Enhancing family quality-of-life outcomes: The NEUROQUALYFAM project

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

Spanish translation and adaptation of a family quality-of-life survey for families of people with neurodegenerative disease

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

Review and analysis of the Spanish regulations on health and social care of people with neurodegenerative diseases and their families

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

Informe epidemiológico de las enfermedades neurodegenerativos en la zona rural transfronteriza de la provincia de Salamanca

[ES]El total de personas con enfermedades neurodegenerativas diagnosticada s (y registradas en el CMBD) en la Zona Rural Transfronteriza de la provincia de Salamanca asciende a 987. Teniendo en cuenta la población total con TSI en la zona (39.354 habitantes), este dato representa una prevalencia de las nfermedades neurodegenerativas en la población rural transfronteriza de 2,51% (Tabla 2), superior a la prevalencia global de España (2,08%

Active diagnostics of dementia in the inland region of Portugal

[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

Family quality of life in neurodegenerative diseases: exploring needs and supports in the cross-border area Spain-Portugal

[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

Escala de Qualidade de Vida Familiar. Pessoas portadoras de doenças neurodegenerativas

[PO]A Escala de Qualidade de Vida Familiar (Escala FQOL) é um instrumento centrado na Qualidade de vida das famílias que tenham um ou mais membros com doenças neurodegenerativas. É uma forma de abordar o grau em que a qualidade de vida da família é agradável, significativa e apoiada por todos os tipos de recursos que são importantes para os membros da família, assim como as dificuldades que as famílias enfrentam. A Escala FQOL está construída para ter duas utilizações. Em primeiro lugar, pode ser útil para os profissionais e os membros da família como parte de uma avaliação global das necessidades de apoio e de desenho do programa de intervenção. Em segundo lugar, pode ser utilizada como instrumento para descrever e medir a qualidade de vida familiar, dentro das limitações da sua conceptualização, para fins de investigação ou de avaliação

Epidemiological impact of Alzheimer’s disease and other dementias in the Spanish-Portuguese border region

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

Exploratory study of the adequacy and sufficiency of support for families with a member with neurodegenerative disease

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

Social services for neurodegenerative patients and their families

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