The Impact of Agitation in Dementia on Caregivers: A Real-World Survey

Abstract

Background: Dementia patients frequently depend on caregivers. Agitation is a common behavioral dementia symptom particularly burdensome to patients and caregivers.

Objective: To assess the association of agitation severity with non-professional caregiver hours, burden, health status, and productivity. Secondarily, to assess the association of agitation severity with these outcomes for patients receiving remote (not living with the patient) and proximate (living with the patient) caregiving.

Methods: A retrospective analysis of physician and non-professional caregiver-reported data from a US point-in-time survey. Patients were aged ≥50 years, with early cognitive impairment or dementia. Regression analyses compared outcomes by agitation severity; covariates included age, sex, and clinical characteristics.

Results: Data were included for 1,349 patients (non-agitated n = 656, agitated n = 693; no care n = 305, remote care n = 248, proximate care n = 691; unknown care n = 105). Greater agitation was significantly associated (p < 0.05) in all caregivers with increasing: Zarit Burden Interview (ZBI) Total Caregiver Burden, Personal Strain, Role Strain, and Guilt; Work Productivity and Activity Index (WPAI) presenteeism, overall work impairment, and total activity impairment. Higher ZBI Total Caregiver Burden, Personal Strain, and Role Strain were associated with greater agitation in proximate caregivers and higher ZBI Guilt associated with greater agitation in remote caregivers (p < 0.05). Higher WPAI presenteeism and total activity impairment were associated (p < 0.05) with greater agitation in proximate caregivers. Caregiving hours increased with increasing agitation for proximate caregiving (p = 0.001).

Conclusion: Greater agitation severity was associated with higher caregiver burden and lower productivity, with higher indirect costs a likely outcome of agitation.

Keywords: Alzheimer’s disease; caregiver burden; cognitive impairment; dementia; real-world.

Fig. 1

Negative binomial regression analysis of caregiver hours by agitation score –all patients. An IRR significantly different from 1 indicates caregiver hours differ significantly for different agitation scores; an IRR > 1 implies greater hours with higher agitation scores, an IRR < 1 implies fewer hours with higher agitation scores. All regressions were controlled for patient demographics (age and sex) and clinical characteristics (time since diagnosis, current MMSE score). Coef, coefficient; CI, confidence interval; IRR, incidence rate ratio; MMSE, Mini-Mental State Examination.

Fig. 2

Linear regression analysis of caregiver burden assessed with ZBI by agitation score –all patients. A regression coefficient significantly different from 0 indicates the predicted outcomes differs significantly for different agitation scores; a coef > 0 implies a worse outcome with higher agitation scores, a coef < 0 implies a better outcome with higher agitation scores. All regressions were controlled for patient demographics (age and sex) and clinical characteristics (time since diagnosis, current MMSE score). Coef, coefficient; CI, confidence interval; MMSE, Mini-Mental State Examination; ZBI, Zarit Burden Interview.

Fig. 3

Linear regression analysis of WPAI-assessed productivity and activity by agitation score –all patients. A regression coefficient significantly different from 0 indicates the predicted outcomes differs significantly for different agitation scores; a coef > 0 implies a worse outcome with higher agitation scores, a coef < 0 implies a better outcome with higher agitation scores. All regressions were controlled for patient demographics (age and sex) and clinical characteristics (time since diagnosis, current MMSE score). Coef, coefficient; CI, confidence interval; MMSE, Mini-Mental State Examination; WPAI, Work Productivity and Activity Index.

Fig. 4

Linear regression analysis of caregiver hours by agitation score and type of care. Proximate Care, caregiver living with patient; Remote Care, caregiver not living with patient. An IRR significantly different from 1 indicates caregiver hours differ significantly for different agitation scores; an IRR > 1 implies greater hours with higher agitation scores, an IRR < 1 implies fewer hours with higher agitation scores. All regressions were controlled for patient demographics (age and sex) and clinical characteristics (time since diagnosis, current MMSE score). Coef, coefficient; CI, confidence interval; IRR, incidence rate ratio; MMSE, Mini-Mental State Examination.

Fig. 5

Linear regression analysis of caregiver burden assessed with ZBI by agitation score and type of care. Proximate Care, caregiver living with patient; Remote Care, caregiver not living with patient. A regression coefficient significantly different from 0 indicates the predicted outcomes differs significantly for different agitation scores; a coef > 0 implies a worse outcome with higher agitation scores, a coef < 0 implies a better outcome with higher agitation scores. All regressions were controlled for patient demographics (age and sex) and clinical characteristics (time since diagnosis, current MMSE score). Coef, coefficient; CI, confidence interval; MMSE, Mini Mental State Examination; ZBI, Zarit Burden Interview.

Fig. 6

Linear regression analysis of WPAI-assessed productivity and activity by agitation score and type of care. Proximate Care, caregiver living with patient; Remote Care, caregiver not living with patient. A regression coefficient significantly different from 0 indicates the predicted outcomes differs significantly for different agitation scores; a coef > 0 implies a worse outcome with higher agitation scores, a coef < 0 implies a better outcome with higher agitation scores. All regressions were controlled for patient demographics (age and sex) and clinical characteristics (time since diagnosis, current MMSE score). Coef, coefficient; CI, confidence interval; MMSE, Mini Mental State Examination; WPAI, Work Productivity and Activity Index.