Living with semantic dementia: A case study of family experience

There is a growing body of research describing semantic dementia, including differential diagnosis of the condition from other more common dementias. However, less is known about the subjective experiences of those living with semantic dementia including family experiences. Given that semantic dementia presents with a different set of challenges to more common dementias, there is a need to explore in more detail the caregiver experience in this condition and to ascertain how this maps onto, or not, the general caregiving literature in dementia. By doing this it becomes possible to understand the complexities of this experience and with time to provide more proactive and appropriate advice and support to subsequent caregivers. In this study, for the first time, we will present a thematic narrative analysis of interviews conducted with a wife and son living with a husband/father with semantic dementia and the everyday issues that this embodies. Using this approach four shared and extended themes were identified from the data, namely: ‘living with routines’, ‘policing and protecting’, ‘making connections’ and ‘being adaptive’. Caregiver narratives for more common dementias such as Alzheimer’s disease have existed for many years and these aid carers and clinicians in their discussions and processing of experience. It would appear from this study that the narrative descriptions of caregiving in semantic dementia provide insight into the practical and emotional issues, and the challenges and strategies employed on a daily basis. The implications for policy and practice are discussed.