Old age, dementia and the end of life: a societal urgency, a scientific challenge

09-2020 to 09-2023

The overarching long-term research aim of the Aging and Palliative Care research programme is to generate new knowledge to better understand how to improve palliative and end-of-life care and endof-life decision-making, for older people and people with dementia and their family carers. State-of-the-art quantitative and qualitative research methods coming from the medical, social and psychological sciences, will be applied, and new methods will be developed to improve scientific evidence.

Next to performing research of high quality, the success of the programme is also dependent on the extent of international, interuniversity and multidisciplinary collaboration, and on the societal or clinical impact it generates. Therefore, the research programme also addresses strategic and dissemination aims. Strategic aims are to further strengthen and formalize international collaboration through joint research initiatives (e.g. the forming of a Reference Group on Aging and Palliative Care at the European Association of Palliative Care) and international mobility of staff (incoming and outgoing), as well as inter-university and multidisciplinary research collaborations through a formal collaboration with the University of Ghent and University Hospital of Ghent (e.g. with the Department of Geriatrics, and Department of Family Medicine) and joint PhD projects with other Belgian universities. Dissemination or valorization aims are to provide the knowledge base for effective societal dissemination to improve palliative and end-of-life care for older people and people with dementia, using a rigorous knowledge transfer strategy. Next to structured dialogues with relevant stakeholders in the field and dissemination of results to the academic and non-academic field, the projects also focus on developing and testing tools to guide implementation in practice. This will ensure the research is focused on generating fundamental knowledge that has large and concrete clinical or societal impact.

Specific national and international research projects will be conducted that fit these broad aims of the Aging and Palliative Care research programme. They build directly on the results coming out of previous work, specifically the need to better understand (1) how to improve palliative care for older people by developing and testing new models of palliative home care, and by using high-quality research designs integrating theory, and (2) how to optimally communicate with people with dementia and their family concerning the end of life, by using participatory research designs and new analysis techniques uncovering the what as well as the how in communication.

The two research projects that address these research gaps will be running in the coming three years and are summarized here. I have outlined the rationale, aims and objectives, and research methods.

FRANCQUI Stichting