Perspectives on the Delirium Experience and Its Burden: Common Themes Among Older Patients, Their Family Caregivers, and Nurses

Schmitt, Eva M.; Gallagher, J. Roswell; Albuquerque, Asha; Tabloski, Patricia A.; Lee, Hyo Jung; Gleason, Lauren J.; Weiner, Lorin; Marcantonio, Edward R.; Jones, Richard N.; Inouye, Sharon K.; Schulman‐Green, Dena

doi:10.1093/geront/gnx153

Cited by 90 publications

(78 citation statements)

References 41 publications

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“…Factors that determine caregiver burden in delirium are likely to be complex, nuanced, and affected by underlying dementia; and they are an important area for future investigation. The unpredictability, rapid onset, and potentially ominous effect on recovery and rehabilitation associated with delirium may create stressors distinct from the more familiar ADRD burden model of slower, more predictable, cognitive decline and loss of function . Established approaches of caregiver coping may be inadequate or less defined in an unfamiliar situation, leaving the delirium caregiver feeling loss of control, shock, fear, and distress .…”

Section: Discussionmentioning

confidence: 99%

“…The unpredictability, rapid onset, and potentially ominous effect on recovery and rehabilitation associated with delirium 24 may create stressors distinct from the more familiar ADRD burden model of slower, more predictable, cognitive decline and loss of function. 7,25 Established approaches of caregiver coping may be inadequate or less defined in an unfamiliar situation, 26 leaving the delirium caregiver feeling loss of control, shock, fear, and distress. 6,27 Delirium did not increase DEL-B-P scores in del+/ADRD+ patients.…”

Section: Discussionmentioning

confidence: 99%

“…6 Delirium can be burdensome for patient and caregiver 7,8 owing to the subjective distress (ie, fear, anxiety, suffering) associated with the experiential, emotional, and situational aspects of delirium. 7 ADRD also adversely impacts the health, socialization, and finances of caregivers, 9 with elevated stress levels in nearly 60%, depression in 40%, 10 and other burdens. 11,12 Delirium and ADRD often coexist, but the effect of delirium burden on ADRD patients, and their caregivers, has not been well studied.…”

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confidence: 99%

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The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

Fong

Racine

Fick

et al. 2019

J American Geriatrics Society

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Objectives: To measure the burden of delirium in older adults with or without Alzheimer disease or related disorders (ADRD) Design: Prospective, observational cohort Setting: Inpatient hospital, study participants’ homes Participants: A subset (n=267) of older medical and surgical patients and their caregivers enrolled in the Better Assessment of Illness (BASIL) study Measurements: Delirium burden was measured using the DEL-B instrument (range 0-40, higher scores indicate greater burden) in caregivers (DEL-B-C) and patients (DEL-B-P) one-month after hospitalization. Severity of cognitive impairment (Montreal Cognitive Assessment, MoCA), delirium presence (Confusion Assessment Method, CAM) and delirium severity (CAM-Severity, CAM-S) were measured during hospitalization and at one-month followup. ADRD diagnosis was determined by a clinical consensus process. Results: For patients with (n=56) and without (n=211) ADRD, both DEL-B instruments had good internal consistency. DEL-B-C scores had a median (interquartile range, IQR) among caregivers of patients with and without ADRD of 9 (5-15) and 5 (1-11), respectively (p<0.05). If the patient developed delirium, caregivers experienced greater burden (β[delirium×ADRD]=−0.29, p=.42), regardless of ADRD status. Further, caregiver burden was modestly correlated with patient MoCA scores (Spearman correlation coefficient, rho=−.18, p=.01). Patients with ADRD who developed delirium self-reported less burden than those without ADRD (β[delirium×ADRD]=−0.67, p=.044). As with caregivers, delirium burden was modestly correlated with patient MoCA score (rho=−.18, p=.005) and correlated with the CAM-S in patients without ADRD (rho=.38, p<.001) but not for patients with ADRD (rho=−.07, p=.61). Conclusions: Delirium resulted in the same degree of increased caregiver burden regardless of whether or not a patient had ADRD, signifying delirium is equally stressful to caregivers, even among those with experience caring for someone with a chronic cognitive disorder. Delirium burden is only modestly associated with degree of cognitive impairment, suggesting that other aspects of delirium contribute to burden.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

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The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

Fong

Racine

Fick

et al. 2019

J American Geriatrics Society

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“…However, patients often seek to comprehend their delirium experiences (O'Malley et al, 2008). Recent qualitative studies indicate that the delirium experience is associated with substantial burden (symptom burden, emotional burden and situational burden) for patients, family carers and hospital staff (Morandi et al, 2015; O'Malley et al, 2008; Schmitt et al, 2017). Between 28%–53% of patients recall their delirium experience, and delirium is associated with a moderate level of distress whether patients later recall it or not (Breitbart et al, 2002; Grover & Shah, 2011).…”

Section: Introductionmentioning

confidence: 99%

“You’ve got to keep moving, keep going”: Understanding older patients’ experiences and perceptions of delirium and nonpharmacological delirium prevention strategies in the acute hospital setting

Lee-Steere

Liddle

Mudge

et al. 2020

Journal of Clinical Nursing

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Aims and objectives To explore older inpatients’ experiences and perceptions of delirium and nonpharmacological delirium prevention strategies (NDPS). Background Delirium is a distressing and serious complication in hospitalised older adults. NDPS (supporting nutrition, mobility and cognitive participation) have strong supporting evidence. Few studies have explored older inpatients’ perspectives of these strategies. This information may assist staff to better support patient participation in NDPS. Design Qualitative study using an interpretive descriptive (ID) methodological approach to explore older patient's experience of delirium and NDPS. Methods Structured interviews of inpatients aged over 65 years across 6 medical and surgical wards explored patients’ experiences and perceptions of delirium and prevention activities related to nutrition, mobility and cognition; and barriers and enablers to participation. Reporting used COREQ. Results Twenty‐three participants were included (12 male, 11 reported delirium experience). Participants reported a range of physiological, emotional and psychological responses to delirium, hearing about delirium was different to experiencing it. Most participants were aware of the benefits of maintaining nutrition and hydration, physical activity and cognitive engagement in hospital. Barriers included poor symptom control, inflexible routines and inconsistent communication, whilst enablers included access to equipment, family involvement, staff encouragement and individual goals. These were organised into themes: outlook, feeling well enough, hospital environment, feeling informed and listened to, and support networks. Conclusion A more patient‐centred approach to delirium prevention requires consideration of older people's values, needs, preferences and fit within the hospital environment and routines. Feeling informed, listened to and receiving support from staff and family carers can improve older inpatients’ engagement in NPDS to prevent delirium in hospital. Relevance to clinical practice Nurses are ideally placed to improve patient participation in NDPS through holistic assessment and care, addressing symptoms, providing clear information about delirium and delirium prevention, and facilitating family carer support and patient interactions.

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“…Delirium is a common neuropsychiatric complication in the ICU that affects over 50% of critically ill patients [1][2][3] and is associated with negative short-term (e.g., longer ICU stay, increased ICU and in-hospital mortality) and long-term outcomes (e.g., post-intensive care syndrome, (PICS)) [4]. Family caregivers often experience distress from witnessing delirium in their loved ones [5][6][7][8], which can lead to the development of adverse psychological outcomes after ICU discharge known as PICS-Family [9][10][11]. The Society of Critical Care Medicine guidelines for family-centred care in the ICU [12] suggest providing family education programs and including family caregivers in patient care has the potential to improve family caregiver-centred outcomes [10,12].…”

Section: Introductionmentioning

confidence: 99%

Psychometric evaluation of the family caregiver ICU delirium knowledge questionnaire

Krewulak

Bull

Ely

et al. 2020

BMC Health Serv Res

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Background: Delirium is a common condition in critically ill patients, affecting nearly half of all patients admitted to an intensive care unit (ICU). Family caregivers of critically ill patients can be partners in the early recognition, prevention and management of delirium provided they are aware of the signs/symptoms and appropriate nonpharmacological strategies that might be taken. Valid, reliable instruments that assess family caregiver knowledge are essential so that nurses can prepare family caregivers to be effective partners. The purpose of the current study was to (a) adapt an existing caregiver delirium knowledge questionnaire (CDKQ) for use by nurses to measure a family caregiver's delirium knowledge in the ICU; and (b) examine the psychometric properties and structure of the adapted Caregiver ICU Delirium Knowledge Questionnaire (CIDKQ). Methods: In this cross-sectional study, a multidisciplinary team developed the 21-item CIDKQ (possible score range: 0-21) and administered it to 158 family caregivers of critically ill patients. Descriptive statistics were examined for all variables. The CIDKQ was analyzed for face validity, content validity, reliability and internal consistency. Results: The mean CIDKQ score was 14.1 (SD: 3.5, range = 2 to 21). Path analysis revealed that a family caregiver's delirium knowledge in the actions and symptoms dimensions had a direct effect on knowledge of delirium risk factors. The CIDKQ was found to have face validity and reliability (Cronbach's α = 0.79). Conclusions: The findings indicated good validity and reliability of the CIDKQ as a measure of ICU delirium knowledge in family caregivers of critically ill patients.

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Perspectives on the Delirium Experience and Its Burden: Common Themes Among Older Patients, Their Family Caregivers, and Nurses

Cited by 90 publications

References 41 publications

The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

“You’ve got to keep moving, keep going”: Understanding older patients’ experiences and perceptions of delirium and nonpharmacological delirium prevention strategies in the acute hospital setting

Psychometric evaluation of the family caregiver ICU delirium knowledge questionnaire

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