Tailoring and evaluating the web-based ‘Partner in Balance’ intervention for family caregivers of persons with young-onset dementia

Abstract

Young-onset dementia (YOD) poses specific challenges for caregivers involved. However, most available support does not address their specific needs. Previously, the web-based Partner in Balance intervention showed promising results and facilitated role adaptation in dementia caregivers. Although the web-based format proved a good fit for YOD caregivers, the evaluation showed a need for tailored content on YOD. Therefore, new content was iteratively developed respectively for spouses and other family caregivers of persons with YOD. This study evaluates how caregivers perceived the tailored content. MethodsA pre-post design was used to prospectively evaluate how end-users perceived two tailored versions of the Partner in Balance intervention, one for spouses and one for other family members of people with YOD. After the intervention, participants were interviewed for approximately 60 min in-person or by telephone using the Program Participation Questionnaire. A qualitative deductive content analysis was used to evaluate (1) usability, (2) feasibility and acceptability, (3) perceptions on intervention content. To evaluate if the intervention facilitated role adaptation, preliminary effects were examined using pre-post questionnaires on self-efficacy, mastery, stress, anxiety and depression. ResultsSpouses (n = 11) and other family members (n = 14) both positively evaluated the tailored content on YOD and valued that the web-based approach could easily be integrated in daily life. Participants perceived the intervention as usable, feasible and acceptable. Participants valued the recognizability of the content. Goal-setting helped participants to translate the intervention to daily life, although for some participants setting goals was difficult. Caregivers of persons with frontotemporal dementia suggested incorporating specific content to further increase recognizability. After participation, participants felt better equipped for the caregiving role. In line with previously demonstrated effects on generic modules of Partner in Balance, the tailored version increased levels of self-efficacy in the group of other family caregivers, t(12) = 3.37, p = .006. ConclusionThe tailored Partner in Balance intervention was positively evaluated by YOD caregivers. Offering participants more guidance on goal-setting and adding content about frontotemporal dementia may facilitate implementation.