Department of Neurology and Alzheimer Research Center, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
Laboratory of Neurochemistry and Behaviour, Institute Born-Bunge, University of Antwerp, Wilrijk, Belgium.
J Alzheimers Dis. 2018;63(2):797-819. doi: 10.3233/JAD-170920.
People with Down syndrome (DS) are prone to develop Alzheimer's disease (AD). Behavioral and psychological symptoms of dementia (BPSD) are core features, but have not been comprehensively evaluated in DS. In a European multidisciplinary study, the novel Behavioral and Psychological Symptoms of Dementia in Down Syndrome (BPSD-DS) scale was developed to identify frequency and severity of behavioral changes taking account of life-long characteristic behavior. 83 behavioral items in 12 clinically defined sections were evaluated. The central aim was to identify items that change in relation to the dementia status, and thus may differentiate between diagnostic groups. Structured interviews were conducted with informants of persons with DS without dementia (DS, n = 149), with questionable dementia (DS+Q, n = 65), and with diagnosed dementia (DS+AD, n = 67). First exploratory data suggest promising interrater, test-retest, and internal consistency reliability measures. Concerning item relevance, group comparisons revealed pronounced increases in frequency and severity in items of anxiety, sleep disturbances, agitation & stereotypical behavior, aggression, apathy, depressive symptoms, and eating/drinking behavior. The proportion of individuals presenting an increase was highest in DS+AD, intermediate in DS+Q, and lowest in DS. Interestingly, among DS+Q individuals, a substantial proportion already presented increased anxiety, sleep disturbances, apathy, and depressive symptoms, suggesting that these changes occur early in the course of AD. Future efforts should optimize the scale based on current results and clinical experiences, and further study applicability, reliability, and validity. Future application of the scale in daily care may aid caregivers to understand changes, and contribute to timely interventions and adaptation of caregiving.
唐氏综合征（DS）患者易患阿尔茨海默病（AD）。痴呆的行为和心理症状（BPSD）是核心特征，但在 DS 中尚未得到全面评估。在一项欧洲多学科研究中，开发了新型唐氏综合征（Down syndrome，DS）痴呆行为和心理症状（Behavioral and Psychological Symptoms of Dementia in Down Syndrome，BPSD-DS）量表，以识别考虑到终身特征性行为的行为变化的频率和严重程度。在 12 个临床定义的部分中评估了 83 个行为项目。主要目的是确定与痴呆状态相关变化的项目，从而区分诊断组。对无痴呆（DS，n = 149）、可疑痴呆（DS+Q，n = 65）和确诊痴呆（DS+AD，n = 67）的 DS 患者的知情人进行了结构化访谈。初步探索性数据分析表明，该量表具有较好的评定者间信度、重测信度和内部一致性。关于项目相关性，组间比较显示，焦虑、睡眠障碍、激越和刻板行为、攻击、淡漠、抑郁症状和饮食/饮水行为的频率和严重程度明显增加。DS+AD 组中出现这种增加的个体比例最高，DS+Q 组次之，DS 组最低。有趣的是，在 DS+Q 个体中，相当一部分已经出现了焦虑、睡眠障碍、淡漠和抑郁症状的增加，这表明这些变化在 AD 病程早期就已经发生。未来的研究应基于当前的结果和临床经验来优化量表，并进一步研究其适用性、可靠性和有效性。未来在日常护理中应用该量表可以帮助护理人员了解变化，并有助于及时进行干预和调整护理。
