Dementia is a progressive disease that affects an individual’s memory, thinking, and behavior. It can be very isolating, as people with dementia may feel confused, frustrated, or scared while struggling to understand their surroundings. 

By taking the time to understand their experiences, we can help them feel more comfortable and secure, enabling them to maintain their independence for as long as possible. It also allows us to communicate with them more effectively and avoid misunderstandings or conflicts that could harm their well-being. 

Though everyone is different, we’ll explore what it can feel like to live with dementia and offer insights for those supporting someone with the disease (e.g., spouse, child, or caregiver).

What Does Dementia Feel Like?

You’ve likely noticed changes in your spouse’s or parent’s behaviors, such as

  • Losing things and not being able to retrace steps
  • Difficulty communicating, problem-solving, and planning
  • Memory deficits that disrupt daily life
  • Poor judgment
  • Confusion and disorientation
  • Difficulty completing regular tasks
  • Repetitive speech or actions
  • Wandering
  • Difficulty with motor skills

By showing empathy and compassion, we can help to improve people’s quality of life and provide them with the dignity and respect they deserve. Therefore, let’s dive deeper into a few of these symptoms to help us understand what it’s like for the other person.

Confusion & Frustration

Memory loss can be incredibly frustrating and confusing for those experiencing it. Imagine not remembering important events, people, or even your name. Such an experience can lead to anxiety, depression, and isolation. 

If you start to feel annoyed or frustrated when your spouse or parent cannot recall specific details, remember that your loved one is feeling those same emotions, possibly even more. Therefore, patience and understanding are crucial. 

To support them, you might use memory aids, such as notes or reminders, which may help them stay organized and feel more in control.

Fear & Anxiety

For many people with dementia, the fear of losing their independence can be overwhelming. They may also feel like a burden to you or worry about being placed in a nursing home. 

It is essential to reassure your loved one that you are there to support and help them maintain their independence for as long as possible. 

Try encouraging them to participate in activities they enjoy and find ways to adapt their living environment to make it safer and more comfortable.

Isolation & Loneliness

Social withdrawal can lead to feelings of isolation and loneliness for your loved one. For example, they may struggle to communicate or engage with others, leading to disconnection from the world. 

As a spouse or caregiver, try to find ways to help the person stay connected with others, whether through social activities, support groups, or simply spending time with family and friends. 

By providing opportunities for social interaction, you can help your loved one feel less alone and more connected to the world around them.

Emotional Highs and Lows

Your loved one may feel happy one moment and then suddenly become angry or upset without any apparent reason. These mood swings can be challenging to understand and manage. However, it’s important to remember that they are a symptom of the disease. Therefore, they are not a reflection of your loved one’s true feelings. 

As a caregiver, it’s essential to remain patient and understanding and to provide a safe and supportive environment for your loved one to express their emotions.

Do People with Dementia Know They Have It?

Though a common question, the answer is not always straightforward. Some individuals with dementia know they have the condition, while others may not. 

It often depends on the type and severity of dementia and the individual’s level of insight and self-awareness. However, it’s important to note that even if someone with dementia is not fully aware of their condition, they still deserve kindness, respect, and understanding.

So, when caring for a loved one with dementia, always approach any situation with empathy and validation. This means acknowledging the individual’s emotions, even if you don’t fully understand them. It’s important to remember that your loved one’s reality may differ from yours, and that’s okay. 

By showing empathy and validation, you can help your loved one feel heard and understood, improving their overall well-being. Additionally, remember to take care of your own emotional needs as a caregiver and seek support when needed.

Supporting a Loved One with Dementia

Losing one’s memories, abilities, and sense of self can be an incredibly emotional and isolating experience. Therefore, we must try to understand the emotional toll of dementia and support those affected by the disease, which may include:

  • Encouraging loved ones to engage in the activities they enjoy, such as listening to music or looking at old photos.
  • Providing a safe and familiar environment
  • Maintaining a routine to help reduce anxiety and confusion. 
  • Seeking guidance from a healthcare professional or support group for valuable resources and emotional help for you and your loved one.

With the right resources and mindset, it’s possible to find moments of happiness and connection even amid dementia. 

Have Questions?

For more information on dementia, please browse our collection of articles and resources or visit the Alzheimer’s Association. If you’d like to learn about Primrose’s Memory Care program and the select communities that offer it, find a nearby location or contact us for help! 

Dementia is a complex and challenging condition that affects millions of people worldwide. What does it feel like to have dementia? It can be difficult to understand what it’s like for each individual. However, gaining insight into the emotions and experiences of those affected and finding support can help!