I’m not all gone, I can still speak: The experiences of younger people with dementia. An action research study

Abstract

In this study we explored the experiences of younger people with dementia (age 60–67 years) using an action research methodology across three phases. Phase One involved interviews with participants (n = 8). Phases Two (n = 5) and Three (n = 4) consisted of two action research groups. Thematic analysis highlighted few difficulties commonly associated with younger people with dementia (e.g. loss of employment). Participants highlighted a need for social support from a variety of sources as well as the opportunity to develop a shared social identity and a focus on remaining strengths. The ‘action’ (Phase Three) comprised a leaflet written by participants for other people with dementia. The findings suggest there is a need for people with dementia to receive information from people who have experienced dementia and for that information to foster a sense of hope and resilience. Furthermore, the findings support the use of action research methodologies with people with dementia.