If you have ever watched the film Coco (2017, Disney•Pixar), you may remember the moment when music brings a grandmother back into connection, as she begins to sing along to “Remember Me”.
In the summer of 2025, grandmother, who had been mostly non-verbal while living with Alzheimer’s disease for over a decade, had a visit from my children. When they approached her and gave her a hug, her face lit up. She looked at them and said, “hello kids,” before offering them soy milk to share.
Although she remained mostly non-verbal, she continued to engage with them – smiling, clapping along to the songs they sang, and responding in ways we had not seen for some time.
Moments like these are difficult to explain through behaviour alone. They remind us that connection, familiarity, and sensory experience can still reach people in ways that are not always visible or easily measured.
They also point to the possibility that, even in advanced stages of dementia, the capacity for response, connection, and regulation may still be present – and that how we engage the body and environment can play an important role in bringing this forward.
A Growing and Shared Challenge
Both of my grandmothers lived with Alzheimer’s disease, the most common form of dementia. Like many families, this was not a distant condition – it shaped daily life, relationships, and how care was understood.
In the UK, around one million people are currently living with dementia, a number projected to rise to 1.4 million by 2040. Globally, over 55 million people are affected, with about 1,000 new cases added every hour, and with prevalence expected to be more than double by 2050 [1], [2], [3], [4]..
A diagnosis of dementia affects far more than the individual – it reaches into families and support networks. Carers often carry significant emotional, physical, and financial strain, shaping their own health and quality of life. Dementia is not only a neurological condition, but a shared challenge.
People living with dementia and their carers face a range of challenges. Among these, agitation and anxiety are some of the most common and distressing, often emerging as individuals struggle to interpret and respond to a changing and increasingly confusing world.
Agitation is a common and often prominent symptom in dementia. Reported prevalence ranges from 5% to 88%, with over a third of studies finding it in at least half of patients [5].
It is also one of the strongest drivers of caregiver burden, reduced quality of life, and transition into institutional care [6].
When Agitation Becomes Part of Daily Life
For many families and carers, some of the most challenging moments in dementia are not defined by memory loss alone, but by sudden shifts into distress.
It may look like a person becoming increasingly restless in the evening, repeating the same question despite reassurance, pacing through a once familiar space, or becoming unsettled during routine activities such as getting dressed or leaving the house. These moments can feel unpredictable and difficult to understand, particularly when there is no clear cause.
This experience is commonly described as agitation.
In clinical terms, agitation refers to a cluster of observable behaviours reflecting emotional distress, including restlessness, pacing, verbal repetition, irritability, or resistance to care. Frameworks proposed by Jeffrey Cummings and colleagues define agitation as excessive motor activity or verbal or physical aggression that represents a change from the individual’s usual behaviour and is not attributable to another condition [7].
For many families, these experiences are not only distressing, but can become a turning point in care. Agitation is one of the leading contributors to caregiver burden and transition into residential care [8].
According to Alzheimer’s Research UK, agitation and aggression affect an estimated 35% to 50% of people living with dementia, yet there are few effective treatments available, and those that do exist are often limited in duration and associated with side effects [9].
How Agitation is Currently Supported
In practice, supporting agitation often involves a combination of approaches, depending on the individual and the situation. Alongside medical care, non-pharmacological strategies are widely used across home and care settings. These include structured activities, person-centred caregiving, and sensory-based approaches such as music, touch, and environmental cues. Many carers will recognise how a calm voice, a familiar routine, or the right piece of music at the right time can help reduce visible distress [10].
These approaches are receiving growing attention in both research and practice. Study reviews suggest that tailored sensory interventions may support emotional wellbeing, quality of life, and the management of behavioural symptoms in dementia [11], while clinical studies and systematic reviews have associated non-pharmacological approaches more broadly with reductions in agitation and improvements in wellbeing [10]. Initiatives led by organisations such as Alzheimer’s Research UK and the Music for Dementia campaign have further highlighted how personalised music, as one example of sensory input, can support mood, connection, and overall quality of life for people living with dementia.
However, their use is often guided by experience rather than a clear framework [12]. It is not always obvious which approaches work best for which individuals, how they should be introduced, or how they can be adapted as needs change over time [13], [14], [15].
In addition, their effects are typically described in terms of observable behaviour, rather than the underlying processes they may be influencing [12]. This makes it more difficult to personalise, standardise, or scale these approaches in a consistent way [15].
What May Be Driving Agitation
To understand this more clearly, it is helpful to consider what may be happening beneath the surface.
Dementia affects attention, memory, and the ability to make sense of the environment. As these abilities change, everyday situations can become harder to process. A familiar space may feel unfamiliar, and a simple interaction may become confusing. Conceptual models of behavioural symptoms in dementia have long highlighted how reduced ability to interpret or communicate needs can lead to distress and agitation [16].
At the same time, there is evidence that the body’s stress regulation systems may also be affected. Heart rate variability (HRV), which reflects how flexibly the body responds to stress, has been found to be altered in people living with dementia, with lower or dysregulated HRV associated with poorer cognitive and behavioural outcomes [17], [18].
Taken together, these findings suggest that agitation may not simply be behavioural, but may also reflect underlying changes in how the body and brain respond to stress [19].
At the same time, these internal processes are closely shaped by the environments in which people live and interact. The way a space is structured, experienced, and interpreted can influence how distress develops and is expressed [20].
The Role of Environment in Shaping Experience
Alongside internal changes, the environment also plays an important role in shaping how distress is experienced.
Dementia-friendly design principles have increasingly highlighted how features such as lighting, layout, colour contrast, and familiar objects can influence orientation, reduce anxiety, and support a sense of safety. Environments that are predictable, easy to navigate, and rich in meaningful sensory cues can help reduce confusion and make everyday situations feel more manageable [21], [22], [23], [24].
Sensory elements are particularly relevant in this context. Natural light can support sleep and circadian rhythms [25], [26], [27], while familiar sounds, textures, and objects can provide grounding and connection [28], [29]. Multi-sensory environments, including the use of music, touch, and calming visual cues, have also been associated with improved wellbeing and reduced distress in some care settings [30], [31].
These principles are increasingly reflected in real-world care environments, where dementia-friendly design is used to create spaces that feel safe, familiar, and supportive of daily life.
These principles are increasingly reflected in real-world care environments, where dementia-friendly design is used to create spaces that feel safe, familiar, and supportive of daily life.
One example is Stima Mayores in Spain, which has gained attention for creating care environments designed around dignity, autonomy, and emotional wellbeing for people living with Alzheimer’s disease and other forms of dementia. Their approach highlights how thoughtful spaces, personalised engagement, and compassionate daily routines may help reduce distress and support quality of life.
From this perspective, agitation may not only reflect internal changes, but also how individuals are interacting with and interpreting the spaces around them.
In this way, both the body and the environment become part of the same system shaping how distress is experienced.
Understanding Agitation as a Regulatory State
In these moments, individuals may rely more on automatic or stress-based responses, particularly when situations become difficult to understand. When this happens, the body can become more activated, making it even harder to process what is going on, and sometimes creating a cycle that is difficult to break [20].
From this perspective, agitation may not only reflect a reaction to what is happening around the person, but also a difficulty in settling back into a calmer and more stable state.
Research suggests that changes in how emotions are experienced and regulated in dementia may play a role in this, alongside changes in how the body responds to stress [18], [32], [33].
Many existing care practices already seem to work in line with this. A calm and familiar presence can help someone feel more settled, while sensory inputs such as music or gentle touch can provide reassuring signals that support a sense of safety. Environmental and sensory factors have also been shown to influence agitation in dementia [34].
Although widely used, these approaches are not always described in this way, and the processes through which they help are not yet fully understood.
Bridging What We See and What We Understand
With this perspective, many everyday care practices begin to make sense in terms of regulation. However, this also highlights a gap between what carers and practitioners observe in practice, and how these experiences are currently explained.
While many interventions appear to reduce agitation, there is relatively limited work examining how they interact with the body’s regulatory systems. At the same time, research from related areas suggests that external inputs such as social interaction [35], sensory stimulation [36], and rhythm can influence physiological state [37].
This offers a useful way of understanding existing care practices. Approaches such as music, touch, or calm interaction may not be separate techniques, but different ways of supporting the same underlying process: helping the body return to a more regulated state [31], [38].
Framing care in this way helps connect practical experience with emerging scientific understanding.
One way this is already being explored in practice is through the growing use of sensory and interactive tools designed to support people living with dementia. These include comfort-based objects such as HUG by LAUGH, as well as interactive technologies such as robotic companion pets.
Products like HUG are designed to provide gentle sensory input through features such as weight, warmth, music, and even a simulated heartbeat, offering a sense of comfort and emotional reassurance. Similarly, studies of robotic companion pets suggest they may reduce agitation, increase social interaction, and provide a sense of connection, particularly in later stages of dementia.
Early real-world insights also highlight how people living with dementia experience these approaches. In work led by Alzheimer’s Society, individuals interacting with lifelike and robotic pets described how features such as warmth, breathing, or purring could feel calming and reassuring, particularly during moments of anxiety. Others responded to movement and familiarity, with some noting that these interactions helped create a sense of presence or companionship. At the same time, responses varied, highlighting that what feels comforting for one person may not for another, and that personalisation remains important.
Music provides another example of how sensory input can support emotional regulation in care environments. Music is viewed as supporting mood regulation among residents with Alzheimer’s disease in care communities. In a qualitative study by Hess et al., caregivers use music to reduce stress and create moments of enjoyment, helping lift residents’ spirits and provide comfort. Staff also report that music can elicit responses from residents who are usually unresponsive, while supporting memory recall, sense of self, and reducing anxiety. “The music kind of relaxes them either puts them to sleep or just kind of slows them down, […] calms that anxiety down” [38].
While these approaches are often described in terms of comfort or companionship, they may also be understood as providing consistent sensory and relational input that supports a sense of safety and helps regulate emotional and physiological state.
Although the evidence base is still developing, their growing use highlights how supporting regulation through the body and environment is already being explored in practical and accessible ways within dementia care.
Why Rhythm and Sensory Input May Matter
One area where this becomes particularly relevant is rhythm.
Many of the sensory experiences described earlier – such as a steady heartbeat, gentle breathing, or the rhythmic purring of a companion – share a common feature: they provide consistent, patterned signals that the body can respond to.
Research has shown that rhythmic auditory and tactile inputs can influence physiological processes such as heart rate and breathing, helping to shape how the body responds to stress. Similarly, synchrony between people – such as matching tone of voice, pace of speech, or movement – has been associated with increased feelings of safety and reduced physiological arousal [39].
This offers one possible explanation for why approaches such as music, touch, or interactive companion tools may help reduce distress. Features such as a simulated heartbeat, breathing patterns, or responsive movement may not only provide comfort, but also act as rhythmic cues that support the body in settling.
While these mechanisms have not been extensively studied in dementia populations, they offer a useful framework for understanding how sensory and interpersonal approaches may help reduce agitation. In this context, rhythm and sensory input may provide simple, accessible ways of supporting the body to return to a more regulated and stable state.
Emerging Work and Future Directions
Building on this perspective, there is growing interest in how these regulatory processes might be supported more directly.
Alongside this, early-stage work across research and innovation is beginning to explore how gentle, body-based signals – including rhythm and sensory input – may interact with these systems in more targeted ways [37], [40].
At LYEONS, current work is exploring this area further, drawing on a multidisciplinary approach that combines engineering, clinical insight, and user-centred design. This includes early investigation into how approaches such as heartbeat-like rhythms may relate to mechanisms of grounding and co-regulation already observed in care practice.
An important part of this work is understanding variability between individuals. What feels calming or supportive for one person may not for another, and may also depend on context, stage of condition, and moment-to-moment experience. For example, questions remain around whether certain rhythms, intensities, or patterns feel more helpful in different situations, and how these might be adapted over time.
Current efforts are therefore focused on exploring how these inputs can be better tailored and adjusted – including how signals such as breathing or heart rate might help inform when and how these sensory experiences are delivered in a more personalised way.
These approaches can work alongside existing care practices, offering additional support during moments of distress or uncertainty.
This work remains at an early stage. Further research is needed to understand how these approaches may be experienced, for whom they may be most helpful, and how they can be integrated safely and appropriately within everyday care.
Towards a More Integrated Approach
Overall, agitation in dementia may be better understood as a state arising from the interaction between cognitive change, environmental uncertainty, and altered physiological regulation.
From this perspective, supporting agitation involves not only responding to visible behaviours, but also considering how the body and nervous system are being engaged.
Developing a more integrated understanding that connects care practices, regulatory mechanisms, and emerging approaches may help move towards more targeted and personalised ways of supporting people living with dementia.
Acknowledgments
Thank you to everyone for their valuable discussions and thoughtful input, which contributed to the development of this work. Gratitude is extended to individuals with lived experience of dementia, as well as carers and practitioners, whose insights continue to inform and shape this perspective. We also thank STIMA Mayores for supporting the inclusion of relevant photographic material illustrating real-life care environments and practice.
Note
The approaches discussed in this article reflect ongoing research and emerging areas of investigation. They are not currently established clinical interventions and require further study to understand their role in dementia care.
This article is inspired by my two grandmothers, both wonderful women who always thought of others before themselves. They taught our family kindness, care, and compassion. Even as memory changed, their warmth and humanity remained.
References
[39] L. S. Escobar, M. Robbins, J. Hwang, S.-M. Jung, and D. J. Park, ‘Exploring cardiac physiological synchrony and its implications for stress and anxiety’, Ageing Neurodegener. Dis., vol. 5, no. 3, p. N/A-N/A, Sep. 2025, doi: 10.20517/and.2025.14. [40] M. Rodriguez and E. Kross, ‘Sensory emotion regulation’, Trends Cogn. Sci., vol. 27, no. 4, pp. 379–390, Apr. 2023, doi: 10.1016/j.tics.2023.01.008.
Leave a Reply