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| Name | Class |
|---|---|
| The Research Council of Norway | OTHER |
| The Hospital of Vestfold | OTHER |
| Oslo University Hospital | OTHER |
| Sykehuset Innlandet HF |
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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.
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:
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).
Study aims for the quantitative part of the study:
Study aims and methods for the qualitative part of the study:
Results: Inclusion starts Feb 2014. The objective of this study is to ensure optimally tailored service provision and future healthcare planning according to the specific needs of families of YOD, and develop a care programme in collaboration between primary and specialist healthcare services.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| YOD-FTD | Young onset dementia - frontotemporal dementia, 38 persons with their respective family members. | ||
| YOD-AD | Young onset dementia - Alzheimer's disease, 50 persons with their respective family members. | ||
| LOD | Late onset dementia >= 70 years of age; Control group of 100 persons with dementia (mostly AD and AD/vascular) and their respective family members. Data already collected in a previous study. |
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| Measure | Description | Time Frame |
|---|---|---|
| Quality of life | 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). | Baseline |
| Change from baseline in quality of life at 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). | Baseline, 12 months |
| Change from baseline in quality of life at 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). | Baseline, 24 months |
| Measure | Description | Time Frame |
|---|---|---|
| Specific needs | Assessments by Camberwell Assessment of Need in the Elderly (CANE); 24 items for index person and 2 items for family member needs. | Baseline |
| Use of healthcare resources | Assessments by Resource utilization in dementia Lite (RUD Lite). |
| Measure | Description | Time Frame |
|---|---|---|
| Clinical dementia rating | Assessments by Clinical dementia rating scale (CDR) . | Baseline |
| Awareness | Assessments by REED scale. | Baseline |
Inclusion Criteria:
Exclusion Criteria:
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YOD participants are community residing persons recruited from memory clinics in Norway and Nordic countries (Iceland, Sweden and Denmark).
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| Name | Affiliation | Role |
|---|---|---|
| Geir Selbæk, MD, PhD | Norwegian Centre for Ageing and Health | Study Director |
| Hege Kersten, CPh, PhD | Norwegian Centre for Ageing and Health | Study Chair |
| Aud Johannessen, DrPH | Norwegian Centre for Ageing and Health | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Norwegian Centre for Ageing and Health | Tønsberg | Vestfold | 3103 | Norway |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 31106576 | Derived | Hvidsten L, Engedal K, Selbaek G, Wyller TB, Saltyte Benth J, Bruvik F, Kersten H. Quality of life of family carers of persons with young-onset compared to late-onset dementia. Aging Ment Health. 2020 Sep;24(9):1394-1401. doi: 10.1080/13607863.2019.1617245. Epub 2019 May 20. |
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| ID | Term |
|---|---|
| D057180 | Frontotemporal Dementia |
| D000544 | Alzheimer Disease |
| ID | Term |
|---|---|
| D057174 | Frontotemporal Lobar Degeneration |
| D003704 | Dementia |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
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| OTHER |
| Haraldsplass Deaconess Hospital | OTHER |
| Karolinska University Hospital | OTHER |
| Copenhagen University Hospital, Denmark | OTHER |
| Zealand University Hospital | OTHER |
| Landspitali University Hospital | OTHER |
| Sykehuset Telemark | OTHER_GOV |
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Bio samples are collected for analysis and storage in a bio bank as part of the routines for the National Registry of Dementia:
| Baseline |
| Cognition | Assessments standardized by the National Registry of Dementia: Mini Mental Status-Norwegian revision (MMSE-NR), Clock drawing Test, Trail making test part A and B, 10-word list memory recall and recognition test, The Consortium to Establish a Registry for Alzheimer's Disease (CERAD) visuospatial figure copying, FAS, Boston Naming Test, Informant questionnaire-on Cognitive decline in Dementia (IQ-CODE). | Baseline |
| Neuropsychiatric symptoms | Assessments by Neuropsychiatric Inventory- Questionnaire (NPI-Q). | Baseline |
| Activities of Daily Living (ADL) | Assessments by Lawton & Brody I-ADL and Physical Self-maintenance Scale (PSMS). | Baseline |
| Relative's stress | Assessments by Relative's Stress Scale (RSS). | Baseline |
| Specific needs | Assessments by Camberwell Assessment of Need in the Elderly (CANE); 24 items for index person and 2 items for family member needs. | 12 months |
| Specific needs | Assessments by Camberwell Assessment of Need in the Elderly (CANE); 24 items for index person and 2 items for family member needs. | 24 months |
| Use of healthcare resources | Assessments by Resource utilization in dementia Lite (RUD Lite). | 12 months |
| Use of healthcare resources | Assessments by Resource utilization in dementia Lite (RUD Lite). | 24 months |
| Cognition | Assessments standardized by the National Registry of Dementia: Mini Mental Status-Norwegian revision (MMSE-NR), Clock drawing Test, Trail making test part A and B, 10-word list memory recall and recognition test, The Consortium to Establish a Registry for Alzheimer's Disease (CERAD) visuospatial figure copying, FAS, Boston Naming Test, Informant questionnaire-on Cognitive decline in Dementia (IQ-CODE). | 12 months |
| Cognition | Assessments standardized by the National Registry of Dementia: Mini Mental Status-Norwegian revision (MMSE-NR), Clock drawing Test, Trail making test part A and B, 10-word list memory recall and recognition test, The Consortium to Establish a Registry for Alzheimer's Disease (CERAD) visuospatial figure copying, FAS, Boston Naming Test, Informant questionnaire-on Cognitive decline in Dementia (IQ-CODE). | 24 months |
| Neuropsychiatric symptoms | Assessments by Neuropsychiatric Inventory- Questionnaire (NPI-Q). | 12 months |
| Neuropsychiatric symptoms | Assessments by Neuropsychiatric Inventory- Questionnaire (NPI-Q). | 24 months |
| Activities of Daily Living (ADL) | Assessments by Lawton & Brody I-ADL and Physical Self-maintenance Scale (PSMS). | 12 months |
| Relative's stress | Assessments by Relative's Stress Scale (RSS). | 12 months |
| Activities of Daily Living (ADL) | Assessments by Lawton & Brody I-ADL and Physical Self-maintenance Scale (PSMS). | 24 months |
| Relative's stress | Assessments by Relative's Stress Scale (RSS). | 24 months |
| Depressive symptoms | Assessments by Cornell Scale for Depression in Dementia (CSDD) by proxy, and using Geriatric Depression Scale (GDS) and Montgomery-Asberg Depression Rating Scale (MADRS) in family member. | Baseline |
| Coping | Assessments by Locus, 17 item, for index person and family member. | Baseline |
| Intercurrent disease | Assessments by telephone follow-up interview with index person and family member. | 6 months |
| Medication | Baseline |
| Hospital admission | Assessments by telephone follow-up interview with index person and family member. | 6 months |
| Changes in living conditions | Assessments by telephone follow-up interview with index person and family member. | 6 months |
| Major life events | Assessments by telephone follow-up interview with index person and family member. | 6 months |
| Apo E4-genotype | Whole blood collected at baseline, analysis may be performed at a later stage (stored in research bio bank). | Baseline |
| Clinical dementia rating | Assessments by Clinical dementia rating scale (CDR) . | 12 months |
| Clinical dementia rating | Assessments by Clinical dementia rating scale (CDR) . | 24 months |
| Awareness | Assessments by REED scale. | 12 months |
| Awareness | Assessments by REED scale. | 24 months |
| Depressive symptoms | Assessments by Cornell Scale for Depression in Dementia (CSDD) by proxy, and using Geriatric Depression Scale (GDS) and Montgomery-Asberg Depression Rating Scale (MADRS) in family member. | 12 months |
| Depressive symptoms | Assessments by Cornell Scale for Depression in Dementia (CSDD) by proxy, and using Geriatric Depression Scale (GDS) and Montgomery-Asberg Depression Rating Scale (MADRS) in family member. | 24 months |
| Coping | Assessments by Locus, 17 item, for index person and family member. | 12 months |
| Coping | Assessments by Locus, 17 item, for index person and family member. | 24 months |
| Intercurrent disease | Assessments by telephone follow-up interview with index person and family member. | 18 months |
| Medication | 12 months |
| Medication | 24 months |
| Medication | 6 months |
| Medication | 18 months |
| Hospital admission | Assessments by telephone follow-up interview with index person and family member. | 18 months |
| Changes in living conditions | Assessments by telephone follow-up interview with index person and family member. | 18 months |
| Major life events | Assessments by telephone follow-up interview with index person and family member. | 18 months |
| D009422 | Nervous System Diseases |
| D057177 | TDP-43 Proteinopathies |
| D019636 | Neurodegenerative Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D024801 | Tauopathies |