Cations Monica, Withall Adrienne, Horsfall Ruth, Denham Nicole, White Fiona, Trollor Julian, Loy Clement, Brodaty Henry, Sachdev Perminder, Gonski Peter, Demirkol Apo, Cumming Robert G, Draper Brian
School of Public Health and Community Medicine, UNSW Australia, Syndey, NSW, Australia.
Dementia Collaborative Research Centre-Assessment and Better Care, School of Psychiatry, UNSW Australia, Sydney, NSW, Australia.
PLoS One. 2017 Jul 19;12(7):e0180935. doi: 10.1371/journal.pone.0180935. eCollection 2017.
BACKGROUND/AIMS: Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.
Eighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.
Although at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.
People with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.
背景/目的：尽管报告负担水平很高，但早发性痴呆症（YOD）患者的支持者对正规社区服务的利用不足。先前针对YOD的定量研究在指导服务设计方面效用有限，因为它们没有考虑到服务使用的重要背景障碍。本研究的目的是确定所有相关障碍，并描述被认为对提高YOD患者及其支持者的利用率最重要的服务特征。
86名经共识确认患有YOD（平均发病年龄55.3岁）的患者和/或他们的主要支持者参与了定量访谈，其中50人还参加了七个定性焦点小组中的一个。访谈参与者报告了社区服务的使用水平和未使用的原因、功能障碍、行为和心理症状、支持者负担、社交网络以及非正式护理提供情况。焦点小组参与者详细阐述了未使用的原因和理想服务的各个方面。
尽管大多数参与者（96.8%）至少被推荐了一项社区服务，但66.7%的人选择不使用其中一项或多项服务。此处纳入的临床或人口统计学因素中，很少有与服务使用相关的。定性分析发现，普遍报告的原因包括缺乏感知需求、可获得性以及YOD特有的障碍（包括不符合资格、负担不起、缺乏安全性、缺乏儿童保育服务）。确定了理想服务的五个方面：独特、灵活、可负担、量身定制以及促进有意义的参与。
YOD患者及其家人报告称，正规社区服务无法满足他们的个人和心理需求。研究人员可以对项目的可行性、适用性和普遍性进行持续评估。
