Limited knowledge exists about how dementia affects a person´s life seen from the perspective of people living with the disease. The aim of this Ph.D. study is to develop a participatory research model drawing from qualitative participatory research about the lifeworlds of people with early stages of dementia. Knowledge about how to involve people with early dementia as research partners and knowledge about their lifeworlds is important because people with dementia often are excluded from research activities. Thus has dementia mostly been described from a medical perspective and persons with dementia have been viewed as unable to contribute to an understanding of the condition and to benefit from training related to become active research partners.
The methods used in the study are a combination of participatory and ethnographic research methods; participant observation, interview, Ecological Momentary Assessment and focus groups. In the study ten people with early dementia from an adult school in Denmark will be trained in research skills inspired from two patient and public involvement models to qualify them to conduct a participatory research project. In the study the participants’ own suggestions and steps in the research process will inform both the research project and the development of a participatory research model. All data will be analyzed from an interpretive phenomenological perspective inspired from Max Van Manen.
It is anticipated that the study will develop a model for how people with early dementia can be trained and involved as active research partners and knowledge about how dementia affects a person´s daily life; which is important to provide a greater holistic understanding about the disease. The study will raise the profile of the voice of the person with dementia, so that future treatments, cares and services can be offered according to what people with early dementia experience as relevant.