When a loved one is diagnosed with dementia, life as you know it changes. The role you once held as their partner, child, or sibling evolves. It’s easy to feel helpless, especially when communication, which was once effortless, becomes challenging or less consistent. But in these moments, it's important to remember one undeniable truth: they are still the person you love. While they may not always be able to express themselves with words, they are still experiencing the world around them just as deeply as before.
As family members, we are entrusted with the privilege of helping our loved ones navigate this challenging journey. And to truly support them, we must learn to connect in ways that go beyond words—through patience, presence, and understanding.
One of the most common responses is a profound sense of loss—a loss of identity, of control, and of the future they imagined,” says Dr Chan, a Gerontologist, who has supported patients across various stages of dementia. “Many feel devastated. There’s often an immediate withdrawal from social situations, driven by fear and the stigma that still surrounds dementia.”
She explains that the stigma can be just as debilitating as the condition itself, making people feel as though they’ve already lost their place in society. “That’s why it’s so important to walk with them throughout the journey and to let them know they’re not alone. Support in those early days matters, but so does ongoing engagement.”
Dr Chan adds that challenging public perceptions is equally important. “When people feel safe to talk about their diagnosis without fear of judgment, they’re more likely to seek help. And when that happens, we’re in a much better position to provide it.”
The power of presence: Letting silence speak
When dementia affects someone's ability to express themselves clearly, we can be tempted to fill the silence with our own words. We want to help, comfort, and make everything feel "normal" again. But sometimes, silence speaks volumes. When my father was first diagnosed, I thought I needed to fill the gaps in conversation with my own reassurances. But I soon realised that simply being present in the moment, whether it was by offering a reassuring smile, sitting quietly beside him, or just being there, made a meaningful difference to him.
In those quiet moments, we found a way to communicate without words. I could see it in his eyes, feel it in the way his body relaxed when I was near. We didn’t need to say anything; we simply needed to be together.
This experience helped me understand that dementia is not the end of connection—it’s just a different way of connecting. And sometimes, the most meaningful conversations happen in silence.
Reading between the lines: Understanding body language and non-verbal cues
As dementia progresses, words become more and more unreliable. But my father still communicates through his body language, facial expressions, and actions. This shift can be confusing, but it’s also an invitation to learn a new language—one without words.
For example, when my father struggles to find the right words, I can often notice his body language—his hands tense, or a slight furrow in his brow. Instead of reacting immediately, I focus on his non-verbal cues. I’ve learned that a calming touch on his back, gently adjusting his posture to help him feel more at ease, or guiding him to a quiet space can provide reassurance and help him feel more comfortable.
It’s crucial for us, as family members, to tune into these subtle signals. They are his way of expressing his feelings, even if he can’t say it aloud. By observing carefully, we can respond in ways that truly support him.
“I wish people would stop and truly see them — not just the condition, but the person,” says Dr Chan. “They have emotions, feelings, and needs, just like anyone else. They’re doing their best to communicate using whatever abilities they have left. We just need to pay attention.”
She recalls a moment that continues to shape how she approaches care. “Mary (not her real name) was living with advanced dementia. She had minimal language abilities, couldn’t retain recent memories, and sometimes didn’t recognise her spouse, who was with her around the clock. One afternoon, she refused her lunch and became irritable when anyone encouraged her to eat. But I noticed something. She kept swallowing her saliva quickly and looked visibly uncomfortable.”
“I asked her gently if she felt like vomiting. She looked so relieved and said ‘yes,’ as if someone had finally understood her. We tried to get her to the toilet, but she vomited along the way.”
Dr Chan explains that moments like this highlight a deeper truth. “If we had simply dismissed her behaviour as just another symptom of dementia, we would have missed her real need. This is why person-centred care matters. Behind every reaction is a message. And we have to be willing to listen.”
Honouring their emotions, humour, and identity
Dementia often leaves emotions intact, even as cognitive abilities falter. My father may struggle to identify or explain what he’s feeling, but his emotions are real. For example, when he becomes anxious without an obvious reason, I’ve learned to simply acknowledge his feelings and offer reassurance, even if I don’t fully understand the cause.
Even with the challenges of dementia, his sense of humour remains a part of who he is. He still surprises us with moments of laughter, sharing jokes, and bringing smiles to our faces, reminding us that his personality is very much alive. It’s tempting to try to "fix" his emotions, but I’ve come to realise that sometimes, all he needs is to feel heard and understood. While dementia may change the way he communicates, it doesn’t take away his ability to feel or to laugh.
As family members, we can support them by embracing these moments—whether through a smile, a shared laugh, or simply being present with them. These interactions remind us that they are still very much themselves, deserving of love, respect, and understanding, no matter how their expressions might change.
One key challenge lies in how dementia is portrayed in public discourse. Many awareness campaigns unintentionally deepen stigma by focusing almost exclusively on decline and loss. These tragedy-driven narratives shape public perception, often reinforcing fear, pity, or misunderstanding.
To support true listening and person-centred care, we need to move away from narratives that reduce individuals to their diagnosis. A more balanced approach that recognises strengths, individuality, and the capacity for meaningful connection can help shift attitudes. By reframing how dementia is discussed, we create space for empathy, dignity, and greater respect for autonomy.
People living with dementia experience and understand the world in uniquely individual ways. While their brains may be impaired, their perceptions, emotions, and responses are not uniform. Yet too often, we homogenise them, assuming they are all the same simply because they share the same diagnosis.
What makes a difference is presence. When we are truly with them, fully present without agenda or motive, they can sense it. They don’t feel threatened. They feel safe. And in that space of safety, they often begin to open up.
Touch: The silent communicator
For many individuals with dementia, touch becomes an essential form of communication. It’s one of the last senses they hold onto, and it can convey so much more than words. Sometimes, a simple pat on the back, or a gentle touch to help them get seated can provide comfort and peace, even when verbal expression is difficult.
I’ve noticed this with my father, who sometimes forgets my name but still remembers the comfort of small, tender actions. Whether it’s adjusting his shirt or helping him get seated comfortably, he may not recall my name, but he often gives a small nod or sighs in contentment, letting me know he feels at ease. These simple gestures provide him with reassurance and comfort, showing me that he still experiences care and connection, even when his memory falters.
Touch can help bring calmness, connection, and even joy to moments that feel uncertain. In a world where words often fail, touch becomes the silent communicator that speaks volumes.
The role of routine: Creating a sense of security
Dementia often affects the ability to plan or recognise the passage of time. For someone living with dementia, everything may seem unpredictable, which can lead to feelings of insecurity and anxiety. But one of the most effective ways we can support our loved one is by creating a predictable routine.
For my father, knowing that his morning starts with drinking water, taking his blood pressure, followed by a light exercise routine or a visit to the active ageing centre, and then lunch at the same time each day, helps him feel grounded. Even if he can’t remember the specific activities, the rhythm of the day brings comfort. The familiarity of routine provides a sense of control in a world that is often slipping away from his grasp.
As family members, we can help provide structure without overwhelming him with excessive details. The repetition of familiar actions and the predictability of daily activities can help reduce anxiety and improve his overall wellbeing.
“One of the most common challenges I see is that caregivers often try to do everything on their own,” says Dr Chan. “They feel they must shoulder the full weight of responsibility, which can quickly lead to burnout. But dementia care is not a lone ranger job—it’s not something anyone should face alone.”
She emphasises the importance of building a support system from the very beginning. “We need a team to help us through this journey. Whether that includes family, friends, professionals or community services, the key is to establish that network early. It makes the process more sustainable and ensures both the caregiver and their loved one are supported in meaningful ways.”
Music, scents, and familiar things: Reconnecting through the senses
Though dementia brings changes, a person’s senses such as smell, sound, and sight, can remain powerful bridges to memory, emotion, and connection.
These sensory triggers, whether it’s music, a particular smell, or a familiar object can help bridge the gap between the present and the past. For families, this offers an opportunity to reconnect with a loved one in a meaningful way, even when verbal communication becomes difficult.
As caregivers, we can use these sensory experiences to create moments of recognition and comfort, grounding our loved ones in something familiar. It’s not about remembering the past as much as it is about creating an emotional connection to the present moment.
Patience: An essential part of support
Dementia can present varying challenges, with some days being more difficult than others. Patience becomes a valuable tool in caregiving, helping us navigate these ups and downs with understanding.
There are times when my father may not remember my name or recognise me, but I’ve learned to meet him where he is, without expectation. Sometimes, the most comforting thing I can do is simply sit with him, providing my presence and support, without rushing for solutions or answers.
Dementia can feel like an evolving relationship, and having patience allows us to offer steady, meaningful care that adapts to each new moment.
One of the most pressing issues is the lack of proper training in dementia care. Many care providers, whether professionals or informal caregivers, are not equipped with the skills needed to support someone living with dementia. This gap can lead to inappropriate responses, including the overuse of medication or, in some cases, neglect and abuse.
Dementia care requires a specialised approach that prioritises understanding, patience, and communication. Investing in targeted training is critical. When caregivers are properly trained, the quality of care improves significantly, and so does the dignity and safety of those living with dementia.
He is still him
Dementia may change the way my father communicates, but it doesn’t change the person he is at his core. His unique personality, sense of humour, and even his picky palate remain just as strong. As family members, it’s important for us to shift our focus from what has changed to what remains—the essence of who they are. Whether it's a shared laugh, a meaningful gesture, or simply being present, these moments remind us that they are still very much themselves.
By being present, understanding their body language, validating their emotions, offering touch, creating routine, and connecting through the senses, we ensure our loved ones with dementia feel seen, heard, and valued. In doing so, we let’s continue to offer them the respect, love, and support that honour their true selves, even when words are no longer enough.
Dr Cecilia Chan
Gerontologist, Dementia Advocate and Activist
BSC Eldercare Centre, Malaysia
Facebook: Cecilia Chan
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