A longitudinal exploration of the experience of fronto-temporal dementia in intergenerational families

Abstract

Background: Dementia presents challenges for whole families requiring on-going adaptation. Family relationships provide important benefits, thus understanding the impact of dementia for families is critical to facilitating their wellbeing. Behavioural variant Frontotemporal Dementia (bvFTD) brings specific challenges for relationships, however little is understood about how these are experienced or how families adjust. Aims: This research sought to develop an in-depth understanding of the inter-generational family experience of bvFTD over time. Method: Using a qualitative design, nineteen people were interviewed from seven families, including people living with bvFTD. Interviews occurred over three time points. Narrative analysis and grounded theory were used to understand how relationships are affected and the psycho-social coping processes involved in adjustment over time. Results: Four themes emerged; - Cohesive and connected --- distant and disconnected - Challenges to we/ I - Assimilating, adjusting and reconstructing --- resisting, denying, being stuck - A changing we / I --- an entrenched we / I Results illustrate the influence of pre-existing relationships on family experiences of bvFTD. Challenges to family relationships occurred, including changes in mutuality and increased responsibility. Levels of awareness and understanding, influenced by factors such as proximity impacted upon individual and family adjustment. Assimilating these changes was critical to developing strategies for managing the impact on the relationship and adapting to ‘a changing we’. For closest family members including partners, grief and loss were experienced resulting in the need for a parallel adaptation to a changing ‘I’. Acceptance and adaptation was critical to supporting the wellbeing of the person with bvFTD.