Quality of life of family carers of persons with young-onset dementia: A Nordic two-year observational multicenter study

PLoS One. 2019 Jul 19;14(7):e0219859. doi: 10.1371/journal.pone.0219859. eCollection 2019.


Objectives: To identify factors associated with QOL in carers of persons with young-onset Alzheimer's (AD) and frontotemporal dementia (FTD) and explore development in QOL over a two-year period.

Methods: Eighty-eight family carers of community-dwelling people with young-onset AD (n = 50) and FTD (n = 38) recruited from Nordic memory clinics. Carer QOL was assessed using the Quality of Life-Alzheimer's Disease questionnaire. Carer burden was assessed by the Relatives' Stress scale and depressive symptoms by the Montgomery-Åsberg Depression Rating Scale. Factors associated with QOL in YOD and development in QOL over time were explored with growth mixture model trajectories and mixed model analyses.

Results: We identified two carer groups of persons with YOD following trajectories with better (n = 53) versus poorer (n = 30) QOL. Carers who reported more burden at baseline had greater odds of belonging to the poorer QOL group (OR 1.1 (1.0-1.2), p = 0.004). Analyses of the development in QOL showed a significant decline in QOL-AD scores among the AD-carers from baseline to two-year follow-up (p = 0.044), while the score remained stable among the FTD-carers. The FTD-carer group had significantly higher mean QOL-AD scores at one- and two-year follow-up (p = 0.022 and 0.045, respectively). However, the difference between the two groups regarding time trend was non-significant. Poorer QOL was associated with increased carer burden (p = 0.01), more depressive symptoms (p = 0.024), and being male carer (p = 0.038).

Conclusion: Higher care burden, more depressive symptoms, and being a male carer was associated with poorer QOL in family carers for persons with YOD. Carers of persons with AD may experience greater challenges in preserving QOL compared to carers of persons with FTD.

Publication types

  • Multicenter Study
  • Observational Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Age of Onset
  • Aged
  • Alzheimer Disease / complications
  • Alzheimer Disease / epidemiology
  • Caregivers*
  • Dementia / epidemiology*
  • Dementia / etiology
  • Family*
  • Female
  • Follow-Up Studies
  • Frontotemporal Dementia / epidemiology
  • Frontotemporal Dementia / etiology
  • Humans
  • Male
  • Middle Aged
  • Public Health Surveillance
  • Quality of Life*

Grant support

This study is funded by the Norwegian Research Council, grant number 229002, https://www.forskningsradet.no/no/Forsiden/1173185591033. This study was also funded by the Norwegian National Advisory Unit on Ageing and Health, and the Telemark Hospital Trust, for personnel resources (one project nurse in 50% position and author in extended leave from clinical work). The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.