SPAN+: Empowering people with dementia

BACKGROUND For experiencing wellbeing, it is imperative that people with dementia (PwD) feel empowered to remain active and involved in society. Thereto, this mixed-methods Action Research (AR) project aims to deliver an effective empowerment intervention applicable for PwD at home and in care homes. Jointly, researchers, PwD, (in)formal carers, and case managers for PwD will: 1) perform a European survey of current empowerment interventions, identify effective and usable elements and implementation strategies; 2) explore needs and preferences of PwD and carers about empowerment in daily life; 3) adapt an existing empowerment intervention and investigate its applicability and (cost)effectiveness; 4) determine, based on the European survey, how the intervention can be integrated adequately within the range of related interventions in Europe (specifically the Netherlands); 5) publish and disseminate the empowerment-intervention, with implementation guidelines. We chose to adapt an existing intervention because this intervention, SPAN, focuses on self-management, has a strong empirical base and innovative elements while the availability of empowerment interventions seems to be limited. SPAN stands for Social involvement, Pleasant activities, being physically Active and being Needed and was developed for people with young-onset dementia. It is unclear when and how to apply an empowerment-intervention such as SPAN in older people and how this relates to other empowering interventions, such as the evidence-based COTiD program. Also, it is unknown how these and possible other interventions may be complementary. Importantly, none seem to be developed for PwD in care homes. DESIGN Action Research with thorough methods of a) intervention development, i.e. Intervention Mapping, b) process evaluation (framework of Leontjevas et al. [1]), and c) effect evaluation by embedding two RCTs. AR is a cyclic research process in which participants plan, act, reflect on the results, and modify the plan for the next cycle, repeated until they achieve their goal [2]. In this study, 3 AR cycles are run. Cycle 1: Map current empowerment interventions by a European digital survey; explore empowerment needs in focus groups and set intervention targets. Select the intervention’s objectives, outcomes, elements, and applicable behavioral change theories. Cycle 2: Develop, pretest and evaluate pilot-intervention SPAN+. Cycle 3: Evaluate SPAN+ in two RCTs (at home vs. in care homes) about the (cost)effectiveness for self-management abilities, quality of life, neuropsychiatric symptoms of PwD; burden and sense of competence of informal carers; burnout and work satisfaction of formal carers. After critical evaluation, SPAN+ is adapted and published and its implementation started. TARGET GROUP PwD at home and in care homes. Other stakeholders are their informal carers, case managers and care home staff. METHODS Three groups run the project. A working group of main stakeholders performs the project and consists of a researcher, PwD and carer, project leader and 4 care professionals (2 for PwD at home, 2 for PwD in care homes). The project group monitors the project’s progress. An advisory board with representatives of relevant bodies serves as a sounding board for the other groups. DELIVERABLES European overview of currently available empowerment-interventions and their elements; applicable, (cost)effective empowerment intervention for PwD at home and in care homes; insight into how it can improve or replace other existing interventions; factsheet on the project’s results and the intervention; implementation guide and start of implementation; PhD-thesis and scientific publications. PWD AND CARERS As per the AR design, PwD and carers are part of the project’s working group and thus represented in all project phases, including the writing of this proposal. Further, they participate in the focus groups on the basis of which the intervention is adapted, the panel review for confirming the adaptations, the interpretation of the study results. Also, they comment on benefits, user friendliness and possible barriers and facilitators as users of the intervention in the (pilot) evaluation. FEASIBILITY Feasibility is guaranteed by: our knowledge on development, evaluation, education, implementation of care innovations; our experience with running large studies in dementia care; and the infrastructure of our care networks. With the involvement of Alzheimer Europe and the COTiD network, we can study and increase empowerment with international input and perhaps create international dissemination potential in the future. Alzheimer Europe is THE representative of PwD and has a large network of national associations, facilitating the communication and implementation of study results.