FAMILY CAREGIVERS OF PEOPLE WITH ALZHEIMER´S DISEASE: ANALYSIS OF THE PRESENCE OF POSSIBLE IMPLICATIONS IN PSYCHOSOCIAL ASPECTS ARISING FROM THE TASK OF CARING

• Grant number: 25/06454-0
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: September 01, 2025
• End date: August 31, 2026
• Field of knowledge: Humanities - Psychology - Cognitive Psychology
• Principal Investigator: Thaís Bento Lima da Silva
• Grantee: Edna Letícia de Queiroz Duarte
• Host Institution: Escola de Artes, Ciências e Humanidades (EACH). Universidade de São Paulo (USP). São Paulo , SP, Brazil

Abstract

Introduction: Alzheimer´s Disease (AD) is the main cause of dementia globally and accounts for around 60% of dementia cases, with the disease estimated to affect approximately 150 million individuals by 2050. In Brazil, there are approximately 2 million people living with dementia, which has become a public health problem. The literature reports that caregivers of older people with dementia face major challenges concerning mental health and wellbeing. Hence, assistance for caregivers should be prioritized in public policies on aging. Objectives: To investigate the psychosocial aspects and main needs of family caregivers of individuals with AD. The investigation will analyze the knowledge on AD held by caregivers, assess their levels of stress and psychological burden, and identify main challenges faced to inform the development of support strategies that can provide a basis for more effective interventions. Methods: A descriptive quantitative cross-sectional study will be conducted. Sixty caregivers of people with AD are to be recruited via social media platforms and through pamphlets posted at partner institutions supporting caregivers and people with dementia, such as the Brazilian Alzheimer´s Association (ABRAz) and Brazilian Alzheimer´s Federation (FEBRAz). A contact email, together with a cell phone and WhatsApp number will be provided for potential participants to contact the researchers, and the pamphlet will have a form attached for interested parties to enroll and be contacted. Protocol: sociodemographic questionnaire, Alzheimer´s Disease Knowledge Scale (ADKS), Pfeffer Functional Activities Questionnaire (PFAQ), Zarit Burden Interview - 12 items (ZBI-12), Lubben Social Network Scale (LSNS), Depression, Anxiety and Stress Scale - 21 items (DASS-21), the Control, Autonomy, Self-realization and Pleasure (CASP-19) scale, and the brief Neuropsychiatric Inventory (NPI) questionnaire. Expected results: The study is expected to reveal gaps in knowledge on AD, a high level of emotional burden and psychological burnout, and an association of the presence of functional impairment and neuropsychological symptoms of the person with dementia with worse self-reported quality of life and a small social support network. (AU)