ALADDIN: A wish come true for dementia patients

An innovative eHealth system to support elderly dementia patients and their carers in managing the condition at home is being piloted by a multi-disciplinary research group headed up by the Institute of Communication and Computer Systems in Athens. Project Manager Dr Maria Haritou and Technical Manager Dr Yuri Glickman hope ALADDIN could offer an affordable solution for patients, carers and health providers in the future..

Dementia is one of the most debilitating, stressful and frightening conditions that patients and their carers can experience, manifesting itself through memory loss, impaired cognition, behavioural problems, loss of orientation in time and space and at later stages even hallucinations.

Until now, sufferers of mild to moderate dementia struggled to cope at home with often just an annual check by the doctor. ALADDIN aims to provide an integrated online clinical, educational and social support network for mild to moderate dementia sufferers and their carers, to prolong the time the patient can remain at home.

“Alongside the risks to the patient, dementia places a huge burden on the carer at home, who is often an equally elderly spouse,” explains Project Manager and Senior Research Scientist Dr Maria Haritou. “As the patient’s mental faculties deteriorate, the carer often becomes increasingly anxious that they are not caring for them in the right way, which can cause the carers themselves to develop depression.”

Click here to access the project website.

ALADDIN is essentially an application including a simplified online browser, installed on a touch-screen PC in the home. The carer (or patient if they are able) inputs basic data, such as blood pressure and weight, and completes questionnaires about the patient’s condition, as frequently as the clinician requires. They also complete a less-frequent set of questions about their own condition.

The clinician can then monitor the patient and carer remotely, assess any risks and advise accordingly. An auto-warning system notifies the clinician by a special message in a web portal, email or SMS if there are dramatic changes in the patient’s or carer’s responses over a given period, so they can take appropriate action.As well as risk assessment, the browser provides access to an educational section, containing brain-training games, exercises and information about dementia. There’ s also a social media forum for patients and carers to share experiences and socialise with others on the network.

“The key to the system is simplicity,” says Dr Haritou. “Many elderly patients and carers are not computer literate and we don’t want to place an added burden on them with a complicated or confusing computer application. So it’s designed to be as intuitive, as user-friendly, as possible, and to actually make their lives easier. The questionnaire, for example, has a simplified range of recognised clinical questions, but instead of having to go to their doctor and fill the same questions out every week, the patient or carer can do it in the comfort of their own home.”

For their part, the clinician is linked into the system via a web portal, where they can assign tasks for the day to the carer and manage profiles of carers and patients. A content management system allows the clinician to hand-pick educational videos for their patients and even modify the questionnaire to suit their individual needs. It also allows information to be translated from the default English, should a patient or carer require it in a different language. The patient’s data input and responses are also linked to the hospital’s central records system to automatically update the patient’s medical history.

“The brief was to design a user-friendly system that’s affordable and makes use of familiar technology where possible,” says Dr Yuri Glickman, ALADDIN’s technical manager, based at the Fraunhofer Institute for Open Communication Systems (FOKUS) in Berlin.

“We looked at various options but many were ruled out for being too complex or expensive. So now we have a simple ALADDIN application on a 30cm touch-screen that can also be operated by mouse and keyboard if preferred. It works via the Windows operating system – the most common in the world – but it doesn’t have to be the latest version of Windows.” The only other devices the patient needs to use are familiar objects like a traditional blood pressure armband, for example, or a pedometer that connects via USB to their computer and automatically uploads data about their walking patterns – a good indication of changes in behaviour.”

Dr Glickman also highlights another challenge with such eHealth systems. “It’s about getting the balance right between accurate clinical analysis, privacy and usability,” he says. “So the system requires a username and password for the carer or patient but, following feedback from users, patients can enter the cognitive games area without this authorisation. Carer and patient have separate social network areas too, so each can speak freely about their concerns away from the other. The system doesn’t get too demanding on the carer for information either – even if they miss a day – but it does make sure it is filled in correctly – and it does notify the clinician if there are perceived changes in behaviour or physical condition.”

The ALADDIN project has been made possible through a multi-disciplinary collaboration of eight European partners across Greece Germany, Italy, Spain and the UK, drawn from research institutes and medical companies.

A pilot project of the system began in May this year, with around 40 patients across Greece, Spain and the UK, measured against a control group of non-ALADDIN subjects. “It’s too early for results yet, but we hope to evaluate the pilot project by the end of this year,” says Dr Haritou.

So what are Dr Haritou’s hopes for the evaluation? “We’ll be looking to see, from patient, carer and clinician feedback, whether ALADDIN is user friendly, affordable, beneficial and clinically safe and effective,” she says. “If it’s not accurate then clinicians won’t use it - and if it doesn’t reassure the carer that the patient is being taken care of too, then they won’t use it either. But if it proves successful, I hope it can be rolled out across health systems in Europe.”

Dr Glickman has similar hopes for the project. “As someone who helped to design the system, I’m looking forward to the usability element.

“Because if it feels too much like hard work, the patients and carers won’t adopt it. But if the evaluation proves that we have an accurate, accessible system that’s financially sustainable for patients and health providers, then we have taken an important step forward in healthcare – especially as the system is designed to be adaptable for other informational content and can be used with mobile devices such as tablet devices or with a standard computer. We hope that this could even become a model for managing other conditions remotely too.”

Published: Tuesday, 15th November 2011