Assessment of Support Interventions in Dementia Methodological and Empirical Studies

Abstract: Dementia means a continuous deterioration of abilities and has a large impact on the persons affected as well as on family members and others close to the persons with dementia. Interventions aimed at this population in order to support and alleviate the often straining situation may be of great importance. There is a need to increase the knowledge and understanding of the impact and consequences of these interventions, both at an individual level and at a societal level. The demand for information concerning, e.g., economic and medical impact of technologies and interventions within health care is increasing. Assessment of technologies and interventions in dementia is related to certain methodological issues. The overall aim of this thesis is to contribute to the development of methodological knowledge concerning assessment studies and understanding of support interventions in dementia.This thesis work includes four studies that examine methodological aspects of assessment of support interventions in dementia and also report empirical research on the perception of support interventions from the perspectives of family caregivers of persons with dementia. In study I, an assessment model for assistive technology (AT) interventions in dementia was developed. In study II, part of the assessment model is applied, and a process evaluation of the AT intervention is presented. Study III examines family caregivers’ perception of the importance of different types of support and services. In the final study, study IV, a well?acknowledged methodological challenge within the field of assessment in dementia is addressed: measuring health?related quality of life (HRQoL). The studies are based on different data materials.An assessment model of AT interventions was developed that includes health economic evaluation from a societal perspective as well as evaluation of the intervention process. The perspectives of both persons with dementia and their relatives were incorporated in the model. The process evaluation was applied in study II in order to study the relatives’ perception of an AT intervention process. Assistive technology interventions in dementia may be of great significance for the relatives. By performing the process evaluation, several important aspects that need to be acknowledged in AT intervention processes in dementia were identified.Family caregivers of persons with dementia perceived different types of support/services within the comprehensive areas of counselling, relief and information as very important. Knowledge of the caregivers’ preferences is significant so that more directed support interventions may be provided.One specific methodological issue was addressed in study IV. The results of study IV showed that there were large differences in the results of cost?effectiveness analyses depending on whether patient self?ratings or proxy ratings (ratings of persons close to the patient) of patient HRQoL were used for the same analysis. These differences in the results could ultimately have an important impact on decision making and resource allocation.Support interventions aimed at persons with dementia and their relatives may be of great value. Conducting assessment studies of technologies and interventions within health care is important in order to increase the knowledge concerning, e.g., economic and medical impact. Assessment studies of support interventions dementia entails methodological issues that need to be addressed. There is a need for increased knowledge within this field and suggestions on methodology are made.