Quality of Life in Advanced Dementia with Late Onset, Young Onset, and Very Young Onset

Julia Hartmann, Carola Roßmeier, Lina Riedl, Bianca Dorn, Julia Fischer, Till Slawik, Mareike Fleischhaker, Florentine Hartmann, Silvia Egert-Schwender, Victoria Kehl, Bernhard Haller, Helga Schneider-Schelte, Andreas Dinkel, Ralf J Jox, Janine Diehl-Schmid, Julia Hartmann, Carola Roßmeier, Lina Riedl, Bianca Dorn, Julia Fischer, Till Slawik, Mareike Fleischhaker, Florentine Hartmann, Silvia Egert-Schwender, Victoria Kehl, Bernhard Haller, Helga Schneider-Schelte, Andreas Dinkel, Ralf J Jox, Janine Diehl-Schmid

Abstract

Background: Advanced stages of dementia are characterized by severe cognitive and physical impairment. It has not yet been investigated whether persons with young onset dementia (YOD) and late onset dementia (LOD) differ in advanced disease stages.

Objectives: To compare quality of life (QoL) between persons with advanced YOD and LOD; to explore the determinants of QoL; to investigate whether YOD and LOD differ with regard to symptoms and care.

Methods: The study was performed in the context of EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of YOD and LOD in Germany). Persons with advanced dementia (PWAD) were assessed and caregivers were interviewed. QoL was measured with the proxy rating Quality of Life in Late Stage Dementia (QUALID) scale.

Results: 93 persons with YOD and 98 with LOD were included. No significant differences in QoL were detected. Determinants of QoL were similar in YOD and LOD. Behavioral and psychological symptoms of dementia (BPSD), suffering and other distressing symptoms were associated with a lower QoL. In YOD but not in LOD antipsychotic treatment was associated with low QoL. The group of persons who were younger than 65 years at the time of the study visit experienced significantly more distressing symptoms than older PWAD.

Conclusion: Overall, persons with advanced YOD do not appear to be disadvantaged compared to old and oldest PWAD. Special attention, however, must be paid to the group of the very young persons who seem to be particularly vulnerable.

Keywords: Antipsychotics; caregivers; dementia; home care; late onset dementia; long term care; quality of life; young onset dementia.

Conflict of interest statement

Authors’ disclosures available online (https://www.j-alz.com/manuscript-disclosures/20-1302r2).

Figures

Fig. 1
Fig. 1
Quality of life in late stage dementia (QUALID) total scores in YOD and LOD. LOD, late onset dementia; QUALID, Quality of life in late stage dementia; YOD, young onset dementia.

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