Family caregiver’s concerns and anxiety about unaccompanied out-of-home activities of persons with cognitive impairment

Although people with cognitive impairment highly value social participation in out-of-home activities, their families typically perceive concerns and experience anxiety over such activities. This study aimed to elucidate the underlying concerns and factors associated with family caregivers’ anxiety over the individual’s unaccompanied out-of-home activities.

In December 2021, we conducted a cross-sectional e-survey of family caregivers of individuals with early-stage cognitive impairment. Caregivers’ concerns about ten common risks related to out-of-home activities were cross-tabulated by specific anxiety levels to examine trend associations. With the variables of caregivers and their individuals across the five domains, we ran logistic regression analyses to determine explanatory models for anxiety.

The study participants were 1,322 family caregivers of people whose cognitive function varied from intact to possible mild dementia according to the Dementia Assessment Sheet for Community-based Integrated Care System 8-item. Significant associations were found between the prevalence of concerns and the degree of anxiety, even without actual experience with the issues of concern. Among the five domains, individual dementia characteristics and social behaviors were the predominant factors attributed to caregiver anxiety. Caregivers’ no anxiety state was significantly associated with: younger age (OR 4.43, 95% CI 1.81–10.81), no detectable cognitive decline (OR 3.34, 95% CI 1.97–5.64), free from long-term care (LTC) (OR 3.52, 95% CI 1.72–7.21), no manifestation of behavioral and psychological symptoms of dementia (BPSD) (OR 13.22, 95% CI 3.06–57.01), and not engaging in unaccompanied out-of-home activities (OR 3.15, 95% CI 1.87–5.31). Their severe anxiety was positively associated with being on LTC (OR 3.39, 95% CI 2.43–4.72) and minor BPSD (OR 1.43, 95% CI 1.05–1.95), and negatively associated with engagement in unaccompanied out-of-home activities (OR 0.31, 95% CI 0.23–0.43).

The study found that family caregivers’ anxiety was associated with concerns about behavioral issues, regardless of actual experiences. There were two significant associations in opposite directions between caregivers’ anxiety and the individual’s engagement in out-of-home activities. In the early phase of cognitive impairment, caregivers may intuitively interpret the individual’s behavior and feel anxious. Educational support may provide reassurance and enable caregivers to facilitate out-of-home activities.