What Do Dementia Patients Think About?

Dementia causes changes in the brain that affect how people think, but it may not change what people think about. You’re loved one with dementia likely spends their time thinking about the same things you do: What they’re going to do that day, how their family is doing, worries about the future, and memories of the past.

That said, dementia makes it more difficult for people to remember things, which can cause understandable frustration. Most people with early-to-middle-stage dementia are aware of their own memory deficits. As dementia progresses into the later stages, your loved one will have less mental activity in general.^[01] But that doesn’t mean they don’t appreciate companionship or conversation — even if it’s one-sided.

Dementia describes a wide range of degenerative neurological conditions that affect the brain, according to the National Institute on Aging (NIA).^[02] These conditions may worsen as time goes on. The NIA explains that dementia symptoms can be due to “changes in the brain that cause nerve cells, or neurons, to stop working properly and eventually die.”

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While scientists are still working to fully understand how dementia affects the brain, the mental symptoms of dementia are well-recorded.

Here are the most common mental effects of dementia.

Confusion

Your loved one may become disoriented while shopping and accidentally take unpurchased merchandise from a store because they forgot to check out. They may also ask you to give them the car keys because they’ve forgotten that they no longer own a car or drive. At times, they may forget how a family member is related to them, or that they’re married.

As you can imagine, these types of confusion can make your loved one feel nervous, upset, and embarrassed.

Delusions, hallucinations, and paranoia

You might find your loved one, who used to be a nurse, having a delusion that they’re working at the doctor’s office instead of being present for their own appointment. You may find them talking to no one while they’re experiencing a hallucination of talking to a deceased loved one. You could also discover that they have become increasingly paranoid about the good intentions of medical staff or family.

To your loved one, these experiences feel real because of the changes happening in their brains, as noted by Susan M. Maxiner, a doctor at the University of Michigan School of Medicine.^[03]

An incomplete memory of working in a doctor’s office decades ago, coupled with actually being in the doctor’s office for a checkup today, may result in a delusion or hallucination. Your loved one’s mind may fill in past coworkers or patients, and they may try to engage those individuals.

If your loved one repeatedly sees people who are not there and is continually told those people are not in fact present, your loved one may begin experiencing paranoia. In many cases, it’s best to go with the flow and not contradict your loved one.

Denial or anosognosia

Bad news is difficult to accept, even with normal cognitive function. Accepting a dementia diagnosis can be especially difficult for a person with dementia and may take time. Your loved one may express denial as they are processing this new information.

People diagnosed with Alzheimer’s disease may also experience anosognosia, which is more than just denial and is its own complex condition.

Aggression and overreaction

The inability to perform normal tasks with ease may cause your loved one to exhibit what may seem to you like outsized frustration. Imagine one day being able to vacuum the house with little difficulty and the next not being able to locate the vacuum, let alone remember how to plug it in and turn it on.

As your loved one forgets the basic mechanical and technological processes everyone else takes for granted, the experience of dementia can become magnified and build on itself. These reoccurring situations, coupled with a new difficulty verbally expressing their confusion, can foster fear and frustration that can result in aggression.

Read more:End-Stage Dementia: What to Expect and How to Offer Care

People with dementia often also experience physical changes, as the body and brain are intrinsically linked. Changes in how your loved one experiences the world with their five senses are rooted in the same changes in their brain that affect their memory and mood. These changes can be very disorienting and may cause even more confusion, delusions, or aggression.

As her senses begin to jumble, a person with dementia may spend a good portion of her thought life trying to sort out what she’s experiencing. She’s likely to become frustrated as she finds it more and more difficult to interpret her confused senses.

Here are some of the most common ways dementia affects the five senses.

Hearing changes

Hearing loss and dementia frequently occur together, according to a 2019 study from the University of Nottingham.^[04] Additionally, “hearing loss can make the brain work harder, forcing it to strain to hear and fill in the gaps. That comes at the expense of other thinking and memory systems,” according to the Johns Hopkins Bloomberg School of Public Health.^[05]

This lack of hearing separates a person with dementia from others, which can lead to feelings of isolation and alienation: It can be uncomfortable for your loved one to tell people they can’t hear them. Your loved one may avoid social situations altogether to prevent feelings of awkwardness. It can be difficult for your loved one to build and maintain relationships with hearing loss.

Loss of smell and taste

Imagine a life in which you can no longer taste the full vibrancy of your favorite foods or have difficulty smelling flowers on a spring day. This could be part of your loved one’s new reality with dementia. Losing the ability to smell — also known as olfactory dysfunction — is common among those with dementia.^[06]

Additionally, people need to be able to smell to be able to taste. If your loved one loses the ability to smell, it can be difficult for them to taste foods, too.

Loss of mobility

Your loved one may become increasingly nervous or unsure when moving or performing normal tasks. They may also feel embarrassed or frustrated when they cannot accomplish tasks that used to be easy for them. It’s common for older adults with cognitive impairments due to dementia to experience a decline in mobility and an increase in disability.^[07]

You may notice your loved one experiencing the following as their mobility declines. They may trip often over objects or a pet when walking at home, find it difficult to hold and use utensils when eating, and may slow down their walking speed to compensate for leaning or unsteadiness.

Vision changes

Dementia, especially dementia with Lewy Bodies, does seem to affect visual perception. Studies in 2022 concluded that Lewy-body dementia causes a build-up of Lewy bodies in the parts of the brain that process visual information.^[08] This means that Lewy body dementia patients may actually see things differently, or not see things at all, because of their dementia.

People with other kinds of dementia, like Alzheimer’s, may have the same visual perception as they did before, but their brains may not be able to process that information. For example, they may see a face but may not recognize that face as their daughter’s.

Vision loss in dementia can be a health and safety issue for your loved one because it increases the risk of falls, decreases the ability to move around safely, and makes it more difficult to learn and understand an environment, according to the Wisconsin Council of the Blind and Visually Impaired.

Read more:Memory Care Activities That Keep Seniors Active and Engaged

Dementia affects everyone differently. But there are many emotional challenges caused by dementia that may progress throughout the different stages of the disease. These changes vary widely based on the individual, their overall health, and the areas of the brain affected by the disease. In early-to-mid-stage dementia, most dementia patients are aware of their condition.

“I started forgetting small things more, like recipes I’d known forever … It’s scary that I can’t fully trust myself. I’ve been so independent since my husband passed,” said Annelie Marsaili*, a person with early-to-mid stage dementia. “But now I have to rely on other people for things like driving, appointments, even going with [my caregiver] to the grocery store. I can still remember my family and all of that, especially my kids.”

Marsaili’s experience is not uncommon among people with dementia. During the early stages of the disease, a dementia patient is still coherent enough to know they have dementia. As the disease progresses into the final stafes, your loved one may not even remember that they have dementia.

People with dementia document and share their lives through a variety of mediums.

• Social media helps people with dementia and their caregivers share their experiences through hashtags, including #ilivewithdementia and #dementiaawareness. You can read posts with these hashtags to have a look at how ordinary people may be living with dementia.
• Documentaries like the following films present first-hand accounts of dementia: Dementia: A Month in the Life, Glen Campbell: I’ll Be Me, The Gerda That Remains
• Books are an excellent way to experience first-hand accounts of dementia. If you enjoy reading, you should add the following works to your reading list:Before I Forget: Love, Hope, Help and Acceptance in Our Fight Against Alzheimer’s by B. Smith, Dan Gasby, and Michael Shnayerson, Just Love Me: My Life Turned Upside Down by Alzheimer’s by Jeanne Lee, Memory’s Last Breath: Field Notes on My Dementia by Gerda Saunders, Somebody I Used to Know: A Memoir by Wendy Mitchell

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You can use dementia simulations to feel what it’s like to have memory loss. With the rise of more creative technologies, caregivers have more options than ever before to experience what it’s like to have dementia. Through VR devices, clever apps, and videos, technology is helping caregivers understand dementia symptoms.

The use of a VR dementia simulation as an educational tool shows promise. It may even improve a dementia caregiver’s competency and empathy, according to a study in Nurse Education Today.^[10] One company, Embodied Labs, creates VR experiences for Alzheimer’s disease as well as Lewy body dementia and Parkinson’s.^[11] A 2019 VR Awards Finalist, Galatig’s Dementia First Hand dementia simulation works with Oculus Rift headsets.^[12]

If you don’t have access to VR devices, you can still access a dementia simulation through your web browser. Alzheimer’s Research UK offers YouTube videos that allow you to experience daily life as person with dementia. You can see how a person with dementia may experience a walk through their neighborhood or tasks inside their home.

As a caregiver, you are better equipped to understand your loved one’s experience when you have had a chance to see the world through the eyes of a person with dementia.

This unique knowledge will help facilitate caregiving techniques and best practices for dementia caregivers:

• Communicating with compassion. Your newfound insight can help you understand that unusual behaviors or actions are the disease — not the person. You’ll learn to employ compassionate caregiver strategies to cope with dementia behaviors.
• Building a daily routine. While looking at the many challenges facing people with dementia, you can see why a consistent schedule may make it easier for them to navigate their day. You can also develop a dementia care plan to better meet their unique needs at every stage of disease.
• Creating a support network for yourself. As the disease progresses, caring for your loved one may become increasingly challenging as their abilities and independence decrease. Caregiver burnout is a serious issue, since it can keep you from providing quality care. Prevent this by connecting with caregiver support groups specifically for dementia caregivers.
• Prioritizing self-care activities. As a dementia caregiver, you should approach your caregiving journey as a marathon, not a sprint. You have to sustain yourself for the duration. Caregiving can take a toll on your health, so it’s important to maintain it by exercising, eating well, and continuing to go to your own medical appointments.
• Planning for the future. Do your best to understand your loved one’s future wishes before it becomes too hard for them to communicate. You may want to suggest that they create an advance directive, a power of attorney, or other legal documents before they’re considered mentally incompetent. You can also help by gathering important documents that may be essential for future reference.

Read more:Talking to Family When You Can No Longer Care for an Elderly Parent

Caring for a loved one with dementia can be stressful and challenging as a caregiver. As time goes on, you may want to consider in-home care options or look into memory care communities for your loved one. The secured memory care units in many memory care communities combine essential safety elements with comfortable, human-centered design approaches for peace of mind for you and your loved one.

If your loved one or their spouse served in the U.S. military, they may be eligible for memory care resources through the U.S. Department of Veterans Affairs. If you are unsure how to start this journey, speak with the Senior Living Advisors at A Place for Mom for free to explore the possibilities of in-home care and memory care options in your area.