title: Self-management by family caregivers to manage changes in the behavior and mood of their relative with dementia: an online focus group study.
abstract: BACKGROUND
  Self-management is important for family caregivers of people with dementia, especially when they face changes in their relative's behavior and mood, such as depression, apathy, anxiety, agitation and aggression. The aim of this study is to give insight into why these changes in behavior and mood are stressful for family caregivers, what self-management strategies family caregivers use when managing these changes and the stress they experience.
  
  
  METHODS
  A qualitative study was conducted using four online focus groups with 32 family caregivers of people with dementia living in the Netherlands. Transcripts of the focus group discussions were analyzed using principles of thematic analysis.
  
  
  RESULTS
  Managing changes in the behavior and mood of their relative with dementia is stressful for family caregivers because of constantly having to switch, continuously having to keep the person with dementia occupied and distracted, the fact that others see a different side to the relative, and the fact that caregivers know what to do, but are often not able to put this into practice. Caregivers use calming down and stimulation as self-management strategies for influencing the changes in the behavior and mood of their relative. Furthermore, caregivers describe three self-management strategies that let them manage their own stress and keep up the care for their loved ones: looking for distractions, getting rest, and discussing their feelings and experiences.
  
  
  CONCLUSIONS
  Behavior and mood changes of a person with dementia are stressful for family caregivers. They use several self-management strategies to positively affect the mood and behavior changes, and also to manage their own stress.
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care, Research, VU University Medical Center, Amsterdam, Netherlands.
authors.forename: Judith
authors.initials: J
authors.lastname: Huis In Het Veld
authors.affiliation: Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands.
authors.forename: Renate
authors.initials: R
authors.lastname: Verkaik
authors.affiliation: Inholland University of Applied Sciences, Amsterdam, The Netherlands.|Parnassia Psychiatric Institute, The Hague, The Netherlands.|Department of Psychiatry, EMGO Institute for Health and Care Research, VU University, Medical Center, Amsterdam, The Netherlands.
authors.forename: Berno
authors.initials: B
authors.lastname: van Meijel
authors.affiliation: The Geriant Foundation, Region North of Amsterdam, The Netherlands.
authors.forename: Paul-Jeroen
authors.initials: PJ
authors.lastname: Verkade
authors.affiliation: Dutch Alzheimer's society, Amersfoort, The Netherlands.
authors.forename: Wendy
authors.initials: W
authors.lastname: Werkman
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO+ Institute for Health and Care Research, VU Medical Center, Amsterdam, The Netherlands.
authors.forename: Cees
authors.initials: C
authors.lastname: Hertogh
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care, Research, VU University Medical Center, Amsterdam, Netherlands. a.francke@nivel.nl.|Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands. a.francke@nivel.nl.
authors.forename: Anneke
authors.initials: A
authors.lastname: Francke
mesh_terms: D000328:Adult; D000339:Affect; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D019468:Disease Management; D005260:Female; D017144:Focus Groups / Q000379:methods; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D001523:Mental Disorders / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D012648:Self Care / Q000379:methods / Q000523:psychology*
keywords: Challenging behavior; Changes in behavior and mood; Dementia; Family; Informal caregivers; Internet discussion; Online focus groups; Self-management