title: Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children.
abstract: The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences.
authors.affiliation: Neuroscience Research Australia, Sydney, Australia.
authors.forename: Cassandra
authors.initials: C
authors.lastname: Kaizik
authors.affiliation: Sydney Medical School, Brain and Mind Research Institute, University of Sydney, Camperdown, Australia.
authors.forename: Jashelle
authors.initials: J
authors.lastname: Caga
authors.affiliation: Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, UK.
authors.forename: Julieta
authors.initials: J
authors.lastname: Camino
authors.affiliation: Ageing, Work & Health Research Unit, Faculty of Health Sciences, University of Sydney, Sydney, Australia.
authors.forename: Claire M
authors.initials: CM
authors.lastname: O'Connor
authors.affiliation: Westmead Hospital, Western Sydney Local Health District, Sydney, Australia.
authors.forename: Colleen
authors.initials: C
authors.lastname: McKinnon
authors.affiliation: School of Dementia Studies, University of Bradford, UK.
authors.forename: Jan R
authors.initials: JR
authors.lastname: Oyebode
authors.affiliation: Neuroscience Research Australia, Sydney, Australia.|School of Medical Sciences, University of New South Wales, Sydney, Australia.|ARC Centre of Excellence in Cognition and its Disorders, Sydney, Australia.
authors.forename: Olivier
authors.initials: O
authors.lastname: Piguet
authors.affiliation: Neuroscience Research Australia, Sydney, Australia.|School of Medical Sciences, University of New South Wales, Sydney, Australia.|ARC Centre of Excellence in Cognition and its Disorders, Sydney, Australia.
authors.forename: John R
authors.initials: JR
authors.lastname: Hodges
authors.affiliation: Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, UK.
authors.forename: Eneida
authors.initials: E
authors.lastname: Mioshi
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003863:Depression; D005260:Female; D057180:Frontotemporal Dementia / Q000523:psychology; D006798:Housing; D006801:Humans; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D011569:Psychiatric Status Rating Scales; D012720:Severity of Illness Index; D012944:Social Support; D018454:Spouses / Q000523:psychology*
keywords: Caregiver; carer burden; children; dementia severity; depression; frontotemporal dementia