This article draws on research involving people with lived experience of dementia, caregivers, and dementia professionals from Italy, Ireland, Israel, Australia, the Netherlands, the United States, the United Kingdom, and Northern Ireland. Their insights offer a roadmap for a more humane, compassionate, connected, and creative approach to dementia care, one in which technology, community, creative expression and meaningful engagement work together.
*Note:To protect the privacy of all participants, their names have been intentionally omitted and replaced with pseudonyms. Their professional roles and countries in which they live and practice, however, are accurately represented.
Authors: Maria Gialama, Practitioner Psychologist and Researcher at Maynooth University’s Department of Psychology, Joanne McVeigh, Assistant Professor of Psychology, Maynooth University, Mac MacLachlan, Professor of Psychology & Social Inclusion, and Co-Director of the ALL Institute, Maynooth University and Georgios Hadjigeorgiou, Professor of Neurology, Medical School, University of Cyprus.
The Person Behind the Diagnosis
When Neal’s* mother received a dementia diagnosis, he did what most people would do: he went online in search of reliable information. To his disappointment, what he found left him angry, discouraged and overwhelmed. The most prominent information, even on major dementia organisation websites, focused on pharmacological management, particularly tranquilizers and antidepressants extensively used to treat behavioural problems and mood swings (also called behavioural and psychological symptoms of dementia; BPSD). This emphasis on cognitive decline and psychological disturbances reinforces a negative narrative of inevitable deterioration, further pathologising dementia and perpetuating the stigma and fear surrounding the condition. Neal later shared that he felt upset and overwhelmed by the enormous amount of medication options available for a condition for which, up till now, despite decades of research, curative treatments remain limited (Vernooij- Dassen et al.,2021). Non-pharmacological approaches, if mentioned at all, appear as an afterthought, at the bottom of the page. Non-pharmacological approaches, if mentioned at all, appear as an afterthought, at the bottom of the page.
Unfortunately, Neal’s experience is not unique. It reflects a systemic pattern in how dementia, a condition affecting more than 57 million people globally and currently the seventh leading cause of death worldwide with numbers projected to rise in the coming decades (WHO, 2025), is understood, communicated and treated. Yet biomedical frameworks continue to dominate clinical practice and public discourse, often at the expense of the person living with the condition.
The biomedical model has undeniably enhanced our understanding of dementia as a neurological condition. It has enabled earlier diagnosis, driven research into disease mechanisms, and produced medications that can temporarily alleviate several symptoms (e.g Auso et al., 2020). But its predominance has narrowed the lens through which dementia is viewed, and this model fails to acknowledge individuality, often overlooking the emotional, psychological and relational needs of those with the condition. As such, dementia has been so thoroughly medicalised that the person behind the diagnosis is frequently overshadowed.
The Biomedical Model and its Limits
Within the biomedical framework, dementia is conceptualised as a pathological, individually located condition, with an organic cause to be treated and managed primarily by medical authorities. While this model challenged and dispelled earlier misconceptions that cognitive decline is an inevitable part of ageing, it has also been criticised for reducing the individual to a disease entity and a source of burden (Spector & Orrell, 2010). Yet a prominent finding in dementia research is the frequent mismatch between a person’s clinical presentation and the degree of neuropathology observed after death. For instance, some older adults who show no impairment on neuropsychological testing or clinical examination are later found to have extensive Alzheimer’s pathology at postmortem (Snowdon, 2003). Recent evidence suggests that people with extensive amyloid and tau pathology can show very different clinical outcomes, with several individuals remaining “dementiafree” despite high amounts of amyloid and tau deposition in their brains (observed directly at autopsy) offering important insights into the condition (Gomez-Isla & Frosch, 2023). This disconnect underscores the limitations of relying solely on neuropathology to explain cognitive functioning and reinforces the need for broader, integrative models that recognise the complex interplay of biological, psychological, social and other environmental factors in shaping how dementia is experienced (Spector & Orrell, 2010).
One of the key criticisms of the biomedical model is that it frames dementia as a problem located entirely within the individual, a collection of pathological processes to be measured, managed, treated and medicated. While biomarkers are important, they cannot account for the full clinical picture. A growing body of epidemiological evidence demonstrates that social, psychological and environmental factors also shape the onset and progression of the condition Vernooij-Dassen et al., 2021).
In response to the limitations of the biomedical model, Spector and Orrell (2010) proposed the biopsychosocial (BPS) model, which integrates both fixed factors, such as age or life history, and modifiable biological and psychosocial factors including mood, social environment, and daily routines to guide interventions and enhance quality of life. The World Health Organization similarly recognises dementia as shaped by interacting biological, psychological, and social determinants (WHO, 2002). Attending to this continuum enables practitioners to maximise a person’s potential and reduce disability. By illustrating how these factors interact, the model supports more targeted and responsive interventions, challenges stigma, and reinforces the principle that change is possible (Revolta et al.,2016).).
Nonetheless, once the diagnosis is made, behaviours are often interpreted through the narrow lens of neuropsychiatric symptoms requiring clinical management. This framing has contributed to reductive representations of dementia, positioning individuals as passive, dysfunctional and defined by impairment, rather than as individuals with lived experience, expertise, identity and agency (Stončikaitė, 2026).
In practice, this means that when a person receives a diagnosis, they are prescribed a list of medications and are often warned about potential side effects and behavioural challenges. As Tom, a person who lives with young onset dementia in Scotland, described it: after his diagnosis, he was shown the clinic’s door and told to simply “learn to live with this”. Such experiences illustrate how following diagnosis, individuals become patients, positioned within this new “identity” that becomes dominant and determines how they will be perceived, engaged and treated from that point forward, often overriding their capacities, preferences, and personhood.
The Person Remains: Person Centred Care as the Response
What came up early from research with people with dementia (PwD), caregivers and professionals is that focusing only on the diagnosis, the person behind it begins to fade. This is not merely a philosophical concern but a practical one, with real consequences for the person’s wellbeing and quality of life. PwD often report feeling invisible and dismissed as though their opinions no longer matter (e.g Tingley et al., 2024). Similarly, our research showed that in healthcare encounters, professionals often address caregivers rather than PwD, speaking about them in the third person as if they were not present and assuming that cognitive impairment is synonymous with the loss of personhood. Despite functional losses, however, PwD continue to strive for autonomy; they want to remain involved in decisions about their care and life, to feel valued, and to preserve a sense of self (De Vriendt et al., 2018).
As noted by Noa, a practitioner psychotherapist from Israel, while medications may ease neurological symptoms, they cannot tend to “the rest of your soul”, underscoring the need to treat the whole person, rather than just the parts of body that are affected by the diagnosis. This framing, “treating the whole person”, is precisely what the biomedical model, in its narrowest form, fails to provide and, therefore, is where attention must be focussed and action needs to be taken.
A recent systematic review identified nine categories of person‑centred dementia interventions, including social contact, physical activity, cognitive training (including arts‑based activities), sensory enhancement, daily living assistance, life‑history‑oriented emotional support, training for professional caregivers, environmental adjustments, and care organisation. However, the review found substantial variation in how these were designed and delivered, making it difficult to define a consistent model of person‑centred care (Mohr et al., 2021). This heterogeneity highlights the need for clearer conceptualisation and more consistent operationalisation of person‑centred dementia care.
What remains consistent however is the evidence: when programmes support meaningful activity, autonomy, and social participation, PwD show better outcomes including improved wellbeing and slower cognitive decline. This reinforces the importance of enabling engagement in everyday activities and participation in valued life roles (De Vriendt et al., 2018). Building on this, Górska et al. (2018) showed that PwD draw on a wide range of personal and environmental resources, such as cognitive capacity, personality, agency, selfefficacy, social connectedness, and the broader social, cultural and physical environment to navigate and adapt to dementia. Taken together, these findings underline how central meaningful engagement is to personcentred care. PwD actively strive to maintain continuity through diverse coping strategies, and they do so more successfully when their environment supports them in doing so. Thus, Górska et al. (2018) called for future research grounded in dynamic systems theory and participatory approaches to better capture the complexity of lived experience and support more ethical, personcentred care.
The Community Cure
While the biomedical model locates the problem inside the individual, the biopsychosocial model locates it in the relationship between the individual and their environment. This reframing opens entirely new possibilities for interventions. The question is no longer only: how do we manage this person’s symptoms? It becomes: what kind of community do we want to create and live in?
Participants in our research strongly advocated for interventions that are open to everyone, not exclusively PwD. They stressed the importance of creating dementia- inclusive communities that support and celebrate PwD. For instance, Regina, a dance movement psychotherapist from the Netherlands, described her groups as deliberately from “very mixed cultural backgrounds. It’s not all PwD, at ages from 50 to over 100, and some people have had brain injury but are still very young, some people have physical impairments and are allowed to join to battle loneliness. So, it’s all about communication and connection.” Notably, in spaces like these, PwD are not segregated into a diagnostic category. They remain engaged in activities that they always valued, implemented within a diverse community, which, in turn, becomes less afraid and more accepting of diversity. In so doing, PwD gain a sense of belonging and continuity, a thread connecting their pre- and post-diagnosis lives. By simply being present, they educate others about the condition, raise awareness organically and help dismantle stigma. Communities, in turn, become more sensitive, supportive, and capable of genuine inclusion.
Interestingly, what came up in the discourse was the power of intergenerational connection. Vittoria, an Italian dance psychotherapist, described online sessions during the pandemic that brought together PwD, their carers, and primary school students: “It was really amazing to see PwD and children dancing all together on the screens“. The older participants, mirroring the children’s energy and movement, began to move “much quicker than before.” This was not a therapeutic technique in the conventional sense but something that came up organically, the natural enlivening that occurs when generations meet and share moments of joy.
This is what we might call the “community cure”: the recognition that healing happens not only through clinical interventions but also through sharing, engagement, belonging and meaningful connection. When PwD are included in the full life of their communities, everyone can benefit. Niall, an Irish dancer/ choreographer and caregiver to his mum put it simply “it’s all about touch and communication and love. PwD need to feel that. They need to be held and they need to feel like it’s OK and be in the now.” Joy, touch and presence cannot be prescribed but they may be the most important things we can offer another human being.
The Digital Paradox
Social inclusion and meaningful engagement in community- based programs were widely recognised as essential. Yet it’s not always possible for PwD or their caregivers to access or travel to the venues. PwD may no longer feel confident travelling alone, while caregivers often have competing responsibilities (e.g work, children’s activities). Online programmes can reach people who cannot leave their homes, who live far from specialist services and for whom travel is impossible. For instance, during the pandemic, when in-person group sessions were suspended, technology helped to sustain connection.
Yet we encounter what might be called the “digital paradox”, the fundamental tension between technology’s immense potential to improve access and connection, and its inherent limitations that can only be overcome through human mediation. In one respect, the potential of digital tools to dramatically expand access was discussed by participants. For example, Noa described online clubs that “make it accessible for people at home to be connected in a group setting.” Meanwhile, technology creates new barriers. Some participants noted that PwD “may struggle to feel engaged online or get frustrated with technology, sound and video overstimulation“. Noa articulated the following crucial insight: digital interventions require a human bridge. Someone must help set up the connection, troubleshoot problems, provide encouragement, and remain present during sessions. When primary caregivers are at work, or when professional carers are unfamiliar with the technology, even the best-designed online programme become inaccessible.
The digital paradox cannot be resolved by better technology alone. It requires what participants described as the human bridge; caregivers, family members, professionals and volunteers who can make digital connections possible. It also requires genuine choice. In the Delphi study conducted as part of this research, participants reached consensus on a crucial principle: PwD and their caregivers should decide the mode of program delivery that best suits them (online/ in person or blended). This principle reflects profound respect for diversity. Some people prefer or can only attend online programmes. Others need in-person engagement in curated spaces. Many benefit from blended approaches that combine both. The key is to offer genuine options. As the Delphi participants advised: “ask them what they want, how they currently engage in programs, what hinders their access to programs. Give them the choice to decide”.
Shaping the Future of Dementia Care
Imagine Neal still at his kitchen table, but with different search results showing up this time. Instead of leading him to a list of medications and their side-effects, they lead to a list of community-based programs, where he and his mother can remain socially engaged while preserving their identity, autonomy and selfhood. A guide to person-centred services where practitioners see the whole person, attend to their needs and speak to PwD, not about them. To a different world in which dementia is not the most feared condition but an invitation to an alternative, no less human or degraded, way of being.
We recognise that we are not there yet. But the evidence from our research clearly shows that dementia is not the end of self. PwD do not have to suffer. They can live well, provided that the systems around them, from families and health services to communities and societies, learn to acknowledge both their strengths and their difficulties and accommodate their needs with respect, creativity and genuine care.
The path forward requires rethinking deeply ingrained assumptions, about dementia, about care, and about what it means to be a human with a long-term condition. It requires investing in community infrastructure, training healthcare professionals in integrative models of care and caregivers as digital mediators. Also, it requires designing interventions with people rather than for them. It requires us to move beyond the clinic’s door and to meet people where they actually are.
