Caregiver burden and neuropsychiatric symptoms in older adults with cognitive impairment: the Aging, Demographics, and Memory Study (ADAMS)

Abstract

Objectives: To estimate the quantity of informal care associated with neuropsychiatric symptoms in older adults with cognitive impairment.

Design: Cross-sectional analysis.

Setting: The Aging, Demographics, and Memory Study.

Participants: A sample (n=450) of adults aged 71 years and older with cognitive impairment drawn form the Health and Retirement Study.

Measurements: The presence of neuropsychiatric symptoms (delusions, hallucinations, agitation, depression, apathy, elation, anxiety, disinhibition, irritation, and aberrant motor behaviors) was identified using the neuropsychiatric inventory. Cognitive category [normal, cognitive impairment without dementia (CIND), or dementia] was assigned by a consensus panel. The hours per week of active help and supervision were ascertained by informant questionnaire.

Results: Among older adults with CIND or dementia, those with no neuropsychiatric symptoms received an average of 10.2 hours of active help and 10.9 hours of supervision per week from informal caregivers. Those with 1 or 2 neuropsychiatric symptoms received an additional 10.0 hours of active help and 12.4 hours of supervision per week, while those with 3 or more symptoms received an additional 18.2 hours of active help and 28.7 hours of supervision per week (P<0.001). The presence of irritation (14.7 additional hours) was associated with the greatest number of additional hours of active help. The presence of aberrant motor behaviors (17.7 additional hours) and disinhibition (17.5 additional hours) were associated with the greatest number of additional hours of supervision.

Conclusions: Neuropsychiatric symptoms among those with CIND or dementia are associated with a significant increase in the provision of informal care. This care represents a significant time commitment for families and a significant economic cost to society.

Figures

Figure 1. Informal Caregiving Hours Attributable to Neuropsychiatric Symptoms

Adjusted informal care hours were estimated using a two-part multivariable regression model that adjusted for sociodemographic characteristics, cognitive category (cognitive impairment without dementia; mild, moderate, or severe dementia), and medical comorbidities. *Clinically significant symptoms are defined as a frequency score times severity score of ≥4. Whiskers indicate 95% confidence intervals. NPI = Neuropsychiatric Inventory.

Figure 2. Incremental Caregiving Hours Attributable to Individual Neuropsychiatric Symptoms

Adjusted informal care hours were estimated using a two-part multivariable regression model that adjusted for sociodemographic characteristics, cognitive category (cognitive impairment without dementia; mild, moderate, or severe dementia), medical comorbidities, and other co-occurring symptoms. *Clinically significant symptoms are defined as a frequency score times severity score of ≥4. Caregiving hours for elation could not be estimated because of small sample size. Whiskers indicate 95% confidence intervals.