Imagine not being able to trust yourself. Imagine suddenly forgetting where you are, what you were talking about, or the fact that you recently turned on the stove.
This is the reality for many patients diagnosed with cognitive impairment or dementia.
– This disease creates lack of self-confidence. When you realize that you can´t trust your memory anymore it often leads to less social interaction, isolation and depression, Monika Jurkeviciute, PhD student at Chalmers, says.
Together with Patrik Alexandersson, director for Centre for Healthcare Improvement at Chalmers, she has spent the last years working with the large EU-project DECI. The aim: to improve the ability of patients and their families to maintain a good life.
– We need to help these individuals to stay part of society for as long as possible, and increase their control of the disease with non-invasive tools, Jurkeviciute says.
– We want to help the patients stay independent longer, Alexandersson says. We hope to prolong the time they can stay in their home, avoiding hospitalization or having to move to a dementia home.
IT platform and new care solutions
DECI is unique in its scale. Over 600 patients in four countries participate in the project, which includes an IT platform for physical and cognitive training, an activity monitoring device and innovative organizational solutions for the care.
The digital tools are simple and effective. The patient wears a watch that monitors activities, counts steps and detects time spent inside and outside the home. In addition, the patient has access to two web-based programs, offering exercises for cognitive stimulation and video instructions of physical training activities.
– Some of these patients would never have exercised if it wasn´t for these digital tools. Also, they make the patients, the families and the caregivers more informed, and create a good platform for encouragement and fact-based discussions on the patients´ activities, Jurkeviciute says.
Chalmers researchers Monika Jurkeviciute and Patrik Alexandersson hope the results from the DECI-project can help patients affected by cognitive impairment to stay independent longer.
"We need to help these individuals to stay part of society for as long as possible, and increase their control of the disease"
Monika Jurkeviciute, Chalmers
New ways to organize care is also an important part of the project. Patients participating in the intervention get a case manager assigned to them, handling all contacts necessary in the patient care process.
– These patients pass through a complex healthcare system on different levels. Therefore, someone coordinating the care is important, Alexandersson says.
In the Swedish site, connected to Skaraborgs sjukhus, another pro-active approach is used in the care: network-based mobile teams, visiting the patients in their home.
– The meeting in the home is important, Alexandersson says. It demolishes power structures and makes the dialogue with the patients better. Supporting the patients in their daily life is a difficult challenge, and it´s even harder to succeed in a hospital environment.
Evert Larsson, 84, is one of the patients in the project who values the care visits in his home. He suffers from mild cognitive impairment, and signed up immediately when he saw the newspaper ad for the study.
– This has been good. I thought I would have to go somewhere to meet the doctor, so this was very nice and interesting. It always feels safer to be in your home, Evert Larsson says.
Hope to reduce hospitalization
The project will be concluded in the summer of 2018. Monika Jurkeviciute and Patrik Alexandersson believe it can have an impact on how hospitals organize their care, and hope it will reduce hospitalization, improve patient involvement and create better contact between caregivers and patients.
Monika Jurkeviciute wishes for the patients to feel that they are more in control of their situation.
– I think this has a potential to become a regular way of treating these patients, working with them and offering a program instead of just handing out a leaflet, she says.
Patrik Alexandersson points out that this patient group hasn´t been very prioritized. Perhaps, the DECI-project may help to change this.
– I hope this project will stress the importance of dealing with the huge social problem of cognitive impairment, and provide arguments to prioritize these patients, he says.
Text: Ulrika Ernström
FACTS, RESEARCH AND MORE INFORMATION
- The project aims to improve the ability of dementia and cognitive impairment and their families to maintain a good life - with help of innovative IT solutions and new ways of organizing care.
- DECI is partly led by CHI, Centre for Healthcare Improvement at Chalmers, and involves over 600 patients in four countries. For more information, contact Patrik Alexandersson, CHI at email@example.com
- DECI will go on between 2015-2018 and besides CHI the following partners are involved:
-Condazione Politecnico di Milano (Italy)
-ConSoft Sistemi SpA (Italy);
-Fondazione Don Carlo Gnocchi Onlus (Italy)
-Västra Götaland, Skaraborg Hospital (Sweden)
-Servicio Madrileño de Salud - Hospital Universitario the Getafe (Spain)
-Maccabi Healthcare Services (Israel)
-Roessingh Research and Development (Netherlands)