When the Mind Fades But The Heart Still Knows – Dementia Care Insights

“One of the things I always say is that it’s not necessarily about the presence of certain behaviours, it’s about noticing changes in someone that aren’t typical for them. For example, if a person has always struggled with direction or is naturally a bit forgetful, that on its own isn’t usually cause for concern. But when someone who’s usually very sharp starts getting confused, losing their orientation, or repeating themselves often, those are some of the signs that something might be changing.

A common misconception is that memory loss is always the first symptom of dementia, but that’s not the case with every type. Sometimes it’s not about memory at all in the beginning. It might be more about patterns i.e. someone telling the same story multiple times in a short space of time, for example. And there’s a subtle but important difference between someone saying, “I’m sorry if I’ve told you this before,” and someone insisting they’ve never told you, even when you’ve heard it three times in the past hour. It’s these kinds of shifts that often prompt families to start thinking, something’s not quite right here”.

“One of the biggest misconceptions I come across is the idea that dementia and Alzheimer’s are completely separate things. I often hear people say, “My mum had Alzheimer’s and my dad had dementia,” – when actually, both parents had dementia, just different types. Dementia isn’t a disease in itself. It’s an umbrella term for the symptoms caused by different diseases of the brain. Those diseases, like Alzheimer’s, vascular dementia, Lewy body dementia, and frontotemporal dementia, each affect the brain in different ways and lead to very different symptoms.

Alzheimer’s, for instance, is the most common type we see and is typically linked to memory loss and confusion. Vascular dementia, which is often caused by strokes or restricted blood flow to the brain, can lead to difficulties with thinking, planning, and sometimes hallucinations. Lewy body dementia brings with it physical symptoms similar to Parkinson’s, along with vivid hallucinations and fluctuating alertness. And then there’s frontotemporal dementia, which affects the parts of the brain responsible for personality and behaviour. This type can be particularly tough for families because it often causes a complete shift in how someone acts, speaks, or expresses themselves, those natural ‘filters’ we all rely on can disappear.

Another important thing to understand is that dementia isn’t simply a part of ageing. Yes, it becomes more common as we get older, but it’s not a natural or inevitable part of growing old. Many people live well into their 90s or even reach 100 without any form of dementia. So, it’s really important to challenge the idea that memory loss or confusion is “just old age,” because it isn’t.

And to complicate things further, some people live with more than one type of dementia – what we call mixed dementia. That can make diagnosis and symptoms even more complex.

At the heart of it, I just want people to understand that dementia is a result of disease, not just ageing, and that there’s no one-size-fits-all. The more we understand the differences, the better support we can offer to people living with dementia and their families”.

“Yes, absolutely. One of the most difficult things families often share with me is the fear that their loved one doesn’t know them anymore. And that’s heartbreaking, but it’s also one of the biggest misconceptions. They may not always recognise your face or remember your name, but dementia isn’t just about memory, it’s about how a person feels. I always say, we care from the heart, not from the head. Even when the brain is affected, emotions like love, trust and safety remain. So, when a loved one hears your voice or feels your touch, there’s often a deep sense of comfort and connection that words alone can’t express. They do know you – in the way that matters.

Another big challenge families face is wondering if they’re getting things wrong – “Am I saying the right thing? Why does he keep doing that?” I hear it all the time, and I really empathise. It’s incredibly frustrating when someone you love starts doing things that feel out of character, like putting milk in the wrong cup or forgetting how to use everyday objects. But it’s not them being difficult, it’s their brain trying to make sense of a world that no longer follows the rules they once knew. Their routines, their patterns, the steps they’ve always followed, those connections are being disrupted, and it’s deeply disorienting for them.

Families can feel a huge sense of loss, and that’s completely natural. I often hear things like, “He’s just not the man I married anymore,” or “She’s changed so much.” And my advice is always: look beyond the behaviour. The person you love is still there. They may show up differently, but they are always still there.

Something else that can be tough is when people misunderstand behaviours as ‘difficult’ or even ‘aggressive’. For example, a person might lash out, swear, or even end up on the floor – and people might think that’s just part of the disease. But I always say, there’s no such thing as behaviour without reason. Every action is a form of communication. If someone can’t find the words to say what they’re feeling, they’ll show it in other ways. It might be frustration, fear, sadness, or confusion, but it’s never meaningless. And importantly, people with dementia are not children, even if their behaviours might seem childlike. Their identity, dignity, and life experience remain, even if they can no longer express it in the ways we expect.

Structure and routine are so important. While they may not always know what time of day it is or whether it’s breakfast or lunch, having familiar routines in place can create a sense of security and normality.

Dementia is, in many ways, an illogical way of living. It doesn’t follow the rules we’re used to, and that can be incredibly hard for families. But when we step back, understand the ‘why’ behind behaviours, and respond with compassion rather than correction, we create moments of connection that really matter.”

“Supporting families is a huge part of what we do at Aria, because dementia doesn’t just affect the person living with it, it affects everyone around them. One of the ways we help is by creating space for families to understand why these behaviours are happening. I call it “The Whys of Dementia” – questions like “Why is my mum doing this?” or “Why does my husband keep forgetting?” These are deeply emotional questions, and I run regular family events across our homes where we talk about exactly that. I give a presentation to explain some of the science and emotion behind what’s going on, and then we open it up for Q&A, so families can ask the questions they might not feel comfortable asking elsewhere. Often, just hearing “you’re not alone in this” is a huge comfort.

We also work closely with our teams so they can support families day to day. Whether it’s involving external partners like Admiral Nurses or local Alzheimer’s Society teams, or simply being a calm, safe place where someone can say, “Help, I don’t know what to do next”, we make sure those conversations are happening. I know how overwhelming it can feel. My own dad has dementia, so I truly do get it. I’ve stood in those shoes where you go from carer to daughter and back again in seconds, and you’re trying to hold it all together. It’s raw, and it’s real.

One of the more exciting parts of our new dementia strategy is our commitment to becoming Dementia Friends through the Alzheimer’s Society. That means our teams, and our families, have access to more awareness, more understanding, and more practical guidance. I’m already a Dementia Friend myself, and some of our homes have started this journey, but my goal is for all our homes to be dementia-friendly spaces. It’s not just about training, it’s about changing culture, building empathy, and making sure that people with dementia, and those who love them, feel truly seen.

We’re also rolling out dementia ambassadors across our homes. These will be the everyday eyes and ears, supporting individuals living with dementia, but also being a go-to for families who just need someone to talk to. I’ve already got over 30 ambassadors-in-training, with many more to come. It’s a big task, 67 homes is a lot! But we’re making real progress, starting with 14 of our homes. And honestly, the passion from our teams has been amazing.

Ultimately, our aim is simple but powerful: to make sure that no family has to navigate dementia alone. We’re walking the path with them, every step of the way”.

“At Aria, our approach to dementia care is deeply individual, it’s never one-size-fits-all. While many providers talk about “person-centred care,” for us it’s about genuinely seeing the person before the dementia. That means understanding their routines, preferences, identities, and life stories, and building everything around them. We don’t try to fit people into our way of working, we shape our care around who they are and what matters to them.

In our dementia communities, you might find 14 people, but you’ll never find the same care plan twice. We create personalised plans and meaningful relationships that reflect each person’s background, interests, and needs. Whether that’s a small bridge group that’s formed between four ladies who loved the game, or honouring someone’s faith by helping them reconnect with church services through our mobile interactive tech.

I often say I don’t like the phrase “living well with dementia” because, honestly, even I don’t feel I live well every single day. Instead, we focus on helping people live their best life with dementia, whatever that looks like for them. One gentleman, for example, is thriving in one of our homes because he shares a connection with the manager around their LGBTQ+ identity. Another lady, in the later stages of dementia, rediscovered joy and calm through virtual Mass and Catholic hymns projected directly into her room. It’s those small but powerful, personal details that make the biggest difference.

And it’s not just the care team, it’s our whole culture. We work with families to bring in mementos, routines, even tiny trinkets that have emotional meaning. We encourage them to make rooms feel like home. So, if someone’s having a tough day, and their favourite song might lift their spirits, our teams know it, and they’ll play it. That emotional connection, that feeling of safety and being truly known, is what sets us apart. It’s the heart of everything we do”.

“Absolutely, families are central to that process.

We simply couldn’t provide meaningful, personalised care without them. They’re often the ones who hold the key to those important little details that help us truly understand who someone is. Things like childhood memories, favourite routines, or emotional triggers – they help us build a full picture of the person behind the diagnosis.

Sometimes we have to do a bit of gentle detective work. For example, a resident might ask, “Where’s my dog?” and the family might say, “They never had one.” But that memory could be from childhood, or it could be a feeling sparked by something familiar. Those are the kinds of moments where having the family’s input is invaluable, it helps us connect the dots in a way that feels real and comforting for the person.

Of course, not every resident has close family nearby, or even involved at all. In those cases, we take on that role ourselves. Our teams spend time observing, listening, and learning what brings comfort or sparks joy, whether it’s how someone eats, what music soothes them, or how they like their room set up. It’s about tuning in to every detail, even the unspoken ones.

But when families are involved, we invite them to be part of everything. From decorating their loved one’s room to sharing old photographs and keepsakes – it all helps us create a space that feels familiar, safe, and truly theirs. And if we can put a smile on someone’s face – even just for a moment – that’s when we know we’re getting it right”.

“One of the biggest challenges is that many people don’t realise (or accept) that they’re moving in permanently. Often, they think they’re just visiting for the day. So, when that visit seems to ‘end’ and they’re still with us, we’ll hear things like “I want to go home” or “I don’t want to be here.” Understandably, there’s fear, confusion, and a sense of not having had a choice. And that’s incredibly difficult, both for the person and their loved ones.

We also guide families through this transition, sometimes advising them to wait a few days before visiting again, because seeing a loved one leave and then disappear again can be very distressing. We work to establish trust and routine, and slowly, residents start forming new bonds with carers, with other residents, and with the space around them. Their room becomes their sanctuary, filled with loved objects from home, so it feels like their space.

Ultimately, we understand that the dominant emotion during this time is often fear. Imagine being dropped into a foreign country where you don’t speak the language – how disorienting and vulnerable that would feel? That’s what many people living with dementia experience in those early days. So, our job is to gently guide them through that fear into a place of safety, comfort, and belonging”.

“Well, the truth is, there really isn’t a one-size-fits-all “typical” day because it all depends on the individual. And that’s exactly how we like it. Everything starts with where that person is in their dementia journey and, just like all of us, how well they’ve slept the night before! That can shape the whole tone of the day.

We’re very mindful that many of our residents join us in the mid to later stages of dementia, often after staying at home has become too risky – like waking at 3 a.m. thinking it’s time to do the shopping. When someone moves in, our goal is to create a routine that feels familiar, comforting, and above all, personal.

So, a typical day begins with choice. There’s no strict wake-up call, residents get up when they’re ready. Breakfast is served however they like it, whether in their own room or with others in the dining area. It’s about maintaining dignity and personal preference from the very first moments of the day.

Throughout the day, we offer a wide range of meaningful activities. These could be group-based, like music sessions, gardening, or pet therapy, or quiet one-to-ones based on what each resident enjoys, whether that’s reading, sorting, painting, or even helping lay the breakfast table. We also build in personalised routines: if someone always cleaned their room on a Thursday, we’ll give them a duster and help them continue that tradition. Those small, familiar habits help maintain a sense of control and identity.

We make sure every space is stimulating – tables always have something on them: a puzzle, a book, a newspaper, a pen – something that gently encourages the person to sit, engage, and feel purposeful. Because when someone sits down and sees nothing, they often think, “What am I supposed to do here?” and might get up and walk. But a simple object can prompt a sense of routine and calm.

Meals are social, relaxed, and flexible. There’s always a choice, and if someone doesn’t feel like eating at mealtime, we offer small bites throughout the day. In the afternoons and evenings, we might have entertainers, flower arranging, or craft sessions. And for those who’ve spent a lifetime working night shifts and don’t like going to bed when it’s dark, there are always options to keep them gently engaged well into the evening.

Above all, every day is shaped around the individual, their preferences, habits, and needs”.

“Oh yes, there are a few moments that stay with you forever, but there are two in particular that I’ll never forget.

One was a gentleman who had dementia and had completely lost his spark. Before moving into our care, swimming had been a huge part of his life, something he did every single day. But after moving in, that part of him was just… gone. He was low, withdrawn, and you could tell he felt like there wasn’t really much left to live for. And that’s when the team did something wonderful.

They began researching local pools to see if there was any way we could get him back in the water. And it turns out, there was. The local baths had specific sessions for people with additional needs, and they welcomed the idea. So, we arranged for our minibus to take him once a week. The first time he went, they sent me a photo, he was in a big inflatable ring, legs kicking, absolutely beaming. He was laughing. Truly laughing. It was like a part of him came alive again, just for that moment. And he kept going every week until he sadly passed away. But in those sessions, he wasn’t a resident with dementia. He was just himself again. And that’s all we ever want, isn’t it?

The second moment was with a lady who was quite frail and mostly cared for in bed. We knew she loved music, but not exactly what type. One day, we had a string quartet visiting the home, and someone had the beautiful idea to ask them if they’d go room to room for those who couldn’t come to the main performance. They agreed, and when they quietly entered this lady’s room and began to play… something extraordinary happened.

She started to move, trying to sit up, eyes wide, completely captivated. It was like something inside her woke up. The music connected to a part of her we hadn’t been able to reach. I remember just standing there with her manager, both of us in tears. It was such a pure, human moment. You could see her soul light up.

It’s in those moments – the splash of water, a string of music – that we’re reminded: dementia might change someone’s daily life, but it doesn’t erase who they are. Our job is to find the key that unlocks that person again, even if just for a moment. And when we do, it’s magic”.accordion-white open-accordion

“It really all starts with understanding the person, not just their medical needs, but who they are. Care planning is at the heart of that. Yes, we rely on risk assessments, and professional frameworks, but the real success happens when the care plan becomes a living, breathing guide that evolves with the resident. Because dementia isn’t static, and neither are the people living with it.

Many of our residents have multiple conditions on top of their dementia, like diabetes, heart disease, or limited mobility, which adds layers of complexity. And dementia itself brings challenges that can’t always be predicted. One day a resident may be calm and content, the next they might be distressed or suspicious, even refusing essential medication. And it’s not because they’re being difficult, it’s because their brain isn’t processing the world in the same way.

That’s something we’re really passionate about helping people understand: dementia isn’t a mental health condition, its symptoms caused by diseases in the brain. It affects the brain, and because it’s invisible, it’s often misunderstood. You wouldn’t question someone for limping with a broken leg, but if someone living with dementia behaves in a way that seems unusual, people can be quick to judge. “They’re 85, they should know better”, we hear that a lot. But the truth is, it’s not their fault. Their brain just isn’t functioning as it once did. That’s why care planning and education go hand-in-hand because empathy grows when we understand what’s really happening.

So, how do we manage it all? By knowing our residents deeply. By watching for signs, a change in mood might mean they’re in pain or developing a UTI. By being flexible, especially as the disease progresses and routines shift. And by working as a team. Some days are tough, no question. But we regroup, we support each other, and we go again, because when you see a spark of joy, or someone laugh like themselves again… that’s when you know the care plan isn’t just working – it’s giving that person their life back”.

“That’s such an important question because people can still feel pain even if they can’t communicate it. In fact, when someone’s living with dementia, we often have to look harder for the signs. It’s a different kind of listening.

We observe facial expressions like grimacing, frowning, flinching when touched. If someone who used to walk steadily starts limping, or they suddenly withdraw from activities they usually enjoy, those can be powerful indicators too. We use tools like the Abbey Pain Scale, which is designed specifically for people who can’t articulate their pain. It looks at things like body language, vocal sounds, facial expressions, and changes in behaviour before and after movement.

We’ve also embraced innovation like PainChek®, a clever app that uses facial recognition to detect micro-expressions linked to pain. It gives us another layer of insight, especially for residents who might not even recognise they’re in pain themselves.

With dementia, you often need to check for pain more than you would with someone who can speak up. Because sometimes the brain simply doesn’t register pain in the usual way. We’ve had residents with broken hips who kept walking, not because they weren’t hurt, but because their brain wasn’t processing the pain properly.

So, we stay curious. We stay gentle. And we never assume silence means comfort. It’s about tuning in better”.

“There’s definitely a real shift happening, you can feel it. Dementia is no longer a hidden word whispered behind closed doors. It’s being spoken about openly, and that’s one of the biggest signs of progress. Like we saw with cancer years ago, we’re now seeing dementia becoming part of everyday conversations. People are talking, reading, sharing, and that openness is breaking down stigma.

What excites me most is how much earlier we’re diagnosing now. Not long ago, if someone in their 40s or 50s showed signs, they’d be told it was stress and sent home. Now, we know younger people do get dementia, and by recognising it earlier, we can offer treatments that help ease the progression. They’re not cures, but they smooth the path a bit.

There’s also exciting research happening, particularly around biomarkers in blood tests. Imagine going to your GP, having a routine blood test, and being able to detect changes in the brain before symptoms appear. That’s where we’re heading. There are already drugs in trials in the US that stop the proteins responsible for killing brain cells. They’re not yet available here, but they lay the groundwork for more accessible treatments in the future.

And we now understand how lifestyle plays a role too. What’s good for your heart is good for your brain, so things like staying active, eating well, and avoiding smoking can reduce your risk. It’s not about eliminating dementia, but about giving people the best possible chance.

To me, that’s where the real hope lies: in research, in awareness, and in the shift towards treating people with dignity, at every stage”.

“The most important thing I’d say is: they’re still your person. Even when they can’t say your name. Even if they don’t always recognise you. The love is still there. You might not hear it back in words, but it’s in a held hand, a look, a smile. That part doesn’t disappear.

When families are considering care, there’s often a huge amount of guilt. It’s completely understandable, but it’s important to know that choosing care doesn’t mean giving up. In fact, it’s often the opposite. It’s about giving your loved one the best possible life, with the right support.

Care teams can help with things like personal care, meals, and routines, freeing families to just be family. To bring the love without the constant stress and exhaustion. And yes, sometimes someone might say “I want to go home,” but that’s where we step in, to help make this new place feel like home. With familiar items, consistent faces, and lots of heart.

And finally, don’t ever think they’re gone. You just have to reach a little deeper sometimes. But they’re still there, the same person you’ve always loved”.