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Fronto-Temporal Lobar Degeneration (FTLD) refers to 3 categories of neurodegenerative diseases generally occurring between 55 and 65 years: Fronto-Temporal Dementia(FTD), Primary Progressive Aphasia (PPA), Semantic Dementia (SD). Clinical expression is substantially variable among individuals, but in most cases, behavioural disorders and personality changes are prominent. FTLD is poorly known by general public including health care professionals. Currently, the French health system does not meet the needs and expectations of patients and their families
Patients with FTLD and their caregivers need to be recognized and supported through specific and tailored made actions provided by expert teams. The main objective of our study is to evaluate the effectiveness of a 6-month personalized multidisciplinary care provided to the dyad FTLD patient and caregiver on patient's behavioural disorders. The secondary objectives are to assess the impact of this program on patient's cognitive deterioration, functional autonomy and behavioral problems, as well as caregiver's depressive symptomatology and sense of competence
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Multidisciplinary and personalized care | Experimental | Personalized care and proposals bring by a team of experts : neurologists ; geriatrician ; psychologist. |
|
| Reference care | No Intervention | Standard clinical evaluations of patient with Frontotemporal Lobar Degeneration. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| 3 Home visits made by a psychologist | Other | Patient and caregiver interviews with a psychologist at home |
|
| Measure | Description | Time Frame |
|---|---|---|
| Neuropsychiatric Inventory (NPI) | Assessment of neuropsychiatric symptomatology | 6 months |
| Measure | Description | Time Frame |
|---|---|---|
| Neuropsychiatric Inventory (NPI) | Assessment of neuropsychiatric symptomatology | 12 months |
| Mini Mental State Examination | 6 months and 12 months |
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Inclusion criteria:
Patients
Caregiver
• Spouse, brother, sister, child living at patient's home and can provide the medical team of reliable information on the status of their parent.
Exclusion criteria :
Patient
Caregiver
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| Name | Affiliation | Role |
|---|---|---|
| Jean-François DARTIGUES | University Hospital, Bordeaux | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Bordeaux University Hospital | Bordeaux | 33079 | France |
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| ID | Term |
|---|---|
| D057174 | Frontotemporal Lobar Degeneration |
| D001523 | Mental Disorders |
| ID | Term |
|---|---|
| D003704 | Dementia |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| Frontal Behavioral Inventory | 6 months and 12 months |
| Frontal Assessment Battery | 6 months and 12 months |
| Geriatric Depression Scale Score ( From 0 to 30) | Score : 0 - 5 : normal Score : 5 - 9 : light depression Score : 10 - 30 : severe depression | 6 months and 12 months |
| Sense of Competence Questionnaire (SCQ) | 6 months and 12 months |
| Quality of Life Questionnaire (QoL-AD) | 6 months and 12 months |
| Hierarchical scale of internality for elderly people (EHIPA) score ( From 0 to 22) | The score varies from 0 to 22. A high score corresponding to an important internality | 6 months and 12 months |
| D057177 |
| TDP-43 Proteinopathies |
| D019636 | Neurodegenerative Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D019965 | Neurocognitive Disorders |