Dementia affects memory, thinking, and behavior, and it can be difficult to know exactly how much someone with dementia understands about their condition. For caregivers and family members, learning how the brain changes after a dementia diagnosis can help guide communication, support daily care, and foster empathy as your loved one’s needs evolve. Do people with dementia know they have it after they receive the diagnosis?
Are Dementia Patients Aware of Their Condition?
Many people with dementia may not realize they have the condition. Some individuals, especially in the early stages, recognize changes in their memory or thinking and may express concerns like, “I don’t feel like myself” or “I keep forgetting simple things.” These remarks indicate they sense that something is wrong, even if they don’t yet have a formal diagnosis.
However, many people with dementia lose this awareness over time or never fully understand what’s happening to them. This is often due to the way dementia affects the areas of the brain that are responsible for thinking and self-reflection, making it harder for them to recognize changes in their behavior. This lack of insight, known as anosognosia, is fairly common in dementia and leads some individuals to deny or be unaware of their memory loss.
Dementia Awareness May Fluctuate
A person with dementia may understand their condition at one moment and forget or deny it the next. Factors like emotional state, fatigue, surroundings, and even the time of day can influence their level of awareness.
For example, many caregivers observe that memory and behavior worsen in the evening, a phenomenon called “sundowning.” This shifting awareness adds complexity to caregiving and highlights how dementia affects each person’s mind differently and unpredictably.
As dementia progresses and awareness diminishes, caregivers often need to step in to oversee important responsibilities, including handling finances and managing medication. Beginning the process of taking over a parent’s finances early, while they still understand and can agree, can protect their interests and reduce stress for everyone involved.
What Are Some Factors Influencing Awareness in Dementia?
Several factors can affect whether or not a person with dementia is aware of their condition.
Type of Dementia
Alzheimer’s disease often starts with memory problems and can lead to a gradual loss of awareness. Frontotemporal dementia, on the other hand, tends to affect behavior and personality early on, and people with this type may have very little insight from the beginning.
Stage of Dementia
In the early stages of dementia, awareness is usually stronger. As the disease progresses, a person may lose the ability to recognize their symptoms, their surroundings, or even the people close to them.
Personality
Some individuals tend to avoid difficult topics or respond to stress with denial. For them, refusing to admit that anything is wrong may be a way of protecting themselves emotionally. Others may be more open and willing to talk about changes, especially if they feel safe and supported.
Family Environment
People surrounded by patient, supportive loved ones may feel more comfortable discussing their challenges. In contrast, those who feel criticized or dismissed may retreat into silence or denial about their diagnosis.
Mental Health
People who are already dealing with depression or anxiety may be more focused on the difficulties they’re facing and, therefore, more aware of their memory loss. On the other hand, some may shut down emotionally and stop acknowledging what’s happening around them.
How Do You Tell Someone They Have Dementia?
Communicating with someone who may or may not understand they have dementia can be one of the hardest parts of caregiving. It’s important to speak with honesty and respect, while also being gentle and sensitive.
When telling a loved one they have dementia, try to choose a quiet moment when the person is calm. Speak slowly and clearly, using simple words and short sentences. Avoid using medical terms unless the person has already expressed understanding of them.
Reactions to these conversations vary. Some people may feel relief at having an explanation, while others may become confused or upset. If they deny the diagnosis or forget what was said, avoid correcting or arguing. Instead, return to the conversation gently at another time to reduce frustration for both of you.
How Do You Support the Emotional Well-Being of People With Dementia?
Living with dementia can be confusing and frightening, often causing feelings of anxiety, frustration, and loneliness. Here are some key strategies caregivers can use to promote the emotional well-being of a person with dementia.
Set a Schedule
Establish consistent daily routines. Familiar schedules provide a sense of security and reduce anxiety by setting predictable expectations. This structure helps the person with dementia feel more in control and less overwhelmed by daily uncertainties.
Be Social
Encouraging social interaction with family, friends, or support groups helps combat feelings of isolation and promotes a sense of belonging. Helping the person with dementia engage in meaningful activities, such as music therapy, art, or reminiscence exercises, can stimulate positive memories and improve their mood.
Be a Good Listener
Listen carefully and validate the person’s feelings, even if their concerns seem confused or repetitive. Responding with kindness rather than correction helps build trust and reduce frustration.
Caregivers should also watch for signs of depression or heightened anxiety, which are common in dementia. These signs may include statements like:
- “I don’t know what’s happening.”
- “Why do I have to keep repeating myself?”
- “I just want to go home.”
- “No one listens to me.”
- “I feel alone.”
These expressions often signal emotional distress and should be addressed with care and understanding. If the person’s emotional state worsens or persists, seek professional help to ensure they receive the necessary support and treatment.
Elder Care Alliance Helps People With Dementia Navigate Care
Whether a person with dementia knows they have it or not, caregivers and family members should learn more about how the disease affects self-awareness. Understanding these challenges is key to providing the best care, and that’s where Elder Care Alliance can support you. Take our care needs assessment today to get guidance tailored to your family’s situation, which can make all the difference in helping someone you love feel seen, supported, and safe.
