Soutenir les oubliés de la maladie d'Alzheimer… Évaluation des effets d'une intervention psychoéducative individuelle bimodale à l'intention des conjoints-aidants de jeunes personnes atteintes de la maladie d'Alzheimer ou d'une maladie apparentée

 

Véronique Dubé

Centre hospitalier de l'Université de Montréal [CHUM]

 

Domaine : vieillissement

Programme Chercheurs-boursiers - Junior 1

Concours 2018-2019

Receiving a diagnosis of Alzheimer's disease or other dementias is a shock for the person and his/her family. Imagine that the diagnosis is announced to a person in his mid-forties, parent of young children, in the middle of his/her career, with plans for the future. An unexpected diagnosis that will upset the lives of the affected person living with the Alzheimer's disease and his entourage.

As those aged 65 years and older, people with early-onset dementia will have ongoing needs for care, and support to address the deficits associated with the Alzheimer's disease. Most of the help and support needed comes from relatives (siblings, friends, neighbors), especially the spouse. For spouses, who have to deal with many roles of daily life, they will have to add an extra one: the role of caregiver. It is recognized that being the caregiver of an elderly with Alzheimer's disease is challenging and can have serious impact on the caregiver's physical and psychological health (fatigue, stress, anxiety, depression, etc.). But what happens when someone has to take care of his/her "young" spouse leaving with early-onset dementia? According to some studies, the burden would be higher among the caregivers of younger people than those of seniors. In addition, very few services are adapted to the singular situation of caregivers of an early-onset dementia spouse. How must they announce the diagnosis to children? To whom and how should they ask for help? How can they maintain the capacities of his/her spouse? This are a few questions that caregivers have to deal with. Our research focuses specifically on educational and support interventions based on the needs and unique reality of these caregivers of early-onset dementia spouse. The interventions were developed with and for these caregivers and will be rigorously evaluated.