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Background: Dementia is one of the most important causes of dependency worldwide. These patients require constant care. This care is mainly provided by the families. Each family has specific needs and demands specific support services. To improve their quality of life, the family should be considered in the development of strategies that contribute to the provision of support services for them. Considering this, the objectives of this work are to analyse the support needs of these families, as well as the services they access. Method: The FQOLS‐NDs instrument (Badía et al., 2020) was applied by telephone to a sample of 163 relatives of people with dementia in the Spain‐Portugal cross‐border area. The main characteristics of the research participants are: 69.9% are women, aged between 28 and 87, and do not work (63.8%). They are mainly daughters/sons (59.5%) or partners (32.5%) of the person with dementia. In addition, they are mostly their main carers (95.1%) and live with them (74.8%). Results: The main research findings reveal that: 1) The support services most needed by families are information about the disease (53.4%); information about support services (52.8%), and information about where to get them (44.8%). 2) Family members report not being able to access the support services they need. Among them, those to which more than 80% of families do not have access stand out. These are support groups (92.3%), psychological help (90.3%), family respite (85.5%) and spending money (81.1%). 3) There are few support services that families need and consider that they have sufficient access to. The most positive data reveal that only 18.4% of participants perceive the information they receive about the disease as sufficient; only 16.3% consider that they have enough help to run the household, and only 12.8% claim to have access to sufficient information about legal rights. Conclusion: Families are not receiving the support services they most need. Moreover, they do not value the services they access as sufficient. References: Badía, M., Orgaz, M.B., González, E., Vicario‐Molina, I., Gómez‐Vela, M. and NEUROQUALYFAM group (2020). Family Quality of Life Scale ‐ Neurodegenerative Diseases. [ABSTRACT FROM AUTHOR]

Background: In the Spanish case, the social organization of care is characterized by being family oriented. This means that the involvement of the family in the care of its members is high in relation to the participation of other social actors, such as the State, the market, or the community. Neurodegenerative diseases (ND) significantly affect the quality of life of the person, but also that of their family, precisely because of their high involvement in care. Families require support services to increase their well‐being, and several studies have shown the impact that the absence of support services has on the Family Quality of Life (FQoL). Considering this, the main objective of this study is to find out the perception of professionals working in the socio‐health field about the adequacy and sufficiency of the services available to people with ND and their families in the Spain‐Portugal cross‐border area. Method: This research has been developed through qualitative methodology. Three focus groups were held. They involved: 1) public social services personnel; 2) public health services staff; 3) workers in the services offered by private initiatives. All of them carried out their work in the cross‐border area studied. With the support of the Atlas.ti software and following a deductive coding model, the data obtained were systematically coded and interpreted. Results: Initial research results suggest that professionals in the socio‐health field agree on their perceptions of the adequacy and sufficiency of support services provided for families with a member with ND. They consider that: 1) most support services are aimed solely at the needs of the person with a ND and therefore contribute little to improving the FQoL; 2) support services considered very adequate for the improvement of the FQoL are very insufficient; 3) the characteristics of the environment (small population, geographical dispersion, etc.) significantly limit support services in rural areas Conclusion: The support services provided for families with a member with ND are scarce and inadequate, and therefore contribute little to improving the FQoL. There is a need to improve access and adapt support services to the needs of families. [ABSTRACT FROM AUTHOR]

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). Result: 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. Reference: 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. [ABSTRACT FROM AUTHOR]