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Cross-sectional study reveals caregiver burden and need for better support for individuals with neurological disorders, suggesting urgent need for respite care.
Introduction: Neurological diseases are a major cause of long-term disability and de-pendence. In Poland, as in many countries, informal caregivers provide most long-term care for individuals with chronic and progressive neurological conditions. Although essential, this role is associated with substantial physical, psychological, and social burden. This study aimed to assess the scope and nature of support provided by care-givers to people with neurological diseases and to identify factors associated with dif-ferences in support and caregiver burden. Materials and Methods: A cross-sectional quantitative study was conducted using a CAWI survey. The sample included 104 informal caregivers of adults with various neurological conditions. An author-designed questionnaire and the “Actually Provided Support” subscale of the Berlin Social Support Scales (BSSS) were used. Nonparametric statistical tests were applied (p < 0.05). Results: Caregivers provided a high level of support, particularly emotional and in-strumental support, while informational support was less intensive. Women more fre-quently reported high emotional and instrumental support. Higher buffering–protective support was more common among caregivers aged over 45 years. The most frequently reported difficulties were mental and physical fatigue. Key barriers included limited access to reimbursed healthcare services and the lack of temporary replacement in caregiving. Caregivers most often indicated the need for respite care and better ac-cess to information and education. Conclusions: Informal caregivers play a crucial role in the daily functioning of people with neurological diseases, despite high burden and insufficient systemic support. Ex-panding respite care, improving access to information, and better coordination of healthcare services are urgently needed.
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Pasek et al. (2025) studied this question.
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