title: Experiences and needs of spouses of persons with young-onset frontotemporal lobe 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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.
authors.forename: Aud
authors.initials: A
authors.lastname: Johannessen
authors.affiliation: Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.|Department of Public Health and General Practice, Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.|St. Olav's University Hospital, Trondheim, Norway.
authors.forename: Anne-Sofie
authors.initials: AS
authors.lastname: Helvik
authors.affiliation: Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.
authors.forename: Knut
authors.initials: K
authors.lastname: Engedal
authors.affiliation: Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.|Norwegian Social Research (NOVA), University College of Oslo and Akershus, Oslo, Norway.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Thorsen
mesh_terms: D017668:Age of Onset; D000368:Aged; D018450:Disease Progression; D005260:Female; D057180:Frontotemporal Dementia / Q000473:pathology* / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D018454:Spouses
keywords: coping; early-onset dementia; experiences; frontotemporal lobe dementia; need; partners; qualitative study; services; support