DEDICATED | Desired Dementia Care Towards End of Life


Palliative care for people with dementia is complex and has a multidisciplinary character. In practice, palliative care is often too fragmented and there is not enough collaboration between professionals and organisations. This can have a negative influence on the quality of care.  

Caregivers still have inadequate competences in the field of palliative care in caring for people with dementia.  On the one hand, especially nurses indicate lack of knowledge in palliative basic care for people with dementia, mainly concerning symptom burden and variety in care demand (physical, psychological, social and spiritual). On the other hand, it is challenging for professional caregivers to talk with people with dementia and their loved ones (in time) about the care in the last phases of life and the approaching end of life. 


This project consists of two separate but interrelated parts: 

Part 1 is about developing competences on the one hand in the field of knowledge about palliative care for people with dementia and on the other hand about timely and adequate end of life communication with these people and their loved ones, in the home and nursing home setting. 

In this subproject a competence toolkit about knowledge (in basic palliative care) and end of life communication is developed, implemented and evaluated. This toolkit is based on identified barriers and needs of people with dementia , their loved ones and experienced gaps in professional caregivers and an inventory of existing learning materials that match these barriers and needs . The knowledge part of the toolkit aims at supporting nurses in identifying and intervening with respect to burdensome symptoms like pain and relevant care problems in the palliative phase. The communication part of the toolkit shall be interdisciplinary. At home, it serves mainly the nurses of home care organisation, general practitioners and dementia  case managers while in the nursing homes it supports nurses, nursing home physicians, psychologists and mental carers. The communication part aims at a person centred and confident way of having a conversation with people with dementia and their loved ones about the approaching end of life, care goals (Advance Care Planning), and it supports in Shared-Decision Making (SDM). The toolkit uses innovative learning methods like ‘just-in-time learning’, which includes learning in the work environment with casuistry. After that, the toolkit will be implemented and evaluated using validated questionnaires with the following outcomes: the experienced improvement of knowledge and communication by the involved professional caregivers, the satisfaction of the people with dementia and their loved ones about the provided care and the comfort the loved ones experienced at the decease of their relative.  

Part 2 is about interdisciplinary collaboration, not only in the home and nursing home settings, but also in case of a transition from home to the nursing home, to guarantee continuity of care. The current barriers in collaboration are identified using the ‘world café method’ and questionnaires. Furthermore, an overview shall be made listing existing collaboration models and tools. From this overview, the most applicable strategy will be selected and scientifically evaluated.                                         


Part 1: 

  • Insight in the barriers and needs regarding knowledge and end of life communication in the field of palliative care of professional caregivers, people with dementia and their loved ones. 
  • A scientifically evaluated, national distributable competence toolkit. 
  • Nurses of the participating organisations recognize burdening symptoms (like pain) and care problems better and act more properly and personally to people with dementia and their loved ones. 
  • Caregivers feel confident to discuss end-of-life issues on time and to provide preferred quality end-of-life care. 

Part 2: 

  • Insight in the barriers in the field of interdisciplinary collaboration at home (with home care), in the nursing homes and in the transition between these two settings.
  • A scientifically evaluated, national distributable collaboration strategy.
  • In the participating organisations, testable interdisciplinary collaboration agreements (like interdisciplinary care goals, plans and meetings) are made, based on a chosen suitable collaboration strategy. 
  • During the transition from home to the nursing home, the participating organisations provide a completely personalised ‘warm’ transition. 

The toolkit and the collaboration strategy will be distributed within the care organisations that are members of the participating academic workplaces, the networks of palliative care and the chains of dementia care. In addition, they will be used in education via our project partners. 

For this project 1 million euros is made available by ZonMw, the institute that stimulates health research. Important cooperating partners include Zuyd University of Applied Sciences, Huis voor de Zorg, The Living Lab in Ageing & Long-Term Care, Vivantes, Envida, Hulp bij Dementie, Vilans, V&VN, IKNL, CZ, Expertise Center for Palliative Care MUMC +, Consortium Palliative Care Limburg and Brabant, and Propallia, Netwerk Palliatieve zorg Westelijke Mijnstreek. Zuyderland Zorgcentra is the secretary of the project.

Sascha Bolt, PhD student,
Judith Meijers, projectleader/senior researcher,

The core team of the project (clockwise) Saskia Wolters, Els Knapen, Lara Dijkstra, Sascha Bolt and Judith Meijers:

The entire project group with the participating cooperation partners: