouye, 2002, Fong & Inouye 2022, Fong et al., 2015). Around a third of older adults that are hospitalized on a general medical unit have delirium on admission to the hospital (Inouye, Westendorp, Saczynski 2014). Although delirium is primarily viewed as an iatrogenic occurrence, many cases originate in settings outside of the hospital such as the home. Additionally, patients are increasingly being discharged with active delirium (Cole et al., 2017). The rates of delirium extracted from hospital-based research are thought to be underestimated because patients with dementia are frequently excluded from research even though they are uniquely at risk for delirium (Inouye, Westendorp, & Saczynski, 2014). This exclusion represents a significant gap in research as persons with dementia have worse physical and cognitive function trajectories after delirium episodes (Rudolph et al., 2010; Saczynski et al., 2012; Fong et al., 2009). Their cognitive functioning declines twice as fast as compared to older adults with dementia who did not experience delirium (Goss et al., 2012).

Around a quarter of community-dwelling older adults with dementia were found to have delirium based on studies conducted among memory clinic patients (Baker et al., 1995; Hasegawa et al., 2013). The studies had differences in the type of delirium assessment and in the timing of evaluations. Additionally, these appraisals did not involve family caregivers. While clinicians are trained to conduct delirium assessments, these interactions are limited to infrequent clinic visits. On the other hand, family caregivers of the person with dementia are an untapped resource for identifying early delirium-related symptoms. Family caregivers provide most (83%) of the care persons with dementia receive (Friedman et al., 2015), and may be the first to notice changes in cognition and behaviors due to their familiarity with the individual and daily interaction. In the community setting, family caregivers are best positioned to alert providers of possible delirium and implement management strategies, which opens an opportunity for further research.

In the past few years, new assessment tools have been developed to increase the efficiency of delirium detection. The Family Confusion Assessment Method (FAM-CAM) is a validated instrument that can be used to detect delirium based on caregiver responses (Steis et al., 2012). The caregiver is asked to reflect on patterns of change in behavior over the past few days, over the past week, or month. Questions include symptoms, such as incoherence, distraction, and wandering. Retrospective recall has limitations as caregivers might not be able to remember details or behaviors.

While FAM-CAM and other similar tools are leveraging useful caregiver observations, a more ecologically valid approach can further advance delirium research and care. Continuous monitoring in an individual’s natural environment moves away from episodic evaluations that rely on recall to assess for change. Daily diary methodologies offer robust ecological validity while decreasing recall bias (Napa Scollon, Prieto, & Diener, 2009; Robbins, Kubiak, & Mostofsky, 2014). Daily observations of cognitive, behavioral, and psychological symptoms can establish a personal baseline and flag sudden onset changes or deviations from the usual.

Identifying when delirium symptoms first emerge using real-time monitoring could lead to timely interventions that address the issue in the moment. Just-in-time responses may be more effective at relieving some of the burden for caregivers managing symptoms at home. Early identification of delirium onset can shorten the time to treatment, lead to better treatment outcomes, and prevent delirium related decline in physical and cognitive functioning in persons living with dementia.

We present the term “delirium-like symptoms” to describe an occurrence of cognitive and behavioral symptoms, provoking suspicion of delirium, that represent a sudden and unusual deleterious change in a community-dwelling person living with dementia that can be identified by family caregivers and prompt healthcare seeking behaviors. Delirium-like symptoms include abnormal mental status change among persons living with dementia that are suddenly much worse than usual. This sharp change in cognition over hours to days contrasts with the slow gradual decline of cognition that occurs over months to years that is typically seen in dementia (Fong et al,, 2015). Additionally, the change in cognition is one that is unusual or much worse than the normal day-to-day cognitive and behavioral fluctuations in dementia.

We present a novel approach for community-dwelling persons living with dementia and family-based delirium management. The aim of this study is to assess the utility of using caregiver daily diary reports of behavioral symptoms as a means of detecting delirium-like symptoms among persons living with dementia in the community. This descriptive study used data from two daily diary studies with different approaches of capturing delirium-like symptoms to determine the utility and frequency of the delirium-like symptoms concept.

METHODS

Study Design

The study was a secondary analysis of two intensive longitudinal studies that collected multiple consequent days of survey data. The first dataset was a daily diary study, EAN BSD Stress, that examined elder abuse, neglect, and behavioral stressors reported by family caregivers of persons with dementia (Pickering et al., 2020). Participants were emailed a baseline survey followed by two brief diary surveys (at 7am and 7pm) sent daily for 21 days. Diaries included questions about events that occurred in the past 12 hours to reduce recall bias. Participants had a three-hour window to fill out the diary, and two reminders were sent every hour to encourage survey completion. Participants were given $40 for the completion of the baseline survey and $2 for each diary they completed.

The second dataset, Daily Decisions, is from a study that examined daily decision-making of dementia family caregivers. This study had a similar design as the first study, with participants filling out a baseline survey followed by 21 days of daily diary surveys. The difference from EAN BSD Stress design was that participants received only one diary that inquired about the past 24 hours. Participants had three hours to fill out the diary that was sent at 7am, and were prompted with three reminders at 8am, 9am, and 10am. Participants were given $50 for completion of the baseline survey and $2 for each diary they completed. See Table 1 for descriptions and comparisons of the study methodology for the EAN BSD Stress and Daily Decisions studies.

Table 1.

Comparison of Two Study Methods and Measures

EAN BSD Stress
(Study 1)
N=50		 Daily Decisions
(Study 2)
N=102
Study Focus Elder abuse, neglect, and behavioral stressors in family caregivers of persons with dementia. Daily decision-making of dementia family caregivers as they provide and prioritize care tasks.
Recruitment United States including Puerto Rico by posting in online caregiver groups and using targeted advertising on social media (i.e., Facebook and Instagram). United States including Puerto Rico by posting in online caregiver groups and using targeted advertising on social media (i.e., Facebook and Instagram).
Sample Caregivers aged 21 years old or older that gave at least 4 hours of unpaid care each day to a family member with dementia that they lived with. Caregivers are 18 years old or older who live with and provide care to a family member with dementia. The caregivers must provide help with at least 2 IADL or 1 ADL.
Surveys Emailed baseline survey followed by 21 days of daily diary surveys. 2 brief diary surveys at 7am and 7pm inquired about the past 12 hours. Emailed baseline survey followed by 21 days of daily diary surveys. 1 diary at 7am inquired about the past 24 hours.
Payment $40 for the baseline survey and $2 for each daily diary. $50 for the baseline survey and $2 for each daily diary.
Delirium-Like Symptoms Measure Computed from caregiver reports of BSD severity scores and defined as 2 consecutive days of BSD one SD from the average in the 21-day period. Positive answer to 2 questions about a sudden and severe change from usual thinking and behavior that has occurred in the past 24 hours.
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Note: ADL – Activities of Daily Living; IADL – Instrumental Activities of Daily Living; BSD – behavioral symptoms of dementia.

Sample

In the first study, EAN BSD Stress, participants were caregivers aged 21 years old or older that gave at least four hours of unpaid care each day to a family member with dementia that they lived with. Participants who did not have regular reliable access to the internet or a smartphone and did not live in the Unites States were excluded.

In the second study, Daily Decisions, the eligibility criteria were that participants are 18 years old or older who live with and provide care to a family member with dementia. The caregivers must provide help with at least two Instrumental Activities of Daily Living (IADLs) or one Activity of Daily Living (ADL). Participants who do not have regular and reliable access to a smartphone or internet as well as those who do not speak English were excluded.

In both studies, participants were recruited from across the United States including Puerto Rico by posting in online caregiver groups and using targeted advertising on social media (i.e., Facebook and Instagram). Best practices for online requirement were followed to ensure that participants were legitimate. They included eliminating duplicate IP addresses, repeating the eligibility screens, validating eligibility responses, and restricting access to the study surveys (King, O’Rourke, & DeLongis, 2014; Kramer et al., 2014; Tarzia et al., 2017; Teitcher et al., 2015). Informed consent was given by each study participant. Procedures for the protection of human subjects and confidentiality were approved by the Institutional Review Board and maintained by study personnel.

Measures

Outcome: Delirium-like symptoms

In the first study, EAN BSD Stress, presence of delirium-like symptoms was computed from caregiver reports of care-recipient behavioral symptom severity scores. Delirium-like symptoms was defined as two consecutive days of behavioral symptoms of dementia (BSD) that were more severe than the average level of caregiver-reported BSD during the 21-day diary period. Diary surveys items to measure nine BSD were adapted from the revised Conflict Tactics Scale (CTS) (Straus et al., 1996) and the Neuropsychiatric Inventory (NPI) (Cummings et al., 1994). Six BSD from CTS included physically and psychologically aggressive behaviors: pushing/shoving, grabbing, throwing something, insults, shouting/yelling, or stomping out of the room. Three BSD were from the NPI included non-aggressive behaviors: resisting care, repetitive activities, and any other inappropriate behavior. BSD severities were measured on a scale of one to seven with seven being the most severe.

Caregiver reports of BSD severity scores of care-recipient behaviors that were one standard deviation above the mean for the 21-day observation period were considered outliers. The outlier counts were summed across the morning and afternoon diaries as well as across the nine BSD for each 24-hour period of the 21-diary days for each participant. Each day was then assigned a dichotomous yes/no variable and given a yes if the outlier count was one or more. When caregivers reported an outlier for two consecutive days, during their 21 diary days, the care-recipient was considered as having “delirium-like symptoms”. If there were more than one none-consecutive outlier day, this was not considered delirium-like symptoms. The criteria of delirium-like symptoms for this study included the outliers persisting for two days to account for daily fluctuations of thinking or behavior that may have been normal dementia behaviors for the care-recipient, since there was no data on the on the usual patterning of dementia behaviors.

In the second study, Daily Decisions, delirium-like symptoms on the daily diaries were assessed using two questions about a sudden and severe change from usual thinking and behavior that has occurred in the past 24 hours. The care-recipient is considered positive for delirium-like symptoms if the caregiver answered both questions with a yes. The questions ask: “From 7 am yesterday to 7 am today, have you noticed a sudden change in your relative with dementia’s behavior or thinking? Such as the relative with dementia would not wake all the way up to eat lunch, but he/she was fine this morning; He/she looked spaced out and would not respond to my questions, but he/she was just talking with me an hour ago” and “From 7 am yesterday to 7 am today, have you noticed the relative with dementia’s behavior and/or thinking has gotten dramatically worse? Such as saying to yourself I have never seen the relative with dementia like this before! This is not normal for him/her. I am worried.” Delirium-like symptoms was a dichotomous yes/no variable if the criteria for delirium-like symptoms was met on a particular day of observation.

The items for the Daily Decisions delirium-like symptoms measure were developed based on the experience of healthcare workers and researchers working with family caregivers to detect delirium in persons living with dementia. The sudden worsening of cognitive issues (i.e., thinking is more illogical than usual or increased disorientation), presentation of new cognitive concerns (i.e., hallucinations and delusions), unusual functional decline (i.e., sudden incontinence or not be able to feed oneself), and sudden worsening in behaviors (i.e., much more aggressive or lethargic than usual) are common complaints of family caregivers. The concepts and phrases used by family caregivers were used to develop this 2-item instrument while incorporating the sudden and unusual deleterious change consistent with the delirium-like symptoms definition.

Caregiving Characteristics

In the first study, EAN BSD Stress, caregiving characteristics were collected on the baseline survey and included the number of hours caregiving in a day and the number of ADL the care recipient was being assisted with. Caregiving hours was assessed using the question “how many hours a day do you spend providing care or supervision to the person with dementia?”. The Level of Care Index from the AARP Caregiver Report was used which designates points based on level of assistance with ADL (National Alliance for Caregiving & American Association of Retired Persons, 2015). ADL inquired about on the baseline survey included bathing, dressing, toileting, incontinence, help in and out of chair, feeding, and oral hygiene.

In the second study, Daily Decisions, caregiving hours were assessed using the question “About how many hours a day do you estimate that you are actually doing things for (name person)? Response in _____hour(s)” from the Caregiver Vigilance Scale (Lawton & Brody, 1969). Activities of daily living were measured using a six-item adaptation of the Langley-Porter Physical Self Maintenance Scale (Mahoney et al., 2003), which contained ratings of self-care ability in areas of toileting, feeding, dressing, grooming, locomotion, and bathing. One point was given for each of the six ADLs that the caregiver needed to assist with.

Personal Characteristics

Demographics were collected on the baseline survey and included the caregivers’ age, sex, race/ethnicity, and relationship to the care recipient and were identical for both studies.

Analysis

Descriptive statistics were used to report caregiver demographics and percentages of delirium-like symptoms. Descriptive statistics were also used to calculate means and outliers for BSD scores to determine delirium-like symptoms from the first study (see measures section).

RESULTS

From the first study, EAN BSD Stress, we analyzed data from 50 caregiver participants that completed 1,389 (66%) diaries (of a possible 2,100). Morning and evening diaries were sent to participants for this study. When morning and evening diary data were aggregated to include the entire day, around 80% of days were completed with each participant completing an average of 16 days. From the second study, Daily Decisions, there were 102 caregiver participants that completed 1,739 (81%) diaries (of a possible 2,142). For both studies, diaries with no data were excluded from analysis. If the diary was partially completed, missing data for delirium-like symptoms variables were considered a non-outlier or no delirium-like symptoms for that day. Missing data for participant characteristics is reported in Table 2. No imputations were made for missing data. Caregivers were predominantly non-Hispanic White/Caucasian (75%, 61%) and female (94%, 85%) from the first and second study respectively. Most reported being a son/daughter (60%, 59%) or spouse (29%, 20%) of the care-recipient. Caregivers were on average 52.8 ± 11.7 and 52.7 ± 12.1 years old. Caregivers had been providing care for 15.7 ± 7.01 and 13.8 ± 7.01 hours a day. Caregivers assisted with an average of 3.3 ± 2.1 and 4.8 ± 1.7 ADL activities. Table 2 includes demographic characteristics of caregivers.

Table 2.

Participant Characteristics

EAN BSD Stress
(Study 1)
N=50		 Daily Decisions
(Study 2)
N=102
Gender, n (%) Female 45 (93.8%) 85 (85%)
Male 3 (6.3%) 15 (15%)
Race, n (%) NH White/Caucasian 36(72.0%) 62 (60.8%)
Black/African American 12(24.0%) 22 (21.6%)
Other 2(4.0%) 18 (17.6%)
Relationship to Care-Recipient, n (%) Son/Daughter 29 (60.4%) 60 (58.8%)
Spouse 14 (29.2%) 21 (20.6%)
Other 5 (10.4%) 21 (20.6%)
Age in years, mean ± SD 52.8 ± 11.7 52.7 ±1 2.1
      Max - min 26 - 73 25-85
Caregiving hours per Day, mean ± SD 15.7 ± 7.01 13.8 ± 7.01
           Max - min 4 - 24 0.5 - 24
Care-Recipient ADL Assistance, mean ± SD 3.3 ± 2.1 4.8 ± 1.7
              Max - min 0 - 6 0 - 6
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Note. NH = Non-Hispanic; ADL= Activities of Daily Living.

^

Missing gender and relationship on 2 participants in Study 1; Missing gender for 2 participants and age for 9 participants in Study 2.

Caregivers reported delirium-like symptoms for 12 (24%) and 27 (27%) of care-recipients from the first and second study respectively. See Table 3 for the delirium-like symptoms outcomes.

Table 3.

Occurrence of Delirium-Like Symptoms

EAN BSD Stress
(Study 1)
N=50		 Daily Decisions
(Study 2)
N=102
Care recipients with delirium-like symptoms, n (%) 12 (24.0%) 27 (27.0%)
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DISCUSSION

We found consistent (24% and 27%) rates of delirium-like symptoms in both studies. It is comparable with prevalence of delirium found by clinicians with memory clinic patients. Two studies reported delirium occurrence to be 25% and 19.4% (respectively Baker et al., 1995; Hasegawa et al., 2013), while one reported delirium occurrence of 3.6% (Manni et al., 2021) with a physician making the diagnosis using the Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria. The study conducted by Manni and colleagues included home-based memory care with a longer time to clinician assessment after the alert of mental status changes. The delirium episode may have waned by the time the clinician was able to provide a home assessment days later which may explain the difference in rates. Additionally, reports of observations of behavioral symptoms of care-recipients and caregiver perception of sudden and usual change yielded congruent rates of delirium-like symptoms, reinforcing the assumption that caregivers are able to detect and report abnormal changes.

There are several strengths of this study including the use of novel, ecologically valid, and caregiver-based measures. Since persons living with dementia are at a much higher risk of delirium, there is ample opportunity to monitor and intervene in community-dwelling populations, to prevent delirium-related physical and cognitive functional declines. Our novel approach of using a community and caregiver-based observation of a sudden and severe worsening of symptoms represents a departure from traditional hospital-based measures. This deviation is a necessary shift to explore prevalence of delirium in its environment of origin. Family caregivers are often expected to discuss the care-recipient’s baseline physical and cognitive functioning in isolating, inconvenient, uncomfortable settings with little time to convey complex details. Ecological assessment breaks down these barriers and allows for a robust appraisal by family caregivers, who have a daily proximity to the care-recipient. They have a window of time to convey important information from the home setting where behaviors are occurring. Additionally, these reports were found to be highly reliable and yielded similar findings across two daily-diary study samples. Thus, this method can be used in future daily diary studies assess phenomena such as environmental contributors to delirium.

The limitations of the study include a lack of traditional validity and reliability testing of the measure to the “gold standard” assessments of delirium. The central phenomenon of “delirium-like symptoms” is primarily intended to highlight early abnormal changes in cognition and behavior in persons living with dementia that warrant a caregiver to pursue medical evaluation. It also creates an avenue for novel, community- and caregiver-based approaches to delirium detection. Future research is needed to assess the performance of this measure against existing delirium assessments. However, the delirium-like symptom occurrence is similar to the prevalence of delirium found in other studies that used the gold standard of a physician DSM diagnosis. Another limitation includes the missingness of daily diary reporting that may affect detection of delirium-like symptoms. It is not known if abnormal mental status changes (indicative of a medical concern warranting medical attention) or normal daily fluctuations in cognition and behavior in persons with dementia affect the caregivers’ adherence to completing daily diaries. Thus, the prevalence of delirium-like symptoms may be underreported. However, daily diaries have been shown to elicit high response rates and reduce recall bias. The response rate for both studies were high (66.1% in study 1 and 81.2% in study 2).

Elevated levels of delirium-like symptoms in community-dwelling persons with dementia warrants further investigation into predictors, management, and treatment in the community setting. Future research can expand our understanding of the context of this occurrence, such as the home environment, caregivers’ confidence, and outcomes related to responses to abnormal mental status changes in their care-recipient. Brief 2-item measures, like the one presented in this study, could be incorporated into ambulatory or home dementia healthcare settings to teach family caregivers when to seek care or medical evaluation for their care-recipients. Real-time monitoring of symptoms would create ripe opportunities for family caregiver education and empowerment from ambulatory care providers that would enhance responsiveness and help-seeking behaviors when mental status changes occur. Thus, producing the best opportunity for early detection and intervention of delirium for the prevention of delirium-related long-term functional decline and reduction of caregiving strain.

ACKNOWLEDGEMENTS

We would like to thank all of the participants who generously gave of their time and efforts to our research study.

Funding

The study was funded by the National Institute on Aging (5R01AG060083) and (1R01AG072424) PI Carolyn E.Z. Pickering PHD RN and postdoctoral fellow Jasmine Vickers PhD (1R01AG072424, 2021-2023). Jasmine Vickers also received support from the National Institutes of Health Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health under Award Number 1T32HD071866 (2023-2025). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funding agencies has no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or preparation, review, or approval of the manuscript.

Footnotes

Declaration of Helsinki

The studies reported in this manuscript were reviewed the institutional review boards to assure ethical standards in accordance with the Declaration of Helsinki were maintained. All participants gave informed consent before inclusion in the study, and all study personnel maintained institutional human subjects research training.

Previous Publication

The authors affirm that this content has not been published or submitted for publication elsewhere except as a brief abstract in the proceedings of a scientific meeting. This research was presented in part at the Gerontological Society of America’s Annual Scientific Meeting as poster presentation.

Vickers, J.K., Wang, D, Pickering, C.E.Z. (2022). Delirium-Like Behavioral Symptomatology in Community-Dwelling Older Adults with Dementia. Abstract accepted for a poster presentation at the Gerontological Society of America’s Annual Scientific Meeting, Indianapolis, IN.

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