Faculdade de Ciências Médicas | NOVA Medical School. Universidade NOVA de Lisboa. Lisbon; Comprehensive Health Research Center (CHRC). Laboratório Associado REAL. Universidade NOVA de Lisboa. Lisbon. Portugal.
Comprehensive Health Research Center (CHRC). Laboratório Associado REAL. Universidade NOVA de Lisboa. Lisbon; NOVA School of Public Health. Universidade NOVA de Lisboa. Lisbon. Portugal.
Acta Med Port. 2024 May 2;37(5):355-367. doi: 10.20344/amp.20427. Epub 2024 Mar 8.
The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables.
This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used.
At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers' ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers' depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers' psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable.
People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants' needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes.
痴呆症的中期阶段相对研究较少，葡萄牙也不例外。Actifcare（ACcess to TImely Formal Care）欧盟-JPND 项目研究了轻度至中度痴呆症患者，即他们的需求、获得和使用社区服务（例如日托中心、家庭支持）的情况。在我们对葡萄牙 Actifcare 队列的基线评估中，一些参与者的未满足需求需要提供正式支持，但这些支持并不总是可获得或使用。我们现在报告 12 个月随访的主要结果，分析需求、服务（不）使用、生活质量和相关变量的变化。
这是一项使用便利样本的纵向观察性研究，共纳入 54 对痴呆症患者及其家庭照顾者。我们的主要结局是使用老年坎伯韦尔需求评估量表（CANE）和痴呆症资源利用量表进行评估。还使用了临床功能、生活质量、心理困扰和护理相关评估。
在随访时，痴呆症患者的认知和功能状态下降（p < 0.001），神经精神症状增加（p = 0.033）。考虑到 CANE 访谈者的评估，痴呆症患者的总需求在随访时增加（p < 0.001），但未满足的需求没有增加。生活质量总体稳定。正式护理的使用没有显著增加，但在某些领域增加了非正式护理。照顾者的抑郁症状增加（p = 0.030），坚持时间减少（p = 0.045）。然而，照顾者的心理困扰未满足需求较低（p = 0.007），他们的压力和生活质量保持稳定。
痴呆症患者表现出复杂的生物心理社会未满足需求。他们在一年中的认知-功能下降并没有伴随着任何模式的未满足需求或服务使用的相应增加。对非正式护理（即监督）的依赖可能促成了这一点。护理相关结果呈现出不同的趋势，但几乎都是稳定的。主要照顾者在随访时更加存在，而他们自身的需求、负担和生活质量并没有明显加重。总的来说，这项纵向研究全面评估了葡萄牙的社区居住痴呆症患者。尽管缺乏普遍性，但参与者的需求在一年中仍然保持总体稳定且部分未得到满足。需要更长的随访时间来了解这些复杂的过程。
