How Do Persons with Young and Late Onset Dementia Die?

Background: End of life symptoms and symptom management as well as the quality of dying (QoD) of persons with advanced dementia (PWAD) have not yet been systematically studied in Germany.

Objective: 1) To investigate symptoms, treatment and care at the end of life, advance care planning, and circumstances of death of recently deceased PWAD; 2) To determine whether there are differences between young and late onset dementia (YOD and LOD).

Methods: The study was performed in the context of the project EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of Young-onset and Late-Onset dementia in Germany).

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

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.

IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol.

Background: Scientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home.

RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study.

Background: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group.

Health care utilization in frontotemporal lobar degeneration.

The aim of this study was to find out how patients with frontotemporal lobar degeneration are cared for, to which extent family caregivers utilize professional support, and which medical treatment patients receive. Using a standardized interview, information was obtained from the caregivers of 124 patients with frontotemporal lobar degeneration on patient survival, sociodemographic characteristics, living arrangements, health care situation including formal and informal support, and pharmacological and nonpharmacological treatment. At the time of the interview, 72 patients were still alive, whereas 52 patients had already died before the interview.

Evaluation of a brief educational program for dementia carers: the AENEAS study.

Objective: To evaluate the efficacy of a practical, easily implemented, educational intervention in group format for informal carers of persons with dementia.

Methods: Multi-centre, randomised, controlled, single-blind trial involving 292 family caregivers of patients with moderate dementia in Alzheimer's disease.

Results: Participants valued program components which had a practical impact on their caring role.