title: Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity.
abstract: BACKGROUND
  Informal care is essential for many people with dementia (PwD), but it often results in a considerable burden for the caregiver. The perseverance time instrument integrates the aspect of perceived burden with the caregiver's capacity to cope with the burden, in contrast to most available instruments, which measure solely the burden of caregiving. The aim of this study was to extend insight into psychometric properties of the perseverance time instrument, specifically the construct validity, responsiveness, and predictive validity, within the population of informal caregivers for PwD.
  
  
  METHODS
  Data from two studies among informal caregivers of community-dwelling PwD in the Netherlands were used. The first study included 198 caregivers from a single region in the Netherlands and lasted 1 year. The second was a cross-sectional nationwide study with 166 caregivers for PwD. Questionnaires of both studies included questions regarding demographics and informal care, perseverance time, and other informal caregiver outcomes (Caregiver Strain Index, Self-rated Burden scale, Care-related Quality of Life instrument, and visual analogue scale health scores). Construct validity and responsiveness were assessed using a hypothesis-testing approach. The predictive validity of demographic characteristics and perseverance time for living situation after 1 year (living at home, institutionalized, or deceased) was assessed with multivariable multinomial regression.
  
  
  RESULTS
  All but one of the hypotheses regarding construct validity were met. Three of five hypotheses regarding responsiveness were met. Perseverance time scores at baseline were associated with living situation after 1 year (p < 0.01), unlike age, sex, and relationship with PwD. Perseverance time strongly increased predictive power for living situation after 1 year (c-index between 0.671 and 0.775) in addition to demographic characteristics.
  
  
  CONCLUSIONS
  This study supports previous findings regarding the construct validity of the perseverance time instrument and adds new evidence of good construct validity, responsiveness, and predictive validity. The predictive power of perseverance time scores for living situation exceeds the predictive power of other burden measures and indicates informal care as an important factor for maintaining the patient at home.
authors.affiliation: Department of Geriatric Medicine, Donders Institute for Brain Cognition and Behaviour, Radboud university medical center, PO Box 9101 (hp 925), Nijmegen, 6500 HB, The Netherlands.|Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Anke
authors.initials: A
authors.lastname: Richters
authors.affiliation: Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The Netherlands.|Department of Geriatric Medicine, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: René J F
authors.initials: RJ
authors.lastname: Melis
authors.affiliation: Institute of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.|Erasmus School of Economics, Erasmus University Rotterdam, Rotterdam, The Netherlands.
authors.forename: N Job
authors.initials: NJ
authors.lastname: van Exel
authors.affiliation: Department of Geriatric Medicine, Donders Institute for Brain Cognition and Behaviour, Radboud university medical center, PO Box 9101 (hp 925), Nijmegen, 6500 HB, The Netherlands.|Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Marcel G M
authors.initials: MG
authors.lastname: Olde Rikkert
authors.affiliation: Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The Netherlands. marjolein.vandermarck@radboudumc.nl.|Department of Geriatric Medicine, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands. marjolein.vandermarck@radboudumc.nl.
authors.forename: Marjolein A
authors.initials: MA
authors.lastname: van der Marck
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003704:Dementia / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D009426:Netherlands; D011594:Psychometrics; D011788:Quality of Life; D012044:Regression Analysis; D012112:Residential Facilities; D054063:Superior Sagittal Sinus; D011795:Surveys and Questionnaires; D013997:Time Factors
keywords: Burden; Dementia; Informal care; Psychometric properties; Validity