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.
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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.
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.
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