Department of Neurological Sciences, Rush University Medical Center, Chicago, IL, USA.
Department of Neurological Sciences, Rush University Medical Center, Chicago, IL, USA.
Parkinsonism Relat Disord. 2023 Aug;113:105492. doi: 10.1016/j.parkreldis.2023.105492. Epub 2023 Jun 24.
Lewy Body Disease (LBD) is the second most common neurodegenerative disorder. Despite high family caregiver strain and adverse patient and caregiver outcomes, few interventions exist for LBD family caregivers. Based on a successful peer mentoring pilot study in advanced Parkinson's Disease, we revised the curriculum of this peer-led educational intervention incorporating LBD caregiver input.
We assessed feasibility of a peer mentor-led educational intervention and its impact on LBD family caregivers' knowledge, dementia attitudes, and mastery.
Using community-based participatory research, we refined a 16-week peer mentoring intervention and recruited caregivers online through national foundations. Experienced LBD caregiver mentors were trained and matched with newer caregiver mentees with whom they spoke weekly for 16 weeks, supported by the intervention curriculum. We measured intervention fidelity biweekly, program satisfaction, and change in LBD knowledge, dementia attitudes, and caregiving mastery before and after the 16-week intervention.
Thirty mentor-mentee pairs completed a median of 15 calls (range: 8-19; 424 total calls; median 45 min each). As satisfaction indicators, participants rated 95.3% of calls as useful, and at week 16, all participants indicated they would recommend the intervention to other caregivers. Mentees' knowledge and dementia attitudes improved by 13% (p < 0.05) and 7% (p < 0.001), respectively. Training improved mentors' LBD knowledge by 32% (p < 0.0001) and dementia attitudes by 2.5% (p < 0.001). Neither mentor nor mentee mastery changed significantly (p = 0.36, respectively).
This LBD caregiver-designed and -led intervention was feasible, well-received, and effective in improving knowledge and dementia attitudes in both seasoned and newer caregivers.
https://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov Identifier: NCT04649164; December 2, 2020.
路易体病（LBD）是第二常见的神经退行性疾病。尽管家庭照顾者承受着巨大的压力，患者和照顾者的结局也较差，但针对 LBD 家庭照顾者的干预措施却很少。基于一项在晚期帕金森病中成功实施的同伴导师试点研究，我们修改了这一由同伴主导的教育干预课程，并纳入了 LBD 照顾者的意见。
我们评估了由同伴导师主导的教育干预措施的可行性，以及其对 LBD 家庭照顾者知识、痴呆态度和掌握程度的影响。
我们采用社区参与式研究方法，对 16 周的同伴导师指导干预措施进行了改进，并通过国家基金会在网上招募照顾者。经验丰富的 LBD 照顾者导师接受了培训，并与新的照顾者学员配对，他们每周通话一次，持续 16 周，同时辅以干预课程。我们在干预前和干预后每两周测量一次干预的忠实度、方案满意度以及 LBD 知识、痴呆态度和照顾掌握程度的变化。
30 对导师-学员完成了中位数为 15 次通话（范围：8-19 次；总计 424 次通话；中位数每次通话 45 分钟）。作为满意度指标，参与者对 95.3%的通话表示有用，在第 16 周，所有参与者均表示会向其他照顾者推荐该干预措施。学员的知识和痴呆态度分别提高了 13%（p<0.05）和 7%（p<0.001）。导师的 LBD 知识培训提高了 32%（p<0.0001），痴呆态度提高了 2.5%（p<0.001）。导师和学员的掌握程度均无显著变化（分别为 p=0.36）。
这种由 LBD 照顾者设计和主导的干预措施是可行的、深受欢迎的，可有效提高有经验和新的照顾者的知识和痴呆态度。
https://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov 标识符：NCT04649164；2020 年 12 月 2 日。
