https://orcid.org/0000-0003-2244-895X
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ABSTRACT
Neurodegenerative diseases (NDs) are a major cause of dependency among elderly and affect the entire family unit. However, the literature has paid little attention to Family Quality of Life (FQOL) and focused on the patient and the main caregiver. The aim was to analyze the FQOL of people with NDs from a systemic perspective and to identify associated factors. A sample of 300 family caregivers from the cross-border region of Spain-Portugal completed the FQOLS – ND, which collected FQOL global and domain-level scores in terms of attainment and satisfaction. The highest rates of FQOL were obtained for the domain Family relations and the lowest for Support from services. The level of perceived barriers to social-health services emerged as the strongest predictor of global FQOL in all models. It is essential to reduce the obstacles to access social-health services and provide the family with resources according to their needs, especially in rural areas.
Acknowledgments
The authors would like to thank the families of people with NDs and the health and social services professionals who collaborated in the study.
Disclosure statement
No potential conflict of interest was reported by the authors.
Data availability statement
The datasets generated during and/or analyzed during the current study are available in the GREDOS repository, http://hdl.handle.net/10366/147031
Ethics statement
The study was approved by the Bioethics Committee of the University of Salamanca (Protocol No. 2019/238). All procedures comply with the principles of the 1964 Declaration of Helsinki and its amendments. Verbal and written informed consent was obtained from all participants prior to data collection.