Objective and research questions. Dementia is a growing challenge in our aging society. Often, persons close to older people at some point in time sense that ‘something is wrong’ (long) before dementia is actually diagnosed, but do not know how to act upon it. This may lead to situations where dementia progresses unnoticed, until it escalates, and people need sudden admission to a hospital or nursing home. Therefore the aim of this project was to develop the outlines of an ICT system to effectively register and interpret signs of potential dementia, in order to give proper care long before things get out of hand. Besides relatives, close friends and health care workers, also other persons or organizations that are involved with older persons could play a role in the early detection of dementia. Individual signs often do not elicit a call to action. The combination of signals from several sources into a central digital system might generate a more complete view of an individual's situation. This yielded the following research questions: 1. Who are the important social contacts in the network of older persons that might detect early signs of problems? 2. How do social contacts currently experience and process possible signs of dementia? 3. How do older persons and their social contacts perceive a solution like the one we are envisioning (a kind of ‘digital central signaling system’)?
Methods. The social network of 12 older persons was studied with semi-structured interviews. Furthermore, 12 formal carers, 12 informal carers and eight family carers of persons with dementia were interviewed, in order to map experiences and processing of early signs of dementia. In addition, the attitude toward the envisioned system was studied. In an expert panel of 18 participants the results of the interviews were transformed into recommendations. These were subsequently tested in two focus group sessions with older persons.
Results. Family plays a central role, both in the social network of older persons as well as in the early signaling of dementia. All persons involved in this study valued the idea of a dementia signaling system. There is some skepticism with respect to privacy matters among carers. Apart from signaling, there is also a great demand for tailor made information in the pre-diagnostic stage. All involved persons indicate the need for support, but they experience high barriers in taking the first steps and finding the right aid and information.
Conclusion. An adaptive information system that also offers signaling possibilities will be more appropriate than an exclusive signaling system. Such a system needs to prevent stigmatization, should be demand driven, focused on empowerment rather than care, and managed by the user. An approach from the welfare perspective might be more successful than a disease-oriented approach.