http://hdl.handle.net/10366/145469 2026-05-01T05:15:57Z http://hdl.handle.net/10366/163649 [EN] Background: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. Methods: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. Results: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. Conclusions: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families. 2022-05-07T00:00:00Z 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/10366/148411 Do total de doenças neurodegenerativas (n=2332), 1,87% da população da área de abrangência da Unidade Local de Saúde do Nordeste, a maioria corresponde a diagnósticos ativos de Demência (n=1595). A doença de Parkinson surge em segundo lugar (n=659) e a Esclerose Múltipla (n=78) com menor número os diagnósticos ativos. Em termos de distribuição são os municípios com maior número de habitantes, Bragança, Mirandela e Macedo de Cavaleiros, que apresentam mais diagnósticos ativos das três doenças em análise. Realça-se, no entanto, o facto de se verificarem dois municípios com menor população (Miranda do Douro e Freixo de Espada à Cinta) com elevado número de demências. Em todos os municípios a prevalência é maior no sexo feminino e nos grupos etário de maior idade com exceção da Esclerose Múltipla em que a prevalência é maior na idade ativa. Nesta doença, observa-se maior número de diagnósticos ativos no sexo masculino e no grupo etário compreendido ente 30-39 e 50-54 anos de idade. A distribuição por sexo inverte-se entre os 40-59 e 65-69 anos de idade. 2022-01-01T00:00:00Z 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/10366/148262 2021-01-01T00:00:00Z http://hdl.handle.net/10366/148260 2021-01-01T00:00:00Z http://hdl.handle.net/10366/148259 2021-01-01T00:00:00Z http://hdl.handle.net/10366/147697 [ES]En el marco del modelo de calidad de vida familiar, ha surgido la necesidad del desarrollo de instrumentos que sirvan de base para evaluar la efectividad de las intervenciones. Por tanto, el desarrollo de una medida de la calidad de vida familiar es pertinente para estimar las posibles intervenciones en las familias cuidadoras de personas con enfermedades neurodegenerativas, así como identificar las necesidades y los recursos de apoyo para la persona afectada y su familia. El grupo NEUROQUALYFAM (proyecto de cooperación transfronteriza España-Portugal con el apoyo de la Unión Europea–POCTEP) ha realizado un proceso de traducción, adaptación y validación de la FQOLS–Demencia (Samuel & DiZazzo-Miller, 2019) al español para poder evaluar la calidad de vida de las familias de personas con enfermedades neurodegenerativas. Este proceso se llevó a cabo siguiendo las pautas y recomendaciones propuestas por la International Testing Commission (ITC). Este manual presenta la versión abreviada del instrumento para su uso por profesionales de los servicios sociales y de la salud con el fin de que sirva como herramienta para mejorar los resultados de la calidad de vida familiar, implementando prácticas basadas en evidencias, y orientado hacia la planificación de las necesidades de servicios de apoyo de las familias cuidadoras de personas con enfermedades neurodegenerativas. 2021-01-01T00:00:00Z http://hdl.handle.net/10366/147016 [PO]O projeto Neuroqualyfam: Doenças Neurodegenerativas e Qualidade de Vida, tem como objetivo reforçar a cooperação entre as instituições de investigação ao nível do estudo das doenças neurodegenerativas, para melhorar a qualidade de vida familiar e otimizar os recursos de apoio e assistência às famílias cuidadoras, no âmbito geográfico da zona transfronteiriça de Castela e Leão, o Centro e o Norte de Portugal. Os resultados esperados deste projeto visam a criação de um plano de ação centrado nas famílias cuidadoras, bem como, a implementação da primeira plataforma TIC que permita a avaliação das necessidades familiares e os recursos de apoio que favoreçam a capacitação das próprias famílias. 2020-10-01T00:00:00Z http://hdl.handle.net/10366/146840 [PO]As doenças neurodegenerativas assumem-se como uma das causas principais de incapacidade e dependência no mundo, o que tem um forte impacto na saúde e bem-estar físico, psicológico e social da pessoa portadora destas doenças e da sua família. As três principais doenças neurodegenerativas são Alzheimer e outras demências, Parkinson e Esclerose Múltipla. As duas primeiras estão relacionadas com a idade, o que faz com que a sua prevalência seja muito elevada, justificando-se desta forma o desenvolvimento de projetos nesta área, em regiões envelhecidas, para aumentar a qualidade de vida das famílias com membros portadores destas patologias e atrasar o mais possível a evolução da doença e as sequelas para a pessoa doente. 2021-06-01T00:00:00Z