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Authors
Abstract(s)
O aumento da população com demência tem gerado um crescente número de
famílias que lidam com esta doença, resultando num impacto significativo nas dinâmicas
familiares e nas vidas dos cuidadores, que enfrentam desafios emocionais, físicos e
sociais decorrentes desta doença. O papel dos familiares torna-se crucial, uma vez que
assumem responsabilidades adicionais, enfrentam mudanças na dinâmica familiar e
deparam-se com o declínio cognitivo e funcional da pessoa com demência. O objetivo
deste estudo é analisar o impacto da demência na família, de modo a contribuir para o
desenvolvimento de intervenções que visem melhorar o bem-estar tanto do indivíduo
com demência e da sua família.
Foi desenvolvida uma investigação qualitativa, utilizando um desenho
participativo com a realização de três grupos focais: um grupo com cônjuges de pessoas
com demência (N=6), um grupo com filhas de pessoas com demência (N=5) e um grupo
com técnicos que trabalham com pessoas com demência (N=6). Os grupos focais foram
submetidos a uma análise de conteúdo, sendo as informações extraídas manualmente e
com recurso ao software Atlas.ti 23, para a criação de nuvens de palavras e apoio na
seleção das subcategorias.
Os resultados revelaram que a demência exerce um impacto significativo na vida
familiar, afetando as relações interpessoais, a saúde emocional e o bem-estar da família.
Identificaram-se como fatores de impacto a mudança de papéis e de rotina, as limitações
na vida pessoal, social e profissional e o luto antecipado. Foram, também, identificadas
estratégias de adaptação e recursos utilizados pelos familiares para lidar com os desafios
impostos pela demência, nomeadamente o suporte social, a procura por informações
especializadas e o autocuidado.
Os resultados deste estudo podem contribuir para o desenvolvimento de
instrumentos de avaliação, políticas públicas e programas de intervenção destinados a
reduzir o impacto negativo da demência na família e a promover o bem-estar das
famílias.
The increase in the population with dementia has generated a growing number of families dealing with this disease, resulting in a significant impact on family dynamics and on the lives of caregivers, who face emotional, physical and social challenges arising from this disease. The role of family members becomes crucial as they assume additional responsibilities, face changes in family dynamics, and are faced with the cognitive and functional decline of the person with dementia. The aim of this study is to analyze the impact of dementia on the family, in order to contribute to the development of interventions that aim to improve the well-being of both the individual with dementia and his/her family. A qualitative research was developed, using a participatory design with the realization of three focus groups: a group with spouses of people with dementia (N=6), a group with daughters of people with dementia (N=5) and a group with technicians working with people with dementia (N=6). The focus groups were subjected to content analysis, with the information being extracted manually and using Atlas.ti 23 software to create word clouds and support the selection of subcategories. The results revealed that dementia has a significant impact on family life, affecting interpersonal relationships, emotional health and family well-being. Changes in roles and routines, limitations in personal, social and professional life, and anticipated grief were identified as impacting factors. Adaptive strategies and resources used by family members to cope with the challenges of dementia were also identified, including social support, seeking specialized information, and self-care. The results of this study may contribute to the development of assessment tools, public policies and intervention programs aimed at reducing the negative impact of dementia on the family and promoting family well-being.
The increase in the population with dementia has generated a growing number of families dealing with this disease, resulting in a significant impact on family dynamics and on the lives of caregivers, who face emotional, physical and social challenges arising from this disease. The role of family members becomes crucial as they assume additional responsibilities, face changes in family dynamics, and are faced with the cognitive and functional decline of the person with dementia. The aim of this study is to analyze the impact of dementia on the family, in order to contribute to the development of interventions that aim to improve the well-being of both the individual with dementia and his/her family. A qualitative research was developed, using a participatory design with the realization of three focus groups: a group with spouses of people with dementia (N=6), a group with daughters of people with dementia (N=5) and a group with technicians working with people with dementia (N=6). The focus groups were subjected to content analysis, with the information being extracted manually and using Atlas.ti 23 software to create word clouds and support the selection of subcategories. The results revealed that dementia has a significant impact on family life, affecting interpersonal relationships, emotional health and family well-being. Changes in roles and routines, limitations in personal, social and professional life, and anticipated grief were identified as impacting factors. Adaptive strategies and resources used by family members to cope with the challenges of dementia were also identified, including social support, seeking specialized information, and self-care. The results of this study may contribute to the development of assessment tools, public policies and intervention programs aimed at reducing the negative impact of dementia on the family and promoting family well-being.
Description
Keywords
Cuidadores Demência Dinâmica Familiar Família Impacto Intervenção