Herzl Clinic, Jewish General Hospital and Department of Family Medicine, McGill University, Montreal, Canada.
Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada.
BMC Fam Pract. 2021 Sep 15;22(1):186. doi: 10.1186/s12875-021-01528-3.
Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers' met and unmet needs and to describe their experience.
This is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers' Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together.
The mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver's attitude towards memory decline, their perception of community health services and of the family medicine practice.
Our study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.
患有痴呆症的人有各种健康和社会护理需求和期望，其中一些需求并未得到卫生提供者（包括初级保健临床医生）的充分满足。2014 年实施的魁北克老年痴呆症计划旨在满足这些需求，但目前尚无研究表明该计划对患有痴呆症的人的需求和期望产生了何种影响。本研究的目的是确定社区居住的痴呆症患者及其照顾者的已满足和未满足的需求，并描述他们的体验。
这是一项顺序混合方法的解释性设计：第 1 阶段：使用坎伯韦尔老年评估需求工具和照顾者对痴呆症评估工具，对社区居住的痴呆症患者的已满足和未满足的健康和社会护理需求进行横断面研究，以描述这些需求。第 2 阶段：使用半结构化访谈对痴呆症患者及其照顾者使用社会和医疗保健服务的体验进行探索性描述性研究。第 1 阶段的数据采用描述性统计方法进行分析，第 2 阶段的数据采用归纳主题分析方法进行分析。将第 1 阶段和第 2 阶段的结果进行比较、对比和综合解释。
患者报告的总需求数平均为 5.03（4.48 和 0.55 分别为已满足和未满足的需求）。照顾者的已满足需求为 0.52（3.16 为未满足需求）。这两者的主要需求都是记忆力、身体健康、视力/听力/沟通、药物、照顾家庭、金钱/预算。参与者提到了三个类别：痴呆症患者及其照顾者对记忆力下降的态度、他们对社区卫生服务和家庭医疗实践的看法。
我们的研究证实了其他研究对患者和照顾者最常见的未满足需求的发现，这些需求部分或完全没有得到满足。此外，参与者对初级实践中的护理服务和医疗服务的可及性感到满意，对家庭医生充满信心。我们的研究结果表明，痴呆症患者及其照顾者需要一个联系人、对他们的痴呆症诊断的明确解释、一个护理计划、有关可用服务的书面信息以及对照顾者的支持。
