Selfhood in younger onset dementia: Transitions and testimonies

Abstract

Younger people with dementia and their carers are an overlooked population for research, policy and practice attention. In this study, data were collected from both the United States and the UK in order to explore the meaning and construction of selfhood and identity. The US data collection included in-depth interviews with 23 people diagnosed with younger-onset dementia, while the UK data collection comprised 15 face-to-face interviews with younger carers of younger people with dementia; all carers were/had been caring for a younger person with dementia diagnosed through the DSM-IV-R criteria. A grounded theory analysis of the data resulted in the emergence of five themes to explain the interview data, these were: (1) identity as a worker; (2) identity of abandoned individual; (3) sexual identity; (4) family identity; and (5) identity as an individual engaged in living. Additional research is necessary to further develop the attributes and application of these identity profiles.

Keywords:

• early onset dementia
• Alzheimer's disease
• lived experience of dementia
• dementia carers

Acknowledgements

To all the participants in the study who gave so freely of their time and hearts.