Exploring Experiences and Needs of Spousal Carers of People with Behavioural variant Frontotemporal Dementia (bvFTD) including those with familial FTD (fFTD): A Qualitative Study

Introduction: Frontotemporal dementia (FTD) is one of the most common types of dementia in persons under the age of 65. Diagnosis is often delayed due to slow gradual decline and misinterpretation of ‘non-typical’ dementia symptoms (linguistic, behavioural and personality changes). Given the younger age of onset and the challenging presentation of symptoms, particularly in those with behavioural variant type FTD (BvFTD), informal carers of people with FTD experience greater challenges than carers of people with more general forms of dementia. The aim of the present study was therefore to explore experiences of spousal carers of people with BvFTD, including those with familial or genetic links to the disease (GvFTD). Method: Fourteen qualitative interviews were analysed using an inductive approach to Thematic Analysis (Braun & Clarke, 2006) to understand the experiences of spousal carers of people with BvFTD and GvFTD with a particular focus on understanding how they get their needs met, and to identify any potential differences across these two groups. Results: Five main themes were identified that illustrate the experiences of spousal carers, including their needs, and the facilitators and barriers of getting their needs met. These included: a) The “Constant Battle” – A journey toward an FTD diagnosis, b) Shock, Relief and Fear – Challenges persist post diagnosis, c) The “Life Altering” impact – The loss of the spousal relationship and shifting roles, d) Adapting, Managing Symptoms and Receiving Carer Support, e) Lack of General Knowledge – Barriers to support. Conclusions: Findings highlight the need for healthcare professionals to be educated on the initial symptoms and presentations of FTD, and to enable carers and families to receive timely diagnosis and appropriate support. Future research should investigate the impact of GvFTD on carers and the family system, to explore positive or meaningful experiences in caring, as well as theory-driven research to identify helpful coping strategies for carers of people with FTD.