Tailoring the web-based ‘Partner in Balance’ intervention to support spouses of persons with frontotemporal dementia

Abstract

Frontotemporal dementia (FTD) typically starts before the age of 65 years, and symptoms differ from other dementias (e.g. Alzheimer's dementia). Spouses are often caregiver and experience difficulty coping with the profound changes in personality and behavior accompanying FTD. Most interventions available to these spouses do not match their need for tailored and flexible psychosocial support. Therefore, tailored content for spouses of persons with FTD was recently incorporated in the proven effective and web-based Partner in Balance intervention. Methods This feasibility study prospectively evaluated the tailored Partner in Balance content for spouses of persons with FTD. Spouses followed the 8-week intervention, and qualitative and quantitative measures were used to evaluate expectations and barriers prior to participation and aspects of usability, feasibility, and acceptability of content. Additionally, effects were explored regarding caregiver self-efficacy, sense of mastery, stress, depression and anxiety. Results Twenty-seven spouses caring for a spouse with FTD at home started the intervention. Eventually, 20 completed the intervention (74.1%). Partner in Balance matched the expectations of participating spouses and helped them to find a better balance between caregiving and personal life, acquire more peace of mind, and facilitated coping with behavioral and communication difficulties. Before participation, time restraints were identified as a potential barrier, but afterwards spouses positively evaluated the flexibility of the web-based approach that allowed them to participate at a convenient time and place. They valued the recognizability of the videos and narrative stories on FTD. Post-intervention, spouses qualitatively felt more confident, more at ease, and strengthened as a caregiver. Quantitatively, levels of self-efficacy, anxiety and depression significantly improved. Conclusions Partner in Balance is a usable, feasible, and acceptable intervention for spouses caring for a spouse with FTD at home. Healthcare organizations could consider adopting Partner in Balance in their daily practice to offer flexible and tailored support to spouses.

Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis

“…Interventions tended to be well-designed and easy to use [ 98 , 105 , 108 - 110 , 113 , 116 , 117 , 124 - 127 , 131 - 134 , 136 - 138 , 141 , 143 , 146 ]. There were mixed views on whether caregivers preferred dyadic or individual interventions [ 109 , 110 , 125 , 135 , 139 , 140 ]; however, there was generally a need for space to be created to allow caregivers to express themselves without the presence of care recipients [ 119 , 123 ].…”

“…Interventions using different forms of media to deliver content [ 120 , 127 , 138 , 144 ] and supporting the use of interventions across devices (eg, ability to use intervention on a smartphone and computer) [ 132 , 144 ] made it easier for caregivers to use interventions. Tailored intervention content (eg, tailored to the care recipient’s stage of disease) [ 126 , 131 , 138 , 140 , 143 , 144 ], the provision of professional support [ 114 , 119 , 126 , 127 , 131 - 133 , 135 , 136 ,​ 138 - 141 , 143 , 144 ], a positive tone for information that was presented [ 125 , 127 , 138 , 140 ], and contact with information from other caregivers [ 114 , 120 , 126 , 127 , 131 , 132 , 136 , 138 - 140 ,​ 143 , 144 ] were important features to ensure interventions were relevant and met the needs of caregivers.…”

“…Interestingly, although caregivers expressed a preference for flexible use options, such as accessing modules on demand based on their needs [ 108 , 113 , 120 , 125 - 127 , 131 , 132 ,​ 134 , 136 , 138 - 140 ], stakeholders suggested a need to control module access to guide caregivers through the intervention and avoid confusion [ 127 ]. Stakeholders also valued interventions with features that supported user tracking to facilitate monitoring and evaluation of the implementation of the intervention [ 128 ] (also see inner setting: goals and feedback in Multimedia Appendix 5 ).…”

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

“…Furthermore, participants highlighted that it was pleasing to receive information tailored for different YOD-subtypes. Previous research has confirmed that caregivers have a need for YOD-subtype specific information ( Bannon et al, 2021 ; Bruinsma et al, 2021b ; Rosness et al, 2008 ). As known, support mainly focuses on Alzheimer's dementia or older peers ( Cations et al, 2017 ; Mayrhofer et al, 2018 ).…”

“…The RHAPSODY program could serve as a stepping stone for caregivers to participate in other support options. For example, in the Netherlands, tailored support is available that blends a web-based approach with personal coaching, namely the Partner in Balance intervention ( Bruinsma et al, 2021a ; Bruinsma et al, 2021b ). Lastly, although the current study showed good user acceptability, usability, and user satisfaction of the Dutch RHAPSODY program, a direction for future research would be to explore the long-term effects on caregiver well-being and coping skills.…”