How Do Persons with Young and Late Onset Dementia Die?

Area of Science:

• Gerontology
• Palliative Care
• Dementia Research

Background:

• End-of-life symptoms and quality of dying (QoD) in persons with advanced dementia (PWAD) remain understudied in Germany.
• Previous research has not systematically investigated palliative care needs for individuals with young-onset dementia (YOD) and late-onset dementia (LOD).

Purpose of the Study:

• To investigate end-of-life symptoms, treatment, care, advance care planning, and death circumstances for recently deceased PWAD.
• To identify differences in end-of-life care between YOD and LOD.

Main Methods:

• The EPYLOGE project interviewed closest relatives of deceased PWAD (N=46 YOD, N=54 LOD).
• Participants lived at home or in long-term care facilities.

Main Results:

• Symptoms and circumstances of death were similar between YOD and LOD.
• Late-onset dementia patients had more comorbidities and higher hospitalization rates.
• Frequent symptoms included swallowing difficulties, gurgling, and shortness of breath; 60% appeared 'at peace'.
• Significant interindividual variation in suffering and QoD was observed, with no clear determinants identified.

Conclusions:

• Low quality of dying (QoD) may stem from inadequate symptom recognition and treatment.
• Regular assessment of PWAD needs is crucial.
• Implementing targeted treatment and support strategies for patients and caregivers is essential.