Reimagining Dementia in Estonia: Can Scotland’s Person-Centred Approach Inspire Change?

Reimagining care requires us to examine the foundations—systems, policies, and cultural beliefs—that shape how dementia is understood and addressed. Language, in this context, is never neutral. Terms such as ‘sufferer’, ‘victim’, or ‘demented’ contrast sharply with person-first expressions like ‘individual living with a dementia’, each carrying distinct implications for dignity, agency, and social inclusion.

This article draws on experiences from Estonia and Scotland—two nations with differing historical trajectories and policy frameworks—to explore how compassionate discourse is embedded, challenged, or overlooked within their respective dementia care landscapes.

The word compassionate may sound a little unfamiliar in the context of welfare in Estonia, but in this article, it has a broader meaning. It signifies emotional participation and caring, understanding and a desire to alleviate suffering. Compassion includes empathy and adds a willingness to act and help. In Scottish social work, the expression "compassionate care" is associated with human dignity, warmth and kindness.

Contextual Background: Dementia in Estonia

Estonia’s approach to dementia care is currently undergoing a period of reflection and gradual development. While a formal national dementia strategy has yet to be established, notable progress has emerged through grassroots organisations and community-led initiatives. Dementia Competence Centre and NGO Elu Dementsusega have pioneered peer-led support groups, public awareness campaigns, and participatory action research (Varik jt 2019, Varik jt 2022). Studies by Varik et al. (2019, 2022 and 2024) underscore how these initiatives foster empowerment, reduce social isolation, and contribute meaningfully to policy dialogue through lived experience and co-production.

Culturally, dementia remains a sensitive topic, often framed within familial responsibility and medicalised discourse (Putland ja Brookes 2024). Although public understanding is improving, stigma and limited visibility persist—particularly in rural areas and among older populations. The structure of the Estonian language itself does not offer very good possibilities for the development of widely accepted person-first terminology, which can shape how dementia is discussed and experienced in everyday life (Putland ja Brookes 2024).

Structurally, health and social care systems in Estonia operate largely in parallel, with limited formal integration. Dementia care is most commonly delivered through general practitioners, municipal home care services, and informal family networks, placing considerable emotional and logistical strain on unpaid carers. (Varik jt 2019, Varik jt 2022, Rätsep ja Bardone 2021). While some municipalities have piloted dementia-friendly environments and inclusive design principles, these remain isolated examples rather than standardised practice (Varik jt 2019, Varik jt 2024).

Estonia’s evolving discourse reflects both the challenges and opportunities of building a culturally responsive, person-centred dementia framework—one that bridges clinical, social, and community dimensions while recognising the central role of informal carers and local innovation.

The Scottish Shift: Toward Person-Centred Care

Scotland’s evolving dementia strategy reflects a decisive move toward rights-based, person-centred care.   The 2023 Everyone’s Story, sets out a 10-year vision shaped by lived experience and inclusive policymaking⁶. It emphasises early diagnosis, equity of access, and the importance of seeing dementia as a whole-life condition, not just a clinical label. (Scottish Government 2023).

Training frameworks such as Promoting Excellence⁷ support this vision by embedding compassionate, relational practice across health and social care. Developed by NHS Education for Scotland and the Scottish Social Services Council, the framework offers tiered learning for all staff working with people affected by dementia, reinforcing values of dignity, autonomy, and understanding (Scottish Government et al. 2021).

Public engagement has also deepened. Campaigns like Rethink Dementia challenge stigma and encourage communities to maintain social connections with those diagnosed, highlighting the value of continuity and inclusion (Scottish Government et al. 2024, Scottish Government 2025a).  Educational efforts have reframed dementia as an umbrella term for over 200 diagnoses, helping the public and professionals alike to understand its complexity and variability (Scottish Government et al. 2024, Scottish Government 2025a).

Language and policy documents now consistently reflect person-first terminology. The Charter of Rights for People with Dementia positions individuals as citizens with entitlements, not passive recipients of care. (Alzheimer Scotland 2009). This ethos is echoed in Scotland’s integrated care models and the Once for Scotland approach, which aims to standardise compassionate, coordinated support across regions.

A key innovation is the Getting it Right for Everyone (GIRFE) framework—a multi-agency model designed to deliver personalised care from young adulthood to end-of-life (Scottish Government 2025). GIRFE promotes continuity, shared decision-making, and a “Team Around the Person” approach, particularly beneficial for those with dementia who require tailored, evolving support.

Together, these developments mark a cultural and systemic shift: one that places the person—not the diagnosis—at the heart of Scotland’s dementia care.

The Delegation Visit: Observations & Reflections

The delegation included representatives from the following organizations: Pihlakodu AS (lead organisation), Ministry of Social Affairs, Mainor Ülemiste AS, Tallinn University of Technology (TalTech) and Dementia Competence Centre.

Whilst in Scotland, the delegation took the time to visit multiple leading institutions in their relative fields. The Dementia Service Development Centre (DSDC), University of Stirling; Centre for Person-centred Research Practice (CPcRP), Queen Margaret University and the SMART Home, Edinburgh Health and Social Care Partnership (EHSCP).

The delegation’s visit to Scotland aimed to explore best practices in health and social care, with a focus on person-centred service delivery, innovative spatial design, and youth engagement in elderly care. Key interests included understanding public funding models, examining technological and scientific collaboration. The delegation also sought a clear overview of Scotland’s health and social care structure—covering governance roles, funding mechanisms, integrated care models, and cross-sector collaboration. Emphasis was placed on how innovation and best practice are supported across the system.

Observations on reflection of the visit:

• Surprise relating to the complexity of the Health and Social Care landscape in Scotland including funding and structure.
• Delegates resonated with the need to change the social stigma of living with a dementia. 

One of the delegates summarised the trip as being beneficial as there were some ideas which were known to her, yet there were a range of new things which could be considered -reassuring her what they were doing was still relevant. 

Language Matters: Reframing Dementia Discourse

In Estonia, the term demented is still quite frequently used to describe a person with a dementia. Although linguistically derived from the medical diagnosis dementia, the word demented carries strong connotations in both Estonian and English—often evoking irrationality, unpredictability, and even danger (Putland ja Brookes 2024). This terminology, though widespread, subtly reinforces a narrative of decline and disconnection, reducing individuals to their diagnosis and overshadowing their personhood (Putland ja Brookes 2024).

As a consequence, people may internalise feelings of shame, inadequacy, or invisibility (Putland ja Brookes 2024). The absence of alternative, person-centred/led language in public discourse leaves many Estonians with dementia without the linguistic tools to assert their dignity or maintain a sense of identity. This can result in social withdrawal, diminished self-esteem, and a reduced role within family and community life.

The use of demented as a label exemplifies how language can entrench stigma. It positions the individual as “other”—someone whose cognitive impairment defines their entire identity (Putland ja Brookes 2024). In everyday conversation, the term may be used casually or pejoratively, further distancing people with a dementia from social inclusion. This linguistic framing influences healthcare interactions and family dynamics, where the person is perceived less as a whole individual and more as a set of symptoms to be managed.

By contrast, Scotland has made significant progress in reshaping dementia discourse through intentional language reform. Terms such as ‘person living with a dementia’ or ‘citizen with a dementia’ are now standard in public messaging, policy documents, and advocacy campaigns (Scottish Government jt 2021). These phrases place the individual first, recognising their experiences, relationships, and rights.

The difference between ‘demented’ and ‘person living with dementia’ is not merely semantic—it reflects a deeper cultural orientation towards care, dignity, and inclusion. Where the former risks dehumanising through reductionist labelling, the latter seeks to preserve identity and agency (Putland ja Brookes 2024). Reframing dementia discourse requires more than updated vocabulary; it demands a shift in societal attitudes, where language becomes a tool for empowerment rather than exclusion.

Language not only reflects how society views dementia—it actively shapes the identity of those living with it. The words used can either affirm humanity or erode it, influencing how individuals perceive themselves and how others relate to them. (Putland ja Brookes 2024, Sunjaya jt 2025). Health and social care professionals may focus on symptoms and deficits, using language that emphasises decline rather than capability. This can lead to paternalistic models of care, where individuals are spoken about rather than spoken to, and decisions are made on their behalf rather than in collaboration (Sunjaya et. al 2025). 

Implications for Health and Social Care Practice in Estonia

Insights from Scotland offer valuable direction for enhancing dementia-related health and social care practices throughout Estonia, particularly in the realms of professional training, policy advocacy and community engagement.  While Estonia’s care landscape is shaped by decentralised municipal services and a strong tradition of filial responsibility, Scotland’s emphasis on rights-based, person-centred approaches provides a compelling model for reform.

In terms of training, Scottish frameworks such as the Promoting Excellence pathway foreground relational care, trauma-informed practice, and inclusive communication (Scottish Government jt 2021). Adapting such models to the Estonian context could strengthen professional competencies and embed values of dignity and autonomy in everyday practice.  Incorporating lived experience into training – through unpaid carer narratives, peer educators, and reflective dialogue – would also help bridge the gap between theory and frontline realities (Varik jt 2019, Rätsep ja Bardone 2021). 

Policy advocacy in Estonia could benefit from Scotland’s experience with national dementia strategies and cross-sectional collaboration.  The integration of health and social care, while still evolving in Scotland, has fostered more coherent pathways for diagnosis, support, and long-term care.  Estonian health and social care professionals, NGOs, and researchers might draw on this to advocate for clearer policy mandates, sustainable funding, and improved coordination between municipal and national actors (Varik jt 2019, Varik jt 2022).

Community engagement remains a vital frontier.  Scotland’s dementia-friendly communities, co-produced initiatives and public awareness campaigns demonstrate how local action can shift stigma and foster inclusion.  In Estonia, expanding participatory platforms – such as support groups, intergenerational projects and cultural programmes – could empower carers and individuals living with a dementia to shape the services which affect them (Rätsep ja Bardone 2021). 

Ultimately, the Scottish experience offers not a blueprint, but a set of adaptable principles.  By investing in training, amplifying advocacy, and nurturing community-led change, Estonia can move towards a more integrated, compassionate and culturally responsive dementia care system. 

Challenges & Considerations for Adaptation           

Adapting person-centred dementia care models from Scotland to the Estonian context presents both promise and complexity. Cultural norms in Estonia often emphasise familial responsibility and privacy, which can limit public discourse and community-based interventions. Stigma surrounding dementia remains prevalent, particularly in rural areas, where awareness and access to services are limited (Varik jt 2019). 

Systemically, Estonia’s health and social care sectors operate in parallel, with minimal integration. This fragmentation complicates coordinated support and places disproportionate strain on informal carers. Municipal variation in service provision further exacerbates inequalities, with some regions lacking basic post-diagnostic support or dementia-friendly infrastructure (Varik jt 2022). 

Resource constraints also pose challenges. Workforce shortages, limited training opportunities, and uneven funding make widespread reform difficult to implement. However, thoughtful adaptation is possible. Strategies include embedding person-centred principles into existing training frameworks, fostering cross-sector collaboration, and piloting community-led initiatives that reflect local values and capacities.

Rather than direct replication, Estonia can draw on Scotland’s experience to co-create culturally responsive models—grounded in dignity, inclusion, and shared learning.

Conclusion: Toward Compassionate Change 

Estonia and Scotland are on their way to developing dementia services that would best support their populations. Estonia has already taken commendable steps in this direction, and the Estonian delegation also found that quite a lot has been done, but there is still a lot to do.

Reimagining dementia care in Estonia demands more than policy reform—it requires a cultural and discursive shift that places the person, not the diagnosis, at the centre of care. Insights from Scotland’s journey toward person-centred, rights-based practice offer valuable inspiration, but must be adapted with sensitivity to Estonia’s unique social fabric, linguistic landscape, and systemic realities.

This comparative exploration has highlighted the power of language to shape identity, the importance of integrated care structures, and the transformative potential of community-led innovation. The delegation’s visit underscored the appetite for change and the value of cross-border dialogue in fostering mutual learning and reflective practice.

Moving forward, Estonia’s path must be co-created, drawing on lived experience, professional insight, and international collaboration. By investing in inclusive training, amplifying unpaid carer voices, and reframing dementia discourse, Estonia can cultivate a care system that honours dignity, fosters connection, and embraces complexity.

Compassionate change is not a destination, but a shared endeavour. It begins with listening, continues through partnership, and flourishes when care is understood not as a task, but as a relationship.

Authors

Gavin W Bisset BSc (Hons) is a PhD candidate and policy professional with extensive experience across health and social care. His roles have spanned frontline healthcare, unpaid carer support, policy development, strategic planning, and public inquiries. His research and professional interests centre on dementia care, the experiences of unpaid carers, and the development of person-centred healthcare policy. Contact: gavin.bisset@pihlakodu.ee

Sandra Bisset MSc OT is a senior occupational therapy lecturer, practitioner and researcher in adult social care, with a focus on dementia, community engagement, and inclusive practice. She has contributed to multiple cross-sector initiatives aimed at improving outcomes for older adults and unpaid carers. Contact: sandra.bisset@ttk.ee