Views of Older Adults on Using Support to Prevent Overload in Informal Caregivers: Results of a Story Completion Study

Abstract

Older care recipients living at home increasingly rely on support from informal caregivers. As informal caregivers often combine these caregiving tasks with other tasks, such as paid work, they are at risk of becoming overloaded. To decrease informal caregiver burden, different forms of support are available that also affect older care recipients’ lives, such as respite care, technology, or home care. The aim of this qualitative study was to obtain more insight into the perceptions, potential concerns and preferences of older informal care recipients about the use of support to relieve informal caregivers. We performed a story completion writing task among 23 informal care recipients aged 65 years or older, using hypothetical situations to let them reflect on different caregiver relief support options. The task was followed-up by a story-mediated interview. We used thematic analysis to inductively analyze story completions and interviews. We found that older informal care recipients were often willing to use support to relieve their caregivers, to ensure their wellbeing. However, they were also concerned about how the use of such support may conflict with their interests, preferences and values (e.g. respect for their autonomy, privacy, having a trusting relationship with a caretaker, paying attention to human aspects in care). Older adults were most hesitant to use adult day care facilities and technological support options. While these areas of tensions cannot always be completely resolved, it is important to jointly identify and discuss these, and work towards solutions to balance the respective interests, values and needs of older adults and caregivers. Health and social care professionals and older adults’ personal networks may help in overcoming hesitation to use support.