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

Scand J Caring Sci. 2017 Dec;31(4):779-788. doi: 10.1111/scs.12397. Epub 2017 Mar 9.


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.

Keywords: coping; early-onset dementia; experiences; frontotemporal lobe dementia; need; partners; qualitative study; services; support.

MeSH terms

  • Age of Onset
  • Aged
  • Disease Progression
  • Female
  • Frontotemporal Dementia / pathology*
  • Frontotemporal Dementia / psychology
  • Humans
  • Male
  • Middle Aged
  • Spouses*