Assessment of Informal Support Provided by Caregivers at Different Stages of Alzheimer's Disease
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: " Ressources Utilisation in Dementia " (RUD) questionnaire..
- Who it may be relevant to
- Registry conditions: Elderly (People Aged 65 or More), Neurocognition, Alzheimer s Disease. Basic parameters: from 60 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
In France, approximately 1,200,000 people aged 65 and over suffer from Alzheimer's disease or related disorders, of which Alzheimer's disease (AD) accounts for 70% of cases. This prevalence could double by 2050. The cognitive decline and progression to functional dependence that accompany AD are associated with a decline in quality of life, an increased risk of comorbidities, institutionalization, and mortality, as well as high care costs, placing a burden on the patient, their family and friends, and the healthcare system. Informal care, i.e., care provided by a family member or caregiver, plays an important role in the overall management of major neurocognitive disorders (NCDs) associated with AD at home. In France, the annual cost of informal care for AD was estimated in 2008 at around €14 billion per year, or approximately 50% of the total annual cost of AD. The economic valuation of informal care serves to inform public decision-makers not only about the cost of this resource, but also about its usefulness. The issue of resource allocation (particularly the daily allowance for family caregivers - AJPA in French) at the societal level and the sharing of private (role of caregivers) and public (role of the state and local authorities) responsibilities leads us to question the determinants of this usefulness, particularly the clinical determinants in AD patients at different stages of the disease. The main hypothesis is that informal care varies according to cognitive decline and loss of autonomy, independently or in interaction with the number and type of the patient's comorbidities, their behavioral disorders, and the caregiver's burden.
Interventions
- Other " Ressources Utilisation in Dementia " (RUD) questionnaire.
Questionnaire on the use of services available to patients with dementia.
Primary outcome measures
- Informal care costs [Time frame: At inclusion or 15 days maximum after inclusion.]
Eligibility criteria
Inclusion criteria
- Patients from Charpennes Hospital included in the MEM-AURA cohort
- Patients aged 60 years and older at inclusion
- Patients with dementia due to clinically probable Alzheimer's disease, regardless of stage
- Patients with a Mini-Mental State Evaluation (MMSE) score ≤ 26 at inclusion
- Patients accompanied by a caregiver at inclusion
Exclusion criteria
- \- Patients or caregivers who have expressed their opposition to the study
- Patients living in institutions or nursing homes
- Patients protected by law (under legal protection, guardianship, or conservatorship)
Early termination Criteria :
\- Patients or caregivers withdrawing their consent to participate during the study
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
France · 1 center
- Hôpital des Charpennes — Villeurbanne
Identifiers
NCT: NCT07409506 · 25-5152 · 69HCL24_1258