Alzheimer's disease is long lasting and ultimately severely debilitating. Although deterioration is inevitable, the rate of progression of the disease for individuals is quite variable. The uncertainty about how long a particular stage will have to be endured makes caring for a patient with AD uniquely difficult and emotionally distressing for family members.
Family caregivers generally prefer to avoid placing their elderly relatives in nursing homes, and spouse-caregivers are more reluctant than other relatives to do so. However, spouse-caregivers require considerable support and assistance to keep patients at home.
Our clinical experience, corroborated by the outcomes of research evaluating the needs of family caregivers, suggested that a strategy to support caregivers should be based on 4 principles:
- each family has unique problems;
- most caregivers would benefit from more understanding and support from their families;
- all caregivers run the risk of isolation;
- it is necessary to continue to provide support for caregivers throughout the duration of the disease rather than for only a short period of time.
A novel and promising way to relieve caregivers from the stress associated to relatives's daily care is to use computer-based simulations. Indeed, by allowing users to practice common challenges that they encounter in approximating circumstance, simulations can help users to develop knowledge and skills that can be applied in real-life settings.
Our target simulation should immerse spouse-caregivers in authentic situations and enable them to practice and learn autonomously, at home, following their own pace. In addition, it should be easily customizable to reflect the uniqueness of the family situation as well as the evolution of the disease.
In this project, we will implement the personalization at the level of the patient's characteristics. Simulations will need to adapt to the following user-defined features:
- Environmental characteristics (e.g. age, gender, location, occupation, physical disabilities);
- Behavioral characteristics of the patients (aggressivity, apathy, mood change, etc.).
The work is divided in four stages going from the identification of the simulation scenarios to the validation of the outcomes of the intervention through an experimental study. Although the work is presented sequentially, all parts are obviously linked and possible feedbacks are possible between them.
- Defining simulation scenario : The essential knowledge for the project is gathered at this first stage. All this material is then use by a group of experts and an author to build engaging scenarios.
- Personalized simulations : At this second stage the informal scenarios are translated into more formal requirement for the narrative engine. Novel personalization features are added to the narrative engine.
- Influence of personalization on user perception of the simulation : Our first evaluation will concern the simulation. The aim is to discover if the users are satisfied with the platform independently of its mid-term outcome.
- Exploring intervention outcomes : This last step of the proposal concerns the evaluation of the simulation in regard to its primary objective, the reduction of burden of the caregivers.
In order to measure and evaluate the social outcome of the project, it is important to ensure a maximal participation of the target population as well as their long-term adherence. Consequently, we will implement a communication and follow up plan with the family caregivers.