Because the Person Living With It Isn’t the Only One Who Has to Change
I was driving the other day, thinking about dementia. Not an unusual occurrence for me, considering the work I do, but this time a thought struck me differently. I started thinking about what makes dementia so incredibly difficult, not only for the person living with the diagnosis but for everyone who loves and supports them. And then it dawned on me. Dementia may be one of the few diagnoses where the greatest responsibility for changing and adapting falls not on the person diagnosed, but on everyone around them.
Think about that for a moment. When someone receives a medical diagnosis, we typically talk about what they need to do differently. They may need to change their diet, exercise more, take medications, follow a treatment plan, or make adjustments to their lifestyle. There is often an expectation that the person diagnosed will take an active role in managing their condition. But dementia is different. Dementia changes the very organ responsible for understanding, reasoning, remembering, communicating, making decisions, and adapting to new situations. The abilities we would normally rely on to recognize a problem and make the necessary adjustments are often the very abilities being affected by the disease.
Yet, despite knowing this, we frequently continue to expect the person living with dementia to adjust to the world around them rather than recognizing that the world around them needs to adjust to their changing abilities.
We expect them to remember conversations, understand explanations, recognize when something is unsafe, and accept help when we believe they need it. We become frustrated when they repeat the same question, resist assistance, make decisions that don’t seem logical, or respond in ways that feel completely out of character. We may find ourselves saying, “I just told you that,” or “We’ve already talked about this,” without realizing that we are asking a brain that is changing to function as though nothing has changed at all.
I believe this is where so much of the struggle begins.
When Our Expectations Don’t Match Their Abilities
One of the most challenging aspects of dementia is that brain changes are not always obvious. A person may look exactly as they always have. They may still carry on a pleasant conversation, tell a familiar story, laugh at a joke, or engage socially in ways that make everything seem perfectly normal. Because we continue to see so many familiar qualities, it is natural to assume that other abilities must still be intact. But dementia does not affect every part of the brain equally or at the same time.
Someone may remember an event from 40 years ago but struggle to recall something that happened just minutes earlier. They may be able to read words but have difficulty processing their meaning. They may participate in a wonderful conversation during a family gathering but struggle to organize the steps needed to prepare a simple meal. They may appear capable one moment and completely overwhelmed the next. This inconsistency can be incredibly confusing for families, especially when the person seems to demonstrate an ability in one situation but cannot repeat it in another.
Without an understanding of brain change, these situations can easily be misinterpreted as stubbornness, manipulation, laziness, or a refusal to cooperate. Families may believe their loved one simply isn’t trying hard enough or is choosing not to listen. But what if we approached these moments with a different perspective? Instead of asking why someone won’t do something, what if we started asking whether their brain is still able to do what we are expecting?
That shift in thinking is incredibly powerful because it changes our response from frustration to curiosity. Rather than trying harder to convince, correct, or reason with someone, we begin looking for ways to support the abilities they still have.
Allowing Grace and Space for Brain Change
I often remind families that the person living with dementia is experiencing changes they may not fully understand themselves. Imagine navigating a world where conversations become increasingly difficult to follow, familiar tasks suddenly feel overwhelming, and the people around you seem frustrated by things you don’t realize you are doing. Imagine being corrected throughout the day, reminded of your mistakes, or repeatedly told what you can no longer do. Now imagine that the very part of your brain responsible for understanding why these things are happening is also changing.
When we begin to look at dementia through that lens, it becomes easier to recognize how important it is to allow people grace and space as they navigate the effects of the disease. Grace to make mistakes without constant correction, space to process information at their own pace, and the opportunity to continue participating in their lives in ways that feel meaningful and successful. It means recognizing that a person may need more time, fewer words, a different approach, or additional guidance rather than another explanation.
Providing grace and space does not mean ignoring safety concerns, removing boundaries, or pretending the changes aren’t happening. It means adjusting how we respond while continuing to preserve dignity, autonomy, and emotional well-being. It means recognizing that even when someone is losing certain cognitive abilities, their need to feel respected, valued, included, and connected remains.
And this brings me back to the realization I had while driving. If the person living with dementia is experiencing changes that make it increasingly difficult to adapt, then those of us surrounding them must become the ones willing to make the adjustments.
The Responsibility to Adapt Falls on All of Us
This may be one of the hardest parts of dementia for families to accept, not because they don’t want to help, but because it requires changing patterns of communication and relationships that have existed for decades. A spouse who has always relied on conversation and reasoning to work through disagreements may now need to learn that explaining something repeatedly is no longer effective. An adult child who has always looked to a parent for guidance may suddenly find themselves needing to offer support in ways that preserve their parent’s dignity without creating conflict. A caregiver may need to recognize that resistance to personal care is not necessarily someone being difficult, but perhaps a response to feeling rushed, confused, frightened, or overwhelmed.
These are not small adjustments. They require us to change how we communicate, how we approach situations, how we interpret behavior, and perhaps most importantly, what we expect from the person living with dementia. We may need to slow down, simplify our words, demonstrate rather than explain, offer choices differently, or recognize when a situation is becoming too overwhelming. We may need to stop correcting every inaccurate statement and instead focus on the emotion behind the words. We may need to accept that being right is not always the same as being helpful.
And while these strategies may sound simple, putting them into practice can be incredibly difficult, especially when we are tired, worried, grieving, or overwhelmed ourselves. It is hard to change how you interact with someone you have known and loved for years. It is hard to accept that the communication strategies that once worked so well may now create frustration. It is hard to recognize that a person you have always depended on may no longer be able to meet the same expectations.
This is why I believe we need to talk more openly about the fact that dementia doesn’t just change the person living with the disease. It changes relationships, routines, responsibilities, and the way families navigate everyday life. Everyone involved is learning to live with a new reality, and that adjustment deserves just as much attention as the diagnosis itself.
Why Education Makes Such a Difference
This is also why I am so passionate about dementia education. I don’t mean simply understanding the different types of dementia or knowing the common symptoms. I mean truly understanding what is happening in the brain and how those changes affect a person’s ability to function in everyday situations. When families begin to understand brain change, behaviors that once seemed confusing or intentional often begin to make more sense.
For example, when we understand that dementia can affect a person’s ability to process spoken language, we recognize that repeating the same explanation louder or more forcefully may not help. Instead, we learn to use fewer words, allow additional processing time, and provide visual or physical guidance when appropriate. When we understand that the brain may struggle with initiating or sequencing tasks, we stop assuming someone is refusing to participate and begin offering support one step at a time. When we recognize that reasoning, judgment, and insight can be affected, we begin to understand why logical explanations don’t always produce the response we are hoping for.
Education helps us move away from the belief that the person living with dementia simply needs to try harder and toward the understanding that we need to approach things differently. It gives us practical tools to reduce unnecessary frustration, preserve independence, and create more positive interactions. It also helps us recognize and build upon the abilities that remain rather than focusing exclusively on what has been lost.
Education cannot stop the progression of dementia, but it can dramatically change how dementia is experienced by everyone involved. It can transform moments of conflict into opportunities for connection, help families feel more confident in their approach, and reduce the emotional toll that comes from repeatedly expecting something a person may no longer be capable of doing.
The People Providing Support Need Support, Too
Of course, understanding dementia and having the emotional capacity to respond effectively every single time are two very different things. A spouse may understand why their partner asks the same question 20 times, but that doesn’t mean answering it for the 21st time isn’t exhausting. A daughter may recognize that her mother’s refusal of help is connected to changes in insight and reasoning, but that doesn’t mean the rejection doesn’t hurt. A professional caregiver may know the importance of remaining calm and patient, but they are human, too.
There is an emotional weight to dementia that cannot be overlooked. Families are often grieving changes while the person they love is still physically present. They may feel sadness, frustration, guilt, fear, resentment, and exhaustion, sometimes all within the same day. They are being asked to learn new skills, adjust long-standing expectations, make difficult decisions, and manage an unpredictable disease, often without the education or support needed to feel successful.
That is why I believe education and emotional support must go hand in hand. Families need more than information about what dementia is; they need guidance on how to navigate it. They need opportunities to ask questions, talk through challenging situations, learn practical strategies, and connect with others who understand what they are experiencing. They need permission to acknowledge that this is hard without feeling that they are somehow failing the person they love.
And perhaps most importantly, they need to understand that caring for someone living with dementia does not mean they have to do everything themselves. Seeking support, accepting help, and recognizing their own needs are not signs of weakness. They are essential parts of creating a sustainable and compassionate care environment.
Changing Our Expectations Can Change the Experience
As I continued thinking about this, I realized that so much of our frustration with dementia comes from a mismatch between what we expect and what the changing brain can actually deliver. We are accustomed to relationships built on mutual understanding, compromise, memory, and reasoning. We expect that when we explain something clearly enough, the other person will understand and adjust their behavior. But dementia can gradually interfere with those abilities, making the familiar ways we communicate and solve problems less effective.
The person living with dementia may not be able to consistently change how they respond, remember what we have explained, or recognize why we are asking them to do something differently. That doesn’t mean they have lost their voice, their preferences, or their ability to participate in decisions. It means we must recognize where their abilities are changing and adjust our expectations accordingly.
We need to become more flexible in our approach and more realistic about what success looks like. Sometimes success isn’t completing a task exactly the way it has always been done. Sometimes it is helping someone participate in part of the task while preserving their sense of independence. Sometimes it is avoiding an unnecessary argument, finding a moment of laughter, or simply helping someone feel safe and understood.
When we begin measuring success through connection, dignity, comfort, and remaining abilities rather than through compliance or perfect performance, we create a very different experience for the person living with dementia and for ourselves.
A Different Way Forward
Dementia is hard. There is no way around that. It is hard for the person experiencing the changes, and it is hard for everyone who loves and supports them. But I believe it becomes even harder when we don’t understand where the responsibility for adapting needs to shift.
We cannot expect someone to consistently rely on abilities that their disease is affecting. We cannot assume that repeating ourselves, reasoning more intensely, or becoming frustrated will somehow overcome changes occurring in the brain. What we can do is educate ourselves, adjust our expectations, change our approach, and create environments and relationships that support the person’s remaining strengths.
We can offer the person living with dementia the grace and space they need to navigate a world that may be becoming increasingly confusing. And we can make sure that the family members, friends, and professional caregivers surrounding them receive the education, tools, and emotional support they need to navigate those changes as well.
That is what makes dementia care so different. It isn’t simply about caring for someone as their abilities change. It is about learning how to change alongside them.
We may not be able to change what dementia is doing to the brain, but we absolutely can change how we respond to the person living with it. And sometimes, that change makes all the difference.
Jen Riggs is a Dementia Specialist and Director of Dementia Services at Dementia Family Support. Through dementia education, caregiver coaching, family consultations, and professional training, she helps families and care partners better understand brain change and develop practical, compassionate approaches to dementia care.
