Transfer seminar for Diana Schack Toft, PhD student, IoHW

An insight into the Lifeworlds of people with early-stage dementia - development of a qualitative participatory research model

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.

People with dementia have been viewed as unable to contribute to an understanding of the condition. In addition they are often excluded from research activities and until recently the experiences of living with dementia have been largely described from the perspectives of carers and professionals.

This study is framed by participatory methodology using well known qualitative methods including participant observation, interview and focus groups. In the study twelve people with early-stage dementia from an adult school in Denmark are being trained in research skills inspired from previously published patient and public involvement models. Two participatory research projects are being completed, informed by participants’ own suggestions and experiences, with the aim of developing a model of how people with early-stage dementia can be trained and involved as active research partners. During this presentation these projects will be explained, and their usefulness in extending our knowledge explored.

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.