Joni Gilissen has been working primarily on research of palliative care in older people, specifically regarding communication about the end of life. Her doctoral project has focused on the development of an advance care planning intervention program in nursing homes.
Palliative care is introduced too late in the disease trajectory of people living with dementia, on a median of 14 days before death. Research however has shown that early provision of palliative care has a clear benefit; improves outcomes for both the person and his/her family. A key aspect of such early palliative care is talking about the end of life through a process called 'advance care planning'. Unfortunately, healthcare professionals lack guidance on how to initiate advance care planning and identify those in need.
People living with dementia report a great amount of unmet physical, psychosocial and existential needs, which can be improved by introducing palliative care earlier. Palliative care aims to improve people’s quality of life. Unfortunately, people living with dementia are disadvantaged when it comes to timely initiation of palliative care. Traditionally, research on this early introduction of palliative care has focused on cancer. A robust amount of evidence does suggests that for these patients, it improves quality of life and may even prolong life. Such evidence is not yet available in dementia. Healthcare professionals however need to know what early palliative care entails and should be informed about ‘advance care planning’, which is considered a key aspect.
At GBHI, Gillisen hopes to adjust an educational program focusing on advance care planning, which she developed and tested in nursing homes, to better fit the dementia population. Simultaneously, she hopes to learn from successful early palliative care trials in cancer, and transfer these learnings in her subsequent research in dementia. She tries to live a balanced life by doing sports, eating vegan, being grateful, and jumping on opportunities that broaden her horizon.
Bio: Joni Gillisen holds a degree in Social Work, a master’s degree in Social Policy from the Catholic University Leuven, and a postgraduate degree in Social Profit and Public Management from Ghent University, Belgium. She has finalized her joint PhD project, funded by the Research Foundation Flanders, within the inter-university and interdisciplinary End-of-life Care Research Group and the Center for Biomedical Ethics and Law. After working as an Atlantic Fellow at the Global Brain Health Institute (GBHI) in San Francisco, she will transfer to Harvard Medical School and The Dana-Farber Cancer Institute to pursue her research in palliative care, for which she received funding from the Belgian American Educational Foundation (B.A.E.F.) and the Fulbright Commission.