http://hdl.handle.net/10366/145475 2026-04-24T16:43:16Z http://hdl.handle.net/10366/157417 [ES] Se estima que la población española con enfermedades neurodegenerativas (EN) es de unas 400000 personas. Esta circunstancia, tiene consecuencias para las personas afectadas, sus familias y la sostenibilidad del Sistema Nacional de Salud y la Red asistencial de Servicios Sociales. El marco normativo y otros instrumentos procedimentales marcan las actuaciones en el ámbito social y el sanitario, además de indicar los beneficiarios con derechos a prestaciones y recursos públicos. La variedad de la regulación en los diferentes niveles y ámbitos competenciales desencadenan cierta ambigüedad en la concreción de las prestaciones dirigidas a las personas afectadas y sus familias. Método: Se ha analizado el contenido de 68 registros relacionados con la legislación estatal y autonómica, así como instrumentos normativos y procedimentales que desarrollan 38 prestaciones sociosanitarias en el catálogo público, utilizando como criterio de análisis los beneficiarios: personas beneficiarias, familia y afectados y exclusivamente a las familias. Evaluado por 3 expertas: dos en servicios sociales y una en el modelo de calidad de vida. 2021-05-21T00:00:00Z http://hdl.handle.net/10366/148473 [EN]Background Family quality of life (FQoL) is a recent construct to be applied in neurodegenerative diseases (NDs). In this context, there is interest in advancing in the measurement of the FQOL as a first step to determine the supports that families need to perceive quality of life. The aim of this study was to test the validity of the Family Quality of Life Survey- Dementia (DiZazzo-Miller & Samuel, 2011) in order to assess FQoL among family members of individuals with NDs who live in the cross-border area of Spain-Portugal. Method Three hundred family members of people with NDs completed the FQoLS-NDs Survey (Badia et al., 2020). The mean age was 62.4 years (SD = 13.34). Most were males (70%), married (79.7%), not working (64.7%), with low income (66.1%), and had elementary/high studies (73.1%). The majority were the spouse/partner (40.9%) or son/daughter (51.7%) of the care-recipient and played the role of primary caregiver (93.3%). Sixty percent of care-recipients were females (M= 79.3 years; SD= 11.7). Sixty two percent presented dementia, 30.4 % Parkinson´s disease, and 7.6% multiple sclerosis. Construct validity was tested by correlation analysis to examine associations between domain level outcomes (i.e., health, financial well-being, family relationships, support from others, support from services, influence of values, careers, leisure and recreation, and community integration) and global FQoL. Likewise, t-tests were used to compare the outcome measures (attainment and satisfaction) within each of the nine family domains. Result Global attainment and satisfaction with FQOL-NDs was found to be significantly correlated with composite attainment and satisfaction from nine domains (r=.489, p<.001 and r=.536, p<.001, respectively). Attainment and satisfaction were positively correlated within the nine domains (ranging from r=.83 to r=-.69, p<.001). There was a significant difference between domain-level attainment and satisfaction ratings [t(299)=12.28, p<.001, h2=.34]: the mean level of satisfaction experienced (M=3.71, SD=0.49) was significantly higher than that of attainment (M=3.52, SD=0.49). Conclusion This study demonstrates that FQOL-NDs has good validity properties and it is a useful tool to establish FQOL profiles for family caregivers of people with NDs. 2021-01-01T00:00:00Z http://hdl.handle.net/10366/148280 [EN]Background: According to Alzheimer Europe (2019), it is estimated that in 2018, there were 8,885,101 people with dementia in Europe (EU-28), with a prevalence of 1.73%. In Portugal, it is estimated that this figure is 193,516, with a prevalence of 1.88%, surpassing the European trend, since it is expected to almost double the number of cases in 2050 (346,905), reflecting the significant increase of people over 70 years and, specifically over 85. The OECD’s “Health at a Glance 2020” report indicates that Alzheimer’s and other dementia accounted for 5%of all deaths in 2017. Thus, it becomes relevant to study themagnitude of this problem also at the local level. This study aims to identify and characterize people with dementia in a region of the inland region of Portugal. It is assumed as the first stage of a more comprehensive study on the quality of life of the person with dementia and his/her family, within the framework of the NEUROQUALYFAMProject (0541_NEURO_QUALYFAM_6_E). Method: This is a cross-sectional descriptive epidemiological study of people with dementia. The data, provided by health services, refer to the active diagnoses of the disease, according to the International Classification of Primary Health Care - ICPC-2 (P70 - Dementia) and do not allow to trace any of the individuals. Result: The total number of people with active diagnosis of Dementia (P70) was in 2019, around 1603 cases, with an increase of 363 cases between 2014 and 2019. The proportion of active diagnoses in the resident population was 1.13%,with higher values in women (0.80% versus 0.33% in men). Most active diagnoses (95.51%) are from people aged 65 years or older, also reflecting the results a higher proportion in the higher age groups, namely 25.02% in the 80–84-year-old group and 43.54% in the 85-year-old group. Conclusion: The identification and characterization of people with dementia, in the geographic area under study,willnowallow the development of the study of the quality of life of these people and their families so that it is possible to implement more specific and targeted strategies for this target population. 2021-12-31T00:00:00Z http://hdl.handle.net/10366/148279 Background: Dementia is one of the most important causes of dependencyworldwide. These patients require constant care. This care ismainly 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% arewomen, aged between 28 and 87, and do not work (63.8%). They aremainly 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. 2021-12-31T00:00:00Z http://hdl.handle.net/10366/148277 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 peoplewithND 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. 2021-12-31T00:00:00Z http://hdl.handle.net/10366/148276 Background: Dementia has reached epidemic proportions and become a huge Public Health problem. Alzheimer’s disease (AD) is the most common type of dementia. In Spain, more than 800,000 people suffer from AD (Spanish Society of Neurology-SEN). Age is the main risk marker for developing this disease. Its prevalence is three times higher in women than in men due to females’ higher life expectancy. The aim is to know the epidemiological profile and quantify the current scope of the ADand other dementias in the rural Spanish-Portuguese border area, one of the most depopulated and aging regions in Europe. Method: A cross-sectional descriptive study was designed to estimate the prevalence of persons diagnosed with an ICD-9-CM or ICD-10 code diagnosis of dementia in ten BasicHealth Areas of the cross-border rural area of province of Salamanca, Spain, during June-July 2020 (39,354 inhabitants). The cases were recorded from the Electronic Clinical Record of Primary Care (MEDORA) by the Regional Health Management of Castilla y León. Result: A total of 579 individuals suffer some type of dementia in the Spanish- Portuguese border region, with a predominance of females (70%) vs. males (30%), and an age range of 38 to 109 years (Figure_1). AD was diagnosed in 307(53%) persons and other dementias in 272(47%). Gender distribution of the diagnoses is different in women and men (p<0.001) (Table_1). The mean(±SD) age was 85.2±7.6 years for women and 82.5±8.7 years for men (p<0.001). The mean(±SD) age of Alzheimert’s patients was lower, 83.7±7.1 vs. 85.2±8.9 (p=0.031) (Figure_2). The global prevalence of dementia was 1.47 per 100 inhabitants (0.78% in AD vs. 0.69% in other dementias). The prevalence of dementia was 2.12% in females and 0.85% in males. Prevalence range in the ten Basic Health Areas: from 2.98 (La-Alberca) to 0.77 (Tamames) per 100 inhabitants. 26.4% of people with AD and other dementias in this region were institutionalized. Conclusion: The prevalence data obtained confirm that AD and other dementias must be considered a public health problem in the rural Spanish-Portuguese border region that represents a significant deterioration in the quality of life (QoL) in patients and their families. 2021-12-31T00:00:00Z http://hdl.handle.net/10366/148273 Introduction: Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view. Method: The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics. Results: The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs). Conclusions: These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs. 2021-11-01T00:00:00Z http://hdl.handle.net/10366/148272 Introduction: When neurodegenerative disease (ND) is diagnosed, the family’s quality of life (FQoL) changes drastically. Within the concept of FQoL, the supports they receive from others at the community level and from services is one of the most important issues. Nonetheless, studies available using a mixed-methods approach are still limited. Consequently, the objective was to study the domains of support from services and support from others (emotional and practical), through the application of a quantitative instrument and the conduction of focus groups. Method: Three hundred relatives of people with ND, recruited from Regional Health Management of Castille and 14 Leon (Spain) completed the instrument FQOLS–ND, a specific scale for measuring quality of life in families caring for people with a ND. The mean age of the sample is 62.4 years and the majority are females (70%). In addition, a focus group was carried out with 10 family members (70% females, mean age= 61.6) aiming at the analysis of the quality of life domains. Results: The domains support of others (emotional and practical) and support from services achieved low quantitative levels specially in terms of achievement (M emotional =3.30; SD emotional = 1.21; M practical = 3.09, SD practical = 1.26; M services = 2.83; SD services = 1.02;). In the focus group, the main topics mentioned as negatively affecting the FQoL were social isolation, access and correct follow-up in specialized care services, lack of information on the diagnosis and progression of ND and on the needs of the person, and lack of empathy of professionals and others. Conclusions: ND negatively and significantly affects the family as a whole. Despite this, the emotional and practical support they receive from both other community members and professionals and services is still very insufficient. Therefore, it is important to raise awareness of the needs of this population and to carry out transformations in the attention provided. 2021-11-01T00:00:00Z http://hdl.handle.net/10366/145556 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. 2020-11-04T00:00:00Z http://hdl.handle.net/10366/145555 Background: Neurodegenerative diseases (ND) are chronic pathologies that generate great limitations and disabilities in the person and other effects on the Family Quality of Life (FQoL). FQoL is a multidimensional concept that includes health of the family, financial well-being, family relationships, informal support, support from care services, the influence of values, leisure and recreation, and community interaction. Several studies have demonstrated the impact that the absence of supports has on the FQoL. Objective: This research aims to explore, from the perspective of social service professionals, to what extent the service supports available to people with ND and their families in the Spain-Portugal crossborder area are adequate and sufficient to contribute to the improvement of the FQoL. Method: Qualitative methodology has been implemented. Specifically, a focus group has been conducted. Seven public social service professionals (five social workers and 2 community animators) working in the cross-border area studied participated in it. With the support of the Atlas.ti software and following a deductive coding model, the data obtained were systematically coded and interpreted by grouping the information into categories. Main results: Initial research results suggest that 1) most of the support is exclusively aimed at the care of the sick person, even if it indirectly contributes to the improvement of the FQoL; 2) there are adequate support services for the improvement of the FQoL, but they are very insufficient; 3) formal support in the rural environment is limited by the characteristics of the environment. Conclusion: Initial results suggest that the lack of access and inadequacy of support services in rural areas has an impact on the FQoL. 2020-11-04T00:00:00Z http://hdl.handle.net/10366/145511 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. 2020-12-07T00:00:00Z http://hdl.handle.net/10366/145510 Background: One of the main objectives of NEUROQUALYFAM Project is to assess the quality of life and the needs of support of families of people with a neurodegerative disease (ND) in Spain. For this purpose, The Family Quality of Life Survey‐Adapted for Main Caregivers of Persons with Dementia (FQoLS; DiZazzo‐Miller & Samuel, 2011) has been translated and adapted to the Spanish context. Method: The “International Test Commission guidelines for test translation and adaptation” were taken into account, thus considering the following phases: 1) Two initial and independent translations of FQoLS; 2) Review and synthesis of the translations; 3) Focus groups with families of people with a ND, as well as with health, social and third sector professionals, in order to assess the relevance, clarity and appropriateness of items; 4) Synthesis and agreement by a committee of experts; 5) Backtranslation and comparison with the original items; 6) Pilot study of the consensual version with a sample of families with an individual with a ND. Result: After the translation and adaptation process, the comprehension and appropriateness of items and response options in the preliminary version were verified. The application of the final version of the instrument and the assessment of its psychometric properties will be conducted in a subsequent phase of the study. Conclusion: Preliminary results indicate that the instrument has been successfully translated and adapted to the Spanish context. Moreover, this questionnaire seems to be a useful tool for assessing the quality of life of families of patients with ND as well as for designing intervention strategies aimed to optimize support resources and improve families’ health and wellbeing outcomes. Reference: DiZazzo‐Miller, R., Samuel, P.S. (2011). Family Quality of Life Survey: Main Caregivers of Persons with Dementia. Detroit, MI, USA: Wayne State University. 2020-12-07T00:00:00Z http://hdl.handle.net/10366/145509 Background: Neurodegenerative diseases (ND) have a great impact on both patients and their relatives, since the latter play an essential role in the care process. Consequently, the families require support to perform this function with higher levels of wellbeing. The objective of the NEUROQUALYFAM project (Interreg V‐A Spain‐Portugal, POCTEP) is to analyze the quality of life of families of people with ND, to identify their needs and to plan family‐centered support resources in order to offer high‐quality social health services for people with ND and their families. Method: The study sample will consist of 300 families from the Spanish‐Portuguese cross‐border area. The Family Quality of Life Survey ‐ Dementia (FQoLS) will be translated, adapted and validated (DiZazzo‐Miller & Samuel, 2011) to assess their quality of life. Focus groups with families and professionals from health, social services and the third sector will be conducted to identify needs and support resources. The “section 2‐Support and Services” of the validated Spanish version of the Beach Center Family Quality of Life Scale (Verdugo, Rodríguez and Sainz, 2012) will be adapted for families of people with ND to identify the types of support needed and to what extent they are provided. A confirmatory factor analysis will be conducted to examine the validity of the construct FQoLS‐ ND. A top‐down content analysis will be undertaken for qualitative data. Result: The project will provide: (a) a procedure to evaluate the quality of life of families of people with ND; (b) the identification and mapping of unmet support needs regarding the health and social system; (c) the planning of a family‐centered support system for the improvement of health and wellbeing outcomes, and (d) the design of a comprehensive ICT platform of support resources that enhances training, information exchange and collaborative networks between and among families and professionals. Conclusion: The project NEUROQUALYFAM provides a research and intervention model that might be applied in other regions and countries. It strengthens cooperation between the institutions (health and social services, third sector) to improve the quality of family life and optimize support resources for family caregivers. 2020-12-07T00:00:00Z http://hdl.handle.net/10366/145508 [EN]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. 2020-11-04T00:00:00Z