Behaviour Support & Co-Design: Why Formulation Matters

Congratulations Mitch – Behaviour Support Specialist of the Year Nominee

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.