Understanding the Experience of Dementia
Dementia changes far more than someone’s memory. For those living with it, the condition reshapes how they perceive, interact with, and make sense of the world around them. Everyday experiences that many of us take for granted—recognizing a familiar face, following a conversation, finding comfort in a favourite routine—can suddenly feel confusing or even overwhelming.
This blog is an invitation to step into that perspective. By understanding what dementia feels like from the inside out, families and caregivers can better respond with patience, compassion, and respect.
What Changes in the Brain During Dementia?
Dementia doesn’t just affect memory. It changes the way the brain works on many levels, altering how a person thinks, feels, and interacts with the world. These changes happen because brain cells (called neurons) become damaged and can’t “talk” to each other the way they used to. Depending on the type of dementia, this damage can occur in different regions of the brain, leading to different symptoms.
Here are some of the key ways dementia can affect brain function:
- Decision-making and judgment: When the frontal lobes are impacted, even simple decisions can feel overwhelming. For example, choosing between a sweater and a shirt might leave someone anxious or unable to decide.
- Spatial awareness and navigation: Damage to areas of the brain that process space and orientation can make once-familiar places confusing. A person might get lost in their own neighbourhood or misjudge distances when reaching for a cup.
- Emotions and mood regulation: The parts of the brain that help us manage emotions can shift, which may cause sudden irritability, anxiety, or sadness. These emotional changes aren’t deliberate; they’re the brain’s way of misfiring signals.
- Language and communication: When language centres are affected, a person may struggle to find words, follow conversations, or express themselves clearly. You might hear phrases like, “You know, that thing...the thing for cooking” instead of “stove.”
- Memory and learning: While short-term memory is often the first to decline, dementia can eventually affect the ability to learn new information or recall long-cherished events.
These changes can cause confusion, frustration, and sometimes fear for the person living with dementia and for their loved ones. Imagine being unable to remember the steps for making a cup of tea you’ve made every day for years, or feeling like your home suddenly looks unfamiliar. These moments aren’t stubbornness or lack of effort; they are physical consequences of brain changes beyond the person’s control.
Understanding this helps families reframe their approach. Instead of asking, “Why won’t Mom just remember?” we can ask, “How can I support her in this moment?” That perspective shift opens the door to more patience, empathy, and compassionate care.
How Dementia Affects Daily Experiences
Imagine waking up in your own home but feeling unsure of where you are, or walking into a room full of loved ones but struggling to recognize their faces. These are some of the day-to-day realities for people living with dementia.
Common experiences may include:
- Losing track of time or place: Days, seasons, or even one’s own location may blur together.
- Difficulty recognizing faces or objects: Familiar people or possessions may feel strangely unfamiliar.
- Overwhelmed by noisy environments: Crowded or loud places can quickly trigger distress.
- Anxiety when routines change: Sudden changes to daily habits may leave someone feeling lost or unsafe.
When families picture these moments, it becomes easier to understand why someone might act withdrawn, anxious, or defensive.
Watch “Understanding the Experience of Dementia,”
a moving look into how the condition can alter daily life and reminds us of the importance of empathy.
Emotional and Psychological Impact
Living with dementia involves coping with memory loss, but it’s also about how those changes make a person feel. Imagine the confusion of walking into your kitchen and not recognizing it, or starting a sentence and realizing you can’t remember the next word. These experiences often trigger strong emotional responses, and the effects can ripple into daily life.
Moments of Clarity and Confusion
People living with dementia often describe “good days” and “bad days.” One morning, they may remember a grandchild’s name easily, while later that same day, they may struggle to recognize them. This unpredictability can be distressing, both for the individual and their loved ones.
Embarrassment or Shame
Many people are painfully aware when they forget things or lose their train of thought. They may withdraw from conversations or social gatherings out of fear of “slipping up.” For example, a person might stop attending their weekly card game because they feel embarrassed about forgetting the rules.
Grief and Loss
Dementia can bring a sense of mourning. This is common for both memories and abilities that fade, as well as for independence and identity. A person may say, “I don’t feel like myself anymore,” expressing a deep awareness of the changes taking place.
Fear, Anxiety, and Paranoia
When the world feels unpredictable or unfamiliar, it’s natural for someone to feel suspicious or fearful. They may believe someone has stolen their belongings when, in fact, they misplaced them. This isn’t stubbornness: it’s how their brain is trying to make sense of gaps in memory. Yet, even in these difficult moments, reassurance and gentle support can help restore calm and build trust.
How Caregivers Can Navigate Impacts
For families and caregivers, these emotional shifts can be heartbreaking. It’s difficult to see a loved one afraid, frustrated, or withdrawing. But here’s where empathy and reassurance matter most. Instead of correcting or dismissing feelings, offering validation can ease distress.
For instance:
- If your loved one insists they need to “go home,” even though they are already there, rather than saying, “You are home — don’t you remember?” try: “Tell me about your home. What do you love about it?” This honours their emotions while gently redirecting the moment.
- If they express embarrassment over forgetting something, a kind response like, “That’s okay — we all forget things sometimes. I’m here to help,” can restore dignity and reduce shame.
Patience, reassurance, and creating a sense of emotional safety are essential. When people living with dementia feel respected and understood, even in moments of confusion, it helps ease fear and supports a better quality of life.
How Dementia Can Affect Relationships
Relationships inevitably shift when communication changes. A spouse may no longer be recognized. A parent may lash out or withdraw. Repeated questions can test patience.
It is critical to keep in mind that these reactions are not personal. They are symptoms of the condition. Families and loved ones can make a few small changes in their communication with someone living with dementia to help ease confusion:
- Using names rather than “he” or “she.” Names help anchor conversations and reduce confusion. Saying, “Your daughter Anna is visiting later,” is clearer and more personal than, “She’s coming.”
- Maintaining eye contact to show presence. Sitting at eye level and looking directly at your loved one communicates attention and warmth, even when words are hard to follow.
- Offering gentle reminders instead of corrections. Corrections can cause frustration; gentle cues are kinder. For example, instead of “I told you already,” try, “Yes, it’s Tuesday. That’s our walking day.”
Love and connection are still possible, even when words falter.
The Importance of Familiarity and Routine
For someone living with dementia, predictability is a source of comfort. Familiar sights, sounds, and smells (like a well-worn armchair, a cherished family photo, or the aroma of morning coffee) can provide grounding and reassurance in moments of uncertainty.
By contrast, sudden changes or disruptions can feel overwhelming and may lead to agitation or fear. That’s why creating a consistent environment and routine is so important. Families and care providers can help by:
- Keeping living spaces tidy, organized, and free of clutter.
- Surrounding the person with meaningful objects that evoke recognition and comfort.
- Following regular daily schedules for meals, rest, and activities to establish rhythm and security.
These minor but intentional adjustments can transform the day-to-day experience, helping life feel calmer, safer, and more familiar.
Listening to People Living with Dementia
Even as dementia progresses, every person continues to have thoughts, feelings, and preferences worth honouring. Listening, in this context, means going beyond words. It’s about tuning in to body language, facial expressions, tone of voice, and subtle gestures.
A smile, a frown, or a restless hand tapping on the table can communicate far more than a sentence ever could. By slowing down and paying attention to these cues, families and caregivers show respect and create meaningful opportunities for connection.
Many people living with dementia have expressed how powerful it feels simply to be heard, even if their sentences wander or their words don’t always make sense. What matters most is not perfect understanding, but the dignity and reassurance that come from being acknowledged.
Preserving Dignity and Identity
A dementia diagnosis does not erase who someone is. Behind the condition remains a person with a lifetime of experiences, values, and passions that deserve to be honoured. Preserving dignity means seeing the individual first, not just their illness.
Respecting choices and preferences, like what they want to wear, what music they want to listen to, or how they want to spend the afternoon, helps maintain a sense of control and independence. Familiar activities like gardening, baking, or listening to a favourite song can spark joy and reinforce identity, even when memory fades.
Life stories are another powerful way to preserve connection. Looking through photo albums, recording family memories, or talking about past experiences allows people living with dementia to remain rooted in who they are and what matters most to them.
Download Understanding Dementia: A Caregiver’s Guide to Support, Communication & Care
Caring for someone living with dementia can feel overwhelming, but you don’t have to navigate the journey alone. This comprehensive caregiver’s guide on dementia offers practical strategies, compassionate communication tips, and evidence-based approaches to help you support your loved one with dignity and confidence.
Inside, you’ll find:
- Clear explanations of how dementia affects daily life and relationships
- Practical tips for communication, routines, and caregiving
- Guidance on preserving identity, joy, and meaningful connection
Download your copy today and empower yourself with knowledge, tools, and hope.
This article is for educational purposes only and is not a substitute for professional medical advice. Always consult a qualified healthcare provider for guidance tailored to your situation.