The development process of a regional dementia strategy: a Delphi study and deliberative dialogues

Over the past decade, numerous countries have adopted national dementia strategies to address the growing societal impact of dementia. In Germany, six federal states have regional strategies to address local demographic and structural challenges, such as those in Saxony-Anhalt, Germany's fastest shrinking and ageing federal state with the highest dementia prevalence. In 2022, the State Competence Center for Dementia Saxony-Anhalt was established to develop a comprehensive regional Dementia Strategy. The aim of this study was to generate consensus on the objectives required to ensure adequate care and improve the quality of life of people living with dementia and their families in Saxony-Anhalt. To achieve this, the study used a participatory approach to identify and prioritize strategic objectives for the regional Dementia Strategy.

A mixed-method, two-phase participatory design was employed. First, in a two-round Delphi process ratings from nine interest-holder groups were collected, including people living with dementia, informal caregivers, professionals, policymakers, and civil society representatives. Second, deliberative dialogues explored selected non-consensus objectives. Consolidated objectives were thematically grouped and aligned with state ministries to ensure policy feasibility.

In total, 406 participants completed round 1, with 262 participants completing round 2; 18 participants attended deliberative dialogues. Of 88 initial objectives, 47 reached consensus in round 1, 21 more in round 2, and seven were refined and validated through deliberative dialogues. The remaining 26 non-consensus items were thematically aggregated into broader strategic objectives. After ministerial alignment, the final Dementia Strategy comprises 40 strategic objectives across four main topics: social participation, medical and nursing care, support for people with dementia and informal caregivers, and promotion of dementia research. Participants also identified structural challenges, including service shortages, workforce limitations, bureaucratic barriers, and caregiver burden. These were documented as contextual factors relevant to implementation.

This study demonstrates the feasibility of a structured participatory approach for regional dementia strategy development. The resulting strategy provides a foundation for future action, while successful implementation and the development of an implementation strategy will be essential to translate agreed objectives into practice. The approach may serve as a transferable model for evidence-informed and participatory health policy development.