Using a patient-centered approach, we explored the experiences and needs of people living with dementia and their care partners during the COVID-19 pandemic as part of an ongoing evaluation of dementia support services in British Columbia, Canada.
A survey instrument was developed around the priorities identified in the context of the COVID-19 and Dementia Task Force convened by the Alzheimer Society of Canada.
A total of 417 surveys were analyzed. Overall, respondents were able to access information that was helpful for maintaining their own health and managing a period of social distancing. Care partners reported a number of serious concerns, including the inability to visit the person that they care for in long-term or palliative care. Participants also reported that the pandemic increased their levels of stress overall and that they felt lonelier and more isolated than they did before the pandemic. The use of technology was reported as a way to connect socially with their loved ones, with the majority of participants connecting with others at least twice per week.
Looking at the complex effects of a global pandemic through the experiences of people living with dementia and their care partners is vital to inform healthcare priorities to restore their quality of life and health and better prepare for the future.
使用以患者为中心的方法,我们探索了在COVID-19大流行期间痴呆症患者及其护理伙伴的经验和需求,作为不列颠哥伦比亚省痴呆症支持服务持续评估的一部分,加拿大。
围绕加拿大阿尔茨海默氏症协会召集的COVID-19和痴呆症工作组确定的优先事项开发了一种调查工具。
共分析了417项调查。总的来说,受访者能够获得有助于维护自己健康和管理一段时间社交距离的信息。护理伙伴报告了一些严重的问题,包括无法在长期或姑息治疗中探视他们所照顾的人。参与者还报告说,大流行增加了他们的整体压力水平,与大流行前相比,他们感到更加孤独和孤立。据报道,使用技术是与亲人进行社交联系的一种方式,大多数参与者每周至少与他人联系两次。
通过痴呆症患者及其护理伙伴的经历来观察全球大流行的复杂影响,对于告知医疗保健优先事项以恢复他们的生活质量和健康并更好地为未来做好准备至关重要。