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O luto antecipatório de familiares de pessoas mais velhas institucionalizadas com demência
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O luto antecipatório é um processo que se inicia quando os familiares se apercebem
das perdas cognitivas e físicas do seu ente querido. Este estudo teve como objetivo conhecer
vivências de luto antecipatório em famílias de pessoas mais velhas com demência,
institucionalizadas. Particularmente, procurou compreender vivências dos familiares
cuidadores, desde o diagnóstico de demência até à institucionalização; conhecer experiências,
sentimentos e emoções dos familiares cuidadores face ao cuidar da pessoa mais velha com
demência e à institucionalização; identificar critérios de vulnerabilidade no luto antecipatório;
e reconhecer possíveis fatores protetores da saúde familiar e de intervenção no luto
antecipatório, com base na vivência das famílias. Desenvolveu-se uma investigação de cariz
eminentemente qualitativo e descritivo, com uma amostra constituída por 25 famílias de
cuidadores de idosos institucionalizados com demência. Aplicou-se uma entrevista
semiestruturada e um questionário sociodemográfico aos cuidadores informais de idosos, e a
escala de Barthel às pessoas mais velhas institucionalizadas. Realizou-se a análise temática
para dados obtidos nas questões abertas e análise estatística descritiva simples, para dados
do questionário, recorrendo ao software IBM SPSS Statistics 29. Os resultados destacam que
o cuidar ao longo da demência é um processo complexo e exigente, marcado por sentimentos
de perda, de sobrecarga e, por vezes de conflito entre familiares, que muitas vezes referem
falta de conhecimento técnico para cuidar. A institucionalização decorre principalmente da
incapacidade das famílias continuarem a providenciar um cuidado adequado e seguro no
decorrer da doença, e tem grande impacto na saúde do cuidador. O processo de luto é
mediado por fatores de vulnerabilidade, como a sobrecarga emocional e física, dificuldade de
gestão da vida diária, pessoal e profissional, e por fatores protetores como a espiritualidade,
e as vivências positivas que os familiares experienciam ao longo do cuidar. As conclusões
remetem para a importância de intervir na minimização das principais barreiras expressas
pelos cuidadores no decorrer do luto antecipatório, bem como de valorizar o seu papel e de
potenciar as vivências positivas. Ao longo da doença, tanto no domicílio, como durante a
institucionalização importa proporcionar cuidados centrados nas necessidades de quem
cuida, promovendo assim um luto saudável. Para isso é necessário conhecer melhor estas
vivências de forma qualitativa e atenta às particularidades.
Anticipatory grief is a process that begins when family members perceive the cognitive and physical losses of a loved one. This study aimed to understand experiences of anticipatory grief among families of institutionalized older people with dementia. Specifically, it sought to explore the experiences of family caregivers from the diagnosis of dementia to institutionalization; to understand the experiences, feelings, and emotions of family caregivers in the face of caring for an older person with dementia and institutionalization; to identify vulnerability criteria in anticipatory grief; and to recognize possible protective factors for family health and interventions in anticipatory grief, based on the experiences of families. A predominantly qualitative and descriptive study was conducted with a sample of 35 families caregivers of institutionalized older people with dementia. A semi-structured interview and a sociodemographic questionnaire were administered to informal caregivers of elderly people, and the Barthel Index was used with institutionalized older people. Thematic analysis was performed on data obtained from open-ended questions, and simple descriptive statistical analysis was conducted on questionnaire data using IBM SPSS Statistics version 29. The results highlight that caregiving throughout dementia is a complex and demanding process, marked by feelings of loss, burden, and, at times, conflict among family members, who often report a lack of technical knowledge for caregiving. Institutionalization mainly results from families inability to of continue providing adequate and safe care throughout the course of the illness, and has a significant impact on the caregiver's health. The grieving process is mediated by vulnerability factors, such as emotional and physical overload and difficulties in managing daily, personal, and professional life, and by protective factors such as spirituality and the positive experiences that family members have throughout the caregiving process. The conclusions emphasize the importance of interventions aimed at minimizing the main barriers expressed by caregivers during anticipatory grief, as well as valuing their role and enhancing positive experiences. Throughout the course of the illness, both at home and during institutionalization, it is important to provide care centered on the needs of the caregiver, thus promoting healthy grieving. To do this, it is necessary to gain a better understanding of these experiences in a qualitative manner, paying close attention to their particularities. Keywords: Anticipatory Grief; Institutionalization; Caregivers; Dementia; Intervention.
Anticipatory grief is a process that begins when family members perceive the cognitive and physical losses of a loved one. This study aimed to understand experiences of anticipatory grief among families of institutionalized older people with dementia. Specifically, it sought to explore the experiences of family caregivers from the diagnosis of dementia to institutionalization; to understand the experiences, feelings, and emotions of family caregivers in the face of caring for an older person with dementia and institutionalization; to identify vulnerability criteria in anticipatory grief; and to recognize possible protective factors for family health and interventions in anticipatory grief, based on the experiences of families. A predominantly qualitative and descriptive study was conducted with a sample of 35 families caregivers of institutionalized older people with dementia. A semi-structured interview and a sociodemographic questionnaire were administered to informal caregivers of elderly people, and the Barthel Index was used with institutionalized older people. Thematic analysis was performed on data obtained from open-ended questions, and simple descriptive statistical analysis was conducted on questionnaire data using IBM SPSS Statistics version 29. The results highlight that caregiving throughout dementia is a complex and demanding process, marked by feelings of loss, burden, and, at times, conflict among family members, who often report a lack of technical knowledge for caregiving. Institutionalization mainly results from families inability to of continue providing adequate and safe care throughout the course of the illness, and has a significant impact on the caregiver's health. The grieving process is mediated by vulnerability factors, such as emotional and physical overload and difficulties in managing daily, personal, and professional life, and by protective factors such as spirituality and the positive experiences that family members have throughout the caregiving process. The conclusions emphasize the importance of interventions aimed at minimizing the main barriers expressed by caregivers during anticipatory grief, as well as valuing their role and enhancing positive experiences. Throughout the course of the illness, both at home and during institutionalization, it is important to provide care centered on the needs of the caregiver, thus promoting healthy grieving. To do this, it is necessary to gain a better understanding of these experiences in a qualitative manner, paying close attention to their particularities. Keywords: Anticipatory Grief; Institutionalization; Caregivers; Dementia; Intervention.