Evaluation of the DEM-DISC: An ICT tool for customized advice on care and welfare services.

OBJECTIVES:

A wide variety of care and support services are available for the growing number of community-dwelling people with dementia and their informal carers. However, they do not (effectively) use the available care and support because often they are not aware of the range of services available, are not referred to it by health care and welfare professionals or expect that the service will not meet their needs. To provide carers of persons with dementia with tailored information, the DEMentia Digital Interactive Social Chart (DEM-DISC) was developed. DEM-DISC is a demand-orientated, web-based, social chart for dementia care, which is easy accessible at anytime, anywhere by the Internet. A pilot version was tested in a controlled trial and the results were positive: compared to a control group the persons with dementia and informal carers using DEM-DISC reported more met, and less unmet needs and the informal carers felt better able to fulfil their care task (higher sense of competence).
The aim of the present study was first to further improve the pilot version of the DEM-DISC, so that advices on care and support services would be given in a more tailored way, and second, to evaluate the user-friendliness, usefulness and effects of the improved DEM-DISC among (in)formal caregivers and people with dementia, and third to study barriers and facilitators of the implementation of DEM-DISC.



METHODS:

A randomized controlled trial is conducted to evaluate the effects on (in)formal caregivers and people with dementia. People in the experimental group are using DEM-DISC for at least half a year to one year, people in the control group receive information regarding available services as usual (via general practitioner, newspaper, internet). Primary outcome measures are met and unmet needs of persons with dementia and informal caregivers, sense of competence of informal caregivers, and the experienced added value of DEM-DISC in professional caregivers. The user-friendliness and usefulness of DEM-DISC is measured by the USE-questionnaire administered in both informal and professional carers.
A process evaluation is conducted using semi-structured interviews with stakeholders, to get insight into barriers and facilitators of implementation of the DEM-DISC. The study is performed in four regions of the Netherlands.

It is expected that using the DEM-DISC will decrease the number of unmet needs and increase the number of met needs in people with dementia and their informal caregivers. Informal caregivers using DEM-DISC are expected to feel less burdened and will show improvements in self-efficacy compared to informal caregivers who receive information as usual. People with dementia are expected to show an increase in quality of life.
Professional caregivers are expected to value the DEM-DISC as an addition to their work and to appreciate the website as user-friendly and useful.

The primary outcome measures will be assessed at T=0, T=6 months and T=12 months.

At 6 months the casemanagers will be interviewed on their use of the DEM-DISC. Secondary outcome measures will be assessed at T=6 and T=12.

The intervention group receives access to DEM-DISC for one year and is guided by their casemanager in the use of this application. The casemanagers of the intervention group also use the DEM-DISC to help them refer their clients more effectively to relevant care and welfare organisations.



The control group does not receive access to DEM-DISC and searches for information about care and welfare services as usual (internet search, general practitioner, paper guides) The casemanagers of persons with dementia/caregivers in the control group do not have access to DEM-DISC themselves.