Authors: Dr. Maria Gialama, Practitioner Psychologist and Researcher at the Department of Psychology; Dr Joanne McVeigh, Assistant Professor of Psychology; and Prof. Mac MacLachlan, Professor of Psychology and Social Inclusion and Co-Director of the ALL Institute, all at Maynooth University together with Prof. Georgios Hadjigeorgiou, Professor of Neurology at the Medical School, University of Cyprus.
“There is still a good life to live even after a diagnosis of dementia, and we should be supported and enabled to continue to do so.” Kate Swaffer (2015)
Introduction
September marks World Alzheimer’s month, and the objective of this year’s campaign, themed “ask about dementia and Alzheimer’s” by Alzheimer’s Disease International (ADI), is to raise awareness and challenge the persistent stigma around all types of dementia. To advance a comprehensive understanding, ADI aspires to normalise asking questions and openly discussing the condition, with a view to debunking myths, reducing stigma and moving beyond assumptions of what it really means to live with dementia, thereby promoting awareness of its biopsychosocial implications. (The biopsychosocial model explains health by looking at how our bodies, minds, and social surroundings all work together to influence wellbeing).
Dementia is an umbrella term, comprising a group of neurological diseases that affect memory, thinking, language, problem-solving and the ability to perform daily activities. It arises from a range of diseases and brain injuries, with Alzheimer’s disease (AD) accounting for approximately 60-70% of all cases (WHO, 2025). The condition was first identified in 1906 by the psychiatrist and neuroanatomist Alois Alzheimer who described the clinical trajectory of a 50-year-old female patient living with paranoia, progressive memory and sleep disturbances, aggression and confusion. Although this initial presentation received minimal recognition, it was later acknowledged by Emil Kraepelin who formally introduced the term “Alzheimer’s disease” in 1909. Despite being recognised for almost 120 years now and ranking among the most prevalent neurodegenerative diseases worldwide, with its estimated global incidence at 9.8 million cases, lack of knowledge and stigma associated with the condition constitute barriers to timely diagnosis and appropriate treatment and care.
Acknowledging dementia’s significant impact on individuals who live with the condition, their carers / families, societies and countries, in 2017, the World Health Organisation recognised it as a public health priority, emphasising the need for care and support that enables people to live with meaning and dignity. To make this possible, a key action area was increasing ‘awareness’ and ‘friendliness’, given that lack of understanding often result in stigmatization and barriers to diagnosis and care. ADI (2022) similarly highlighted that people with dementia (PwD) are among the most excluded groups worldwide because of stigma, fear and an underestimation of their abilities by professionals, researchers, policymakers and the public. As a result, PwD may be denied fundamental human rights, excluded from decision-making processes and have their wishes and preferences for care disrespected. On the contrary, increased public awareness, understanding and acceptance could provide opportunities for meaningful engagement in community life and promote autonomy through enhanced social participation.
In line with this, the “TheMind your Next Dance” (MYND) programme for dementia, developed by researchers at Maynooth University and the University of Cyprus using a multistage and multimethod design that brought together the knowledge, experience and skills of international researchers, academics, allied health professionals, practitioners and people with lived dementia experience, emphasised the critical need to prioritise dementia awareness and education to challenge widespread misconceptions and dispel myths. This study provided evidence that, in order to effectively reduce stigma and promote social inclusion, interventions should extend beyond comprehensive educational initiatives and be linked with psychosocial support to meet both educational and psychosocial needs of diverse stakeholders. These include PwD, their families and caregivers, healthcare professionals and the broader community, acknowledging that dementia care is a shared and collective responsibility, requiring multidisciplinary and multisectoral collaborations. As one participant characteristically noted, dementia programmes “should become everyone’s business”.
Common Myths and Misconceptions about Dementia: The Need for Dementia Education
Lack of public knowledge and widespread misconceptions about dementia represent significant global challenges. PwD and their carers often experience stigma rooted in negative and discriminatory beliefs toward neurological conditions, which can be further reinforced by cultural beliefs. A systematic review of dementia depictions confirmed the predominance of negative cultural representations and narratives. PwD are often portrayed through stereotypical lenses, predominantly as elderly persons who have lost their memory, mind and identity and behave unpredictably. Such portrayals emphasise human suffering, dehumanisation, lack of agency and voice, perpetuating stigma, fear and disrespect while generating social distance between “us” and “them”. Addressing these misconceptions is essential for reducing stigma, fear and their negative impact, increasing visibility and fostering discussions around the multifaceted needs of those affected by the condition and their families.
Meanwhile, a systematic review showed that, across most studies, public knowledge and understanding of Alzheimer’s and dementia were only fair to moderate. One of the most pervasive misconceptions is that dementia represents a normal part of the ageing process. This is perhaps unsurprising given that the diagnosis has been mainly associated with memory impairments, such as difficulty recalling names, finding the right words or misplacing personal items, that are often observed in older adults. Interestingly, expanding on the 2019 global survey on dementia attitudes, the most recent ADI report (2024) showed that, despite the intervening 5-year timeframe, almost two thirds of healthcare professionals still view dementia as a normal part of ageing, revealing a critical gap in knowledge that must be urgently addressed.
Findings from our MYND study build on this evidence and highlight how cultural and societal narratives shape perceptions of ageing and dementia that influence attitudes, treatment and care. Physical deterioration, cognitive decline, memory difficulties and mental health challenges were viewed as socially constructed problems. Indeed, ageing was described as a natural, yet inevitable process, often framed through negative social stereotypes that portray older people as frail, unproductive and unable to participate in social life and contribute to society. Subsequently, dementia was viewed as “the most feared illness” associated with loss of personhood, autonomy and agency. On a societal level, stigma surrounding old age and dementia was considered as a key driver of discrimination, isolation and limited access to dementia-specific services, supports and social and cultural opportunities for engagement. At the same time, on a personal level, PwD reported feeling invisible, reluctant to disclose their diagnosis and hesitant to participate in social activities. Provided that dementia is often accompanied by the additional stigma of mental health and behavioural changes that can further reinforce discrimination and exclusion, findings emphasise the urgency to reframe ageing as a normal developmental stage where people’s needs are different and more complex, thus requiring holistic and multicomponent care while challenging community perceptions of dementia.
According to the MYND study, among the key strategies in the development of dementia inclusive and friendly communities are:
- education aimed at raising awareness and reducing stigma combined with;
- the active engagement of PwD and their caregivers in their communities.
The first should be available for PwD and their caregivers, healthcare providers and the wider community. Specifically, educational materials should be clear and easy to understand, prepared in simple non-stigmatising language, avoiding medical jargon and disseminated through multichannel communication strategies to reach diverse audiences. For example, participants expressed concerns over the use of descriptors such as “dementia sufferers”, stressing that “people can actually have a great life with dementia” and do not suffer because of it. Communication strategies could include materials tailored to varying literacy levels, short informational videos, community / public events or artistic performances to enhance outreach and engagement and foster public dialogue.
The second strategy indicated that PwD should be provided with opportunities for meaningful engagement in socially inclusive and culturally appropriate activities, based on remaining skills, abilities and individual preferences. Crucial to normalising dementia and promoting social inclusion is the provision of psychosocial programmes that that can improve well-being and quality of life. Group based, creative and multicomponent programmes can offer PwD and their carers psychological and social support, essential for navigating life after receiving a dementia diagnosis.
Challenging the Narrative: Reframing Dementia Through Arts and Mindfulness
Swaffer (2015), a dementia activist living with the condition, introduced the concept of “prescribed dis-engagement” to highlight the negative and harmful narrative in dementia care. Individuals are often advised to relinquish their pre-diagnosis lives and prepare for decline, withdrawal and residential care rather than continue pursuing an active and meaningful live. Though well intentioned, such advice only applies to dementia and reflects widespread misconceptions, myths and a lack of education, that perpetuate stigma and discrimination, disempowerment, isolation and loss of identity while undermining self-esteem and quality of life, thus creating unnecessary emotional and financial burdens for PwD and their families. In contrast, Swaffer (2015) encourages PwD to ignore such advice and “re-invest” in their lives through active participation in meaningful activities, with, wherever needed, the supports provided to people with disabilities.
Against this backdrop of stigma and exclusion, the arts can challenge negative stereotypes, bridge creativity and care, and create new narratives of capability, empowerment and opportunities for meaningful engagement and social inclusion. The growing interest in arts and cultural engagement stems from existing evidence on its positive effects, including improvements in health, mental health and wellbeing, as well as fostering social connections and building social cohesion. Participants in our study recognised that the dominance of the biomedical model of dementia was, in the absence of a cure and effective treatments, considered insufficient. Instead, they emphasised the need for socially inclusive activities, such as music, dance and mindfulness-based group practices, that promote self-expression, engagement and enjoyment while providing opportunities to meet and connect with peers and share quality time.
The latest WHO report (2023) supports these perspectives, underscoring the value of arts-based activities in encouraging participation, supporting healing and better coping with chronic conditions. These are multi-modal, low-risk and cost-effective interventions, that can be employed in the prevention and management of non-communicable diseases (NCDs), including dementias and mental health, and are associated with improved health, wellbeing and a range of psychological, social and behavioural benefits. Advocating for their integration into clinical and public health practices, the WHO (2023) calls for equitable access to arts engagement and creative arts therapies, and for the advancement of social prescribing, linking individuals to non-clinical services such as arts and cultural programmes for health and well-being.
Indeed, a recent systematic review on creative art therapy, a form of psychological therapy that utilises the creative and expressive process of art-making to support and enhance psychological and social well-being, showed improvements in cognitive function, well-being, mood and quality of life in PwD, emphasising person-centred therapeutic activities and being “in the moment”. In line with this, dance movement therapy (DMT), has demonstrated potential to support PwD and their caregivers through group support, meaningful relational dynamics, synchrony and creative movement, thus fostering shared presence and emotional connection. Importantly, DMT can have shared benefits; for PwD it can facilitate moments of coherence, identity reclamation and reconnection with their personal history, while for caregivers, it can transform caregiving into a supportive space for meaningful partnership.
In conclusion, person-centred, arts-based interventions are promising avenues with potential to offer a powerful means of challenging the prevailing narrative of decline, deterioration, stigma and fear surrounding dementia. They can show that PwD are still capable of engaging in social activities that promote creative self-expression and social connections. Such approaches can reframe dementia not as an inevitable part of ageing or erosion of personhood; the very essence of being, but as a socially constructed condition that is coloured by stigma, misconceptions, negative stereotypes, images, feelings and social exclusion. By promoting inclusion and affirming agency, PwD can remain actively and meaningfully engaged in group / community-based activities and social life, showing that a dementia diagnosis does not equal resignation in the face of limited treatment options and widespread misconceptions, but can be an opportunity to reinvest in what brings enjoyment, meaning and purpose. It is anticipated that arts inclusion and participation can also serve as a lesson for individuals who still fear, discriminate against or stigmatise dementia, offering a tangible, real-life learning opportunity through which the dominant narratives may be challenged, attitudes reshaped, and social understanding transformed, thus narrowing the social distance between “them” and “us” and encouraging more compassionate forms of social connection and inclusion.
