Experiences and needs of spouses of persons with young-onset frontotemporal dementia during the progression of the disease

Abstract

Background Two of the most common types of young-onset dementia (<65 years old) are Alzheimer's disease and frontotemporal lobe dementia (FTLD). A limited amount of research that focuses on the needs of spouses of persons with young-onset FTLD (yo-FTLD) has been published. Thus, we have carried out a study aiming to examine the spouses of yo-FTLD experiences and needs for assistance in daily life.

Method Qualitative interviews with 16 informants (aged 51–69 years; nine wives, six husbands and one male cohabitant) were conducted in 2014 and 2015. The data were analysed by reformulated and modified method of Grounded Theory.

Findings From the interviews, three main themes with subthemes emerged: The first main theme that appeared is sneaking signs at the early stage of dementia. It covers two subthemes: incomprehensible early signs and lack of self-insight. The second main theme that appeared is other relations, and it covers three subthemes: the torment, interference with work and vanishing social relations. The third main theme: needs for assistance through all stages of dementia, are described under three subthemes: Relief of the diagnosis, support at home and the path to the nursing home.

Conclusion The interviews showed that spouses and the whole family of yo-FTLD need interdisciplinary, individualised and specialised support throughout the progression of the disorder. Furthermore, there is a need for more knowledge about yo-FTLD among health personnel, including general practitioners. IT-solutions can contribute to developing such services and support to the entire family.