Individuals having experienced a stroke need the help of an individual to perform their activities of daily living. Therefore, the disease affects not only patients but also their caregivers.

This study aimed to investigate how aphasia affects caregivers' burden of care, quality of life, and occupational performance.

This cross-sectional study involved Group 1, (n=51) the caregivers of individuals having experienced a stroke with aphasia, and Group 2 (n = 51), the caregivers of individuals having experienced a stroke without aphasia. The caregivers were evaluated using the sociodemographic information form, the Zarit Caregiver Burden Scale, the SF-36 Short Form, and Canadian Occupational Performance Measure tests.

Our study found that the caregiver burden in Group 1 was higher than in Group 2 (t = 3.8, p = 0.01). Caregivers in Group 1 also had higher pain levels (t = -2.21, p = 0.029) and lower social functions than those in Group 2 (t = -2.54, p = 0.013). There was no statistically significant difference between the other sub-parameters of quality of life (p > 0.05). It was observed that the occupational performance (t = -3.31, p = 0.001) and satisfaction levels (t = -3.57, p = 0.001) of the caregivers in Group 1 were lower than those of the caregivers in Group 2.

Occupational therapy evaluation and intervention programs for caregivers should consider the occupational performance of caregivers of individuals with aphasia and include approaches to problem areas.

In Latin America (LA), 40-50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthcare and social security systems; however, their unpaid work is often underappreciated and under-protected. Recognizing the need to address these unrecognized and undervalued women, the Americas Health Foundation (AHF) convened a panel of LA experts on caregiving for people with RDs to provide recommendations to support the undervalued family caregivers. A panel of LA experts in caregiving for RDs were given questions to address the challenges faced by family caregivers of people with RDs in LA. During a 3-day conference, the panelists' responses were discussed and edited until the panel agreed on recommendations to address the challenges. The identified challenges for caregivers included physical, emotional, and economical areas. Caregivers, primarily women, experienced physical pain, and social isolation, and were forced to pay substantial out-of-pocket expenses in their caregiving roles. Brazil and Colombia are at the forefront of policies to protect caregivers and their experiences in attempting to provide for this group are outlined as case studies for what is possible in LA. Finally, recognizing that caregivers must be included in formulating, executing, and evaluating care policies for people living with RDs and that the caregivers themselves require social assurances, the panel suggested policy objectives aimed at protecting caregivers of people living with RDs. The recommendations ranged from recognizing the role of the family caregiver as an essential supplement to the formal healthcare system to providing financial assistance, training, and workplace protection, among others. Finally, monitoring and evaluating the impact of policies is necessary to ensure that LA is moving forward in caring for family caregivers for people with RDs.