Understanding Dementia: What Is It and What Does It Feel Like?

Have you ever shopped in a big box store located in an unfamiliar neighborhood or city? It looks the same as your local store in so many ways – identical logo, color scheme, shopping carts – but you turn down an aisle expecting to see breakfast cereals, only to find yourself among school supplies. It can be a little disorienting. This unsettling feeling may offer a glimpse into the way a person with dementia experiences the world.
If you have a loved one who’s been diagnosed with dementia, you’ve witnessed the outward effects on your parent’s behavior and personality. But what does dementia feel like from the inside? Understanding your loved one’s point of view can provide insights that deepen your empathy and help you know how best to respond.
What Is Dementia?
Dementia is a set of symptoms that result in cognitive decline. It may be caused by a variety of diseases and conditions, including Alzheimer’s disease, traumatic brain injury and Parkinson’s disease. Symptoms vary, but may include the following:
- Memory loss
- Communication challenges
- Confusion and disorientation
- Difficulty planning and organizing
- Impaired visual or spatial abilities
- Personality changes
- Depression
- Anxiety
- Agitation
- Hallucinations
- Inappropriate behavior
What Does It Feel Like to Have Dementia?
It can be difficult to pinpoint what dementia feels like. The experience may be different for everyone. And most people, especially in the later stages, aren’t able to describe what they’re experiencing. Here are some of the feelings reported by people in the early stages of dementia, or by people with temporary dementia due to brain tumors. Keep in mind, your loved one may not experience all these feelings, or they may occur at different stages.
Frustration
Especially in the early stages, a person with dementia may be aware they aren’t using the correct word, that typing has become difficult, or that they can’t recall familiar names. It can be frustrating to find that once-easy processes are now difficult, and your loved one may become impatient with themselves and everyone else. It can also lower self-confidence, and trigger withdrawal from social interactions or favorite pastimes.
Distorted Awareness
Because we perceive ourselves and the world around us through our brains, it can be difficult for someone with cognitive impairment to recognize the changes they’re experiencing. They may not realize their behavior has altered or that their perceptions aren’t based in reality. In fact, you might seem like the one who’s acting strangely, and they may be irritated by what seems to them your unreasonable concern, hovering attention or anxiety on their behalf. There’s a lot of stigma associated with dementia, and indeed the cognitive deterioration can be difficult for your parent to experience and for you to witness.
Confusion and Disorientation
As memory loss and other symptoms take their toll, your loved one may walk outside their front door into surroundings that seem familiar, but don’t quite make sense. The neighborhood they’ve lived in for decades, even their own home, can seem strange and disorienting. This can naturally lead to anxiety and agitation as they lose the comfort of the familiar. Your mom or dad may not realize that the confusion is in their own brain rather than in their surroundings, so they may feel mistrust or paranoia, accusing you and other caregivers of hiding their belongings or moving things without asking.
Inability to Manage Their Body Budget
Psychologist and neuroscientist Lisa Feldman Barrett coined the term “body budget” to define the process through which the brain gets sensory input from the body so it can satisfy the physical needs that keep the body running efficiently. Dementia can disrupt this process, so your loved one may not recognize the signals that warn them they need food, water or sleep. They may feel listless or angry, without realizing that their fluctuating energy level and moodiness can be resolved by eating lunch or drinking a glass of water.
Personality Changes
Changes in cognitive function can make your loved one more impulsive and certain personality traits may become exaggerated. Your always assertive mother may frequently be bossy and impatient as dementia progresses. Behavior changes can make it challenging to identify what your parent is feeling or thinking about. As inhibitions decrease, your parent may hug strangers or make shockingly unfiltered comments. Yet they may also reveal unexpected talents and gifts. Research suggests that the loss of function in one part of the brain can make room for the expression of new abilities; for example, your loved one may suddenly display a talent for art or music.
Personalized Dementia Care at The Ridge
At The Ridge, we understand the challenges family caregivers face and also the beauty and joy that people with dementia can experience in their daily lives. Our dementia support groups provide caregivers with guidance and a network of understanding friends. And our pet-friendly memory care communities create a comfortable atmosphere that fosters residents’ satisfaction, contentment and purpose. Contact us to find out more about living options at The Ridge or to schedule a visit at one of our three senior living communities.