When someone you love has dementia, it can feel as if the person you knew has disappeared, even while they are still sitting right in front of you. Many families describe a deep sense of grief and emptiness, like they are losing their loved one a little more each day, long before the body dies.
This feeling is very real, and there are reasons it happens. Understanding those reasons will not take away the pain, but it can help you make sense of what you are going through and find new ways to stay connected.
Why it feels like “they are gone”
Dementia is not just about forgetting names or misplacing items. It gradually changes how a person thinks, feels, behaves, and relates to others. Dementia affects areas of the brain responsible for memory, language, judgment, personality, and emotions. Over time, the disease can change almost everything that once made your loved one who they were in daily life.
You might notice that:
– They no longer remember shared memories that are precious to you.
– They use fewer words or speak in ways that do not make sense to you.
– They seem emotionally flat, or the opposite, more anxious, angry, or suspicious.
– They do not understand jokes, social cues, or family traditions.
– They cannot follow conversations, stories, or plans the way they used to.
When the usual ways of connecting begin to fade, it can feel as if the very “self” of your loved one has faded too. You may feel like you are talking to a stranger who has your loved one’s face and voice but not their familiar mind, personality, or warmth.
Changes in memory and shared history
One of the most painful losses is the loss of shared memories. Many types of dementia, such as Alzheimer disease, first affect the parts of the brain that store new information and then gradually affect older memories as well. This is why your loved one may forget:
– Recent conversations or events
– Important dates or family occasions
– How you are related to them
– Experiences you lived through together
Shared memory is a big part of closeness. When your partner does not remember your wedding day, or your parent does not remember raising you, it can feel like those years no longer exist for them. You may still hold those memories, but you are no longer holding them together. That can feel like a profound rupture in the bond between you.
Communication breakdown
Conversation is another way we recognize and feel close to someone. Dementia can affect language in many ways. Your loved one may struggle to find words, repeat questions, lose the thread of a conversation, or respond in ways that seem off topic or confusing. They might speak less, or sometimes not at all.
When communication changes, it can feel like the “connection line” between you is broken. It may be hard to share jokes, talk about your day, or have deeper discussions about feelings, plans, or memories. You might miss the way they used to comfort you, offer advice, or simply chat with you about simple things.
This loss of easy, natural conversation often leads to a feeling that the relationship you depended on is no longer there in the same way, which can be interpreted emotionally as “they are gone.”
Personality and behavior changes
Dementia can also alter a person’s mood and behavior. Areas of the brain involved in emotion, impulse control, empathy, and personality can be affected. You might see changes such as:
– Increased irritability, anger, or impatience
– Apathy and loss of interest in hobbies or relationships
– Suspicion or paranoia, including accusing loved ones of stealing or harming them
– Anxiety, restlessness, or wandering
– In some types of dementia, inappropriate comments or actions that are very out of character
When a previously gentle, loving person becomes irritable or suspicious, it can be shocking and painful. It may feel as if their kindness or warmth has been erased. If they no longer show interest in family events or in you, you might feel rejected, even though the withdrawal is caused by brain changes, not a choice.
All of this can give the impression that the core of who they are has vanished. Families often say things like, “This is not my mom,” or “He is a shell of who he was.”
Loss of roles and independence
Another reason it feels like your loved one is gone is that they gradually lose their roles in the family and in daily life. They may no longer be able to:
– Work or manage their own finances
– Drive or navigate familiar places safely
– Cook, shop, or manage the household
– Make decisions or solve problems the way they did before
If your loved one used to be the organizer, the protector, the decision maker, or the emotional anchor of the family, this loss can be especially hard. You may now be caring for the person who once cared for you. This role reversal can make it feel as though the person you depended on has disappeared and been replaced by someone fragile and vulnerable.
The idea of “ambiguous loss”
Many caregivers experience what experts call ambiguous loss. This is a type of grief that happens when a person is physically present but psychologically changed and partly absent. In dementia, your loved one is still alive and in your life, yet you are losing them in slow, unpredictable ways.
Ambiguous loss is confusing for the heart. You may feel:
– Deep sadness, but not the kind of grief that comes after death
– Guilt for feeling like they are gone when you can see them right in front of you
– Anger at the disease, at the situation, or even at the person, followed by guilt
– Isolation, because others may not fully understand your complex emotions
Recognizing that this is a known kind of loss can be validating. You are not “overreacting” or being disloyal by feeling this way. Your heart is responding to a very real and very complicated loss.
The person is still there in new ways
Even though dementia changes many aspects of a person, some parts of them often remain, especially at different stages of the illness. They may still respond to:
– A familiar song from their youth
– The touch of your hand or a gentle hug
– The sight of a beloved pet
– The taste and smell of favorite foods
– The rhythm of prayer, rituals, or cultural traditions
– The calm tone of your voice, even if they do not understand every word
You might still see flashes of their old personality: a certain smile, a phrase they always used, a habit, or a look in their eyes when they recognize something or someone. These moments can be brief and unpredictable, but they can also be deeply meaningful. They show that while the disease has changed much, there are still pieces of your loved one present.
Finding new ways to connect
Because traditional conversation and shared memory become harder, you may need to discover different ways of connecting that fit where your loved one is now. For example:
– Using music: Playing songs from their teens or early adulthood often brings comfort and can sometimes trigger singing along, tapping, or smiling.
– Using touch: Holding hands, brushing hair, giving a gentle hand or foot massage, or sitting close by can communicate love without words.
– Using photos and objects: Looking through old photographs or familiar objects
