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

Condition(s) studied

Investigational drug(s) / intervention(s)

" Ressources Utilisation in Dementia " (RUD) questionnaire.: Questionnaire on the use of services available to patients with dementia.

Study summary

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.

Eligibility

Primary outcome measure(s)

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

Trial sites (1)

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