Department of Primary and Community Care, Medical Center, Radboud University Nijmegen, Nijmegen, the Netherlands; Menzies Health Institute Queensland & School of Nursing and Midwifery, Griffith University, Queensland, Australia.
Department of Primary and Community Care, Medical Center, Radboud University Nijmegen, Nijmegen, the Netherlands; Radboudumc Alzheimer Center, Nijmegen, the Netherlands; Groenhuysen, Center for Specialized Geriatric Care, Roosendaal, the Netherlands.
J Am Med Dir Assoc. 2021 Jul;22(7):1456-1464.e1. doi: 10.1016/j.jamda.2020.09.040. Epub 2020 Nov 19.
To explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD).
An observational longitudinal study.
A total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands.
Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at 4 assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms, and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes.
The total QUALIDEM score (range: 0-111) decreased over 18 months with a small change of 0.65 (95% confidence interval -1.27, -0.04) points per 6 months. An increase in several domains of QoL regarding care relationship, positive self-image, and feeling at home was seen over time, whereas a decline was observed in the subscales positive affect, social relations, and having something to do. Residents with higher levels of QoL and more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up.
This study shows that although overall QoL in nursing home residents with YOD was relatively stable over 18 months, there were multidirectional changes in the QoL subscales that could be clinically relevant. Higher levels of QoL and more advanced stages of dementia at baseline predicted a more progressive decline in QoL over time. More longitudinal studies are needed to verify factors influencing QoL in YOD.
探索生活质量（QoL）的过程以及与生活质量过程相关的可能与居民相关的预测因素，这些因素与机构化的早发性痴呆（YOD）患者相关。
一项观察性纵向研究。
从荷兰的 13 个 YOD 特殊护理单位共招募了 278 名 YOD 居民。
对行为与早发性痴呆（BEYOND）-II 研究的纵向数据进行二次分析。使用 QUALIDEM 问卷通过代理评估来评估生活质量，该问卷在 18 个月内进行了 4 次评估。预测因素包括年龄、性别、痴呆亚型、入住时间、痴呆严重程度、神经精神症状和基线时的精神药物使用。使用多层次模型来调整居民内测量的相关性和居民内护理院的聚类。
在 18 个月内，QUALIDEM 总分（范围：0-111）下降，每 6 个月下降 0.65 分（95%置信区间-1.27，-0.04）。随着时间的推移，人们看到了与护理关系、积极的自我形象和归属感有关的几个 QoL 领域的增加，而在积极情绪、社会关系和有事可做等子量表方面则出现了下降。在基线时 QoL 水平较高且痴呆程度较高的居民，随着时间的推移，QoL 的下降更为明显。敏感性分析表明，在随访期间死亡的居民的 QoL 下降更为明显。
本研究表明，尽管在 18 个月内，机构化的 YOD 患者的生活质量总体上相对稳定，但 QoL 子量表存在多向变化，这可能具有临床意义。在基线时 QoL 水平较高和痴呆程度较高预测了随着时间的推移 QoL 的更明显下降。需要更多的纵向研究来验证影响 YOD 患者 QoL 的因素。
