Every three seconds, a new case of dementia is diagnosed somewhere in the world. The term encompasses a group of neurodegenerative diseases that have no cure and which affect memory, cognitive abilities and behavior, and includes Alzheimer's disease. According to World Health Organization (WHO) data, it is estimated that dementia affects about 50 million people around the world. With increasing life expectancy and an aging population, this figure is expected to increase to 75 million by 2030 and 132 million by 2050.
Dementias cause disability and dependence, they have an enormous impact on those who suffer them and their caregivers, and raise considerable challenges for the sustainability of social protection systems. Although a number of drug therapies are available for treating the symptoms, psychosocial interventions help slow down the rate of progression and counteract the aspects that impair the quality of life of the sufferers and their caregivers. Through the eHealth Center, the Universitat Oberta de Catalunya (UOC) has launched a tool, called PSICODEM, that enables the best intervention to be chosen for each patient, depending on the dementia's severity and the aspects it is wished to address.
This tool is a mobile app — although it also has a website version — both for professionals and for the family members caring for someone with dementia. The app enables them to choose between different psychosocial interventions depending on the severity of the dementia and other comorbidities (each additional disorder or disease), such as anxiety, depression or aggressiveness, and also provides information about the level of scientific evidence for each one.
"There was uncertainty about which interventions were more effective for people with dementia and we wanted to help shed some light on this," said Marta Aymerich, who is a researcher at the eHealth Lab, as are the app's co-creators, Carme Carrion and Noemí Robles.
Aymerich said that specialized professionals can find the information about the level of scientific evidence particularly useful; the non-specialized professional may find it useful for choosing the right psychotherapy for the patient, and family caregivers can use it to find out about the interventions that are currently available – from reminiscence therapies to music therapy – and discuss them with their health professional.
PSICODEM has already been tested in a web format, assessing its ease of use with primary care and specialized care professionals and studying its scientific validity with neurologists and neuropsychologists. The tests for validating the app were carried out in a primary care center, a private clinic and a public hospital with 119 dementia patients with different levels of severity and 10 health professionals.
To test the tool, we worked with primary healthcare professionals in Catalonia, and with specialized professionals at the Institut d'Assistència Sanitària (Institute of Healthcare) and the Clínica de Girona."
Marta Aymerich, Researcher, eHealth Lab
A decade of scientific research
This mobile app is the result of more than a decade of research. The first seeds were sown while Aymerich was working at the Agency for Health Quality and Assessment of Catalonia (AQuAS), conducting a systematic review of the scientific evidence available at that time on the use and effectiveness of psychosocial interventions for the treatment of dementias.
Subsequently, together with researchers from the University of Girona (UdG), the Catalan Health Institute and Pompeu Fabra University (UPF), they received funding for two years (2010 and 2011) from the Carlos III Health Institute to design a digital tool. Finally, the UOC's eHealth Center took a step further and developed an app that would enable all stakeholders to know which intervention was best for each dementia patient.
Now that the app is online, the researchers propose updating the body of scientific evidence for each intervention as new evidence emerges about their effectiveness. They also plan to carry out dissemination actions to generate awareness of the tool and increase its use, providing professionals and caregivers alike with a tool that will help them make the best decision for each person. PSICODEM is available in English, Catalan and Spanish.