Factors underpinning caregiver burden in frontotemporal dementia differ in spouses and their children

Cassandra Kaizik, Jashelle Caga, Julieta Camino, Claire M. O’Connor, Colleen McKinnon, Jan R. Oyebode, Olivier Piguet, John R. Hodges, Eneida Mioshi

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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.
Original languageEnglish
Pages (from-to)1109-1117
Number of pages9
JournalJournal of Alzheimers Disease
Issue number3
Early online date18 Jan 2017
Publication statusPublished - 3 Feb 2017


  • carer burden
  • caregiver
  • frontotemporal dementia
  • children
  • depression
  • dementia severity

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