Abstract

There is limited knowledge on how people with younger onset dementia experience the transition to care facilities with people significantly older than themselves. The researchers asked those with younger onset dementia to give voice to their experiences when facing elder care. Through purposeful sampling, nine people with younger onset dementia were identified through medical records. Using an established qualitative investigation strategy, audiotaped interviews were analyzed using Interpretive Phenomenological Analysis. This paper summarizes findings from the four participants with younger onset dementia who were still able to provide a narrative for analysis. The lived experience of those facing life in aged care may be one of distress and characterized by loss of belonging, loss of agency, and loss of vital activity. Difficulty in timely diagnosis, combined with a lack of access to age appropriate care and unfamiliar institutional environments, all compromise their quality of life. The study strengthens the view that individuals with dementia are capable of reflecting on their lived experience and contributes to the growing body of evidence that people with younger onset dementia require specialized, age-appropriate services.