Baptista Maria Alice Tourinho, Santos Raquel Luiza, Kimura Nathália, Lacerda Isabel Barbeito, Johannenssen Aud, Barca Maria Lage, Engedal Knut, Dourado Marcia Cristina Nascimento
Instituto de Psiquiatria, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
Norwegian Centre for Aging and Health, Tønsberg, Norway.
Trends Psychiatry Psychother. 2016 Jan-Mar;38(1):6-13. doi: 10.1590/2237-6089-2015-0049.
Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers.
This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL.
People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective.
Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.
早发性痴呆（YOD）在65岁之前发病，对生活质量（QoL）有特定的与年龄相关的不良影响。我们系统地研究了与YOD患者及其照料者生活质量相关的因素。
本系统评价采用PRISMA方法。2015年7月5日，使用Cochrane、PubMed、SciELO、PsycINFO、Scopus和汤森路透科学网电子数据库进行文献检索。检索关键词包括早发性和青年发病与痴呆、阿尔茨海默病、血管性痴呆、混合性痴呆、额颞叶痴呆、生活质量、幸福感和未满足的需求。纳入了9项研究。我们修订了与生活质量相关的目标、研究设计、样本、工具和结果。
YOD患者对自己生活质量的评分显著高于其照料者。YOD患者对疾病的更高认知与照料者更好的生活质量相关。发现未满足的需求与白天活动、缺乏陪伴以及记忆困难之间存在关联。与未满足需求相关的问题包括诊断时间延长、可获得的医疗服务以及照料者自身缺乏对未来的展望。
应考虑采用更同质的样本进行调查，并使用明确的生活质量概念。本研究强调了未来在更广泛的国家进行研究的必要性，使用专门针对YOD的工具。如果研究能够追踪与晚发性痴呆组的相似之处，将很有意义。
