Trends in Psychiatry and Psychotherapy
https://trends.org.br/article/doi/10.1590/S2237-60892013000300006
Trends in Psychiatry and Psychotherapy
Original Article

Cultural aspects in dementia: differences in the awareness of Brazilian caregivers

Aspectos culturais na demência: diferenças na consciência da doença de cuidadores brasileiros

Raquel L. Santos; Maria F. B. de Sousa; Ana C. Ganem; Thais V. Silva; Marcia C. N. Dourado

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Abstract

Objective: To explore differences in disease awareness in participants of a psychoeducational group designed for Latin American caregivers of people with dementia. Method: We assessed participants of a group developed at an outpatient unit for Alzheimer's disease. Interpretative phenomenological analysis was used to analyze differences in the caregivers' reports. Results and Discussion: The participants, mostly spouses and daughters, presented moderate caregiver burden and different levels of awareness (aware, partially aware, or unaware). Disease awareness and the development of coping strategies were influenced by familism, religiosity, and duty. Becoming a caregiver was considered positive in some cases, due to religious convictions and beliefs related to the importance of caregiving. Caregiver unawareness may reflect an attempt to maintain integrity of the patient's identity. Conclusions: Our data allow some comparisons across cultures, which may be valuable in assessing the influence of different psychosocial environments on the knowledge about dementia.

Keywords

Caregiver, dementia, awareness, intervention, qualitative study

Resumo

Objetivo: Examinar diferenças na consciência da doença em participantes de um grupo psicoeducacional direcionado a cuidadores latino-americanos de pessoas com demência. Método: Foram avaliados participantes de um grupo desenvolvido em um serviço para doença de Alzheimer. Utilizou-se análise fenomenológica interpretativa para analisar diferenças nos relatos dos cuidadores. Resultados e Discussão: Os participantes, em sua maioria esposas e filhas, apresentaram sobrecarga moderada e diferentes níveis de consciência da doença (preservada, parcial ou inexistente). A consciência da doença e o desenvolvimento de estratégias de enfrentamento foram influenciados pelo familismo, religiosidade e sentimento de obrigação moral. Tornar-se um cuidador também foi considerado positivo em alguns casos, por convicções religiosas e crenças relacionadas à importância do cuidar. A ausência de consciência pode refletir uma tentativa de manter a identidade do paciente. Conclusão: Os dados permitem algumas comparações entre culturas, as quais podem ser valiosas para avaliar a influência de diferentes contextos psicossociais no conhecimento sobre a demência.

Palavras-chave

Cuidador, demência, consciência da doença, intervenção, estudo qualitativo

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