Global Brain Health Institute, Trinity College Dublin, Dublin, Ireland.
Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK.
Disabil Rehabil. 2022 Sep;44(18):5069-5081. doi: 10.1080/09638288.2021.1923071. Epub 2021 May 23.
Aging-related sensory impairments are among the most common and disabling comorbidities in people with dementia (PwD). This study explored the unmet support care needs (SCNs) from the perspectives of people with hearing and/or vision impairment in dementia (PwD), and their care partners in Europe.
This was a two-phase mixed methods study. We administered standardized questionnaires of SCNs and quality of life (QoL) to PwD with hearing and/or vision impairment ( = 97), and their care partners ( = 97) in the UK, France, and Cyprus. Next, a purposive sub-sample of 34 participants (PwD and care partners) participated as focus groups (FGs) or semi-structured interviews to explore their SCNs in depth.
Over 94% of the participants reported unmet SCNs (median, 13 (range 5-23)). Nearly three-quarters reported SCNs in the moderate to high range, with the most prevalent unmet SCNs for PwD being in the psychological (>60%) and physical domains (>56%), followed by the need for health information (>46%). Emergent qualitative themes were: (1) the need for tailored support care interventions; (2) care burden, social isolation, and loneliness arising from the combined problems; (3) the need for adequate support from professionals from the different fields, including education around the use of sensory aids. Both study phases revealed that SCNs were highly individualized.
This cross-national study revealed that PwD with sensory impairment and their care partners experience a wide range of unmet SCNs, the interactions between sensory impairments, SCNs and QoL are also complex. A tailored intervention could address these unmet SCNs, including additional support with sensory aids, psychological support, more information about concurrent impairments, and joined up health systems providing care.Implications for rehabilitationA majority of participants with combined age-related hearing, vision, and cognitive impairment had unmet SCNs.The needs of care partners including the risk of loneliness and social isolation, need to be considered.Individually tailored, specific interventions for hearing, vision, and cognitive impairment should incorporate physical and psychological support, as well as education.
与衰老相关的感觉障碍是痴呆症患者（PwD）最常见和最致残的合并症之一。本研究从听力和/或视力障碍痴呆症患者（PwD）及其在欧洲的护理伙伴的角度探讨了未满足的支持性护理需求（SCN）。
这是一项两阶段混合方法研究。我们向英国、法国和塞浦路斯的 97 名听力和/或视力障碍的 PwD 及其 97 名护理伙伴（护理伙伴）发放了 SCN 和生活质量（QoL）的标准化问卷。然后，对 34 名参与者（PwD 和护理伙伴）进行了有针对性的小组抽样，进行焦点小组（FG）或半结构化访谈，以深入探讨他们的 SCN。
超过 94%的参与者报告存在未满足的 SCN（中位数为 13[范围 5-23]）。近四分之三的参与者报告 SCN 处于中到高范围，听力和/或视力障碍患者最常见的未满足 SCN 是心理（>60%）和身体（>56%）领域，其次是对健康信息的需求（>46%）。出现的定性主题包括：（1）需要量身定制的支持性护理干预；（2）由于合并问题而产生的护理负担、社会孤立和孤独；（3）需要来自不同领域的专业人员提供足够的支持，包括围绕使用感官辅助工具的教育。两个研究阶段都表明，SCN 是高度个体化的。
这项跨国研究表明，有感官障碍的 PwD 及其护理伙伴经历了广泛的未满足的 SCN，感官障碍、SCN 和 QoL 之间的相互作用也很复杂。量身定制的干预措施可以解决这些未满足的 SCN，包括提供感官辅助工具、心理支持、更多关于并存障碍的信息以及提供护理的联合健康系统。
大多数同时患有与年龄相关的听力、视力和认知障碍的参与者都有未满足的 SCN。需要考虑护理伙伴的需求，包括孤独和社会隔离的风险。针对听力、视力和认知障碍的个性化、具体干预措施应包括身体和心理支持以及教育。
