Assessment of Informal Support Provided by Caregivers at Different Stages of Alzheimer's Disease (ICAD)

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.

Study Overview

• Status: Recruiting
• Conditions: Neurocognition; Elderly (People Aged 65 or More); Alzheimer s Disease
• Intervention / Treatment: Other: " Ressources Utilisation in Dementia " (RUD) questionnaire.

• Study Type: Observational
• Enrollment (Estimated): 312

Contacts and Locations

• Study Contact: Name: GERVAIS F M Frédéric GERVAIS; Phone Number: 0033 4 72 43 20 66; Email: frederic.gervais02@chu-lyon.fr

Study Locations

• France
  • Villeurbanne, France, 69100
    • Recruiting
    • Hopital des Charpennes

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Probability Sample

Study Population

Elderly patients attending memory consultations at Charpennes Hospital (HCL) for cognitive complaints.

Patients from Charpennes Hospital included in the MEM-AURA cohort, accompanied by a caregiver and aged 60 years and older at inclusion with NCD due to clinically probable Alzheimer's disease and a Mini-Mental State Evaluation (MMSE) score ≤ 26 at inclusion.

Description

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

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Patients from Charpennes Hospital; Patients from Charpennes Hospital included in the MEM-AURA cohort, accompanied by a caregiver and aged 60 years and older at inclusion with NCD due to clinically probable Alzheimer's disease and a Mini-Mental State Evaluation (MMSE) score ≤ 26 at inclusion.	Other: " Ressources Utilisation in Dementia " (RUD) questionnaire.; Questionnaire on the use of services available to patients with dementia.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Informal care costs	Informal care will be collected according to the " Ressources Utilisation in Dementia " (RUD) questionnaire and valued in euros using replacement cost method.	At inclusion or 15 days maximum after inclusion.

Collaborators and Investigators

• Sponsor: Hospices Civils de Lyon

Study record dates

Study Major Dates

• Study Start (Actual): September 9, 2025
• Primary Completion (Estimated): September 9, 2026
• Study Completion (Estimated): September 9, 2027

Study Registration Dates

• First Submitted: December 16, 2025
• First Submitted That Met QC Criteria: February 12, 2026
• First Posted (Actual): February 13, 2026

Study Record Updates

• Last Update Posted (Actual): February 13, 2026
• Last Update Submitted That Met QC Criteria: February 12, 2026
• Last Verified: February 1, 2026

More Information

Terms related to this study

• Keywords: informal care; caregiver; cost of alzheimer's disease
• Additional Relevant MeSH Terms: Health Care Quality, Access, and Evaluation; Investigative Techniques; Epidemiologic Methods; Data Collection; Health Care Evaluation Mechanisms; Quality of Health Care; Public Health; Environment and Public Health; Surveys and Questionnaires
• Other Study ID Numbers: 25-5152; 69HCL24_1258 (Other Identifier: Hospices Civils de Lyon)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: UNDECIDED

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No