Abstract
This chapter provides an overview of the various aspects involved in the development of a home care system for the management of dementia, based on the experience of ALADDIN implementation. The ALADDIN platform aims to provide a trustworthy and reliable solution supporting patients and their informal carers in the management of the disease from home. Based on a set of monitoring parameters and measuring scales feeding a reconfigurable Event Detection mechanism used for Risk Assessment and Analysis, the system aims to early detect symptoms predicting decline, avoid emergencies and secondary effects and thus prolong the period that patients can remain safely cared at home. Informal carers are also monitored by the system whereas additional features supporting networking, education and cognitive stimulation are also integrated along with decision support tools for the clinicians. It is an open, secure, interoperable, integrated IT-solution designed according to Service Oriented Architecture principles and credible methodologies for patient follow-up, risk detection and adaptive care.
TopIntroduction
Chronic illnesses impose a great burden on the lives of citizens worldwide. In modern health-care, decentralization, dehospitalization and self management of diseases at home are crucial factors for improving the every-day life of chronic patients and the people close to them. Telemedicine and Home Care systems have been developed, making significant advances in healthcare by decentralizing it, offering innovative services to patients and doctors, and making medical practice more efficient and cost-effective in a variety of medical disciplines. However, people in general tend to dislike monitoring of their daily activities, so the challenge for modern home care solutions is to implement systems that provide clinicians with adequate and concise information on their patients’ health status while at the same time be as unobtrusive as possible and easy to use. Moreover, such systems must ensure that they produce high impact warnings on the patient’s status, only when these warnings are truly necessary, in order to relieve clinicians from unnecessary workload and become a real tool for decision making and efficient patient follow-up. Cost considerations are also very important and must be taken into account when designing homecare systems in order to produce solutions that are affordable by the users. Finally, open issues also exist with regard to strategic design aspects and care guidelines. For example, the implementation of fully automated systems vs solutions that allow an increased level of self-involvement to the disease management process is an open question as regards the benefits to the users.
Due consideration of the above aspects is necessary when developing home care systems for chronic patients, but can become more demanding and difficult when it comes to older patients with mental disorders (Archer, Keshavjee, Demers, & Lee, 2014). The development of home care systems for this patient group has not advanced as much as those for other chronic patients, even though mental disorders induce a significant burden on the lives of people all over the world, and they are directly associated with increased costs for national healthcare systems. Moreover, special attention is required for the informal carers of patients with mental disorders, as they run the risk of developing depression symptoms themselves and often face social withdrawal and heavy additional private costs (Tremont & Davis, 2014).
Key Terms in this Chapter
Quality of Life: WHO defines “Quality of Life” as individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment.
Chronic Disease: A human health condition or disease that is persistent or otherwise long-lasting in its effects, or a disease that comes with time.
Informal Care: informal care involves the support of family, friends, colleagues and local, residential community, often from spouses, adult children and other relatives.
Risk Analysis: Is the science of risks and their probability and evaluation.
Home Care: Supportive care provided in the home. Care may be provided by licensed healthcare professionals, professional caregivers or informal (family) caregivers.
Dementia: Dementia is not a specific disease. Instead, it describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning.
Neuropsychological Assessment Scales: These are neuropsychological tests administered by trained health professionals for the formal assessment of cognitive function.
Decision Support Systems: A Decision Support System (DSS) is a computer-based information system that supports business or organizational decision-making activities.