Effects of time and difficulty of help-seeking on caregivers' desire for nursing home placement for people with suspected dementia

Abstract

Caregivers’ desire to have people with dementia (PwDs) in their care admitted to nursing homes as an outcome of caregiving stress has been studied. However, previous research has mainly focused on the caregiving experience that started after a diagnosis of dementia had been confirmed. Stress affecting caregivers as early as when they start to become actively involved in seeking formal help has not been included. Guided by the Stress Process Model, the present study aims to examine the effects of time and caregivers’ perceived difficulty of help-seeking on their desire for nursing home placement (NHP) for their PwDs, and how those two factors interact with other known stressors which occur in the stress process of caregiving. The time of help-seeking and caregivers’ perceived difficulty of the help-seeking process are hypothesized to directly or indirectly affect the caregivers’ desire for NHP, and utilization of community support services is hypothesized to be a moderating resource that reduces the caregivers’ desire for NHP. A theoretical model has been constructed to expand the stress process of dementia caregiving to cover the caregivers’ early stages of help-seeking experience. Methods: The study recruited 110 dyads of caregivers and people with suspected dementia from an early detection service for dementia in Hong Kong. A total of six groups of regression analyses were conducted to test the relationships between the variables in the proposed theoretical model and to examine whether utilization of community support services is a moderator of the stress process experienced by caregivers from when they first started help-seeking to when they desired NHP. Further analysis was conducted to identify the barriers associated with time and caregivers’ perceived difficulty of help-seeking. Results: Caregivers’ perceived difficulty of help-seeking was found to be directly affecting their desire for NHP. In contrast, the time of help-seeking is indirectly associated with the caregivers’ desire for NHP through the severity of the PwDs’ behavioural problems, which in turn, intensifies the strain on the caregivers’ role. Caregivers’ role strain then results in their increased negative emotions, eventually increasing their desire for NHP. The utilization of community support services moderated the effect of the PwD’s behavioural problems on the caregiver’s desire for NHP. For those dyads where the PwDs had behavioural problems and where they had used community support services, there was a reduction in the odds of the caregivers’ desire for NHP. The moderating effect was more obvious when the PwD’s behavioural problems were more serious. Service accessibility gave rise to the most significant barrier that increased the caregivers’ perceived difficulty in the help-seeking process. Conclusions: Enhancing the help-seeking process of the caregivers of PwDs is vital as to whether they seek help early and whether the caregivers perceived the process as being too difficult would eventually affect the caregivers’ desire for NHP. Problems with service accessibility have to be identified to ease the associated difficulties, so as to lessen caregivers’ desire to commit the PwD to an institution. It would also allow the PwDs to age in a familiar home environment.