Cohort 
2019

Joni Gilissen, PhD

Social Health Scientist, Health Services Researcher

Increasing knowledge, delivery, and policies around palliative care reduces the impact and scale for people living with dementia and their loved ones.

Current Work

Joni is a postdoctoral researcher with the End-of-Life Care Research Group based at Vrije Universiteit Brussel and Ghent University in Belgium. Her research primarily focuses on the end of life of and palliative care in older adults, specifically regarding communication about the end of life.

Personal Hero

Cicely Saunders, Coco Chanel

Words of Strength

Making connections, dreaming big

Vision

To reduce the scale and impact of dementia, Joni believes we need to increase knowledge regarding unmet palliative and end-of-life needs, service provision, economics, and policies around palliative care for people living with dementia and their loved ones.

Strategy

Joni is currently evaluating how to embed palliative care along the continuum of care (through the disease course to the end of life and after), which includes provision of palliative care in multiple settings and provided by different types of healthcare professionals.

Impact

Joni has engaged in several projects, including an evaluation of the PREPARE website; end-of-life care needs in prion disease; an analysis of patient health equity during COVID-19; and an international policy analysis to support COVID-19 guidance development for nursing homes.

Motivation

People living with dementia and their families report many unmet physical, psychosocial and existential needs, which can be improved by introducing palliative care. Currently however, people living with dementia are disadvantaged when it comes to timely initiation of palliative care.