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.

中文翻译：

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定制基于网络的“平衡伙伴”干预措施，以支持额颞叶痴呆患者的配偶

额颞叶痴呆 (FTD) 通常在 65 岁之前开始，其症状不同于其他痴呆症（例如阿尔茨海默病痴呆）。配偶通常是照顾者，难以应对伴随 FTD 带来的性格和行为的深刻变化。这些配偶可获得的大多数干预措施都无法满足他们对量身定制和灵活的社会心理支持的需求。因此，为 FTD 患者的配偶量身定制的内容最近被纳入经证明有效且基于网络的“平衡伙伴”干预中。

方法

该可行性研究前瞻性地评估了为 FTD 患者的配偶量身定制的“平衡伙伴”内容。配偶遵循为期 8 周的干预，并使用定性和定量措施来评估参与前的期望和障碍以及内容的可用性、可行性和可接受性方面。此外，还探讨了照顾者自我效能感、掌控感、压力、抑郁和焦虑的影响。

结果

在家照顾患有 FTD 的配偶的 27 名配偶开始了干预。最终，20 人完成了干预（74.1%）。Partner in Balance 符合参与配偶的期望，帮助他们在照顾和个人生活之间找到更好的平衡，让他们更加安心，并有助于应对行为和沟通方面的困难。在参与之前，时间限制被认为是一个潜在的障碍，但之后配偶们积极评价了基于网络的方法的灵活性，使他们能够在方便的时间和地点参与。他们重视 FTD 视频和叙事故事的可识别性。干预后，配偶在质量上感到更自信、更自在，并作为照顾者得到加强。定量地，自我效能水平，

结论

平衡伴侣是一种可用、可行和可接受的干预措施，适用于在家照顾患有 FTD 的配偶的配偶。医疗机构可​​以考虑在日常实践中采用 Partner in Balance，为配偶提供灵活和量身定制的支持。