Chronic illnesses take a huge toll on the lives of European citizens, even though much is known about how to prevent chronic disease, and how to delay or avoid many related complications. Systematic and comprehensive health care can benefit both chronically ill patients and providers by enhancing their encounters, improving clinical outcomes and reducing health care costs. An effective tool in this approach to care is information technology. Information systems generally offer a number of benefits in health care, including higher quality of personalised healthcare and more efficient information processing. A specific area of increasing significance as regards to chronic conditions is that of patients with cognitive disorders, which draw increasing attention as the society gradually ages. Alzheimer’s disease, the most common form of cortical dementia, is a degenerative brain disease for which there is no known cure but only a symptomatic therapy. In its most common form, it afflicts individuals over 65 years old, although a less prevalent, familial early-onset form also exists. Multi-infarct dementia, also known as vascular dementia, is the second most common form of dementia after Alzheimer disease (AD) in older adults. Experts estimate that 26.6 million people worldwide had Alzheimer in 2006, which would multiply by four by 2050. The World Health Organisation estimates that, globally, the total disability adjusted life years (DALY) for AD and other dementias exceeded eleven million in 2005, with a projected 3.4% annual increase. Due to the progressive and degenerative nature of the disease, management of Alzheimer’s and other dementia patients is essential.
The role of the main caregiver is often taken by the spouse or a close relative. Caregivers may themselves suffer from stress, over-work, depression, and being physically hit or struck. Due to the progressive and degenerative nature of the disease, management of Alzheimer’s and other dementia patients is essential. Of particular importance is the management of the behavioural and psychological symptoms of dementia that often are the main cause of distress and anxiety for the caregivers as well.
The aim of the project is to utilise state-of-the-art ICT in order to develop an integrated solution for the self-management of dementia patients, and develop innovative tools to support this procedure. This solution can be conceived as an integrated platform enabling distant monitoring of patient status and facilitating personalised intervention and adaptive care.
The project aims at:
- Supporting maintaining health and functional capability, through the risk assessment and the early detection of deterioration symptoms of the patients and distress signs of their carers;
- Providing means for self-care and self-management of chronic conditions, through the development of social networking as well as educational tools;
- Providing added value to the individual, leveraging his/her quality of life, and supporting the moral and mental upgrade of both patients and carers;
- Enhancing the home-as-care environment through the provision of user-friendly ICT tools for frequent, unobtrusive monitoring.
Expected results and impact:
The Aladdin project intends to make the integration of existing technological solutions progress, in order to address a field that, even though induces a significant burden both socially and economically, has not been successfully coped with. This field includes both patients suffering from dementia as well as their carers who run the risk of developing depression symptoms themselves and must face social withdrawal and heavy private additional costs. It aims to develop and validate an innovative model/methodology for health promotion, risk assessment, prevention and sustainable impact of self-management tools and education for patients suffering from dementia and their care givers; it aims to support (or at least delay as much as possible) the non-institutionalisation of such patients by providing them and their carers with the necessary tools to efficiently manage their disease and formulate an efficient home care strategy, so that healthcare systems and health institutions become key players in this procedure.
The main idea of the proposed project lies behind three simple processes:
- Development and validation of self-management tools for an improved and sustained quality of self-management of dementia;
- Development and validation of a methodology for risk assessment and analysis of adverse events related to home-based treated patients suffering from dementia as well as their care-givers, aiming at the formulation of a home care strategy;
- Development and validation of tools for social networking between patients suffering from dementia as well as between their carers, thus enabling the exchanging of experiences with persons in similar situations.