Reducing the burden of caregivers in Huntington’s by using an online interventional neuropsychological approach: a pilot study Reduzindo a sobrecarga dos cuidadores na doença de Huntington usando uma abordagem neuropsicológica interventiva online: um estudo piloto
Tipo
Artigo
Data de publicação
2024
Periódico
Dementia e Neuropsychologia
Citações (Scopus)
0
Autores
Santos T.H.
Pantaleao F.N.
Machado T.N.
Luiz L.O.
Capato T.T.C.
Pantaleao F.N.
Machado T.N.
Luiz L.O.
Capato T.T.C.
Orientador
Título da Revista
ISSN da Revista
Título de Volume
Membros da banca
Programa
Resumo
© 2024, Associacao Arquivos de Neuro-Psiquiatria. All rights reserved.Huntington’s disease (HD) is a hereditary, neurodegenerative disease characterized by motor, cognitive, and behavioral issues. As the disease progresses, people become dependent on their caregivers leading to a significant burden. There is a lack of effective neuropsychological intervention to support this population. Objective: To develop an online neuropsychological intervention and evaluate its effects in decreasing the HD caregiver burden. Methods: This qualitative pilot study was conducted online during the COVID-19 pandemic in Brazil. We selected a convenience sample of five informal caregivers of HD patients (mean 46.2 years old). At baseline, participants were assessed via an individual online neuropsychology interview/screening, covering demographic data. Subsequently, we conducted 20 online 90-minute sessions of the psychological consultation over 12 months. Each session was structured in three stages: 1) Welcoming; 2) Breathing and mindfulness practice; and 3) Discussion of themes about the group’s needs based on the main complaints. A second intervention assessment was applied. Results: None of the caregivers were provided with details about HD at the time of diagnosis and later care. The necessity to care for a person with a rare genetic disease was added to caregivers’ already-existing working routine and home services, causing a symptom of overload. After the neuropsychological intervention, all participants reported feeling less burdened by caring, improved self-care and conflict resolution with the person with HD through expanding behavioral repertoire focused on emotions and communication. Conclusion: Online neuropsychologic intervention can reduce the burden of HD caregivers. More comprehensive studies should investigate these findings.