Authors

Ana Mª Rey Vázquez1, Miriam Vázquez Campo2

Position

1Enfermera. Complexo Hospitalario Universitario de Ourense2Enfermera. Doctora en Psicología. Complexo Hospitalario Universitario de Ourense. Escuela Universitaria de Enfermería de Ourense (Universidad de Vigo)

Contact address

Miriam Vázquez Campo. Escuela Universitaria de Enfermería de Ourense. Universidad de Vigo. C/ Ramón Puga, 52-55. 32005 Ourense.

Contact email: miriam.vazquez.campo@sergas.es

Abstract

Objective: the objective of this study was to understand the experiences and feelings of the primary caregiver persons for relatives with Alzheimer’s disease.
Method: a qualitative study was conducted, with phenomenological approach. Participants were recruited through the Association of Relatives of Alzheimer’s Patients from Orense. Data were collected through semistructured interviews conducted by two nurse interviewers, until reaching speech saturation.
Results: ten (10) categories were identified: diagnosis and change of identity; care; organization of the family unit; psychological impact on caregivers; self-care of the caregiver; resources; fear of the future; positive experiences; relationship with the Nursing professional; institutionalization.
Conclusions: caregivers reported the importance of self-care, trying to find time for themselves and being able to disengage. Their higher concern was disease evolution, and the “fading out” of their relative, which causes feelings of sadness and impotence. Through this caregiving experience, they discovered attitudes and feelings that were unknown to them, thus developing their ability to face adversities and learn from them.

Keywords:

Alzheimer’s disease; caregivers; family relationships; Nursing role; Phenomenology; qualitative research

Versión en Español

Título:

Vivencias y sentimientos de las personas cuidadoras principales de familiares con enfermedad de Alzheimer