PosterPDF Available

Review and analysis of the Spanish regulations on health and social care of people with Neurodegenerative Diseases and their families

Abstract

Background: Neurodegenerative diseases (ND) constitute a problem of great magnitude, seriousness and complexity that require actions in the diverse areas of the Health and Social System (Ministerio de Sanidad, Servicios Sociales e Igualdad, 2016). These actions must cover the basic needs of patients and their families, while improving their care and quality of life. Given this situation, the aim of this study is to carry out a detailed review of the current national and regional regulations regarding health and social care of people with ND and their families. Method: After a systematic review of 102 regulatory measures in Spain and in the Autonomous Community of Castile and Leon, those failing to consider the family of the person with ND were discarded. Finally, 35 instructions related to ND in terms of health and social services were analyzed and classified according to their scope (9 state regulations, 16 autonomous community regulations and 10 approved strategies). Results: The analyses showed that: (1) only 34% of the regulatory instructions include contents that are directly or indirectly related to the quality of life of the families of these patients; (2) analyzed instructions do not specify how to coordinate resources and services in the health and social welfare sector for the care of people with ND and their families. Conclusion: This study shows the lack of regulations in our region and country that specifically focus on the families of people with ND, as these relatives are not deemed to be direct beneficiaries. Likewise, there is a lack of specificity regarding the coordination of the services and resources for patients and their families.
OBJECTIVE:
On this basis, the aim is to carry out an educational proposal about affective-sexual diversity, which is aimed to Infant Education and personal development.
OBJECTIVE:
On this basis, the aim is to carry out an educational proposal about affective-sexual diversity, which is aimed to Infant Education and personal development.
METHOD
Systematic review of 102 regulatory measures in Spain
and in the Autonomous Community of Castile and Leon
By these activities, the program allows the children to identify and express their own needs and emotions; and, although, recognize them in others.
This program, also, helps them understand and love their own bodies, projecting a positive image of themselves and their classmates. The sole objective of this program is to communicate uplifting values, and make students understand the fundamental of respect and tolerance.
Eva María Picado Valverde, Eva González Ortega &
NEUROQUALYFAM group
University of Salamanca, Spain
REFERENCES
Ministerio de Sanidad, Servicios
Sociales e Igualdad (2016).
Estrategia en Enfermedades
Neurodegenerativas del Sistema
Nacional de Salud. Madrid:
Ministerio de Sanidad, Servicios
Sociales e Igualdad.
ACKNOWLEDGEMENTS
This poster is part of the Project “NEUROQUALYFAM,
Neurodegenerative Diseases and Familay Quality of
Life”, funded by the Fondo Europeo de Desarrollo Nacional
(FEDER) through the program INTERREG V-A España–
Portugal (POCTEP) 2014-2020
neuroqualyfam.usal.es
neuroqualyfam@usal.es
REVIEW&AND&ANALYSIS&OF&THE&SPANISH&REGULATIONS&ON&HEALTH&AND&SOCIAL&
CARE&OF&PEOPLE&WITH&NEURODEGENERATIVE&DISEASES&AND&THEIR&FAMILIES&
&
!9 state regulations
CEAFA (2017) Consecuencias de la enfermedad de
Alzheimer y otras demencias en los cuidadores
familiares. Confederación Española de Asociaciones de
Familias de Personas con Alzheimer y otras demencias
DiZazzo-Miller, R., & Samuel, P.S. (2011). Family Quality of
Life Survey: Main Caregivers of Persons with Dementia.
Detroit: Wayne State University.
CEAFA (2017) Consecuencias de la enfermedad de
Alzheimer y otras demencias en los cuidadores
familiares. Confederación Española de Asociaciones de
Familias de Personas con Alzheimer y otras demencias
DiZazzo-Miller, R., & Samuel, P.S. (2011). Family Quality of
Life Survey: Main Caregivers of Persons with Dementia.
Detroit: Wayne State University.
RESULTS:
!16 autonomous community
regulations
!10 approved strategies
34% of th e 102 re g u la t o ry
instructions include contents that
are directly or indirectly related to
the quality of life of the families
of these patients.
do not specify how to coordinate
resources and services in the
health and social welfare sector
for the care of people with ND and
their families.
INTRODUCTION
Neurodegenerative diseases (ND) constitute a problem of great
magnitude, seriousness and complexity that require actions in the diverse
areas of the Health and Social System (Ministerio de Sanidad, Servicios
Sociales e Igualdad, 2016). These actions must cover the basic needs
of patients and their families, while improving their care and quality
of life. The aim of this study is to carry out a detailed review of the current
national and regional regulations regarding health and social care of
people with ND and their families.
CONCLUSIONS
This study shows the lack of regulations in our region and
country specifically focus on the families of people with ND, as
these relatives are not deemed to be direct beneficiaries.
Likewise, there is a lack of specificity regarding the coordination
of the services and resources for patients and their families.
34%
66%
Related to the quality of life of the families of ND patients
Non related to the quality of life of the families of ND patients
The instructions related to ND in terms of health and social
services were analyzed and classified according to their scope:
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