A Nordic Multicentre Observational Study of Persons With Young Onset Dementia and Their Families - Factors Influencing Quality of Life, Theirs Specific Needs and the Use of Healthcare Resources
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 250
- 试验地点
- 1
- 主要终点
- Change from baseline in quality of life at 12 months
研究概览
简要总结
People diagnosed with young onset dementia are today mostly assigned to the same healthcare services as people developing dementia at an older age. They and their families are however in a quite different life situation, which is likely to generate different challenges and specific needs for tailored healthcare services, of importance in maintaining their perceived quality of life.
The investigators of this study wish to assess the factors influencing these families' quality of life, their specific needs and their use of healthcare services by the use a combination of quantitative and qualitative methods. The main aim of this study is to provide better future healthcare services to these families, and to develop a programme for optimal collaboration between specialist healthcare services and the local dementia teams.
详细描述
Background: Most common dementia cases in Young Onset dementia (YOD) are Alzheimer's disease (AD) and frontotemporal dementia (FTD). There is little knowledge about the impact on the affected families, especially with regard to FTD. Although their life situation and specific needs differ from that of older people, they are referred to the same healthcare services.
Hypothesis:
- QoL is poorer among persons with FTD and their families compared to AD at baseline.
- There is less worsening of QoL after two years in persons with AD and their families compared to FTD.
- People with YOD have different needs for health care services than older people with dementia.
- YOD and their families have more unmet needs than older people with dementia.
Methods: Nordic multicenter observational cohort study of YOD-AD and YOD-FTD. 75 persons in each group, living at home with their families, recruited from five Norwegian and four Nordic memory clinics. The control group consists of 100 older people with dementia age ≥70 years. The investigators use a combination of quantitative and qualitative methods.
The follow-up period of the persons with YOD and their family members is two years. Assessments are made at baseline, 12 and 24 months, with telephone check-ups at 6 and 18 months. The main assessment questionnaires are Quality of life in Alzheimer's disease (QoL-AD), Camberwell Assessment of Need in the Elderly (CANE), and Resource Utilization in Dementia Lite (RUD Lite).
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- — 至 69 Years（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Debut of dementia symptoms before the age of 65 years, but age at time of inclusion may be up to 70 years.
- •FTD (Neary et al 1998 criteria)
- •Primary progressive aphasia (Mesulam 2003 criteria)
- •AD (DSM-IV)
- •Community living, excl. dementia-specific living facilities manned 24/7
- •Family member with regular contact at least x 1/week.
排除标准
- •Lack of informed consent
- •No close or appropriate family member
- •Frontal lobe dysfunction due to non-progressive injury, i.e. cerebral infarction
- •Frontal lobe dysfunction due to motor neuron disease (ALS)
- •Other dementia specific condition with frontal lobe dysfunction (Huntington, HIV, Down syndrome, alcoholic dementia)
- •Mental retardation
- •Current substance abuse, incl. excessive alcohol consumption for the past 12 months
结局指标
主要结局
Change from baseline in quality of life at 12 months
时间窗: Baseline, 12 months
Assessments by Quality of Life - Alzheimer's dementia (QoL-AD) and Euroqol-5D (EQ-5D), index person and family member; also by proxy (QoL-AD).
Quality of life
时间窗: Baseline
Assessments by Quality of Life - Alzheimer's dementia (QoL-AD) and Euroqol-5D (EQ-5D), index person and family member; also by proxy (QoL-AD).
Change from baseline in quality of life at 24 months
时间窗: Baseline, 24 months
Assessments by Quality of Life - Alzheimer's dementia (QoL-AD) and Euroqol-5D (EQ-5D), index person and family member; also by proxy (QoL-AD).
次要结局
- Use of healthcare resources(24 months)
- Neuropsychiatric symptoms(24 months)
- Activities of Daily Living (ADL)(24 months)
- Specific needs(24 months)
- Cognition(24 months)
- Relative's stress(24 months)