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


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.


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.


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.


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.

Education & Experience

Joni has a background in Social Policy, and Social Profit & Public Management; and a joint PhD in Social Health & Biomedical Ethics and Law at Vrije Universiteit Brussel (VUB) and Katholieke Universiteit Leuven (KUL), Belgium. Her doctoral research has focused on the development of an advance care planning intervention program in nursing homes, which she evaluated in a cluster randomized controlled trial and mixed-methods process evaluation. In recognition of her work she won the McKinsey & Company Scientific Award for PhD with most societal impact in Belgium in 2020. In 2019, she was selected as an Atlantic Fellow and awarded a Belgian American Education Foundation (B.A.E.F.) and Fulbright postdoctoral scholarship to work at Harvard Medical School as a postdoc in 2020. To date, her scholarly products include 9 peer-reviewed papers and multiple presentations at international conferences. Joni is also a steering member of the World Young Leaders in Dementia (WYLD) network as Head of Outreach and Capacity Building.

Awards & Honors

King Baudouin Fund
Navigating community-dwelling persons living with dementia and family caregivers through stages of dementia: Acceptability and adaptation of the personalized, scalable Care Ecosystem via stakeholder interviews and workshops
Maurange Fund
GBHI, Alzheimer's Association & Alzheimer's Society UK
End-of-life care in people who have/died from a coincidental diagnosis of cancer and dementia
Pilot Award for Global Brain Health Leaders
Fonds Wetenschappelijk Onderzoek (FWO)
Scientific Prize in recognition of a PhD that has demonstrated societal and economic impact and concrete implementation of his/her PhD
McKinsey & Company Scientific Award
Atlantic Institute & Rhodes Trust
Project to minimize/study the impact of COVID-19 on endangered and vulnerable communities
COVID-19 Solidarity Grant
Belgian American Educational Foundation
Award fostering higher education and research – enrollment in Harvard Medical School & MGH
BAEF Postdoctoral Research Fellowship
US Fulbright Commission
Award for research abroad – enrollment in Harvard Medical School & MGH
Fulbright Postdoctoral Fellowship
Global Brain Health Institute, University California, San Francisco & Trinity College Dublin
Award for promising dementia leaders from various professions
Atlantic Fellowship for Equity in Brain Health
University Medical Center (VUB)
Wetenschappelijk Fonds Willy Gepts (W.F.W.G.) [Scientific Fund Willy Gepts]
Pan-European INTERDEM Network
INTERDEM Academy Award