How and why does social connectedness change in families living with the effects of behavioural variant frontotemporal dementia?

There is a paucity of research studies exploring the changes to social connectedness of people diagnosed with bvFTD and their families, from the premorbid to late stages of the condition. The purpose of this exploratory study was to establish how and why social connectedness changed for the study families over the progression of bvFTD. Social citizenship was selected as the conceptual framework and case study research as the methodology. Five families living with the effects of bvFTD volunteered for the research, and each person with the diagnosis was in the middle/late stages of the condition. Data was collected from the case study families and contacts, using a range of data collection tools (semi structured interviews; document review; diaries and participant observations). Thematic analysis was selected to examine the data collected from each family (within case analysis) and then the findings were compared and contrasted with the other families studied (cross case analysis). Six themes were identified from the collected data: i).“Why are they behaving like this?:Finding a reason; ii).“What is happening to our family? Changing family relationships.; iii).“Other people are noticing”; iv).“Getting a diagnosis”; v).“Now we know what it is.” and vi). “Grief and loss”. Findings indicated that relationships and social connectedness deteriorated in the pre diagnosis stage, and families stated it was largely due to the behavior, personality and social functioning changes of their family member, and the belief that these changes were intentional. By the time a diagnosis was given, the relationships and social connectedness had broken down to such a degree that they could not be rebuilt. The families described how they were no longer invited to social events in the same way as before and their social network reduced significantly. The families also stated that they tended to withdraw from social networks and events due to the embarrassment caused by their family member’s changed behavior. In conclusion, if bvFTD was recognized, diagnosed and specialist advice and support, given earlier by practitioners it could enable families to understand the effects of bvFTD on their family member’s behaviour. This could enable the family to retain relationships and connectedness, develop coping strategies, build resilience and prevent crises. Recommendations for clinical practice: i) increased training for medical practitioners, health and social care staff regarding early recognition and diagnosis of bvFTD; ii) specialist post diagnostic support offered immediately after diagnosis, and iii) awareness raising through campaigns which could include workplace awareness training.