Summary DEDICATED project
DEDICATED started in September 2017 in response to practical questions from healthcare professionals about providing palliative care for dementia. DEDICATED is carried out within the Living Lab in Aging & Long-Term Care Limburg (AWO-L). The AWO-L is a partnership between Maastricht University, mbo and hbo education and nine healthcare organisations. Zuyderland is the coordinator of the project. The healthcare organizations Zuyderland, Vivantes, Envida, the Networks Hulp bij Dementie Westelijke Mijnstreek and Parkstad and the Network Palliative Care Westelijke Mijnstreek are participating in DEDICATED. Gilde (mbo) and Zuyd (hbo) were also involved to ensure the connection with education. The advisory board included national partners such as PZNL, IKNL, Alzheimer Nederland, Vilans, V&VN and Burgerkracht. To better equip healthcare professionals and students to provide palliative dementia care, we developed a DEDICATED approach in co-creation with them.
The foundation of the method
Before we started the co-creation process, we researched what is needed for good palliative dementia care. During this needs assessment, we conducted several studies (such as literature and questionnaire research and interviews) in which different perspectives were discussed. We interviewed people with dementia themselves, bereaved family caregivers, and healthcare professionals. The results of all these studies (all published), summarized in a number of core themes, formed the foundation for the DEDICATED method. These core themes include: awareness of the palliative phase, getting to know each other, end-of-life communication (ACP), coping with pain and misunderstood behaviour, moving to the nursing home and interprofessional collaboration in the field of proactive care planning in the nursing home.
The co-creation process
The core themes formed the basis for developing the 'DEDICATED method'. This consists of practical materials that support healthcare professionals in providing palliative care to people with dementia. In addition, the method contains didactic methods to train healthcare professionals and students in the application of the materials. We developed all materials in co-creation with healthcare professionals, client representatives and teachers from mbo, hbo and wo care education. We used principles from participatory action research, co-design and appreciative inquiry. An equal collaboration between researchers and members of the target group of the research (in this case healthcare professionals) is central to this. The co-creation process was also iterative: the healthcare professionals involved collected interim feedback on developed materials from their colleagues. Parallel to the materials, we developed a training to familiarize future DEDICATED ambassadors with the use of the DEDICATED materials and their implementation in the department. This also included enthusing and informing colleagues. In addition, we developed a train-the-trainer program to equip some of the ambassadors as trainers for new ambassadors. The materials can be found at our partners Vilans, V&VN and Palliaweb PZNL and our own website www.dedicatedwerkwijze.nl.
Impact
Meanwhile, 50 ambassadors have been trained to spread the DEDICATED apporach in their organization. Four of them have been further trained as trainers. In this way, further dissemination of the working method is made possible for and by professionals from the field. The impact of the apporach is that people are more aware of the importance and applicability of palliative care for dementia. It encourages healthcare professionals to have timely discussions about desired (future) care with people with dementia and their families, and to further seek collaboration with colleagues. There is also more attention for knowing the life story and how this can be used to provide person-oriented and holistic palliative care.
DEDICATED is gaining more and more name recognition, partly through presentations at national conferences and through the broad network of the project group members. There is a lot of enthusiasm among various organizations in Limburg, but also nationally and internationally (such as the Netherlands Antilles), to get started with the approach. DEDICATED also has an impact on a scientific level, as evidenced by the many publications (n=26), two dissertations and thesis projects (n=21) that followed from this project. We published findings from our research in international scientific journals as well as in national (specialist) journals. We gave policy advice on the development of the new Dementia care standard, so that attention is also paid to palliative care from diagnosis.
DEDICATED also made an impact on education and was intertwined in mbo, hbo and wo curricula for, among others, nursing students and dementia case managers and within the education hub of O2PZ in which teachers were trained and it was part of a COP meeting.
