5 July 2023

ICT platform of services and resources for social health professionals and families of people with Neurodegenerative Diseases

Keywords: Active and Healthy Ageing, Alarms/Reminders, Alzheimer’s Disease, Assisted Living, Neurological conditions

Montse Fernández

Owner

NEUROQUALYFAM GROUP. Principal Investigator: Marta Badia Corbella / Eva González Ortega

Link

Type

Digital solution and service (e.g. application/digital health portal/platform/AI based system/etc.)

Short description

What is the practice about?

The NEUROQUALYFAM project was developed in the Cooperation Area of Castilla y León and North-Central Portugal. This territory is characterized by a predominantly rural character and the progressive loss and aging of population. One of the effects of this aging is the high prevalence of neurodegenerative diseases such as Alzheimer’s, Parkinson’s and other dementias. These diseases are one of the main causes of disability and dependency in these regions and have a detrimental impact on the biopsychosocial well-being of both the patients and their families. They may become, in addition to a health problem, a factor of economic, labor and social pressure and exclusion.
Usually, the family plays the main role in caring for patients. However, there is no comprehensive plan in our countries to support and meet the needs of families so that they can achieve a satisfactory quality of life. Moreover, no analysis has been conducted yet of the set of resources that are available for families from public and private organizations at the national, regional and local level.
Consequently, the main OBJECTIVE of the NEUROQUALYFAM project was to improve the quality of life of family caregivers of people with neurodegenerative diseases 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.
The main specific objectives and outcomes of the project were three:
– First, we evaluated the quality of life of families of people with neurodegenerative diseases and identified their support needs. The project created an evaluation procedure of the quality of life of families of people with Neurodegenerative Diseases. This procedure was supported by empirical evidence and disseminated among a wide range of institutions dedicated to improving the quality of life of patients and their families.
– Second, we proposed a resource guide for people with neurodegenerative diseases and their families, considering the needs map previously identified. The project provided a specific portfolio of resources, services and benefits for families, according to the Quality of Family Life model. This portfolio was designed to constitute a useful tool for both families and social health professionals.
– Third, we designed and developed an online platform that includes the portfolio of specific services for family members of people with these diseases. The project provided an ICT platform of the portfolio of specific services that is user-friendly and accessible from families’ environment. It offers diverse resources and services for families (such as training, family interaction groups, consulting and advisory services, etc.), as well as for health and social service professionals, so that they can share knowledge and improve communication.
In conclusion, the main aim of the NEUROQUALYFAM project was to address the needs of families of people with neurodegenerative diseases by creating and planning support resources that are innovative, high-quality and family-centered, and by promoting a collaborative relationship between family members and professionals.

When was it developed and by whom?

The NEUROQUALYFAM Project was funded by the European Regional Development Fund through the program INTERREG Spain – Portugal (POCTEP) 2014 – 2020. It had a duration of three years, beginning in January 2019 and ending in December 2021. NEUROQUALYFAM is the acronym for “Neurodegenerative Diseases and Family Quality of Life”, which was the main focus of interest of the project.

The partnership that developed the project was comprised of three research teams, two public entities and two organizations of the third sector.
– One of the research teams is located in Spain and the other two in Portugal. Concretely, they are: the University of Salamanca (which plays the coordination role of the project and the diverse partners); the Polytechnic Institute of Bragança (School of Health); and the Polytechnic of Guarda (School of Health).
– The two participating public entities are the Provincial Council of Salamanca (at a local level) and the Regional Health Management of Castilla y León (at a regional level), both in Spain.
Finally, the two partners that are representative of the third sector are: ADM Estrela – Associação Social e Desenvolvimento (in Portugal); and the Cluster SIVI, in Spain. This cluster is made up of diverse institutions involved in the integrated care provision to people in dependency situations and their families. It aims to improve their quality of life by applying innovative solutions with a strong technological component.

• What is the intended audience / target group?
Social and health professionals and people with Neurodegenerative Diseases and their families.
The project generated a support resource online platform to be used by both families and social health professionals, thus allowing progress in the application of technologies to the challenges posed by Neurodegenerative Diseases.

• How should the practice be used / how does it function?
The Platform can be used by social-health professionals to make a diagnosis of the Quality of Life of the families of people with neurodegenerative diseases, in order to guide each family individually in the search for the support services and resources they need to improve their quality of life levels.
It can also be useful for people with Neurodegenerative disease and their families to learn about the disease and the care needed by the patient, about the support services and resources available for the patient and its family and how to apply for them, and about the specific services available in their area and the address to access them.

• Who might be interested in learning about or wish to use / apply it?
Social-health professionals and patients and families from other areas and/or with other diseases that also result in some degree of dependence and/or disability.

• What are the conditions for using / applying it (e.g., free, license agreement, etc.)?
It is free

Evidence

No impact-related evidence is currently available

We have not collected evidence so far, but we hope that this platform will have an impact on the physical and psychological health of family caregivers by reducing their levels of burden, anxiety and depression, and increasing their levels of family quality of life in its different dimensions, which will lead to a lower use of the health care system. On the other hand, the information offered about the disease, caregiving and the services and resources available will lead to the empowerment of the family caregiver.

Maturity

The idea has been formulated and/or research and experiments are underway to test a “proof of concept”

The Platform has been designed and developed by implementing the tools for assessing the quality of family life and the needs for resources and support services. It has also been piloted to verify its correct functioning. This platform will be monitored and evaluated attending to its accessibility, usability, satisfaction of users, impact on society, etc. among others in the target population.

Countries

Portugal
Spain

This project is developed in the Cooperation Area of Castilla y León (Salamanca) and North-Central Portugal (Guarda y Bragança).

Geographical scope

European

Cross-border area of Spain and Portugal: this territory is characterized by a predominantly rural character and the progressive loss and aging of the population. This practice could be applied in any other European country, mainly in rural areas with high aging rates.

Language(s)

Spanish and Portuguese

Comment

Submitted in other database or repository of digital health resources that is publicly available

This practice has been disseminated through the partners’ websites. For example: http://www.lasalina.es/bienestarsocial/noticias/Neuroqualifam/Neuroqualifam.html https://clustersivi.org/2022/03/23/neuroqualyfam-culmina-su-investigacion-sobre-la-calidad-de-vida-de-las-personas-con-enfermedades-neurodegenerativas/

Additional information

Relations

to clinicians / care practitioners

Clinical team care planning and collaboration tools (e.g. digital shared care plan)

The project has generated a support resource online platform to be used by both families and social health professionals. • The professionals will have an assessment of the family’s quality of life in different dimensions (physical, economic, emotional well-being, emotional and practical supports, services, social relationships…) as well as an assessment of the resources and support services they need. This will allow them to propose an individualized support plan according to the needs of each family. • The family will have information about the disease, care, and support services and resources, how to request them and where they are located in their area. This will help them to cope with the care. These two aspects will allow the prevention of physical and psychological diseases derived from the care of the person with neurodegenerative disease.

to patients / citizens

Home care

The ICT platform includes a section with information from the SACYL Patient Classroom on the care of dependent people and people with dementia, including aspects such as feeding, hygiene, medication administration, fall prevention, communication and relationship, difficult behaviors, including a video on the bedridden patient’s toilet.

Primary target patient group (age)

Adults (25-64), Older adults (65+)

Addressed prevention area(s)

Education, Mental health

The online platform provides families with information on neurodegenerative diseases and patient care, as well as the resources and support services to which they are entitled and the steps to apply for benefits and services. All this will contribute to empowering the family and improving their physical and mental health.

Use case and care pathway positioning

Prevention and wellness, Integrated care pathways

The Provincial Council of Salamanca (at a local level) and the Regional Health Management of Castilla y León (at a regional level), both in Spain, have participated in the project. Also, the possibility of presenting the Project to the families through the Health Centers and the Social Action Centers of the Spanish-Portuguese cross border rural areas has been raised.