PDF(Pubmed)
Abstract：
BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time.
METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer\'s disease, vascular dementia, mixed Alzheimer\'s and vascular dementia, Parkinson\'s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer\'s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time.
RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson\'s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year).
CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson\'s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.
METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer\'s disease, vascular dementia, mixed Alzheimer\'s and vascular dementia, Parkinson\'s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer\'s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time.
RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson\'s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year).
CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson\'s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.
摘要：
背景：患有不同类型痴呆症的人可能有不同的症状和经历，影响他们的生活质量。这项研究调查了生活质量是否因痴呆症类型和时间而异。
方法：参与者是IDEAL纵向队列研究的1555名轻度至中度痴呆患者和1327名护理人员，从临床服务招募。尽可能多的人被跟踪长达6年。诊断包括阿尔茨海默病，血管性痴呆,阿尔茨海默氏症和血管性痴呆混合症,帕金森病痴呆,路易体痴呆症，和额颞叶痴呆.使用阿尔茨海默病生活质量量表的自我和信息评估版本。关节模型，结合具有随机效应的混合效应模型和考虑辍学的生存模型，用于检查诊断时的生活质量是否因痴呆类型而异，以及轨迹如何随时间变化。
结果：痴呆类型和生活质量之间最强的关联出现在诊断前后。对于自我评级和线人评级，帕金森病痴呆或路易体痴呆患者的生活质量评分较低.随着时间的推移，所有痴呆症类型的自我评估得分几乎没有变化（每年-0.15分）。告密者评分随着时间的推移而下降（-每年1.63分），线人对路易体痴呆症患者的评分下降幅度最大（每年-2.18分）。
结论：自我评估的生活质量评分随着时间的推移相对稳定，而线人的评分则显示出急剧下降。帕金森病痴呆或路易体痴呆患者的生活质量特别低，表明更加关注这些群体的需求的重要性。
方法：参与者是IDEAL纵向队列研究的1555名轻度至中度痴呆患者和1327名护理人员，从临床服务招募。尽可能多的人被跟踪长达6年。诊断包括阿尔茨海默病，血管性痴呆,阿尔茨海默氏症和血管性痴呆混合症,帕金森病痴呆,路易体痴呆症，和额颞叶痴呆.使用阿尔茨海默病生活质量量表的自我和信息评估版本。关节模型，结合具有随机效应的混合效应模型和考虑辍学的生存模型，用于检查诊断时的生活质量是否因痴呆类型而异，以及轨迹如何随时间变化。
结果：痴呆类型和生活质量之间最强的关联出现在诊断前后。对于自我评级和线人评级，帕金森病痴呆或路易体痴呆患者的生活质量评分较低.随着时间的推移，所有痴呆症类型的自我评估得分几乎没有变化（每年-0.15分）。告密者评分随着时间的推移而下降（-每年1.63分），线人对路易体痴呆症患者的评分下降幅度最大（每年-2.18分）。
结论：自我评估的生活质量评分随着时间的推移相对稳定，而线人的评分则显示出急剧下降。帕金森病痴呆或路易体痴呆患者的生活质量特别低，表明更加关注这些群体的需求的重要性。
