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.

Methods

A 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.

Results

Spouses (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.

Conclusion

The 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.

中文翻译：

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为早发性痴呆患者的家庭照顾者定制和评估基于网络的“平衡伙伴”干预

早发性痴呆 (YOD) 对相关护理人员提出了具体挑战。然而，大多数可用的支持并不能满足他们的特定需求。此前，基于网络的“平衡合作伙伴”干预显示出可喜的结果，并促进了痴呆症护理人员的角色适应。尽管基于网络的格式证明非常适合 YOD 护理人员，但评估表明需要在 YOD 上定制内容。因此，针对YOD患者的配偶和其他家庭照顾者分别迭代开发了新的内容。本研究评估了护理人员对定制内容的看法。

方法

使用前后期设计来前瞻性地评估最终用户如何看待两种量身定制的“平衡合作伙伴”干预版本，一种用于配偶，另一种用于 YOD 患者的其他家庭成员。干预后，参与者接受了约 60 分钟的面对面访谈或使用项目参与问卷通过电话访谈。定性演绎内容分析用于评估（1）可用性，（2）可行性和可接受性，（3）对干预内容的看法。为了评估干预是否促进了角色适应，使用关于自我效能、掌握、压力、焦虑和抑郁的事前问卷调查了初步效果。

结果

配偶（n  = 11）和其他家庭成员（n = 14) 都积极评价了 YOD 上的定制内容，并认为基于网络的方法可以很容易地融入日常生活。参与者认为干预是有用的、可行的和可接受的。参与者重视内容的可识别性。目标设定帮助参与者将干预转化为日常生活，尽管对于一些参与者来说设定目标很困难。额颞叶痴呆患者的看护人建议纳入特定内容以进一步提高可识别性。参与后，参与者感觉更好地承担了看护角色。与之前证明的对平衡伴侣通用模块的影响一致，定制版本提高了其他家庭照顾者群体的自我效能水平，t (12) = 3.37，p  = .006。

结论

YOD 护理人员对量身定制的平衡干预合作伙伴进行了积极评价。为参与者提供更多关于目标设定的指导并添加有关额颞叶痴呆的内容可能有助于实施。