Neurodegenerative diseases such as Parkinson’s and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers’ psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson’s disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson’s disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson’s or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.
La evolución sociodemográfica y su incidencia en los cuidados de larga duración en patologías emergentes como la demencia demandan respuestas desde los diferentes sistemas de protección social. La presente investigación se ha centrado en determinar los impactos derivados del lugar de residencia en la adaptación psicosocial y calidad de vida de familiares cuidadores de personas con demencia. Los resultados confirman diferencias entre entornos urbanos y rurales-semirurales, aunque haya, como dato general, una buena calidad de vida y adaptación de las personas cuidadoras de familiares con demencia. Todo apunta a la necesidad de promover intervenciones sociosanitarias alineadas con los espacios contextuales.
The increasing prevalence of dementia is threatening the capacity of health and social service systems to provide long-term care support at the territorial level. In both rural and urban areas, specific family members (gendered care) are responsible for the daily care of their relatives. The aim of this work is to explore gender and territorial implications in the provision of in-home care by family members. To this end, family caregivers in Navarre, Spain, were administered the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a semi-structured interview. The results show the good psychosocial adjustment of caregivers of relatives with dementia but the negative impacts of caregiving in the domestic, relational, and psychological domains. Moreover, the feminization of psychological distress was found to predominate in rural areas since mainly women are responsible for instrumental and care tasks, while men seek other complementary forms of support. Place of residence (rural vs. urban) was found to exert a strong effect on the respondents’ conception, life experience, and provision of care. Consequently, territorial and gender differences in coping with and adjusting to care require the design of contextualized actions adapted to caregivers’ needs.
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