The overall aim of this study was to study costs and effects of an assistive technology intervention that included assistive technology, support and strategies for persons with dementia and their relatives. Further, the aim was to study the quality of the intervention process and how it was perceived by the participants in the project.
This assessment study was performed within a project called “Technology and Dementia – development work, create methods and increase competence”. This project was coordinated by the Swedish Institute of Assistive Technology in collaboration with the Alzheimer Society in Sweden and the Dementia Association and was funded by the Swedish Inheritance Fund, Linköping University and the County Council of Östergötland. Two national resource centres were appointed within the project. These developed the assistive technology intervention.
The study was designed as a pre/post study. Data was collected at three different occasions of measurement: baseline, first follow-up (four weeks after the intervention) and second follow-up (twelve weeks after the intervention). Different outcome measures were used to study the effect of the intervention: health related quality of life (HRQoL), support/caregiving situation, quality of sleep, perception of time and ability to perform everyday life activities. The costs in the study had a societal perspective. A process oriented instrument was used to study the quality of the intervention process. Persons with dementia as well as their relatives answered questionnaires and interviews in the study.
Data was collected via interviews at the resource centres, via self ratings and through telephone interviews from the research team. The total population included in the analyses was 48 persons with dementia and 47 relatives.
The results showed that there were no significant differences in effects between baseline and the two follow-ups, except for ability to perform everyday activities where data indicated deterioration during the study period. In one dimension of HRQoL for the relatives there was also a significant difference; the relatives rated greater difficulties at the second follow-up. Cognitive ability was used as a measure for disease stability during the study, and showed no significant differences. There was, however, a rather large drop-out at the second follow-up (15 %) in data on cognitive ability, therefore this result should be interpreted with caution; the persons with dementia may have deteriorated during the study period. This could be reflected in the deterioration in the ability to perform everyday life activities measure.
The persons with dementia rated their HRQoL higher than the relatives’ proxy ratings (i.e. relatives’ ratings of the HRQoL of the persons with dementia), the differences between the proxy ratings and the persons’ own ratings were significant at all three occasions of measurement. The relatives rated their own HRQoL somewhat higher than the persons with dementia rated their own HRQoL. There were no significant differences between baseline and the followups.
The intervention included many different types of assistive technologies. The cost of the intervention was 16 000 SEK/person with dementia and relative. There were no significant differences in costs of formal care during the study period. Many relatives performed informal care many hours of the day. Even though the differences in informal caregiving between baseline and the second follow-up were not significant there was a tendency of a slight increase in informal care time of everyday life activities and there was also a decrease in time spent supervising, a little less than one hour per day.
An evaluation of the quality of the intervention process and how it was perceived was performed. Most relatives perceived that their needs were well fulfilled during the intervention process. Some aspects were brought forward where the intervention process could be improved. Seventy-two percent of the relatives rated the intervention as of great importance, 28 percent rated the intervention as of some importance or of no importance. The persons with dementia had higher expectations on the intervention than the relatives and most persons with dementia perceived the intervention as of great importance.
Technology and Dementia was a trial project where potential effects and costs were studied. The study was explorative and contributes to increasing the knowledge on use of assistive technology in dementia and also on assessment methodology within this field. There were limitations in the study regarding size of the study population and lack of a comparison group.
Assessing assistive technology for persons with dementia and their relatives from a socioeconomic perspective entails certain methodological challenges. A model for assessment of assistive technology interventions was developed and tried in this study. Results and methodology are discussed in relation to the assessment model. From this assessment study, areas have been identified for future studies. Future studies will be performed through subgroup analyses to identify groups where the intervention was successful and groups where the intervention was not successful.