What People Living with Dementia Say Autonomy Means to Them
Autonomy is often spoken about in dementia care, yet it is rarely defined by the people most affected by its loss. Too often, autonomy is reduced to a legal concept or a risk-based decision point, rather than understood as a lived, emotional, and relational experience. When people living with dementia describe what autonomy means to them, they do not speak in terms of policies or capacity assessments. They speak about being known, respected, listened to, and trusted within the realities of their condition.
For many people living with dementia, autonomy is not about complete independence. It is about continuity of self. It is about being recognised as the same person they were before the diagnosis, even as abilities change. Autonomy, from their perspective, means having their preferences remembered, their routines honoured, and their emotional responses taken seriously. It is less about control and more about dignity — the dignity of being involved in decisions that affect their daily lives, even when others carry responsibility for safety and care.
Importantly, people living with dementia consistently describe autonomy as something that exists between people, not something exercised in isolation. Autonomy is felt when conversations are inclusive rather than directive, when explanations are offered instead of assumptions made, and when choices — however small — are preserved. Being asked rather than told, being guided rather than overridden, and being supported rather than managed are recurring themes in how autonomy is experienced positively.
This understanding does not dismiss the very real boundaries within health and social care systems. Safeguarding responsibilities, legal frameworks, and duty-of-care obligations exist for good reason. Families and professionals are often working under immense pressure, balancing risk, time constraints, and accountability. However, the presence of boundaries does not mean autonomy must disappear. What people living with dementia highlight is that how decisions are approached matters just as much as what decisions are made.
Autonomy can be supported within these boundaries when care shifts from task completion to relationship awareness. Simple adjustments — such as allowing more time for responses, framing choices in accessible ways, and acknowledging emotions even when outcomes cannot change — make a significant difference. When a person feels heard and understood, even limits imposed for safety are experienced differently. Respect does not remove boundaries, but it softens their impact.
Another recurring insight from people living with dementia is the importance of predictability and trust. Autonomy is reinforced when environments are consistent, when expectations are clear, and when people know what will happen next. Sudden changes, unexplained decisions, or rushed interactions erode a person’s sense of agency far more than the illness itself. Maintaining autonomy, therefore, often lies in communication rather than capability.
At Launex, we recognise that autonomy in dementia care is not an idealistic concept — it is a practical one. It sits at the intersection of understanding, communication, and timing. When families and carers understand how dementia affects processing, emotional regulation, and perception, they are better equipped to support autonomy in realistic ways. This understanding creates breathing space: space to respond with foresight rather than crisis management, and space to shift from task-focused care to person-led support.
Supporting autonomy does not mean removing responsibility from carers or systems. It means sharing it more thoughtfully. It means recognising that autonomy is not lost all at once, but gradually reshaped — and that with the right knowledge and approach, it can be preserved far longer than many assume.
Ultimately, what people living with dementia tell us is simple but profound. Autonomy means being treated as a person first, not a condition. It means being included, even when decisions are complex. And it means knowing that, despite change, their voice still matters.
That understanding is not a critique of the system. It is an invitation to improve it — together.
This article forms part of a wider evidence-informed position on language, autonomy, and person-led dementia care.