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Alzheimer’s disease: the unique experience of family caregivers

Abstract

Dementia is a slow-progressing chronic syndrome with the subtype of Alzheimer‘s disease being the most commom (Burlá, 2015Burlá, C. (2015). A aplicação das diretivas antecipadas de vontade na pessoa com demência (Tese de doutorado). Recuperado de https://bit.ly/3bUukGr
https://bit.ly/3bUukGr...
). This study verified the experience of care from the perspective of family caregivers of older adults with AD from the qualitative approach. The phenomenological method proposed by Giorgi and Sousa (2010Giorgi, A., & Sousa, D. (2010). Método fenomenológico de investigação em Psicologia. Lisboa: Fim de Século.) was adopted. Nine family caregivers (4 wives and 5 daughters) participated during different stages of the disease and after death. From the main question “How is your experience of caring for your relative with Alzheimer‘s disease?“ emerged 13 thematic units associated with each stage of the disease. The findings raise the need of caregivers, which include initial diagnosis and goes through the creation of a space for listening and care, given the gradual loss experienced throughout the caring process. Thus, there must be investments in forming professionals of all fields related to healthcare in order to promote quality of life and well-being for caregivers, as well as the need for interdisciplinary teams for the unique experience of dementia care.

Keywords:
dementia; Alzheimer’s disease; caregiver family

Instituto de Psicologia da Universidade de São Paulo Av. Prof. Mello Moraes, 1721 - Bloco A, sala 202, Cidade Universitária Armando de Salles Oliveira, 05508-900 São Paulo SP - Brazil - São Paulo - SP - Brazil
E-mail: revpsico@usp.br