2024-03-28T08:48:31Zhttps://gredos.usal.es/oai/requestoai:gredos.usal.es:10366/1455562023-06-12T13:42:33Zcom_10366_145469com_10366_4512com_10366_3823col_10366_145475
Social services for neurodegenerative patients and their families
Álamo Gómez, Nuria María del
Montes López, Estrella
Picado Valverde, Eva María
Yurrebaso Macho, Amaia
NEUROQUALYFAM group
Neurodegenerative disease
Families
Services
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.
2021-03-16
2021-03-16
2020-11-04
info:eu-repo/semantics/conferenceObject
Del Álamo-Gómez, N., Montes-López, E., Picado-Valverde, E.M., Yurrebaso-Macho, A. & NEUROQUALYFAM group (2020). Social services for neurodegenerative patients and their families. International Psychogeriatrics, 32(S1), 182-182. https://doi.org/10.1017/S1041610220003130
1741-203X
http://hdl.handle.net/10366/145556
10.1017/S1041610220003130
eng
https://doi.org/10.1017/S1041610220003130
0541_NEURO_QUALYFAM_6_E
info:eu-repo/semantics/openAccess
Cambridge University Press