Social services for neurodegenerative patients and their families

Abstract

Introduction: Neurodegenerative diseases (ND) are the most important cause of dependency in the world. The care of these patients is mostly assumed by their families. As a result, their family quality of life (FQoL) may be affected, decreasing their well-being, and modifying their habits and normal functioning. FQoL is a multidimensional concept, composed of different aspects that determine the life situation of each family, being these components both objective and subjective. Thus, the FQoL will depend on being able to access to support services that respond to the individual needs of all members and that this is adequate to adapt the environment and lifestyle to the demands of the disease. Public administrations are responsible for covering the socio-health support needs of people with ND and their families. Objective: The objective of this research is to analyse whether the currently available social services are in accordance with the Family Life Quality model. Method: A descriptive analysis of the support offered by the public services of the Autonomous Community of Castilla y León (Spain) to people with ND and their families has been carried out, analysing its correspondence with the dimensions of the Quality of Family Life Survey of Brown and collaborators (2006): health of the family, financial well-being, family relationships, informal support, support from care services, the influence of values, leisure and community interaction. Results: The research results suggest that 1) most public services are aimed exclusively at the care of the person with ND; 2) these supports address the needs of the financial well-being, family relations and community interaction dimensions; 3) these are mainly aimed at supporting the situation when the illness worsens; 4) the limited specific services for families support them in the enjoyment of leisure and financial well-being. Conclusion: The public welfare system of Castilla y León does not consider the family of people with ND as the target of its support services, but the person with ND declared as a dependent. Thus, it does not offer support services aimed at satisfying some needs linked to the dimensions of the FQoL model. References: Brown, I., Brown, R. I., Baum, N. T., Isaacs, B., J., Myerscough, T., Wang, M. (2006). Family Quality of Life Survey: Main caregivers of people with intellectual disabilities. Surrey Place Centre.