Building a Regional Dementia Strategy: Delphi Study and Deliberative Dialogues Shape Policy

Dementia has become one of the defining health policy challenges of the twenty-first century, and the way governments respond to it is increasingly being shaped not only by experts behind closed doors but by the very people living with the condition. A new study published in BMC Health Services Research describes how researchers in Saxony-Anhalt, Germany’s fastest shrinking and fastest ageing federal state, built a comprehensive regional dementia strategy from the ground up using a structured, participatory process that combined a two-round Delphi survey with deliberative dialogues. The work, led by Christine Schiller, Gabriele Meyer and Anja Bieber of the Institute of Health, Midwifery and Nursing Science at Martin Luther University Halle-Wittenberg, offers one of the most detailed accounts to date of how a large and diverse group of interest holders can be brought together to agree on what a dementia strategy should actually contain.

The stakes in Saxony-Anhalt are unusually high. The state carries the highest dementia prevalence in Germany, a consequence of pronounced demographic ageing combined with sustained population decline that has thinned out services across large rural areas. Recognizing these structural pressures, the state government established the State Competence Center for Dementia Saxony-Anhalt in 2022 with a mandate to develop a regional Dementia Strategy. While more than a dozen countries have adopted national dementia strategies over the past decade, regional strategies such as this one are designed to respond to local demographic and structural realities that a national framework cannot fully capture. The research team’s task 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 family caregivers.

Methodologically, the study employed a mixed-method, two-phase participatory design. The first phase was a two-round Delphi process, a technique long used in health services research to distill group judgment from dispersed experts. Rather than restricting participation to clinicians or academics, the researchers deliberately recruited nine distinct interest-holder groups, including people living with dementia themselves, informal caregivers, health and social care professionals, policymakers, and civil society representatives. This breadth was a deliberate design choice: strategies built only on professional perspectives, the authors argue, risk overlooking the lived realities that determine whether policy objectives are meaningful in practice. Participants rated proposed objectives in the first round, and items that failed to reach agreement were re-rated in a second round, allowing the researchers to track where consensus emerged and where genuine disagreement persisted.

The numbers involved are striking for a process of this kind. In total, 406 participants completed the first Delphi round, and 262 of them returned for the second round, a substantial retention rate for a multi-stage survey. From an initial pool of 88 proposed objectives, 47 reached consensus in round one and a further 21 in round two. That left a residue of items where the groups could not agree, and rather than discarding them, the researchers moved to the second phase of the design: deliberative dialogues. Eighteen participants attended these facilitated sessions, which were structured to explore the selected non-consensus objectives in depth, allowing participants to articulate the reasoning behind their ratings, hear opposing views directly, and work toward refined formulations that a simple rating exercise could never produce.

The deliberative dialogues proved decisive for seven objectives that were ultimately refined and validated through discussion. The remaining 26 non-consensus items were thematically aggregated into broader strategic objectives, a technique that preserves the substance of contested proposals without forcing artificial agreement on narrow wording. Once the participant-driven objectives had been consolidated, the researchers aligned them with the relevant state ministries to ensure that every item in the final strategy was politically and administratively feasible. This alignment step, often absent from participatory exercises, is what distinguishes a genuine policy instrument from a wish list: each objective in the final document has a plausible pathway into government action.

The resulting Dementia Strategy comprises 40 strategic objectives organized across four main topics: social participation, medical and nursing care, support for people with dementia and their informal caregivers, and the promotion of dementia research. The breadth of these domains reflects a modern understanding of dementia as a condition whose impact extends far beyond the clinic. Social participation objectives address how people living with dementia can remain embedded in their communities, while the care objectives grapple with the organization and capacity of medical and nursing services. The support domain acknowledges the central role of family caregivers, who provide the majority of day-to-day care in Germany as elsewhere, and the research domain signals an ambition to build local evidence capacity alongside service provision.

Beyond the agreed objectives, the process surfaced a set of structural challenges that participants identified as barriers to any strategy’s success. These included shortages of services, particularly in rural areas, limitations in the health and care workforce, bureaucratic barriers that complicate access to support, and the heavy burden carried by informal caregivers. The researchers documented these as contextual factors relevant to implementation rather than as objectives in their own right, an analytical distinction that matters: a strategy can commit to improving care, but if the underlying workforce and administrative conditions are not addressed, implementation will stall regardless of how well the objectives are worded.

The authors are careful about what their study does and does not demonstrate. They present it as proof of the feasibility of a structured participatory approach for regional dementia strategy development, not as evidence that the resulting strategy will improve outcomes. The strategy, they write, provides a foundation for future action, and the development of a dedicated implementation strategy will be essential to translate the agreed objectives into practice. That caveat is familiar from the international experience with national dementia strategies, several of which have struggled to move from published documents to funded, monitored action. The Saxony-Anhalt team’s decision to involve ministries throughout the process is explicitly intended to reduce that implementation gap by ensuring ownership on the government side from the outset.

The study’s broader significance lies in its potential as a transferable model. Other regions facing demographic ageing, in Germany and across Europe, confront similar combinations of rising dementia prevalence, thinning rural services and strained caregiver networks. The combination of a large-scale Delphi survey spanning nine interest-holder groups with deliberative dialogues for contested items, followed by ministerial alignment, offers a replicable template for evidence-informed and participatory health policy development. The researchers also emphasize the contribution of the people whose voices are most often absent from such exercises: people living with dementia and informal caregivers, whose perspectives, the authors note, substantially enriched the development of the strategy. The study received ethical approval from the Ethics Committee of the Medical Faculty of Martin Luther University Halle-Wittenberg and was funded by the Ministry of Labour, Social Affairs, Health and Equality of Saxony-Anhalt, the regional associations of the statutory long-term care insurance funds, and the Association of Private Health Insurance, none of which influenced the study design or analysis. Whether the 40 objectives can be converted into measurable improvements in the lives of people with dementia in Germany’s most ageing state will now depend on the implementation phase, but the process itself has already demonstrated that consensus across patients, families, professionals and policymakers is achievable when the method is designed to hear them all.

Subject of Research: Participatory development of a regional dementia strategy using a Delphi study and deliberative dialogues in Saxony-Anhalt, Germany.

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

Article References: The development process of a regional dementia strategy: a Delphi study and deliberative dialogues. (n.d.). https://doi.org/10.1186/s12913-026-15595-8

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15595-8

Keywords: dementia, regional health policy, dementia strategy, participatory research, Delphi method, interest-holder engagement, deliberative dialogues, Saxony-Anhalt, health services research, informal caregivers, social participation, consensus building