Shared-Action-for-Breaking-through-Apathy: a new program to identify and manage apathyin people with dementia in nursing homes

Objective: Explore experiences in identifying and managing apathy in nursing homes from the perspective of residents withdementia and apathy (residents), family caregivers (FCs) and professional caregivers (PCs), and develop and evaluate aprogram for identifying and managing apathy in nursing homes.
Methods: Qualitative study with semi-structured interviews with residents (n=2), FCs (n=4), PCs (n= 23) and focus groups(n=12 PCs). Using thematic analyses, themes were identified relevant for the identification and management of apathy.Hereafter, an intervention was developed applying intervention mapping together with caregivers, and tested in a feasibilitystudy using interviews (n=7 FCs, n=4 PCs), and focus groups (n=11 PCs).
Results: Identified themes were: 1) relevance of signals, 2) impact on wellbeing, 3) skills and capabilities. Participants haddifficulties appraising signals of apathy and the impact of apathy varied per stakeholder. Apathy was experienced challengingwhen it reduced the well-being of residents or when caregivers had negative feelings. Managing apathy required adjustingone’s expectations, appreciating little successes, and striving for meaningful contact.
The Shared-Action-for-Breaking-through-Apathy-program (SABA) was developed. According to caregivers, SABA enabled themto increase knowledge and awareness for recognizing apathy and increased their apathy-management skills through focusingon small-scale activities and appreciation of small successes. Perceived facilitators to implementing SABA were the content,form and accessibility of SABA’s materials and procedures. Their practical use and compatibility were satisfying. Expertise andinvolvement of stakeholders, stimulating physical environment with small-scale living room, access to supplies for activities alsowere facilitating. Perceived barriers were suboptimal collaboration, not prioritizing apathy, staff discontinuity and Covid-19.
Conclusions: It is important to consider that apathy negatively influences the well-being of people with dementia and especiallytheir caregivers. SABA empowers FCs and PCs to identify and manage apathy. For implementing SABA, it is important toconsider the found facilitators and barriers.