Conference PaperPDF Available

Family quality of life in Neurodegenerative Diseases: Exploring needs and supports in the cross-border area Spain-Portugal

Authors:

Abstract

Neurodegenerative diseases often have an impact on both patients and their family caregivers. Given that families are an important support resource for people with neurodegenerative diseases, it is important to ensure their own quality of life. This symposium aim to present the NEUROQUALYFAM project funded by Cross Border Cooperation Programme Spain-Portugal 2014-2020 (POCTEP). The main objective of this project is to improve the quality of life of family caregivers who care people with neurodegenerative disease at home through the assessment of their needs and support resources, and the subsequent design and optimization of high-quality resources and services that are family-centered.
OnDemand Symposia
32
203 - FAMILY QUALITY OF LIFE IN NEURODEGENERATIVE DISEASES: EXPLORING NEEDS AND SUPPORTS
IN THE CROSS-BORDER AREA SPAIN-PORTUGAL
Coordinator: Eva González Ortega
University of Salamanca
evagonz@usal.es
Neurodegenerative diseases often have an impact on both patients and their family caregivers. Given
that families are an important support resource for people with neurodegenerative diseases, it is
important to ensure their own quality of life. This symposium aim to present the NEUROQUALYFAM
project funded by Cross Border Cooperation Programme Spain–Portugal 20142020 (POCTEP). The main
objective of this project is to improve the quality of life of family caregivers who care people with
neurodegenerative disease at home through the assessment of their needs and support resources, and
the subsequent design and optimization of high-quality resources and services that are family-centered.
Communication #1:
THE NEUROQUALYFAM PROJECT: AN OVERVIEW
Speaker 1: Eva González Ortega
University of Salamanca (Spain)
evagonz@usal.es
The care of individuals with neurodegenerative diseases is often delivered in family settings, so it is
important to understand the needs of the family unit involved in this care to determine the factors that
contribute to family quality of life. A qualitative study using focus groups was conducted to identify the
unmet needs of family caregivers from their own perspectives.
Communication #2:
NEURODEGENERATIVE DISEASES: ANALYSIS OF THE SITUATION IN THE CROSS-BORDER REGION OF
SPAIN PORTUGAL
Speaker 2: Ermelinda Marques
Instituto Politécnico da Guarda (Portugal)
emarques@ipg.pt
Neurodegenerative diseases are one of the main causes of disability and dependence in the world,
which have a strong impact on the physical, psychological and social health and well-being of the people
with these diseases and their families. The neurodegenerative diseases addressed in this investigation
are Alzheimer's and other dementias, Parkinson's and Multiple Sclerosis. The first two are related to age,
which makes its prevalence very high, thus justifying the development of projects in this ageing region,
in order to know the magnitude of the problem and subsequently implement strategies that aim to
increase the quality of life of families of people with these pathologies and delay as much as possible the
evolution of the diseases and sequelae.
Communication #3:
FAMILY QUALITY OF LIFE SURVEY- NEURODEGENERATIVE DISEASES
Speaker 3: Isabel Vicario-Molina
University of Salamanca (Spain)
ivicario@usal.es
https://doi.org/10.1017/S1041610220001933
Downloaded from https://www.cambridge.org/core. IP address: 88.14.173.84, on 16 Nov 2020 at 11:49:18, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms.
2020 IPA International Congress
33
Despite the growing interest in the topic of family quality of life, this construct has not been assessed
yet in families of people with neurodegenerative diseases, because none of the existing instruments has
been adapted to the Spanish context. Consequently, the goal of this study is to present the results of the
translation, adaptation, and validation of the Spanish version of Family Quality of Life Survey-
Neurodegenerative Diseases.
Communication #4:
HEALTH CARE FOR PEOPLE WITH NEURODEGENERATIVE DISEASES AND THEIR CAREGIVERS IN THE
HEALTH SYSTEM OF CASTILLA Y LEÓN (SPAIN)
Speaker 4: María Antonia Martín Delgado
Gerencia Regional de Salud de Castilla y León (Spain)
mmartinde@saludcastillayleon.es
The strategy of neurodegenerative diseases of the National Health System of Spain includes, among its
objectives, providing the best health and social care to the affected population, their caregivers and
their families. Castilla y León, in its IV Health Plan, wants to improve the care of people with
neurodegenerative diseases, by considering them as a priority health problem that
must receive integral health care due to their implications for the patient, and its social and family
environment. To this end, measures have been taken regarding prevention and early detection through
the development of training, awareness-raising programmes for health professionals, including specific
assistance guides in the electronic clinical history of Primary care, attention to these pathologies in the
Portfolio of Services (Primary and Specialized Care), development and updating of integrated healthcare
processes, cooperation and integrated operation between the health and social systems implicated in
the improvement of the integral attention to these people and their families, channels of civic
participation and research development that allows to transfer knowledge to improve the health care
practice in Castilla y León.
https://doi.org/10.1017/S1041610220001933
Downloaded from https://www.cambridge.org/core. IP address: 88.14.173.84, on 16 Nov 2020 at 11:49:18, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms.
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