Dementia Care: The Whole Person Is the Whole Point
July 16, 2026
Behaviour Support Practitioners Monica Cachia and Tracy Cutler attended the International Dementia Conference 2026, where a consistent message emerged across disability and aged care practice: the whole person is the whole point.
Traditional models of dementia care have tended to focus heavily on the brain as the source of distress. This approach can lead to over‑reliance on medications, particularly antipsychotics, which often address outward behaviours rather than the underlying causes of distress.
Dementia may change how a person communicates and relates, but as highlighted through the work of Teun Toebes, it does not take away a person’s humanity, identity, or right to meaningful connection. Too often, distress is labelled as “BPSD” without sufficient attention to the environment, relationships, or unmet needs that would be distressing for anyone.
A wellbeing‑led approach reframes behaviour as communication rather than a problem to be managed. Rather than asking “How do we stop this?”, the focus shifts to “What is this person telling us, and how can we respond?” People living with dementia are often held to a higher emotional standard than others, expected to tolerate experiences that would be distressing for anyone.
By intentionally focusing on one wellbeing domain at a time- such as joy, comfort, safety, identity, connection, or autonomy, and embedding this focus into everyday interactions, services can improve safety, dignity, and quality of life.
People with intellectual disability experience a higher risk of dementia and often an earlier onset. Their needs are frequently under‑recognised within both disability and aged care systems.
The conference also reinforced the importance of inclusive dementia support for people with intellectual disability, culturally safe care, accessible information supported decision-making tools and right based decision-making, and thoughtfully designed environments. The physical environment plays a critical role in dementia support. Furniture, lighting, layout, noise levels, and access to personal belongings all influence how safe, oriented, and valued a person feels. Environments should support independence, familiarity, and dignity rather than efficiency alone.
When dementia support centres the whole person, not just the diagnosis, outcomes improve for individuals, families, and services alike.
If you or someone you know could benefit from personalised support throughout the dementia journey, get in touch with the helpz team. We are here to listen, understand and help.
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Younger Onset Dementia When most people hear the word dementia , they often picture an older person experiencing memory difficulties. However, dementia can also affect people under the age of 65, a condition known as Younger Onset Dementia (YOD) . In Australia, thousands of people are living with younger onset dementia, and the number is expected to continue increasing over coming decades. A diagnosis of younger onset dementia can be particularly challenging because it often occurs during a busy stage of life. Individuals may still be working, raising children, managing mortgages, maintaining relationships, and actively participating in their communities. As a result, the impact extends beyond the individual to affect families, workplaces, and support networks. What Is Younger Onset Dementia? Younger onset dementia is not a specific type of dementia. Rather, it is a term used when symptoms of dementia develop before the age of 65. Like older onset dementia, it can result from various conditions, including Alzheimer's disease, vascular dementia, frontotemporal dementia, Lewy body dementia, and other neurological disorders. Interestingly, memory loss is not always the first sign. Depending on the type of dementia, changes in personality, behaviour, decision-making, communication, emotional regulation, or problem-solving skills may appear before noticeable memory difficulties. This can make obtaining an accurate diagnosis more complex, as symptoms are sometimes mistaken for stress, depression, burnout, or other mental health concerns. Fascinating Facts About Younger Onset Dementia Dementia Is Not a Normal Part of Ageing One of the most common misconceptions about dementia is that it is an inevitable part of getting older. In reality, dementia is caused by diseases affecting the brain and can occur at almost any age. Symptoms Vary Significantly Between Individuals No two experiences of dementia are exactly the same. Some people may experience significant communication difficulties, while others may demonstrate changes in judgement, behaviour, social awareness, or emotional control. The person's age, lifestyle, diagnosis, support network, and overall health all influence how dementia presents. Early Signs May Be Behavioural Rather Than Cognitive For some individuals, particularly those with frontotemporal dementia, noticeable changes in behaviour or personality may occur before memory impairment becomes apparent. Family members often report that their loved one "just isn't themselves anymore" long before dementia is suspected. People Can Continue Living Meaningful Lives A diagnosis of younger onset dementia does not mean a person immediately loses their independence or quality of life. Many individuals continue participating in hobbies, employment, social activities, community events, and meaningful relationships for years following diagnosis when appropriate supports are in place. Understanding Behaviours of Concern As dementia affects different areas of the brain, individuals may experience difficulties interpreting information, communicating needs, regulating emotions, or responding to environmental demands. Behaviours of concern often emerge when a person is attempting to communicate an unmet need, discomfort, confusion, fear, or frustration. Rather than viewing these behaviours as deliberate or challenging, it is often more helpful to ask: "What is this person trying to tell us?" Agitation and Restlessness Agitation may present as pacing, fidgeting, repeatedly moving around an environment, or appearing unsettled. These behaviours may be linked to pain, anxiety, fatigue, boredom, sensory overload, or changes in routine. Verbal Aggression Some individuals may yell, swear, accuse others, or become argumentative. Often, these responses occur when the person is confused, frightened, unable to express themselves effectively, or feeling misunderstood. Physical Aggression Physical aggression, such as hitting, pushing, kicking, or throwing objects, is frequently associated with a perception of threat or loss of control. The individual may be attempting to protect themselves from something they do not understand or are unable to process. Repetitive Questions and Behaviours Repeating questions or actions can be frustrating for caregivers, but these behaviours often reflect memory difficulties, anxiety, or a desire for reassurance. The behaviour may help the individual feel safe and oriented in their environment. Withdrawal and Loss of Motivation Not all behaviours of concern are outwardly disruptive. Some people become increasingly withdrawn, lose interest in activities they once enjoyed, or disengage from social interactions. This can be related to changes in cognition, mood, confidence, or communication abilities. Wandering and Exit-Seeking A person may attempt to leave a home, workplace, or support setting because they are searching for familiarity, purpose, routine, or a place they associate with safety. These behaviours often reflect unmet emotional or environmental needs rather than intentional non-compliance. How Positive Behaviour Support Can Help Positive Behaviour Support (PBS) offers a person-centred framework for understanding and responding to behaviours of concern in individuals living with younger onset dementia. Rather than focusing on eliminating behaviours, PBS seeks to understand the function of the behaviour and improve the person's quality of life. Understanding the Reason Behind the Behaviour Behaviour support practitioners work collaboratively with the individual, family members, healthcare professionals, and support workers to identify factors contributing to distress. This includes examining: Environmental triggers Communication difficulties Physical health concerns Pain and discomfort Sensory sensitivities Changes in routine Social and emotional factors Understanding these influences allows support teams to develop proactive strategies that reduce distress before behaviours escalate. Improving Communication As dementia progresses, communication can become increasingly difficult. Positive Behaviour Support can assist by introducing strategies such as: Using clear and simple language Allowing additional processing time Reducing competing distractions Using visual supports and prompts Maintaining consistent communication approaches across support networks When communication improves, frustration and distress often decrease. Creating Supportive Environments The physical environment can significantly influence behaviour. Small modifications can produce meaningful improvements in wellbeing, including: Reducing noise and sensory overload Improving lighting and visibility Using visual cues and signage Supporting predictable routines Creating calm and familiar spaces These adjustments help individuals feel safer, more confident, and better able to navigate their daily lives. Promoting Meaningful Engagement People living with younger onset dementia continue to have goals, interests, strengths, and preferences. Behaviour support actively promotes meaningful participation in activities that provide: Purpose Connection Achievement Choice Enjoyment Maintaining these opportunities can reduce boredom, improve emotional wellbeing, and enhance quality of life. Supporting Families and Care Teams Families and support staff often experience significant stress when behaviours of concern emerge. Behaviour support practitioners provide education, coaching, and practical strategies that help supporters respond consistently, confidently, and compassionately while preserving the dignity and rights of the person living with dementia. Looking Beyond the Behaviour Perhaps the most important principle when supporting someone with younger onset dementia is recognising that behaviour is a form of communication. By moving beyond the behaviour itself and exploring the person's experiences, emotions, and unmet needs, we create opportunities for connection, understanding, and meaningful support. Positive Behaviour Support provides a framework for achieving this by focusing on the individual rather than the diagnosis. With the right supports, people living with younger onset dementia can continue to enjoy fulfilling lives, maintain important relationships, and participate in the activities that matter most to them. Supporting someone living with dementia means looking beyond their diagnosis or behaviour to understand their identity, experiences, relationships and unmet needs. In our article, Dementia Care: The Whole Person Is the Whole Point , we explore how a wellbeing-led approach can help us respond to distress with greater curiosity, compassion and respect. If you or someone you support is living with younger onset dementia and could benefit from person-centred Positive Behaviour Support, our team is here to help. Get in touch with helpz to discuss how we can support the person, their family and care team.
How small, intentional actions can create more inclusive communities where everyone feels welcomed, valued and connected. Belonging is one of our most fundamental human needs. We all want to feel welcomed, valued, respected, and connected to the people and places around us. Yet for many people with disability, genuine inclusion can still be difficult to find. While awareness of disability has grown significantly in recent years, inclusion is about much more than simply opening the door. True inclusion means creating environments where people can actively participate, contribute, build relationships, and feel like they are a valued part of their community. At Helpz, we see every day how powerful belonging can be. Whether it's a student making friends at school, an adult joining a community group, or a person gaining confidence to participate in activities they enjoy, meaningful inclusion can have a positive impact on wellbeing, independence, and quality of life. Inclusion Starts with Small Actions The good news is that creating inclusive environments doesn't always require major changes. Often, the most meaningful improvements come from small, intentional actions that help people feel welcome and supported. Organisations can promote inclusion by: Using clear and accessible communication. Ensuring physical spaces are easy to navigate. Offering flexibility in how people participate. Creating opportunities for social connection and relationship-building. Asking people what support they need rather than making assumptions. Celebrating diversity and recognising individual strengths. These simple steps can make a significant difference to a person's experience and sense of belonging. Moving Beyond Accessibility Accessibility is essential, but belonging goes a step further. A wheelchair ramp may enable someone to enter a building, but belonging is about whether they feel included once they get inside. It's about being invited to participate, having a voice in decisions, being recognised for talents and contributions, and forming meaningful relationships. When organisations focus on belonging, they create environments where everyone has opportunities not just to attend, but to thrive. The Benefits of Inclusive Communities Inclusive organisations benefit everyone, not only people with disability. Diverse communities foster stronger relationships, encourage innovation, and create richer experiences for all members. When people with different backgrounds, abilities, and perspectives come together, communities become more connected, compassionate, and resilient. Looking Forward As we celebrate five years of Helpz, we are reminded that meaningful inclusion is a journey we all share. Every conversation, invitation, and act of understanding helps build communities where people feel seen, valued, and connected. Because at the heart of inclusion is a simple belief: everyone deserves the opportunity to belong. Creating a more inclusive world doesn't happen through grand gestures alone, it happens through everyday actions that ensure every person has the chance to participate, contribute, and thrive. Together, we can create communities where everyone feels they truly belong. A sense of belonging is especially important during childhood, shaping how children connect, participate and feel at school. In our artic le, Why Friendships Matter: Helping Children Feel They Belong at School , we explore how friendships and peer connection can support c hildren’s confidence, wellbeing and engagement in learning. At helpz, we work alongside individuals, families and support networks to create opportunities for greater participation, connection and independence. If you or someone you know could benefit from personalised support to feel more connected within their community, get in touch with our team.
