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Experiências de cuidadores informais de pessoas com demência: dificuldades, consequências e fatores que afetam a vida de cuidadores
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Abstract(s)
O presente estudo teve como objetivo compreender como é que a responsabilidade de cuidar de pessoas com demência impacta os Cuidadores Informais (CI) quanto à sobrecarga, satisfação com a vida, depressão, ansiedade e stress. Complementarmente, visou conhecer quais eram as demências mais prevalentes na amostra e identificar qual é o perfil típico de um CI de uma pessoa com demência.
Foi realizada uma investigação quantitativa com uma amostra de 20 pessoas, todos CI de pessoas com demência. Foram avaliadas a sobrecarga, depressão, ansiedade, stress e satisfação com a vida, através dos seguintes instrumentos: Zarit Burden Interview (ZBI); Depression, Anxiety and Stress Scale (DASS-21); Satisfaction with Life Scale (SWLS), assim como um questionário sociodemográfico. Os dados obtidos foram analisados através do SPSS e a partir de estatística descritiva, correlações bivariadas de Spearman, testes não paramétricos de amostras independentes e testes de Mann-Whitney.
Através da análise dos dados, verificou-se que a idade média dos participantes era de 54 anos (DP = 15.0), com a maioria sendo do sexo feminino (70%). No que diz respeito ao seu grau de parentesco para com o dependente, a maioria reportou ser filho/a da pessoa cuidada (60%). O tipo de demência mais comum foi a Demência de Alzheimer (45%). Em média, o nível de sobrecarga nos CI é de 63,9 (DP = 17.0). No que diz respeito à depressão, ansiedade e stress, os valores médios foram, respetivamente: 14.3 (DP = 11.4), 9.33 (DP = 11,2) e 17.8 (DP = 11,3). Por fim, em relação à satisfação com a vida, a média foi 13.4 (DP = 4.60). Também foi possível observar-se uma associação entre a sobrecarga e as variáveis da depressão (r = 0.70, p. = .001), ansiedade (r = 0.53, p = .023) e stress (r = 0.71, p < .001).
A partir dos resultados foi possível determinar-se que a maioria dos participantes na presente amostra sofrem de níveis significativos de sobrecarga, depressão, ansiedade e stress. Também se verificou que altos níveis de sobrecarga estavam associados à presença de elevados níveis de depressão, ansiedade e stress.
Este achado sugere que a sobrecarga é um fator de risco significativo para a saúde mental dos CI. Acreditamos que esta informação pode servir para orientar o desenvolvimento de programas de intervenção de modo a melhorar a qualidade de vida dos CI.
O presente estudo também contribui para aumentar a conscientização sobre os desafios enfrentados por CI de pessoas com demência. Esperamos que estes dados incentivem mais pesquisas sobre a prevenção de problemas de saúde mental em CI.
This study aimed to understand how the responsibility of caring for people with dementia impacts Informal Caregivers (IC) in terms of burden, life satisfaction, depression, anxiety and stress. In addition, it aimed to find out which dementias were most prevalent in the sample and to identify the typical profile of an IC caring for a person with dementia. Quantitative research was carried out with a sample of 20 people, all of them caregivers of people with dementia. Caregiver burden, depression, anxiety, stress and life satisfaction were assessed using the following instruments: Zarit Burden Interview (ZBI); Depression, Anxiety and Stress Scale (DASS-21); Satisfaction with Life Scale (SWLS), as well as a sociodemographic questionnaire. The data obtained was analyzed using SPSS and descriptive statistics, Spearman's bivariate correlations, non-parametric tests for independent samples and Mann-Whitney tests. Data analysis showed that the average age of the participants was 54 (SD = 15.0), with the majority being female (70%). With regard to their degree of kinship with the dependent person, the majority reported being the caregiver's child (60%). The most common type of dementia was Alzheimer's (45%). On average, the level of burden in ICs is 63.9 (SD = 17.0). With regard to depression, anxiety and stress, the average values were 14.3 (SD = 11.4), 9.33 (SD = 11.2) and 17.8 (SD = 11.3) respectively. Finally, the average for life satisfaction was 13.4 (SD = 4.6). It was also possible to observe an association between overload and the variables of depression (r = 0.70, p. = .001), anxiety (r = 0.53, p = 0.02) and stress (r = 0.71, p < .001). From the results it was possible to determine that the majority of participants in this sample suffer from significant levels of caregiver burden, depression, anxiety and stress. It was also found that high levels of overload were associated with high levels of depression, anxiety and stress. This finding suggests that caregiver burden is a significant risk factor for the mental health of IC. We believe that this information can serve to guide the development of intervention programs in order to improve the quality of life of IC. This study also contributes to raising awareness about the challenges faced by IC of people with dementia. We hope that this data will encourage further research into the prevention of mental health problems in IC.
This study aimed to understand how the responsibility of caring for people with dementia impacts Informal Caregivers (IC) in terms of burden, life satisfaction, depression, anxiety and stress. In addition, it aimed to find out which dementias were most prevalent in the sample and to identify the typical profile of an IC caring for a person with dementia. Quantitative research was carried out with a sample of 20 people, all of them caregivers of people with dementia. Caregiver burden, depression, anxiety, stress and life satisfaction were assessed using the following instruments: Zarit Burden Interview (ZBI); Depression, Anxiety and Stress Scale (DASS-21); Satisfaction with Life Scale (SWLS), as well as a sociodemographic questionnaire. The data obtained was analyzed using SPSS and descriptive statistics, Spearman's bivariate correlations, non-parametric tests for independent samples and Mann-Whitney tests. Data analysis showed that the average age of the participants was 54 (SD = 15.0), with the majority being female (70%). With regard to their degree of kinship with the dependent person, the majority reported being the caregiver's child (60%). The most common type of dementia was Alzheimer's (45%). On average, the level of burden in ICs is 63.9 (SD = 17.0). With regard to depression, anxiety and stress, the average values were 14.3 (SD = 11.4), 9.33 (SD = 11.2) and 17.8 (SD = 11.3) respectively. Finally, the average for life satisfaction was 13.4 (SD = 4.6). It was also possible to observe an association between overload and the variables of depression (r = 0.70, p. = .001), anxiety (r = 0.53, p = 0.02) and stress (r = 0.71, p < .001). From the results it was possible to determine that the majority of participants in this sample suffer from significant levels of caregiver burden, depression, anxiety and stress. It was also found that high levels of overload were associated with high levels of depression, anxiety and stress. This finding suggests that caregiver burden is a significant risk factor for the mental health of IC. We believe that this information can serve to guide the development of intervention programs in order to improve the quality of life of IC. This study also contributes to raising awareness about the challenges faced by IC of people with dementia. We hope that this data will encourage further research into the prevention of mental health problems in IC.
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Keywords
Demência Cuidadores informais Sobrecarga Satisfação com a vida Depressão Ansiedade Stress Portugal Dementia Informal caregivers Caregiver burden Satisfaction with life Depression Anxiety