What is it like inside the mind of someone with dementia?

Over 55 million people worldwide live with dementia, according to the World Health Organization. For those with the diagnosis, and the families who care for them, a deeper understanding of what is it like inside the mind of someone with dementia is essential for improving quality of life and compassionate care.

Quick Summary

For someone with dementia, the internal world is a mix of fragmented memories, confusion, and altered perceptions, yet parts of their core self and emotional reality often remain intact amidst the cognitive decline.

Key Points

• Not a single experience: The inner experience of dementia varies greatly and is influenced by the specific type of brain damage and stage of the disease.

• Memory loss is not total erasure: Short-term memory is often most affected, while emotionally charged long-term memories can persist, causing the person to feel they are in the past.

• Perception is altered: Sensory changes, including vision and hearing, can cause confusion, delusions, and anxiety, as the brain misinterprets information.

• Emotions are real, though expressed differently: Feelings of fear, anger, and sadness are common, but brain damage can alter emotional control, leading to overreactions or frustration.

• Behavior is communication: Behaviors like wandering or agitation are often attempts to express unmet needs or internal distress, and should be viewed as a form of communication rather than just a symptom.

• Core self can remain: Many individuals, even in later stages, retain a sense of their core identity, and positive interactions can reinforce their feelings of worth.

A Journey Through Different Mental Landscapes

While the external symptoms of dementia are well-documented, the inner experience remains a profound mystery for many caregivers. Contrary to a common misconception, dementia is not a normal part of aging. It is caused by brain damage that affects the way a person thinks, remembers, and perceives the world, but it doesn't change the person's fundamental self. The experience is highly individual and can change drastically from day to day and between different types of dementia, such as Alzheimer's or Lewy body dementia.

The Shifting Sands of Memory and Time

One of the most defining features of dementia is memory loss. However, it's not a simple erasure. While newer, short-term memories often vanish, older, emotionally-charged long-term memories may remain vivid for years. This can cause a person to feel as if they are living in a past version of their life, leading to disorientation and confusion about time and place. A person with advanced dementia might genuinely believe their spouse is a deceased loved one or that they need to go 'home' when they are already there. This isn't a delusion born of malice; it's a deeply felt reality caused by their brain's inability to update its personal narrative.

The Impact on Senses and Perception

Damage to different areas of the brain can profoundly alter how a person with dementia experiences their senses.

• Vision: They may see things differently. A shadow can be perceived as a threatening person, or a reflection in a mirror might be seen as a stranger. They may be able to see a face but not recognize it as their daughter's.
• Hearing: A person might hear sounds but their brain can't process the meaning, making conversation difficult and frustrating. Social withdrawal can become a coping mechanism for the embarrassment or anxiety of not understanding.
• Smell and Taste: A loss of these senses can lead to a diminished interest in eating, while changes in perception can cause a person to crave excessively sweet or salty foods to compensate.

Understanding the Emotional Reality

Behaviors that seem irrational to a caregiver are often rational responses to the internal experience of the person with dementia.

Common emotional shifts include:

• Anxiety and Fear: Confusion and loss of control over their own mind can be terrifying. This fear can manifest as agitation or even aggression.
• Paranoia: Misplacing an item might trigger a delusion that someone stole it. Their mind struggles to explain the missing object, and a logical (to them) explanation is that they've been robbed.
• Apathy: In later stages, damage to the frontal lobes can decrease motivation and interest in hobbies or activities that were once enjoyed.
• Grief and Sadness: Many individuals in the early stages are painfully aware of their cognitive decline. This awareness, coupled with the inability to properly express their feelings, can lead to depression and distress.

Practical Strategies for Compassionate Care

External Behavior	Possible Internal Experience	Effective Caregiver Strategy
Repetitive questioning	Fear of forgetting, seeking reassurance or a sense of control.	Validate the feeling, don't correct the facts. “It's okay, we just talked about it, and we're safe.”
Pacing or wandering	Feeling of restlessness, searching for something or someone, a need to fulfill a purpose.	Join their walk, offer redirection with a new, simple activity, ensure the environment is safe for movement.
Accusing others of stealing	Brain damage and memory gaps create a need to explain missing items.	Respond to the underlying emotion of loss. Help them search calmly, and have duplicates of important items on hand.
Becoming agitated during a routine	Overstimulation, a sense of being rushed, or misinterpreting a sequence of actions.	Simplify the task into one-step instructions. Remove distractions. Use a calm, reassuring tone of voice.

A Compassion-Driven Approach to Communication

Communication is key but requires a shift in approach. Arguing or using logic will likely only cause more frustration. Instead, validate their feelings and live within their reality. Use simple words and sentences, maintain eye contact, and use gestures to help clarify your message. Humor can often help diffuse tense situations, but never at their expense.

How to Support a Sense of Self

Despite the progressive nature of the disease, parts of a person's identity can remain intact. By promoting experiences of belonging, dignity, and being valued, caregivers can help people with dementia feel like themselves. Engaging with their favorite music, looking through old photo albums, or enjoying a familiar hobby can strengthen their sense of self. It is essential to focus on what the person can still do, not on what has been lost. For caregivers, acknowledging their feelings and seeking support is also crucial for navigating this difficult journey without burnout. For more information on ongoing research and support, consider visiting a reputable source like the National Institute on Aging [https://www.nia.nih.gov/about/advances-aging-and-alzheimers-research].

Frequently Asked Questions

Do people with dementia know they have it?

Many people in the early to middle stages are aware of their memory deficits, which can cause significant frustration and anxiety. However, in later stages, some may experience anosognosia, meaning they lack awareness of their condition.

Why do people with dementia accuse others of stealing?

This can be a symptom of memory gaps. When a person misplaces an item, their brain may create a logical (to them) explanation, like theft, to fill in the missing information. It's often a response to fear and confusion, not a true accusation.

What is it like to experience hallucinations with dementia?

Hallucinations are very real to the person experiencing them and can be visual or auditory. They are caused by changes in the brain and can be frightening. Responding with reassurance and focusing on the emotion behind the experience, rather than arguing, is the best approach.

How do dementia patients feel when they can't remember something?

For those with an awareness of their memory loss, it can be extremely frustrating, upsetting, and embarrassing. This can lead to social withdrawal and feelings of low self-confidence.

Why does a person with dementia seem to live in the past?

Brain damage often affects the formation of new memories while leaving older ones intact. The past can feel more real and more familiar than the confusing present, so their brain defaults to an earlier time when things made more sense.

What is the best way to communicate with someone with dementia?

Use simple, clear sentences and speak slowly. Rather than trying to correct them or reason with them, focus on validating their feelings. Employ gestures and visual cues, and avoid arguments.

Can dementia cause personality changes?

Yes, damage to certain parts of the brain can lead to changes in personality and behavior, including increased irritability, anxiety, or apathy. It is important to remember that this is caused by the disease, not the person themselves.