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

The research, published in the journal Advances in Therapy, examined 119 patient–caregiver dyads recruited from two hospitals in a coastal province of eastern China: a large general tertiary hospital and a specialized cancer center. Between September 2024 and July 2025, researchers led by Peng Zhang of Shanghai University of Traditional Chinese Medicine and Feifei Chen of Shanghai Skin Disease Hospital surveyed patients diagnosed with colorectal cancer and the informal caregivers—overwhelmingly spouses and adult children—who accompanied them. Both members of each pair completed the same health questionnaire, allowing the team to compare quality of life within dyads on identical terms for the first time in this cancer population.

The instrument at the heart of the study was the EQ-5D-5L, a standardized health measure used worldwide. Respondents rate themselves across five dimensions—mobility, self-care, usual activities, pain and discomfort, and anxiety and depression—on five severity levels, and the responses are converted into a single utility score running from a floor of −0.391 to a ceiling of 1, representing full health. Because the scores are bounded in this way and cluster heavily near the top, the team used Tobit regression, a statistical approach designed for outcomes that are limited to a range, rather than ordinary linear models that could distort results at the ceiling. The work was anchored conceptually in the Dyadic Illness Management Theory and the Stress Process Model, frameworks that treat patients and caregivers as a single interacting unit rather than two separate clinical subjects.

The numbers told a striking story. Patients averaged a utility score of 0.747, reflecting the substantial burden of a disease that 79.83 percent of them reported as causing pain or discomfort and that 63.02 percent said interfered with their usual activities. Caregivers, by contrast, averaged 0.936—a figure close to population norms for healthy Chinese adults—yet beneath that apparently healthy surface lay a quieter burden. Among caregivers, pain and discomfort was the most frequently reported problem at 44.54 percent, followed closely by anxiety and depression at 43.70 percent. Nearly all caregivers reported no problems with mobility, self-care, or usual activities; the damage, in other words, was concentrated in the psychological dimension.

And that psychological dimension proved to be the hinge of the entire study. After adjusting for a prespecified set of patient and caregiver covariates, the Tobit analysis showed a statistically significant positive association between patient and caregiver utility scores (p = 0.045): when patients fared better, so did their caregivers. More revealing still, when the researchers modeled each caregiver dimension separately as a binary outcome, patients’ overall health status was significantly associated with caregiver anxiety and depression but not with caregiver pain. For every increase in a patient’s utility score, the odds of the caregiver reporting anxiety or depression problems fell dramatically—an odds ratio of 0.112, statistically significant at p = 0.026. The message is uncomfortable and clarifying at once: the caregiver’s mental health tracks the patient’s physical health more tightly than any other element of the caregiving experience.

The analysis also identified who among the caregivers was most vulnerable. Caregivers of patients at more advanced clinical stages reported worse health-related quality of life, consistent with the escalating symptom burden—nausea, bowel dysfunction, incontinence, and often postoperative stoma care—that advanced colorectal cancer imposes on households. Longer time since diagnosis, by contrast, predicted better caregiver quality of life, a pattern the authors interpret cautiously as possible adaptation. Previous research on family caregivers has found that roughly two years after a relative’s cancer diagnosis, caregivers’ well-being converges back toward that of the general population, and the present study’s average of about 460 days since diagnosis sits within that recovery window. Educational attainment also mattered: caregivers with higher education reported better quality of life, plausibly reflecting stronger health literacy, more effective coping strategies, and more favorable socioeconomic circumstances.

One counterintuitive finding deserves particular attention. Caregivers who provided more than three hours of care per day were less likely to report anxiety and depression than those providing fewer hours. The authors suggest that moderate, sustained involvement may build familiarity with the patient’s condition and strengthen caregiving self-efficacy, whereas caregivers contributing less time may remain tethered to outside work and other stresses that compound their worry. Intriguingly, the protective pattern did not extend to caregivers providing six to nine hours daily, hinting that the relationship between care hours and psychological well-being may be non-linear—a curve rather than a line—that larger studies will need to map.

The team took unusual care to stress-test its conclusions. Sensitivity analyses repeated the regressions with the full set of initially considered covariates, applied a two-part model separating the probability of reporting perfect health from the distribution of scores below it, and employed bootstrap resampling to gauge the stability of the estimates. The direction and magnitude of the effects held broadly consistent across these tests, though the bootstrap confidence interval for the patient–caregiver association did include the null value, signaling some statistical imprecision in a sample of this size. The authors are candid about this limitation, as well as the inherent constraints of a cross-sectional design: without longitudinal follow-up, the data cannot establish whether improving a patient’s health would causally lift a caregiver’s, only that the two move in lockstep. The sample was also drawn from a relatively developed region, and the authors note that socioeconomic gradients in caregiver health could be steeper in less affluent settings.

Even with those caveats, the implications for oncology practice are difficult to ignore. Five-year survival for colorectal cancer has climbed from roughly 50 percent in the mid-1970s to 65 percent between 2011 and 2017, meaning more households than ever live with the disease for years. With more than 1.92 million new colorectal cancer cases worldwide in 2022 and over 510,000 in China alone, the informal caregiving workforce is measured in the millions. Yet caregivers are almost never assessed in clinic; they appear on hospital wards as escorts, not as patients. This study suggests that omission is a clinical blind spot. Because caregiver distress concentrates in anxiety and depression, and because that distress mirrors the patient’s own health status, the authors argue for routine caregiver screening embedded in colorectal cancer nursing care and survivorship planning, with psychologically informed supportive care offered particularly to caregivers of patients with advanced disease or recent diagnoses. The patient and the caregiver, the data insist, are one system. Treating only half of it means treating the disease while ignoring the household that carries it.

Subject of Research: Health-related quality of life in colorectal cancer patients and their informal caregivers

Article Title: Association Between Health-Related Quality of Life In Patients with Colorectal Cancer and Their Informal Caregivers

Article References: Zhang, P., Chen, F., Jia, Y., Hong, L., Wang, Z., Zhao, J., Yang, Y., & Jiang, S. (2026). Association Between Health-Related Quality of Life In Patients with Colorectal Cancer and Their Informal Caregivers. Advances in Therapy. https://doi.org/10.1007/s12325-026-03789-9

Image Credits: AI Generated

DOI: 10.1007/s12325-026-03789-9

Keywords: colorectal cancer, informal caregivers, quality of life, EQ-5D-5L, patient–caregiver dyads, anxiety and depression, caregiver burden, cancer survivorship, supportive care, cross-sectional study, China, psychological distress

The intervention, known by its Dutch wordplay name that translates roughly as “They Are Not Mental?!” (TANM), was designed to strengthen the resilience of informal caregivers with a migration background whose loved ones live with a suspected mental illness. It pursued three short-term goals: encouraging open conversations about mental health taboos, improving understanding of mental illnesses and available support, and fostering trust between migrant families and the healthcare sector. The program unfolded in three phases. First, four coordinating organizations recruited and trained voluntary “ambassadors”—peer educators who shared participants’ migration backgrounds and, in some cases, their caregiving experiences. Second, ambassadors facilitated three peer education sessions, delivered in the dominant language of each group, covering mental health and the role of culture, specific conditions such as schizophrenia and depression, and the role of family alongside formal support options. Third, caregivers identified during the sessions could be referred for tailored follow-up support, either in group training or one-on-one consultations with a Family-Experience-Expert, a professional who draws on personal lived experience of caring for someone with mental illness.

What makes the new study methodologically interesting is its realist evaluation design. Rather than simply asking whether TANM succeeded, the researchers, led by Malin H. L. Hollaar of Erasmus University Rotterdam, asked how, for whom, and under what circumstances it worked. Realist evaluation, developed by Pawson and Tilley, models outcomes as the product of Context-Mechanism-Outcome (CMO) configurations: specific contextual conditions activate specific mechanisms, which in turn generate outcomes. The team began with an Initial Program Theory built from twelve interviews and a focus group, then tested and refined it during the 2024–2025 implementation period using 27 semi-structured interviews with ambassadors, participants, and program staff, 10 observations of peer education sessions, and 76 anonymous post-session questionnaires. During this cycle, 11 ambassadors facilitated 11 groups attended by 138 participants, most of them women, with considerable variation in age, cultural background, and caregiving experience. Abductive and retroductive reasoning moved the analysis back and forth between the data, the initial theory, and concepts such as social learning, ultimately producing ten refined CMO-configurations validated in a focus group with the coordinating organizations.

The first cluster of findings concerns the taboo on mental illness itself. Nearly half of the participants—47.3 percent—reported experiencing a taboo around mental illness, with no significant differences between cultural groups, suggesting that shame and silence are not the property of any single community. Yet the degree to which groups became more open varied substantially, and the explanation lay in context. Groups whose ambassadors were already acquainted with participants, shared their language and cultural background, and remained available beyond the formal sessions were noticeably more open and engaged. In unfamiliar groups, conversations stayed reserved. Questionnaire analyses confirmed significant associations between prior acquaintance and the sharing of personal experiences, reinforcing that familiarity is not a soft nicety but a structural condition of disclosure.

The mechanisms behind this openness were fundamentally relational. Ambassadors worked as trusted peers, sharing reliable information while acknowledging alternative explanations for mental illness—including attributions to black magic, divine punishment, or the evil eye—rather than dismissing them. Trust emerged as the prerequisite for everything else, a point program staff emphasized by noting that shame and taboo exist in all cultures, and that the only way around them is building enough comfort for people to speak. Ambassadors deliberately engineered safety: setting explicit confidentiality rules, or encouraging indirect sharing. One ambassador described a participant who asked questions “on behalf of a friend” for two full sessions before revealing in the third that the friend was herself. Another described modeling vulnerability—sharing her own experiences or relatable anecdotes—which could trigger a domino effect of disclosures across the group, provided a basic level of trust was already in place.

The second cluster of findings addressed the bridge between informal family care networks and formal healthcare services. Ambassadors recruited participants through their peer role, enabled by their social capital and connections in both formal and informal networks. Recruitment strategies mattered enormously: ambassadors who drew on their own existing community groups or used one-to-one invitations generated many more referrals to the follow-up support phase than ambassadors who appeared as guest speakers in unfamiliar groups. Cultural alignment even shaped how the intervention was introduced. Some ambassadors framed the sessions as discussions about “taboos” rather than naming mental illness upfront, given the cautiousness such topics provoke. The researchers also found that TANM’s Dutch title lost its stigmatizing-ironic wordplay among non-native speakers—its primary target audience—an unexpected barrier to communication.

Clusters three and four traced the path to actual help-seeking and the unexpected role of social support. Before participants could seek help, many first had to recognize themselves as informal caregivers at all, since in many cultures caregiving is framed as a natural family duty rather than a distinct role, and seeking outside help can feel like failing that duty. Overcoming fear and distrust toward formal institutions—including fear that a child might be removed from the home, or wariness rooted in earlier negative encounters with providers—required trusted, independent-seeming guides such as ambassadors and the Family-Experience-Expert. Knowledge of the Dutch care system was transmitted through shared frames of reference, allowing ambassadors to contextualize advice in culturally recognizable terms; one ambassador explained how she could understand a participant consulting an imam or receiving ruqya, a form of spiritual healing involving Quranic recitation, and build on it rather than dismissing it. Strikingly, the researchers discovered that some participants joined primarily for social connection and emotional support rather than information, revealing a psychosocial spillover effect the intervention’s designers had not anticipated. In some cases, peer contact continued long after the formal sessions ended.

The study’s implications cut two ways. On one hand, the findings demonstrate that “being a peer” is not a fixed identity but a relational position constructed through shared culture, language, religion, or lived experience—which explains why the Family-Experience-Expert, whose similarity to participants was experiential rather than cultural, could build trust just as effectively. The ambassadors’ role modeling aligns closely with Bandura’s social learning theory: participants adopt behaviors when demonstrated by someone perceived as similar to themselves, and continued availability reinforces that change over time. On the other hand, this centrality exposed a structural vulnerability. Ambassadors described their roles as demanding, emotionally taxing, and extending well beyond the intervention period without supervision, structural support, or adequate compensation—a pattern documented previously among peer educators in HIV/AIDS prevention and workplace mental health. The researchers recommend structured support and fair compensation for ambassadors, mechanisms for transferring the Family-Experience-Expert’s experiential knowledge rather than concentrating it in a single person, and recruitment through ambassadors’ own groups or individual invitations rather than guest-speaking arrangements.

Perhaps the most sobering conclusion is that even a well-designed, culturally sensitive intervention cannot close the gap alone. Persistent structural barriers—language difficulties, jargon-heavy communication, culturally insensitive practices, and negative past experiences with care professionals—continued to shape participants’ trust and help-seeking, and these lie largely beyond the scope of any peer education program. The authors are explicit that interventions like TANM are a necessary but partial response, effective only when accompanied by system-level investment in culturally sensitive communication and care practices. Future evaluations, they argue, should track longer-term outcomes such as resilience and sustained help-seeking, and researchers working with underserved groups should ask whether the barriers lie within communities or within the research approaches themselves. For migrant caregivers navigating stigma, fear, and family expectations, the study suggests that the most powerful lever remains deceptively simple: someone like them, available over time, who understands both languages—the literal one and the cultural one.

Subject of Research: Realist evaluation of a peer education intervention supporting migrant informal caregivers of people with mental illness in Rotterdam.

Article Title: Navigating Stigma and Support: Realist Evaluation of Support for Migrant Informal Caregivers of Loved Ones with Mental Illness

Article References: Hollaar, M. H. L., Buis, P., Smedts, M., Uysal-Bozkir, Ö., Kocken, P. L., & Denktaş, S. (2026). Navigating Stigma and Support: Realist Evaluation of Support for Migrant Informal Caregivers of Loved Ones with Mental Illness. Community Mental Health Journal. https://doi.org/10.1007/s10597-026-01728-0

Image Credits: AI Generated

DOI: 10.1007/s10597-026-01728-0

Keywords: informal caregivers, migration background, mental illness, peer education, realist evaluation, stigma, trust, resilience, help-seeking, culturally sensitive care, social support, Rotterdam

The study is innovative in its use of the Delphi technique, a structured communication process that seeks to achieve a converged opinion among a panel of experts through multiple rounds of questioning. By transitioning this traditional methodology into an online format, the research team effectively expanded the reach and representation of participants. This approach not only fosters a rich dialogue among experts but also enhances the diversity of perspectives considered in developing the core needs screening items. The results are expected to significantly inform practice and policy in caregiver support programs.

One key aspect of the research addresses the multifaceted challenges faced by informal caregivers. These individuals do not only manage the physical care of their loved ones; they are also confronted with emotional, social, and financial strains. Understanding these diverse challenges is paramount in creating an effective screening tool. By aggregating insights from experts in gerontology, psychology, and social work, the study aims to capture a comprehensive view of caregiver needs, thus laying the foundation for more tailored interventions.

Additionally, the study intends to assess the correlation between caregiver strain and the adequacy of support systems currently available to them. Prior studies have demonstrated that caregivers often feel underprepared or overwhelmed, which can lead to adverse health outcomes for both the caregiver and the care recipient. By identifying specific areas where caregivers require support, the research team hopes to drive policy changes that can alleviate these burdens and improve overall health outcomes.

The utilization of online platforms for this research is particularly noteworthy, as it allows for greater flexibility and accessibility for participants. This adaptation is crucial in engaging a wide array of voices, especially from caregivers who may have limited time due to their commitments. Online methodologies can streamline data collection and encourage participation from those who may otherwise feel marginalized or too busy to engage in traditional study formats. As the digital landscape evolves, such adaptive strategies are becoming increasingly important in research.

Another compelling aspect of Lou et al.’s study is the emphasis on culturally responsive care. As caregiving is culturally nuanced, the researchers are tasked with ensuring that the developed screening items resonate with a diverse population. This aspect highlights the importance of integrating cultural competence into caregiver support services to ensure inclusivity and effectiveness. By doing so, the study aims to pave the way for equitable solutions that address the unique circumstances of different caregiver demographics.

The anticipated outcomes of this research are profound, particularly in the context of policy implications. Identifying core needs within caregiving environments could lead to the development of targeted educational programs, resource allocation strategies, and support networks. Policymakers will be equipped with data-driven insights that underscore where investments are most needed, ultimately leading to enhanced support systems for informal caregivers. This systemic change is necessary to foster a healthier caregiving environment where caregiver well-being is prioritized.

Furthermore, the findings from this study will contribute to the existing literature on caregiver support, providing a research-backed foundation for future studies and interventions. As the field of gerontology continues to expand, it is crucial that researchers continuously update and refine their understandings of caregiver needs. The likelihood of replication and further exploration of these findings in diverse settings will enhance the overall body of knowledge, ultimately benefiting caregivers and their families.

This research could also serve as a catalyst for a cultural shift in how society views caregiving. As informal caregivers often undertake critical roles without formal recognition, raising awareness about their needs can enhance public understanding and appreciation for their contributions. By framing caregiver support as a societal responsibility, the study underscores the importance of community involvement in addressing these pressing issues.

As we look toward the future, the importance of investing in the well-being of informal caregivers cannot be overstated. As more individuals find themselves in caregiver roles, systems of support must evolve to meet the growing demands. By focusing on a preventive and proactive approach, interventions can be designed to reduce strain and improve the quality of life for both caregivers and care recipients.

Moreover, the integration of caregiver needs into broader health care policies could transform the landscape of elder care. Hospitals, nursing homes, and community organizations are positioned to benefit from this research by adopting a more caregiver-centered approach. Training healthcare professionals to recognize and address the requirements of caregivers can lead to a more holistic model of care that supports both patients and those who care for them.

In conclusion, Lou et al.’s innovative research introduces a critical dialogue about the significance of core needs in the realm of informal caregiving. The online modified Delphi study represents a forward-thinking approach that not only addresses current gaps in knowledge but also sets the stage for future advancements in caregiver support. By prioritizing the needs of caregivers, we pave the way for a more compassionate and equitable healthcare system that values every individual’s contributions, no matter their role.

The outcomes of this study will undoubtedly reverberate throughout healthcare systems, shaping how we view and support informal caregivers. As we anticipate the publication of the findings, it is crucial that stakeholders across sectors engage with this research, fostering an environment where caregivers are equipped to thrive.

Subject of Research: Core needs screening items for informal caregivers of older adults

Article Title: Core needs screening items for informal caregivers of older adults: an online modified Delphi study

Article References:

Lou, V.W.Q., Leung, D.K. . & Mao, S. Core needs screening items for informal caregivers of older adults: an online modified Delphi study. BMC Geriatr 25, 824 (2025). https://doi.org/10.1186/s12877-025-06443-1

Image Credits: AI Generated

DOI: 10.1186/s12877-025-06443-1

Keywords: Informal caregivers, core needs, Delphi study, gerontology, caregiver support, aging population, healthcare policy, cultural competence